IF YOU REALLY CARED ABOUT TN SUFFERERS YOU WOULD ENCOURAGE THOSE WHO HAVE SILVER DENTAL FILLINGS TO GET HEAVY METAL TESTING. ALSO MAY HAVE HERPETIC LESIONS ON NERVE/GANGLION AND TREAT W VALTREX. THE SURGERIES AND MEDS ARE AS BAD AS THE TN.
I have trigeminal neuralgia I am 13 years old it made me have seizures n lose my walking abilities I am currently on my 4th month in the hospital and I have surgery this week please pray for me
Mariah Walker Oh my goodness sweetie I am 65 with it I cannot imagine being 13. I have been going to a wellness chiropractor, I finally went after I got on Medicare. He did a laser and some adjustments and now I am on also detoxing and learning to eat plant-based, just thought I would share what has helped me I have gone from a 10 in pain to less than a one !!! I have not wanted Christmas for the last three years and I finally feel some joy this year because I am not in pain
Truly words cannot describe this pain. I have had chronic pain for years but nothing comes close to this. Mine is caused by a tumor but I've been told surgery is possibly too dangerous. People just don't understand something so simple as taking a sip of water can set it off. Then it goes away just as fast as it came. The comment in the video about the skull splitting open or an ice pick going into your brain is it good description. I've been in chronic pain for about 20 years. The TN started six years ago but would go away years at a time. Then last year it came back to stay. I had gamma knife and it went away for two months. Now back worse than ever with the added sypmtom of the fire inside that was described in the video. All of these years going through pain and painful procedures, i have never vocalized my suffering but with this, i scream, i fall to my knees, i punch my body during an attack. If there is a hell, this it. And to add insult, people think you are being overdramatic or faking or cant handle pain. Not having emotional support is so isolating. To anyone reading this, you are not alone, i believe you, and i am so sorry you are suffering. You do not deseve this.
My first attack was 2 days before my 18th birthday. I'm 32 now. I've tried: Many medications. MVD surgery. Botox. Acupuncture. Creams with hot peppers. Face patches. Cervical chiropractic care. Diet therapy. Vitamin therapy. Mirror therapy and meditation. Laser therapy. Marijuana. Good old fashioned alcohol. I am definitely forgetting a few things. We need a cure. Or at least a better link to remission. I'm really tired.
Me either i have been in this pain now since 2019 and its rare in my country in malaysia every time the pain comes i really feel like taking my life like i can’t live with this pain
I have it for about 2 years now, I have both type1 snd type2 and it’s so bad. This pain need you to be toughest of people to endure and you also need support from people around you. I wish all the best for other people with this pain and we need to keep fighting.
@@Sintrania yes indeed need good system support for u to endure your pain but in my country this is rare not everyone know when u try to explain they don’t really get it so i have to go through the pain alone thats make me wanna cry every time the main attack 😔
@@sailormoon5018 i can feel that, most people don’t understand it since it’s not something easily explainable as well as people don’t usually see us when we are in pain. Please stand strong and remember we are not fighting alone.
Total government funded surgery for this is NEEDED. Recently went over the top with medication but just damaging myself, & it never got rid of 100% pain anyway
As a doctor, the patients I've seen who suffer from this disease always stuck with me the most, and I find myself looking up videos about people who suffer from TN so that I can hopefully be able to recognize it whenever I see it, because it is very much true that it goes ignored and unnoticed by health care professionals all the time, for decades in some cases. It takes a lot of courage and mental fortitude to continue the fight against this disease, I pray and believe in you all.
I’m 22F and I had TWO doctors diagnose me with this, without the other knowing in the same day. This was yesterday. I was so sure I was going to have to over explain for anyone to take me seriously, with my being so young, and hearing how rare this is beforehand, but they both did and I was so ecstatic I finally was going to get help. One was a female doctor at Fastmed, and the other was a Male Physician at My local emergency room. I’m so happy I was diagnosed correctly, and so quickly. I only had to handle about 4 days of intense waves of pain, lasting 2 minutes every hour, preventing me from sleeping. Who knew a person could make it through almost 3 days only sleeping about 5 minutes 😅. I thought I had an infection in my jaw. At the ER, he claimed he had only diagnosed about 3 people since he had started his career, with this disease. I believe I was the youngest so far. I know I’m lucky I was given a medication and diagnosis so soon. Others just aren’t as lucky, sadly. I’m now on an anticonvulsant, and pain killers. I’ll be visiting a neurologist soon to find out just how serious My case scenario is. Especially considering mine is suspected to have been brought on by a tooth extraction. I’ve heard the nerves if caused by my extraction, may take up to a year to heal... I really hope this isn’t permanent for me.. it takes extremely strong women and men to handle this type of pain... and I just don’t think I’m cut out for this. Anyways... I’m writing you this comment to say. It’s working. People are hearing about this more than around the time this video released, and to thank you, for actually taking the time to familiarize yourself with these uncommon/rare conditions. It’s because of people like you, that we at least can stand a fighting chance combatting this with medications early on improving our quality of life before it becomes overwhelmingly draining.
Hi there! I know I'm about a year from when you wrote this, but I can tell you this, in my experience: It's been an up and downhill battle, mostly in a sense of it being uphill, then tumbling down (lol...to have a sense of humor kind of helps). There are days where it's a light "crawl" in certain spots, and then, there are days upon days, nights upon nights, where I literally just want to rip my flesh off. When a "flare up" occurs (for lack of better terminology at this time), it's NOT like having a cut on your arm, or a broken leg...you KNOW where that pain is going to come from. With TN though, it's ALWAYS random where it strikes. I think for my case, I have a nerve that had gotten lodged between two blood vessels (not sure how), that, over the years (17 to this time), as the blood vessels course blood through, they have been degrading the myelin sheath to a point that (as an example) is like a frayed USB cord. The best example I can give is exampled here in this diagram: www.mayoclinic.org/-/media/kcms/gbs/patient-consumer/images/2017/10/16/14/41/mcdc7_nerve-myelin-sheath-guillain-barre-8col.jpg ...with the exception that it's not guillain-barre disease, the effects are the same (as is with MS; amongst others). I have more I can explain, but typing it, I'd rather speak it aloud! lol #ThisTooShallPass
Thank you for this comment. I have TN and it has been a vicious cycle of who to go to next. It feels like I am chasing my tail and that we, with this disease are always looking for answers.
I wish these brave soldiers had the answers I have found. I currently have trigeminal neuralgia and I am healing it with Medical Medium information Anthony Williams. I hope someone reads this and finds answers to this debilitating disease in his books.
Words could never describe the pain I suffered.i would rather die than go through that again,Tegrotol kept the pain under control for quite a few years but then it stopped working,Surgery was the only answer,I had peace for the first time in years,the right side of my face is numb now,but I can put up with that. I'm forever grateful to that surgeon and his team for what they did for me.
Kenny Williams..I'm sorry I just noticed your comment, I normally get notifications if someone has replied to my comments but I didn't on this occasion..I find it hard to find the right words that would explain the pain I had, it was bad enough for me to contemplate putting an end to it all, I could barely talk or eat, clean my teeth or do the simple everyday things, even a stormy day would have started the excruciating stabbing pain down the right hand side of my face, I could go on all night trying to explain it all, but that's part of what it was like..I do feel for you if you are suffering from this..Again I apologise for the delay in answering your post.
I've been on tegretol combined with gabopenton for about a year , switched from carbamazapine, still have pain 🤬😴 did u have the MVD ? And was your t.n natural or caused by damaged ? Been fighting with this for ten years ... Need help but scared of the MVD as I have 3 children and a wife who need me to work 💪
Microbe mania. First of all I sympathise with you and hope you will find peace from this dreaded pain. No I didn’t have any previous injury to the Brain it happened all of a sudden with terrible stabbing down my face and into my back teeth, I foolishly went to a dentist and had my teeth removed on two separate occasions, big mistake. To cut a very long story short after years on medication I was taken in for surgery where they go into the Brain at the bottom of the skull you can see the procedure here on CZcams..I never felt that pain again. I will never forget it though I was alone and in a very dark place..I will say a little prayer for you that you will get peace..Best wishes to you.
@@taraann7753 yeah I know all about it lol , met with the surgeon but I don't know about it ... I have bad luck the micro vascular decompression with a twist , they sever the nerve and see what happens
I can tolerate the burning most of the time. But when the stabbing and electrical shocks start, I'm on my knees crying like a baby. I am thankful that mine comes and goes. I couldn't deal with this pain if it never went away. I'm lucky that I usually go for months without pain. My attacks usually only last two or three days, however every time it comes back the attacks lasts longer. I've been dealing with my most recent episode for a week and it's been the worst one yet. Praying for relief for all those suffering this horrible disease.
Kyle Norman My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
Kathy Costelloe thank you, I'm doing the best I can imagine. A couple of days ago I went to walk in clinic. Waiting, I thought "this is corporate! Duh." But I saw the Dr anyway. Just as the bored 'oh, a drug seeker' affect presented and she mentioned anticonvulsants, I rattled off the dose of a 13yr sufferer (3600mg Gabapentin, 400mg Carbamazepine, 30mg Baclofen + 8 other meds to combat those). She was shocked. We discussed the possibility of placebo. We talked about the risk of losing control of the pain and the very real possibility that I'd never rein it in again... She gave me the names of 3 local neurologists that may help me. She did not charge me for the hour she spent with me. "Don't give up. Push, insist, take the evidence that you brought here today. Your research is sound. Do not take no for an answer!" Yep, thanks to her, I'm doing pretty damned well.
This is the worst thing ever to go through. I've had this for 6 years now the pain is awful and getting worse every day. I just all the time but I also have flare ups as well. This time is the absolute worst I don't even want to lift my head off the pillow or away from the back of the couch
@@cathyholloman9797 where do you live? I had a radiation treatment in Birmingham alabama that got rid of 95 percent of my pain. I only have a little burning from time to time.
I literally just sobbed through this video. My TN started 5 years ago. It's the worst pain I've ever had. Worst than natural non medicated child birth. I hope they find a real treatment. Bless all of you.
Torture is my description of Trigeminal Neuralgia' and jus a few days ago i discovered this terrible pain has a name, i've suffered 31yrs! It has another name as well, suicide pain and i pray we all hang in there and seek help + keep seeking.
gregory neuhierl My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
@@Chonkybeatz hi post you wrote to years ago regarding cannibals oil for your trigeminal neuralgia. I find marijuana does not help me I have a typical trigeminal neuralgia.. type two that started after surgery many years ago dental surgery. Can you please tell me if you are still getting relief? Also what type of/brand of oil are you taking I would like to try it. Thank so much
Tears are falling down my face for the sufferers of TN, including a dear friend of mine who had decompression surgery yesterday. I pray she and other TN find relief for their pain.
I was diagnosed with Trigeminal Neuralgia in 2013. Things seemed to be going great,but 3 years later,it came back hard. I started missing lots of work because the pain was unbearable. I was put on 4 different meds until finally gabapentin took the edge off. Now,in 2019 I have been attacked every day with excruciating pain. Missing days of work,working in severe pain. I'm tired of being in constant pain and I'm ready to give in to surgery. My neurologist doesn't have an opening until December!!!! How am I supposed to bear that much pain until then? I was ready to end everything on numerous occasions due to the excruciating pain. I'm praying that God steps in and removes this from my life. To all who are suffering,we need to stick together and keep the faith. Let's claim this victory.
@Laney Stone Hello,I did have the surgery on 9/20/2019 and I thank God for it. It changed my life and I've been free of pain thus far! Please consider it and I assure you that you won't regret it! I'll be praying for you because that excruciating pain is horrible! God bless you 🙏🏿 ❤️ ❤️
While I don’t have trigeminal neuralgia , I know exactly how you feel. I too suffer from invisible disability, I am fully legally disabled, but if you look at me and didn’t know me you would assume I am perfectly healthy man, but you would be dead wrong. I won’t get into my issues too much, suffice it to say I’ve been in severe crippling agony for the past 28 years of my life. I am now 48, can’t work, and have 11 chronic and agonizing diseases that are completely destroyed my life in every aspect possible, yet people take one look and say you look terrific, or accuse me of faking all of it so I don’t have to go to work, I wish to God I could go to work, instead of facing this hell. I actually have never heard of this disease before, tonight is the first time I’m hearing about it, and I feel so so sorry for every single person that suffers from this. There’s nothing worse than having to deal with such a crippling illness, but then to have people accuse you of faking it makes it that much harder to live with. There have been many many days that I wanted to kill myself, including today, because you reach a point where the pain is the only thing you can think of. When you’re in crippling debilitating agony, and have people tell you that you’re faking it, just pushes your right over the edge, who wants to live like that? I’ve never attempted suicide yet, but I assure you that if I try I will succeed, because I in no way want to live like this anymore, and please don’t judge until you’ve been in our shoes. My heart goes out to all these people! It may sound crazy, but there are many many times I wish I had been amputated limb, a disability that people could actually see, so I wouldn’t have to face a barrage of stupid question, and ignorant looks. I beg all of you, have compassion for these people, because you have absolutely no idea of the hell they are forced to endure on a daily basis. All my hopes and compassion to you all, You’re not alone😰❤️😰
God bless you and everyone, just know God sees all and he will heal everyone. Stay in faith and pray together, "If two believe "it shall be done. I am so sorry for everyone's pain, I dream of a world no one has any type of mental or physical pain, God take it all away, from me, from him, from them, from everyone. This is what Jesus did for us. I love you all...
This brings tears to my eyes . I was diagnosed last may of 2022 , I had migraine for the longest time but it’s nothing compared to TN. I this is life changing, I hope they find a real cure.
TN warriors you are my family!! Watching this I see and hear people who feel what I do!!! I hate that we know this pain but I am happy to hear I’m not alone!!
flamingo My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
@@gr8H8er If they put you in jail they’ll have to treat your condition...I’m so sorry for all you’re going through. I know what it’s like. I like what you said about you would never wish this pain on even your worst enemies, (vile and cruel public safety threats notwithstanding). EXACTLY!
@@AJ-kv1po me too, Atypical Two decades after dental surgery. So much pain wondering how you’re doing if you tried anything else that may have worked? I hope you’re doing better I’m just miserable stress makes it worse when it’s already worse to begin with if you know what I mean.
Hi saw your post From four years ago regarding your failed MVP for a typical TN. I have the same thing got it 15 years ago after dental surgery nothing helps I take pain meds to take a tiny edge off but mostly in severe pain 24 seven. Wondering how you were doing? And if you have tried anything else that helped? I am in Southern California, I tend to stay offsite because it just depresses me but I’m so desperate I’m at it again. Look forward to hearing from you.
I WATCHED AND SAW MY SISTERS FACE ON EVERY SINGLE PERSON WHO TOLD THEIR STORY. SHE COULD HAVE WRITTEN THIS AS EVERYTHING THEY SAID I HAVE HEARD FROM HER. IT HURTS HER TO BREATHE, WALK, SIT, EAT, SLEEP AND IT GOES ON AND ON. SHE IS SO STRONG AND BRAVE JUST LIKE THESE PEOPLE IN THE VIDEO. SHE HAS HAD BRAIN SURGERY AND THE DOCTORS ARE TRYING TO FORCE HER INTO THE GAMMA SURGERY. NO THANK YOU, LOTS OF VERY BAD SIDE AFFECTS AND IF YOU CAN BELIEVE THIS, THE PAIN COULD BE WORSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I LOVE HER SO MUCH AND WANT HER AND ALLLLL OF YOU OUT THERE TO GET THE PROPER HELP. LINDA MC BRIDE
linda mc bride My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I've been suffering with this for years now - yet I've just been diagnosed this week 9/25/2022. I've been treated for TMJ (surgery in 1998), sinus issues, and Migraine but nothing helps... I've been lost friends and family members because they didn't understand why I "looked fine" but was always "complaining" about pain that no one could explain...
I cannot believe that in this twenty first century, with all the doctors, specialists and amount of money these pharmaceutical companies make out of our pain and misery that nobody can help me and you with this pain 24 hours a day, every single day, actually the pain dissipates slightly when you also hear the noises all the time. If I gave up it would all be gone but so would I be, I have no friends left, just the pain and the noise, I think they are my friends. !! x
I've had Trigeminal Neuralgia for the last 5 years or so. In the last couple of years, it's taken nearly everything from me: my ability to work, my happiness, my marriage, my health, and I am starting to feel like my sanity as well. I leave the house maybe twice a month. My pain is constant, severe, and daily. Now, I have severe anxiety about being in public or even stepping outside my house. I save what little strength I have to take care of my son, whom I have full custody of. I've tried every medication my insurance will pay for and had an injection directly into the nerve. Nothing helps much, and nearly every medication makes me severely drowsy and a virtual zombie. I totally understand why they call this "The Suicide Disease"...the pain is so severe that there are times you'll do anything to escape it.
Nick The Dad My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I won't give up this will not have my life😕 these videos keep me encourage. I feel like im not alone anymore thanks for your video support👌 peace and blessings to all the suffers.
I'm so scared...... After seeing you guys story, is devastating to me. :( just diagnosed, thought it was dental issues when it started, 2 months ago. It makes me wanna jerk my top and bottom left teeth out!!!! It's just a deep hard pain and also in my jaw. It feels like someone punched me in my face. Dr has put me on gabapentin and trileptol. The girl that lost her car and apartment and savings... Im so very sorry. It is scaring me to death.
I am a medical student and often look for patient testiomonial videos to better understand diseases. "My kindergardner sometimes sets it off," I will never forget that. I am so sorry you have to go through this.
Regular chiropractor adjustments after first being diagnosed with TN have completely cured me. I was in the ER 3 times in 1 week with debilitating pain, and nothing they did helped. My mom recommended seeing a chiropractor, and i'm SO glad she did. They learn all about TN in school, and know how to treat it. If you're reading this and suffering, please give it a try. I hope it works as well for you as it has for me!
Thank you for your courage and for sharing your experiences. I shared this video with my family so they understand why I feel the way I do and am the way I am. Because I ‘look’ ok doesn’t mean I am.
I was diagnosed with TN 18 years ago. Horrible Horrible pain! People don't understand. That is so correct. The shocks of pain are unbelievable. People who say you look great don't understand what we go through. I turn my head to fast and wham! It hits.
Thank you , this video felt like people were explaining something is so hard to put together for me. Its so hard to explain to people how it feels and to find words to describe it . My wish is to be normal and be a normal mother to my kids , TN please let us live pain free days 😢🙏🏽
My heart goes out to these people. I was diagnosed around seven years ago after a misdiagnose of a sinus infection. Fortunately my pain, while extremely intense as these people mention, is less frequent and more seasonal. Had a rather difficult bout a few days ago and would have considered anything, including invasive surgery just so I could get some relief. And yes, unless you've experienced TN pain, it's very difficult to explain to the non-sufferer.
I relate to all of this. I've had it for 15 something years now. This made me cry cause it's me. I am living through this. Everything they say is true and I'm living through this. I have an MRI in middle of May to determine what the next step is.
We're so glad you are better and pain free. Please consider visiting our website to learn more about what we do for those still in pain www.facingfacialpain.org
@@michellezvonik7004 so far, from what I’ve heard from others and have found around. Bee venom facial masks help sometimes, because the tingling sensation confuses the nerves. Same as putting vix vapor rub on your face in areas where it hurts. I haven’t tried either of these yet. I’ve tried applying non medicated, air activated, sticky heating pads women use on their periods, on my face. I know it sounds weird, but oddly enough, it’s brought me some relief.
Thankyou for this video. I have TN and have felt so alone and no one understood what I was going through. It’s a debilitating disease and has bought me the depths of despair. I was finally officially diagnosed on the 16th of December 2020 and had MVD surgery 3 weeks ago in Australia. My recovery is going very very slow nausea and dizziness are my two biggest problems right now. I still have some pain but I am really hoping for the best. I really did feel alone until roughly 15 minutes ago so thankyou so much.
For anyone suffering, I know they’re illegal in most places, but I have a strong feeling that psilocybin mushrooms can help. I also get cluster headaches, the pain is identical to me so maybe my headaches are more TN. Mushrooms stop my headaches. Even a micro dose. Just wanted to plant that seed.
That is so interesting, we have been watching a couple documentaries about all of this. I have TN and we have discussed whether it would work. Not saying we are going to try it, but definitely have thought about whether it would work for neuralgia's
@@mv8908 that’s awesome! They recommend prolotherapy for hEDS too but I’m skeptical about it because it literally means they damage your joint more so it won’t be so flexible and I’ll have to pass on that because I can’t help but think it’s incredibly painful in a place that’s already painful.
I also suffer with TN and cluster headaches. I think the pain is equal except for cluster headaches if you catch the headache before it comes on then imigran tablets work great. Imigran medication doesn't work for my TN though. Not been able to try mushrooms but weed works well
@@ieatlotsoftoast I still need to experiment with the mushrooms for my TN, they’re hard to find though and I never have any $$ for them. That’s a good point, and I’ve noticed the CH meds don’t work for me typically so maybe I actually have occipital neuralgia instead of CH?
Trigeminal Neuralgia 5 years. GAMMA KNIFE Oct 26, 2023. 😢 my story a unique one as the Dentist left an object in my jaw that caused my facial paralysis. I also suffered a CSF leak out my left nostril and had an endoscopy surgery to repair a Crack in my skull. I would love to share my story in hopes it begins healing and help others. 🙏
I had my FIRST TN "Attack or Flare up" about 2 weeks after My 26th Birthday... it came out of NOWHERE.. One Minute i was Talking to My Partner, Then I Just Dropped and started SCREAMING AND WRITHING in Pain.. it felt like my jaw, My Face AND My Head had been hit by a bolt of lightning... Nearly an hour later it calmed down and i was just Laying in My Shower Crying with My Partner Holding me... i went to My GP and as soon as i told him What happened and how it felt he INSTANTLY put me on Tegratol first on 400mg then up to 800mg, and im.also on Lyrica JUST so i can sleep at night.. i havent had an attack in the past week.. i need to go for an MRI to Discover what type of TN i might have and what options i have then.. for me so far ive had 3 MAJOR Attacks where i couldnt think straight, couldnt talk, Couldnt stand... all i could do was writh, Wail, Beg Plead and Cry... im scared of my tomorrows, When BEFORE.. i used to LOVE what tomorrow Brang...
I've been dealing with this for a little over 8 years now. I've been on just about every medication there is and have had horrible side effects to just about all of them except for the one I've been on for several years now. It.....helps... but it certainly doesn't get rid of it by any stretch. What is worse is that I was diagnosed with it a few months before my youngest child was born so he has never known me not to be in pain and he now has a phobia of storms (one of my biggest triggers is changes in barometric pressures). Flying is... well I am in so much pain that I have to take enough meds to knock me out and even then I am semi-conscious and am clutching my head in horrendous pain the entire time, but am otherwise unaware of anything else going on around me. Apparently I tend to scare the crap out of the flight attendants. Even driving for too long, or over terrain that is too hilly or large bridges can mess me up pretty bad. Opening the oven and the sudden change in temperature... just so many things that you take for granted prior to this condition and now you realize just how much they effect you. When the migraines hit people at work ask me all the time how I can stay at work with a migraine and I respond, "with my TN a migraine is a good day, cause it could be so much worse if one of the other two branches flared up instead". I have days I can barely talk, days I can't really eat. So yeah, a migraine is no big deal. 🤣
Omg I am so glad to find this video. I finally found other people who have my exact pain Electrical socks shooting pain inside your check from the ear to the jaw😟
I have just been diagnosed with this, the pain is unbearable, I would put down a animal if it was in this pain, don't know how long I can hang on, broke my back once, my neck twice, ribs, wrists, ankles, any of those pains are a walk in the park, to this pain, Please help
Jerry mate. I hope you're still around. It's not much help to say this, but I understand. I understand. I intend to write a book about this which I hope will inform others as to yours and others plight.
Jerry Allen My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I just witnessed a new friend having a blast of this horrible pain. I'm sorry for all of the sufferers. It seems that many people affected by TN commit suicide because they can't endure the pain anymore. I hope a release is found soon. CBD maybe, has someone tried it?
I have had TN1 since 2006, I am furious at the World Health Organization for not recognizing TN, which would free up federal funding for research as well as get recognition from all areas of the medical community!!!! People just have no idea what is really happening to us.....the pain, fear, isolation and depression are almost too much for any person to endure. I am so angry!!
I wish somebody could help me diagnose this. I get random episodes of facial pain and everything from my cheeks to ears to eyes to nose and head hurts so much. I have been asking for death over it for so long. All the doctors till date have just given pain killers. I can't imagine how much this video touched me
@@TT-fn1xb I don't know .but after every episode of whatever I have I try my best to dose off after eating strong ass painkillers. And I keep on going for stronger and stronger painkillers now
For me painkillers didn’t even touch the pain I felt. I’ve tried so many medicines, so many combinations and have now found a combo of oxcarbazepine and lamitragine to help. Everyone is different though xx
I'm thankful that I don't have TN pain on a daily basis, but when I get flares the pain is off the charts. It's like getting stung by 1 million bees. There have been times that the pain gets so intense and comes on so suddenly so I scream. People look at me like I'm nuts! I sure pray they find a cure for TN, as well as EDS. How many of you with TN also have EDS?
I can relate to this sooo much. Feeling like being stabbed with an ice pick.. I had two teeth pulled out when I probably didn’t have to. I’m so glad I was able to find out about TN via the internet, find a doctor and get an MRI. My heart goes out to all of the people in this video.. Thank you for making this!
Nick The Dad..I too had good teeth extracted, only to find the pain was still there,I think dentists have become more aware of T N now, at least I hope they have it's just awful, I remember my surgeon telling me that so many suffering from this have made the same mistake.
I’ve had this , the only thing that i knew that worked was by chance here in minnesota, it was -25 below zero and while i was outside, i could actually swallow or what hav you without any pain but couldnt stay outside forever. Yes they tried everything but nothing worked except morphine while in hospital which then i became addicted too but it all worked out thank god! Anyone going through this now, seek help, dont give up,I also like to thank the doctor that finally diagnosed it and a dr. Tynon who i think is or was from st paul minnesota
I didn't know the term but the pain comes and goes. I would make 1 hour voice notes ... Trying to help my jaw relax. This would help me forget about the pain and pressure on my face. I didn't want to tell my family about it. I feel embarrassed to be 27 with a neurological issue of a 40. All I know is, The pain is gone and I didn't do any surgeries. I'm worried it's going to come back. I assist my gums by brushing my teeth. I don't know why this is happening to me. I don't eat breakfast cereal without warming the milk. Long story short, I've decided to stay away from hard foods. I feel like an 80 year old in a 27yo body. 😢 I've always tried to keep healthy but I guess my activities were not good enough. 😢 I'm happy to find this channel. I feel better knowing I'm not alone. God says it's one of the effects of toxic tap water. I'm from South Africa ❤
i felt the same way. i got this when i was in my early 20's misdiagnosed for 20+ years and am disabled from it now . Whatever you can do to get to good doctors please try. PNI santa monica CA saved my life . O had type 1&2 and was one of the worst cases they had seen .
dave venable My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I was just recently diagnosed and it is absolutely debilitating I can't even work because of it or sleep or enjoy life and drs just look at me like I'm crazy
Yes Amanda I'm going through the same thing, bosses don't want me down on the ground stringing together cuss words then lay me off work because they think it's contagious and don't want to deal with it anymore.
I’m in tears right now knowing so many others suffer with this horrible life changing condition. Honestly the pain gets so bad I just want to end it all, I’m currently going though a bad episode and was in the ER last night for it. I hope one of the surgical treatments will work for me but from what I’m reading, I’m kinda wondering if anything is gonna help 😢 God bless anyone who is suffering with this, I believe it’s hell on earth
Joanne Bascetta My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I'm also suffering with TN and I also cried watching this video. My life has changed so drastically since it started. The emotional toll that it takes on you is almost as unbearable as the pain. I've always been a half glass full type of person yet TN challenges my optimism as this affliction is so relentless and it just feels hopeless. Not to mention the rising cost of healthcare combined with the lack of support and treatment for this condition. This thing has killed my 'sliver-lining' mentality. Some people dream of hitting the lotto, I dream of a TN free existence. My heart goes out to my fellow TN sufferers. I'm so sorry this happened to you, to us, and to anybody, ever.
This video is a very actuate description. I have TN2 it's pretty constant, I rarely have the electrical shock pain, but when I do it is in my eye. The last few months my vision has changed a great deal. I've had this for approximately 10 years. I've have two teeth pulled and root canals and many unnecessary rounds of antibiotics. I finally got a diagnoses three days ago. I've started the carbamazepine and feel completely loopy and my mouth still feels like acid. Praying for all of us. This is rough.
Hi I just saw your post from a couple years ago on a tn site. I to have severe ATN. Constant burning stabbing never ending. I’m wondering if you ever found anything that helped your pain. Any recommendations would be appreciated thank you so much hope you are doing better.
Anyone that has TN, needs to try *lysine.* I have had TN for over 20 years, and it is the only thing to stop the pain AND keep it away. Please try it and pass on your results...peace to our pain
Lysine works bc yours is caused by the zoster virus. I use Valtrex to suppress mine, minimize my sugar and dairy intake, take B12 and Sunflower lecithin to help make my nerves healthier, and glutathione and milk thistle to help my liver detox...this all helps and I have been able to keep it under control most of the time. I still have pain every once in a while. I have had TN for over 30 years. This will only work if the cause is the herpes or zoster virus....For most people TN is caused by other things, unfortunately....
The pain for me started in 2010. The pain was strictly on the right side in the beginning but was sporadic and would only happen for a few days or a week or so every few months. I didn't get officially diagnosed until 2016 when my TN started on the LEFT side of my face as well and it got so bad that the flare lasted 10 months. I tried so many things before I finally had an MVD in May 2017 (I was 29). Then in the first week of April of this year my TN on the right came back with a vengeance. It's flared non-stop for almost three months and I'm struggling as I'm also having sporadic flares on the left now too and where I live there isn't a neurologist who takes my insurance so I had to be referred out and can't even see a neurologist until August so I'm relying on my PCP for help in managing pain and due to recently being diagnosed with several health issues she's worried about my reactions to meds (I have MCAS so it's a valid fear) so I only have Gabapentin, Tylenol, and alpha lipoic acid for pain management (though she did tell me it was okay to take one of my valium, which are for my back, if I needed it). I just try and take it day by day but I barely survived the ten month flare on the left side five years ago. So this flare scares me so much. My heart goes out to everyone who is dealing with this agony.
@@kalsoomafridi133 Hi I just saw your post on the TN site. I have a typical trigeminal neuralgia really bad many years. Amitriptyline causes me such constipation but thinking of Trying it again after seeing your post. Can you tell me what IDN is? And how much amitriptyline did you have to take for the pain to stop? Thank you so much if you do get constipation also curious how you deal with that look forward to hearing from you
ive had this for 6 years, ive managed it with cannabis after trying so many prescribed drugs from my doctor, today i found out what this disease is by accident. Neurologist couldnt tell me, my doctor couldnt tell me what is wrong and ENT could not help me. today i feep blessed that i now know what it is. trust me CBD and THC help. CBD more so. Medicinal canabinoids are what we all need when suffering an attack.
I was diagnosed in 2020 I thought I was going crazy cause the pain is horrific 💔 😢 it has been four years now I truly understand God will make a way 🙏 in his timing stay strong 💪
Amanda, Amadori My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
It gets to the point where people roll there eyes if you say "my face hurts" I'm done mentioning it. I feel like a cry baby but nobody understands unless they go thru it
I AM CERTAIN I HAVE TN...ONE NIGHT TRYING TO SLEEP, I WAS PUNCHING MY JAW OUT OF FRUSTRATION AND PAIN. BRAINSTORMING ...I WENT TO THE PANTRY AND GOT A MAGNETIC CHIP-CLIP AND PINCHED MY BOTTOM LIP (EAST TO WEST). LOW AND BEHOLD IT WAS INSTANTANIOUS RELIEF. MY CASE IS EXTREMELY SPORADIC BUT AS EXCRUCIATING AS ANY HUMAN CAN IMAGINE! IT MAY DISAPPEAR FOR MANY MONTHS, BUT WHEN IT HITS, I UNDERSTAND WHY IT IS COINED AS "SUICIDE DISEASE"!
I've had this for 31 years fortunately at times there were years between attacks. I have needlessly had most of the teeth on the right side of my mouth removed. diagnosed 2 weeks ago. its torture. Gabapentin has saved my life. Love to all who suffer with this awfull disease. Stay strong.
Simon H78 My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help". Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN! I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago! In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight. Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis. I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped. There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought! Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
Watching this video brings a tear to my eye how these people are so so brave and strong and true warriors how they endure and suffer everyday with this horrendous TN facial pain. Everyone of them are in my thoughts and prayers. I have PN nerve pain in my lumbar region only six months and it is exhausting me. Anyone watching this video with PN pain or TN facial pain please try kinesology tape to lift the connective tissue and fascia off the nerve and dry needle tindling helps too. God bless xoxoxo
I was pregnant when I had my first attack. Started with a deep, dull ache in my jaw. Drs, dentists, Drs dentist but no joy. Neurologist said there was nothing wrong with me. Holed up in my room, tearing out my hair by the roots, punching myself and slamming my head against the wall was my life. Without the baby inside me, I wouldn't be here. Those tablets were in my palm. I'd given birth to my daughter 2 yrs prior. She came out bum first and and I birthed her naturally without any pain relief. I'd do that again 100 times rather than suffer through TN for an hour. A new Dr prescribed Pregabalin which has it under control. My heart goes out to all who are still struggling ❤❤
I have had this disease since I was 16 years old. It Comes And Goes and I am in my 60's, I have just enough pain to let me know it is their, I can't sleep on that the left side of my face.. It I no fun having it for shore, I keep busy. just to keep my mind off of it... When I first got thise disease, I could not comb my hair or brush my teeth.. the whole side of my face felt like continuous Shock of heat sting pain.. not sharp pain, but steady constant pain.. not letting up at all.. I hate it.. I hope they come up with a cure..
The first time I had an attack of TN was in 2016. I was going for a weekend trip to Madrid and the pain in my jaw did not allow me to eat anything, not even soft food like the Spanish flan that I adore. I didn't know what was happening to me as I had never heard of the trigeminal nerve. I thought it was something with my teeth. Coming back home I ran to a dentist who took off a perfectly healthy molar. Only after several visit to doctors I was diagnosed correctly and prescribed with a medication - Carbamazepine - that made the pain disappear almost instantly. I thought it was a one time problem, but a few months later the pain came back. That time the medication took several weeks to eliminate the pain. Again, a few months later the same story but this time the pain did not disappear completely and I had to continue taking the med day after day, in spite of the side effects. At least I could live, even if permanently tired and feeling low. Two and half months ago the pain has returned, with a vengeance. Even with massive dosage of Carbamazepine and Codeine it never goes away. I cannot even sleep in horizontal, because the position brings the pain to the maximum level. I don't know how long I can continue in this way. Doctors do not seem to take it seriously. I am making plans to end my life if I cannot feel better soon.
I have atypical tn. I know how you feel it’s misery. Typical meds didn’t work for me I now take Oxycodone takes the edge off you might want to get give it a try, I also tried a few Dilantin I got from my brother prior to him dying of cancer it helped a lot but I don’t really want to get started on that
@@lindapelle8738 Thank you Linda. Since I posted that message the pain has decreased, but not disappeared. Now I am waiting for a possible surgery, even if I am not sure whether it can really help. I used Dilantin (here sold as Phenytoin). It helped, but with very heavy side effects. How is your experience with doctors? Here it seems that they don't consider TN a serious illness.
PLEASE do not lose hope. We are working hard to find a CURE and our research has made great strides. Learn about us and our work at www.facingfacialpain.org
I am 16 years old I was diagnosed with TN in September 2021 for the pain my Dr give me Tramadol this is very horrible my best wishes to those who suffer from this terrible disease. Talk with your Dr and ask for Tramadol.
I have atypical TN related to 3 sinus surgeries. Have you tried Cyber Knife? I’ve dealt with all the drugs, injections, acupuncture, anti seizure meds , blocks and cerebral neurological stimulator with no relief. I’ve had TN for 30+ years. I understand your need for relief. The CyberKnife took 18 months before I noticed a difference. I was able to reduce my meds during that time. and began to recognize myself. But the pain is slowly and steadily returning. I’m going to repeat the CK in a few weeks. It did give me about 4 years of considerable relief. My pain is 24/7 with burning, deep, and achy pain with several triggers daily. And I do have ice pick stabbing pain in addition. I hope this will help you. You are not alone in this hell.
I have suffered with TN for 20 years and the pain is constant and never goes away! There are times the pain is so severe that I think of killing myself! The pain I have spreads out to three different locations at the same time and that is my left ear, left jaw, and the left side of my throat! The pain in my ear feels like someone is piercing my ear drum with a very sharp pick! My jaw feels like my jaw bone is being crushed in a vice and my throat feels like a shocking knife stabbing me in the back of my throat or like a bumblebee constantly stinging me! The pain normally is around a 4-5 scale and without warning shoots up to a 10! When this happens I just completely stop doing anything! I grab my face and squeeze as hard as I can and just groan as loud as I can until it subsides! The Dr told me he could take out the nerve but my face would drop as though I had a stroke and would have to have all my teeth removed from the left side to prevent myself from accidentally chewing my cheek and tongue! I’ve tried meds that seemed to help but was diagnosed 3 years ago with leukemia and had to stop those meds because I cant mix them with the chemo therapy drugs. Having said all that I found my faith and trust in Jesus Christ has helped me more than anything! Because I know He is the creator and the creator can fix what is broken! Although I still suffer with TN and now leukemia, Jesus has given me the strength to endure it! When the Dr’s are unable to help, Jesus Christ can fix anything! I give all praise to Jesus.
William bowen sir so sorry hearing ur experience...lets just pray together that God will find a way even sometimes we thought there s no way.....God s good all d time
Get the MVD surgery. My TN is seemingly gone. It's been 6 days since surgery, and recovery has been really hard so far, but I would rather deal with this than deal with TN for the rest of my life. Get the surgery.
Hi I had the same surgery @ St. john's Hospital by the PNI pacific neuroscience institute. The greatest doctors who understand this horrid disease that's stolen so many of our lives . Best surgeon ever.. Dr Garni Barkhoudarian Santa Monica, CA . look him up
My BESTFRIEND my SISTER suffers from TN The More I Learn, The more my heart breaks... the more I wish I could Magic it away... But It doesn't help... So I Pray To The Father To Take This Horrible Pain Away...
I just got diagnosed with this, but the pain is only one aspect. I experience shaking, grimacing, numbness, vision and memory issues... and much more. I think we have to cover all the symptom L’s more
OMG! THIS IS ME! I have been having this FOR YEARS thinking I had ear infections and would go to a walk in clinic and they would tell me my EARS LOOK FINE! I would tell them, "How is that possible with the PAIN I AM HAVING"? I had an ENT work up years ago and they found NOTHING. The saddest part is I am a NURSE and NEVER GAVE A THOUGHT TO A NEUROLOGICAL ISSUE! Not until a few days ago, when I was describing my symptoms to my niece (also a nurse) who said, "It sounds like you need a neuro consult". So I started researching and came across videos describing TN and I just wanted to cry because I knew EXACTLY what they were describing and felt I finally wasn't CRAZY!!! After years of being "blown off" by so many doctors I now know... I AM NOT CRAZY! Although I am extremely grateful I have not suffered near as much as many describe in this video. I know the pain but it is very intermittent (thankfully) but seems to be getting worse. I am so thankful my niece mentioned what I vaguely remembered from nursing school so many years ago. I feel so STUPID that I didn't even think of it and should have been more insistent with the doctors. Thank you for sharing your stories.
First diagnosed on December 2005. Despite, I’ve been one of the lucky few since mine is episodic and up till now once an episode starts it takes 2 weeks to gradually get it under control with proper treatment. In my case the pain is behind the eye. Imagine attaching 1,000 pounds of weight to a very thin spring right behind the eye and set it up in motion with every pull making you feel unbearable pain in that one concentrated spot. The first episode that affected me went misdiagnosed for 2 weeks and that was the first time in my life I had suicide thoughts.
I think the advancement to AD from my last surgery has made life such a struggle to live. 24/7 365 days every day of my life until I die. Wish I wouldn't have done the third MVD. I have had it from 28 was diagnosed and first surgery at 34. My face is ice cold and numb and I miss me. I forget now I traveled and was fun. Now I am in bed going out on good days. it breaks my heart how I have changed my husbands life. Even my kids have had to life with having a blob of pain for a mom. At least now the pain is always so I don't have to wait for the pain because it is aways there. The fight to stay alive is a tough one but I am winning in my own way. Loves to my fellow fighters.
I am going to get cyber knife treatment on tuesday. This video made me cry and has been my whole life since October. If anybody has had this done before Id love to hear from my fellow TN suffers
I'm a little bit frustrated because I have done this and got my life back and I have been spreading this info for a two day and I don't think anyone tried it...this puzzles me. This is what helped me a lot... Use blender or nutri-bullet: 1. Organic Ginger as long as thumb 2. 1 and a half Organic Lemons 3. One flat teaspoon of Cayenne Pepper 4. 4 1/2 Cups of Organic Black or dark Purple Grapes 5. One to 3/4 Organic Mango. I see that most medications are not working so why you wouldn't try something natural which has giving me positive results? Blend this combination you should get like three 8oz cups. The Mango is not as important as the other ingredients. I had this and started to fell relief within 35 mins...honestly! No bullshit! The ginger and cayenne pepper are anti-inflammatory and the grapes and lemons work more for your Lymphatic system. The pain I felt before was like a electrify knife is being shoved into my brain. The jolts that I got from that sensation/pain was unbearable...this was happening like every minute constantly. I am going to be consuming this combination for several days as meals and also other fruits...going raw. I had 9 cups yesterday and my pain went from a 10 plus to 2. I think if I continue the combination will nullify the inflammation. If you can try to cut back on acid foods like meat, chicken and diary...they do more harm than heal. Please acknowledge if you read this, I need to get the word out because it works. Always consult your health care professional to see if you are allergic to any of the ingredients above. Lets me know if you try it. Show less REPLY
Doctors NEED to stop withholding narcotic pain meds for us with trigeminal neuralgia. They treat every one of us as drug seekers... They gaslight us with chronic pain.
Except narcotic pain meds only work on SOME people with atypical pain. I have both typical and atypical TN and narcotic pain meds don't work at all for me. They did a study and narcotic medication only has mild pain relief on average. The facts are the mild pain relief isn't worth getting addicted to those meds which is why they don't give them to people with TN. It's not gaslighting. The meds, honestly, don't work for the majority of people so they don't see the benefit of giving it out to people that it's unlikely to work for.
@@duchessliz2415 That comes from a fear of pain meds. Fear porn from doctors and dentists to scare you from relief. All due to the opioid crackdown ans fake epidemic. Did you know alcohol kills 50x more people every year than opioids? Did you also know that only around 3-7% of those overdose deaths are from actual prescription pain meds? Yep MOST are by street drugs, fentanyl, heroin, meth, Crack and most of THOSE that overdose have over 3+ different narcotics in their system. That's real facts. Also every medicine you take is addictive. Every medicine you take will give you withdrawals upon coming off them. My mother was on Gabapentin and had severe withdrawals after getting off. You go through caffeine withdrawals if you stop drinking coffee. Even motrin will give you withdrawals
@@Tootswilligers THANK YOU THANK YOU THANK YOU for this! For anybody who suffers REAL 10 out of 10 pain, the ONLY thing you want is for that pain to go away ... or at the very least get a little better! I'm starting to question how severe the pain actually is for some of the people not wanting to use narcotics! There are MANY times I would try absolutely ANYTHING to make the pain stop... so it would be far safer to have that option available to me rather than the alternatives! Please dear pain suffers, don't be afraid to try narcotic analgesics!
Video made me very emotional, my fiance has been struggling with this for the past few years...these last 4-5 months have been absolutely horrible. Everyones expirences with it sound EXACTLY 💯 how she describes it. TN SUCKS!! Hoping she can find someone to do the surgery but it seems like nobody wants to do anything or just say theres nothing we can do for you...😢
April will be 3 years. We gotta get a cure. I'm tired of this living hell. I used to be so strong. Worked in warehouse for 6 years, could live 90 pounds and head bang at Rock shows. Now, most days my 11 lb cat is hard to pick up, even if I turn my head too quick I can get dizzy and sometimes pass out and basically just had to give up my social life and going to live music. I'v literally had to change and give up my whole life. Because I'm not missing an arm or a leg or I don't have full-blown cancer, the intensity of my pain gets blown off so much. I have no support from my family and one by one "friends" have fallen off. But of course when I was going up doing well in life. Taking cute pictures posting them on social media people wanted to hang around. I can't do this for the rest of my life I'm not even 29 yet. Ever since I was 6 years old and I understood what money was I wanted to get a house for my mom and I, since she can't take care of herself. I worked really hard jobs to get high paying money and one after another I've just had health issues for the last 7 years. I feel like my life ended at 22 and I've just been a ghost trying to push through. I can't do this forever alone and I shouldn't have to. I particularly got my trigeminal neuralgia from a ping pong size tumor wrapped around the trigeminal nerve. Three brain surgeries later the damage was already done. I don't understand how the body could be in so much pain and still not die. I used to be so kind and loving. I would always get compliments about my energy. Even from a young child I would draw people towards me. I let too many of the wrong people in and I've been very sick since. My soul is breaking. #trigeminalneuralgia
I have had trigeminal neuralgia for about 2 years.I deal with excruciating pain daily. Nobody believes when I try to talk to them about it.I hope and pray we can get a cure.I read that Olive oil can help.Take about 4 tbl spoons aday.
I am suffering from that same pain for many years, until my naturopath doctor told me that I might have TN. So she told me to spray my head with DrMaggie magnesium spray, spray dry repeat technique for an hour, daily. And it did work. I thank God for giving me Dra. Jean Cruz who is my pain saver.
I got sick at the age of 16. My life is ruined. The doctors didn't know what was wrong with me. They wanted to lock me in a psychiatric ward :(. I carried out 3 head operations to no avail. I talk about it on my channel.
Great to speak up I was diagnosed with stage 5 cancer spread to my trigeminal in wen through chemo radiation 8 months out it hurts like hell night air breeze can trigger it my oncologist thinks I'm crazy when I complain about it . getting ready to get to rid of him meant stage 4
We are working hard to find a CURE. Learn about our research and join our fight by visiting www.facingfacialpain.org
IF YOU REALLY CARED ABOUT TN SUFFERERS YOU WOULD ENCOURAGE THOSE WHO HAVE SILVER DENTAL FILLINGS TO GET HEAVY METAL TESTING.
ALSO MAY HAVE HERPETIC LESIONS ON NERVE/GANGLION AND TREAT W VALTREX.
THE SURGERIES AND MEDS ARE AS BAD AS THE TN.
I have trigeminal neuralgia I am 13 years old it made me have seizures n lose my walking abilities I am currently on my 4th month in the hospital and I have surgery this week please pray for me
Praying for you!! How are you feeling now that 9 months has passed? I hope your surgery was a success.
I hope you okay
Mariah Walker Oh my goodness sweetie I am 65 with it I cannot imagine being 13. I have been going to a wellness chiropractor, I finally went after I got on Medicare. He did a laser and some adjustments and now I am on also detoxing and learning to eat plant-based, just thought I would share what has helped me I have gone from a 10 in pain to less than a one !!!
I have not wanted Christmas for the last three years and I finally feel some joy this year because I am not in pain
I hope you have found some relief after a year now. Stay strong!
I'm so sorry hun! Praying that you get relief and that you can walk again without difficulty.
Truly words cannot describe this pain. I have had chronic pain for years but nothing comes close to this. Mine is caused by a tumor but I've been told surgery is possibly too dangerous. People just don't understand something so simple as taking a sip of water can set it off. Then it goes away just as fast as it came. The comment in the video about the skull splitting open or an ice pick going into your brain is it good description. I've been in chronic pain for about 20 years. The TN started six years ago but would go away years at a time. Then last year it came back to stay. I had gamma knife and it went away for two months. Now back worse than ever with the added sypmtom of the fire inside that was described in the video. All of these years going through pain and painful procedures, i have never vocalized my suffering but with this, i scream, i fall to my knees, i punch my body during an attack. If there is a hell, this it. And to add insult, people think you are being overdramatic or faking or cant handle pain. Not having emotional support is so isolating. To anyone reading this, you are not alone, i believe you, and i am so sorry you are suffering. You do not deseve this.
Same here , I have a tumor too.. Take care
My first attack was 2 days before my 18th birthday. I'm 32 now. I've tried:
Many medications. MVD surgery. Botox. Acupuncture. Creams with hot peppers. Face patches. Cervical chiropractic care. Diet therapy. Vitamin therapy. Mirror therapy and meditation. Laser therapy. Marijuana. Good old fashioned alcohol. I am definitely forgetting a few things.
We need a cure. Or at least a better link to remission. I'm really tired.
Danielle Quaglia methamphetamine. Desoxyn is the brand name.
It makes me cry to know I’m not alone. I share your pain. I know your struggle. Have mercy on all of us. Bless you all.
I have it and it hurts like hell, god seens our pain, he will help us , l hope u feel better, l have this pain every day, it's been 2years ,
Me either i have been in this pain now since 2019 and its rare in my country in malaysia every time the pain comes i really feel like taking my life like i can’t live with this pain
I have it for about 2 years now, I have both type1 snd type2 and it’s so bad. This pain need you to be toughest of people to endure and you also need support from people around you. I wish all the best for other people with this pain and we need to keep fighting.
@@Sintrania yes indeed need good system support for u to endure your pain but in my country this is rare not everyone know when u try to explain they don’t really get it so i have to go through the pain alone thats make me wanna cry every time the main attack 😔
@@sailormoon5018 i can feel that, most people don’t understand it since it’s not something easily explainable as well as people don’t usually see us when we are in pain. Please stand strong and remember we are not fighting alone.
Finally a place I feel seen and heard. I wouldn't wish this on anyone 💔
This is heartbreaking :( My heart goes out to anyone with this disease, please keep fighting.
Thank you that means alot! x
Thanks a lot...
Thanks! I will keep fighting it.
Thanks
Total government funded surgery for this is NEEDED.
Recently went over the top with medication but just damaging myself, & it never got rid of 100% pain anyway
As a doctor, the patients I've seen who suffer from this disease always stuck with me the most, and I find myself looking up videos about people who suffer from TN so that I can hopefully be able to recognize it whenever I see it, because it is very much true that it goes ignored and unnoticed by health care professionals all the time, for decades in some cases.
It takes a lot of courage and mental fortitude to continue the fight against this disease, I pray and believe in you all.
I’m 22F and I had TWO doctors diagnose me with this, without the other knowing in the same day. This was yesterday. I was so sure I was going to have to over explain for anyone to take me seriously, with my being so young, and hearing how rare this is beforehand, but they both did and I was so ecstatic I finally was going to get help. One was a female doctor at Fastmed, and the other was a Male Physician at My local emergency room. I’m so happy I was diagnosed correctly, and so quickly. I only had to handle about 4 days of intense waves of pain, lasting 2 minutes every hour, preventing me from sleeping. Who knew a person could make it through almost 3 days only sleeping about 5 minutes 😅. I thought I had an infection in my jaw. At the ER, he claimed he had only diagnosed about 3 people since he had started his career, with this disease. I believe I was the youngest so far. I know I’m lucky I was given a medication and diagnosis so soon. Others just aren’t as lucky, sadly. I’m now on an anticonvulsant, and pain killers. I’ll be visiting a neurologist soon to find out just how serious My case scenario is. Especially considering mine is suspected to have been brought on by a tooth extraction. I’ve heard the nerves if caused by my extraction, may take up to a year to heal... I really hope this isn’t permanent for me.. it takes extremely strong women and men to handle this type of pain... and I just don’t think I’m cut out for this. Anyways... I’m writing you this comment to say. It’s working. People are hearing about this more than around the time this video released, and to thank you, for actually taking the time to familiarize yourself with these uncommon/rare conditions. It’s because of people like you, that we at least can stand a fighting chance combatting this with medications early on improving our quality of life before it becomes overwhelmingly draining.
Thank you for caring!!!
Hi there! I know I'm about a year from when you wrote this, but I can tell you this, in my experience:
It's been an up and downhill battle, mostly in a sense of it being uphill, then tumbling down (lol...to have a sense of humor kind of helps).
There are days where it's a light "crawl" in certain spots, and then, there are days upon days, nights upon nights, where I literally just want to rip my flesh off.
When a "flare up" occurs (for lack of better terminology at this time), it's NOT like having a cut on your arm, or a broken leg...you KNOW where that pain is going to come from. With TN though, it's ALWAYS random where it strikes.
I think for my case, I have a nerve that had gotten lodged between two blood vessels (not sure how), that, over the years (17 to this time), as the blood vessels course blood through, they have been degrading the myelin sheath to a point that (as an example) is like a frayed USB cord.
The best example I can give is exampled here in this diagram:
www.mayoclinic.org/-/media/kcms/gbs/patient-consumer/images/2017/10/16/14/41/mcdc7_nerve-myelin-sheath-guillain-barre-8col.jpg
...with the exception that it's not guillain-barre disease, the effects are the same (as is with MS; amongst others).
I have more I can explain, but typing it, I'd rather speak it aloud! lol
#ThisTooShallPass
Thank you for this comment. I have TN and it has been a vicious cycle of who to go to next. It feels like I am chasing my tail and that we, with this disease are always looking for answers.
I wish these brave soldiers had the answers I have found. I currently have trigeminal neuralgia and I am healing it with Medical Medium information Anthony Williams. I hope someone reads this and finds answers to this debilitating disease in his books.
Words could never describe the pain I suffered.i would rather die than go through that again,Tegrotol kept the pain under control for quite a few years but then it stopped working,Surgery was the only answer,I had peace for the first time in years,the right side of my face is numb now,but I can put up with that. I'm forever grateful to that surgeon and his team for what they did for me.
What symptoms did you have?
Kenny Williams..I'm sorry I just noticed your comment, I normally get notifications if someone has replied to my comments but I didn't on this occasion..I find it hard to find the right words that would explain the pain I had, it was bad enough for me to contemplate putting an end to it all, I could barely talk or eat, clean my teeth or do the simple everyday things, even a stormy day would have started the excruciating stabbing pain down the right hand side of my face, I could go on all night trying to explain it all, but that's part of what it was like..I do feel for you if you are suffering from this..Again I apologise for the delay in answering your post.
I've been on tegretol combined with gabopenton for about a year , switched from carbamazapine, still have pain 🤬😴 did u have the MVD ? And was your t.n natural or caused by damaged ? Been fighting with this for ten years ... Need help but scared of the MVD as I have 3 children and a wife who need me to work 💪
Microbe mania. First of all I sympathise with you and hope you will find peace from this dreaded pain. No I didn’t have any previous injury to the Brain it happened all of a sudden with terrible stabbing down my face and into my back teeth, I foolishly went to a dentist and had my teeth removed on two separate occasions, big mistake. To cut a very long story short after years on medication I was taken in for surgery where they go into the Brain at the bottom of the skull you can see the procedure here on CZcams..I never felt that pain again. I will never forget it though I was alone and in a very dark place..I will say a little prayer for you that you will get peace..Best wishes to you.
@@taraann7753 yeah I know all about it lol , met with the surgeon but I don't know about it ... I have bad luck the micro vascular decompression with a twist , they sever the nerve and see what happens
I can tolerate the burning most of the time. But when the stabbing and electrical shocks start, I'm on my knees crying like a baby. I am thankful that mine comes and goes. I couldn't deal with this pain if it never went away. I'm lucky that I usually go for months without pain. My attacks usually only last two or three days, however every time it comes back the attacks lasts longer. I've been dealing with my most recent episode for a week and it's been the worst one yet. Praying for relief for all those suffering this horrible disease.
Kyle Norman My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
Kathy Costelloe thank you, I'm doing the best I can imagine. A couple of days ago I went to walk in clinic. Waiting, I thought "this is corporate! Duh." But I saw the Dr anyway. Just as the bored 'oh, a drug seeker' affect presented and she mentioned anticonvulsants, I rattled off the dose of a 13yr sufferer (3600mg Gabapentin, 400mg Carbamazepine, 30mg Baclofen + 8 other meds to combat those). She was shocked.
We discussed the possibility of placebo. We talked about the risk of losing control of the pain and the very real possibility that I'd never rein it in again... She gave me the names of 3 local neurologists that may help me. She did not charge me for the hour she spent with me. "Don't give up. Push, insist, take the evidence that you brought here today. Your research is sound. Do not take no for an answer!"
Yep, thanks to her, I'm doing pretty damned well.
Try for a decompression surgery
This is the worst thing ever to go through. I've had this for 6 years now the pain is awful and getting worse every day. I just all the time but I also have flare ups as well. This time is the absolute worst I don't even want to lift my head off the pillow or away from the back of the couch
@@cathyholloman9797 where do you live? I had a radiation treatment in Birmingham alabama that got rid of 95 percent of my pain. I only have a little burning from time to time.
I literally just sobbed through this video. My TN started 5 years ago. It's the worst pain I've ever had. Worst than natural non medicated child birth. I hope they find a real treatment. Bless all of you.
We are so sorry to hear you're suffering. Our mission is to END THE PAIN www.facingfacialpain.org
Literally crying in pain and out of emotions while watching this. I had been suffering from TN since 2013, 😢
How do you cope????? I'm 25yrs and idk how to live
I solved mine by taking psychedelic mushrooms. not saying you should but it did cure mine I suffered with it for over 10 years
Torture is my description of Trigeminal Neuralgia' and jus a few days ago i discovered this terrible pain has a name, i've suffered 31yrs! It has another name as well, suicide pain and i pray we all hang in there and seek help + keep seeking.
gregory neuhierl cannabis helps. CBD oil ! Research it . hit me up if you need for info
gregory neuhierl My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
sending love from one TN sufferer to another...
@@Chonkybeatz hi post you wrote to years ago regarding cannibals oil for your trigeminal neuralgia. I find marijuana does not help me I have a typical trigeminal neuralgia.. type two that started after surgery many years ago dental surgery. Can you please tell me if you are still getting relief? Also what type of/brand of oil are you taking I would like to try it. Thank so much
Tears are falling down my face for the sufferers of TN, including a dear friend of mine who had decompression surgery yesterday. I pray she and other TN find relief for their pain.
I was diagnosed with Trigeminal Neuralgia in 2013. Things seemed to be going great,but 3 years later,it came back hard. I started missing lots of work because the pain was unbearable. I was put on 4 different meds until finally gabapentin took the edge off. Now,in 2019 I have been attacked every day with excruciating pain. Missing days of work,working in severe pain. I'm tired of being in constant pain and I'm ready to give in to surgery. My neurologist doesn't have an opening until December!!!! How am I supposed to bear that much pain until then? I was ready to end everything on numerous occasions due to the excruciating pain. I'm praying that God steps in and removes this from my life. To all who are suffering,we need to stick together and keep the faith. Let's claim this victory.
Hi, did you have the surgery, because I am at that point now. This mess is plum ridiculous!!!
@Laney Stone Hello,I did have the surgery on 9/20/2019 and I thank God for it. It changed my life and I've been free of pain thus far! Please consider it and I assure you that you won't regret it! I'll be praying for you because that excruciating pain is horrible! God bless you 🙏🏿 ❤️ ❤️
@@blakmajik63 I'm so happy for you!! Sounds like a life changer 🙌🏾
i take topamax. it works ok
@@blakmajik63God is good. Happy to see your prayers were answered
While I don’t have trigeminal neuralgia , I know exactly how you feel. I too suffer from invisible disability, I am fully legally disabled, but if you look at me and didn’t know me you would assume I am perfectly healthy man, but you would be dead wrong. I won’t get into my issues too much, suffice it to say I’ve been in severe crippling agony for the past 28 years of my life. I am now 48, can’t work, and have 11 chronic and agonizing diseases that are completely destroyed my life in every aspect possible, yet people take one look and say you look terrific, or accuse me of faking all of it so I don’t have to go to work, I wish to God I could go to work, instead of facing this hell. I actually have never heard of this disease before, tonight is the first time I’m hearing about it, and I feel so so sorry for every single person that suffers from this. There’s nothing worse than having to deal with such a crippling illness, but then to have people accuse you of faking it makes it that much harder to live with. There have been many many days that I wanted to kill myself, including today, because you reach a point where the pain is the only thing you can think of. When you’re in crippling debilitating agony, and have people tell you that you’re faking it, just pushes your right over the edge, who wants to live like that? I’ve never attempted suicide yet, but I assure you that if I try I will succeed, because I in no way want to live like this anymore, and please don’t judge until you’ve been in our shoes. My heart goes out to all these people! It may sound crazy, but there are many many times I wish I had been amputated limb, a disability that people could actually see, so I wouldn’t have to face a barrage of stupid question, and ignorant looks. I beg all of you, have compassion for these people, because you have absolutely no idea of the hell they are forced to endure on a daily basis. All my hopes and compassion to you all, You’re not alone😰❤️😰
TJ Devereaux compassion towards YOU!!!!
Hey, I'm here if you need
God bless you and everyone, just know God sees all and he will heal everyone. Stay in faith and pray together, "If two believe "it shall be done. I am so sorry for everyone's pain, I dream of a world no one has any type of mental or physical pain, God take it all away, from me, from him, from them, from everyone. This is what Jesus did for us. I love you all...
That is what gets me the most. You look fine, you don't look.sick you don't look in pain...
This brings tears to my eyes . I was diagnosed last may of 2022 , I had migraine for the longest time but it’s nothing compared to TN. I this is life changing, I hope they find a real cure.
I cant believe that so many people have the same shit like me
TN warriors you are my family!! Watching this I see and hear people who feel what I do!!! I hate that we know this pain but I am happy to hear I’m not alone!!
I have atypical TN. Failed MVD and am worse than prior. All of you in this video are my heroes.
Same here, 26 years non stop 😔
flamingo My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
@@gr8H8er If they put you in jail they’ll have to treat your condition...I’m so sorry for all you’re going through. I know what it’s like. I like what you said about you would never wish this pain on even your worst enemies, (vile and cruel public safety threats notwithstanding).
EXACTLY!
@@AJ-kv1po me too, Atypical Two decades after dental surgery. So much pain wondering how you’re doing if you tried anything else that may have worked? I hope you’re doing better I’m just miserable stress makes it worse when it’s already worse to begin with if you know what I mean.
Hi saw your post From four years ago regarding your failed MVP for a typical TN. I have the same thing got it 15 years ago after dental surgery nothing helps I take pain meds to take a tiny edge off but mostly in severe pain 24 seven. Wondering how you were doing? And if you have tried anything else that helped? I am in Southern California, I tend to stay offsite because it just depresses me but I’m so desperate I’m at it again. Look forward to hearing from you.
TN pain is the worst pain I have ever experienced in my life! It is so crippling and excruciating! I feel for anyone who has ever experienced it!!
I WATCHED AND SAW MY SISTERS FACE ON EVERY SINGLE PERSON WHO TOLD THEIR STORY. SHE COULD HAVE WRITTEN THIS AS EVERYTHING THEY SAID I HAVE HEARD FROM HER. IT HURTS HER TO BREATHE, WALK, SIT, EAT, SLEEP AND IT GOES ON AND ON. SHE IS SO STRONG AND BRAVE JUST LIKE THESE PEOPLE IN THE VIDEO. SHE HAS HAD BRAIN SURGERY AND THE DOCTORS ARE TRYING TO FORCE HER INTO THE GAMMA SURGERY. NO THANK YOU, LOTS OF VERY BAD SIDE AFFECTS AND IF YOU CAN BELIEVE THIS, THE PAIN COULD BE WORSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I LOVE HER SO MUCH AND WANT HER AND ALLLLL OF YOU OUT THERE TO GET THE PROPER HELP. LINDA MC BRIDE
linda mc bride My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I've been suffering with this for years now - yet I've just been diagnosed this week 9/25/2022. I've been treated for TMJ (surgery in 1998), sinus issues, and Migraine but nothing helps... I've been lost friends and family members because they didn't understand why I "looked fine" but was always "complaining" about pain that no one could explain...
I cannot believe that in this twenty first century, with all the doctors, specialists and amount of money these pharmaceutical companies make out of our pain and misery that nobody can help me and you with this pain 24 hours a day, every single day, actually the pain dissipates slightly when you also hear the noises all the time. If I gave up it would all be gone but so would I be, I have no friends left, just the pain and the noise, I think they are my friends. !! x
2 years late but this is a very rare condition, and no money to be made - they don't care. PERIOD
I've had Trigeminal Neuralgia for the last 5 years or so. In the last couple of years, it's taken nearly everything from me: my ability to work, my happiness, my marriage, my health, and I am starting to feel like my sanity as well. I leave the house maybe twice a month. My pain is constant, severe, and daily. Now, I have severe anxiety about being in public or even stepping outside my house. I save what little strength I have to take care of my son, whom I have full custody of. I've tried every medication my insurance will pay for and had an injection directly into the nerve. Nothing helps much, and nearly every medication makes me severely drowsy and a virtual zombie. I totally understand why they call this "The Suicide Disease"...the pain is so severe that there are times you'll do anything to escape it.
Nick The Dad My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
MVD after 20 years in 2014. Saved my life!
I feel SO seen by this. Thanks for making this.
I won't give up this will not have my life😕 these videos keep me encourage. I feel like im not alone anymore thanks for your video support👌 peace and blessings to all the suffers.
I have TN and i feel like i am in a living hell and alone. Its hard to want to keep going.
Try ldn
I'm so scared...... After seeing you guys story, is devastating to me. :( just diagnosed, thought it was dental issues when it started, 2 months ago. It makes me wanna jerk my top and bottom left teeth out!!!! It's just a deep hard pain and also in my jaw. It feels like someone punched me in my face. Dr has put me on gabapentin and trileptol. The girl that lost her car and apartment and savings... Im so very sorry. It is scaring me to death.
I am a medical student and often look for patient testiomonial videos to better understand diseases. "My kindergardner sometimes sets it off," I will never forget that. I am so sorry you have to go through this.
Thank you for taking the time to learn. We desperately need more Drs like you. ❤
Regular chiropractor adjustments after first being diagnosed with TN have completely cured me. I was in the ER 3 times in 1 week with debilitating pain, and nothing they did helped. My mom recommended seeing a chiropractor, and i'm SO glad she did. They learn all about TN in school, and know how to treat it. If you're reading this and suffering, please give it a try. I hope it works as well for you as it has for me!
Thank you for your courage and for sharing your experiences.
I shared this video with my family so they understand why I feel the way I do and am the way I am.
Because I ‘look’ ok doesn’t mean I am.
We know exactly how you feel. We are working so hard to provide you with a CURE someday www.facingfacialpain.org
I was diagnosed with TN 18 years ago. Horrible Horrible pain! People don't understand. That is so correct. The shocks of pain are unbelievable. People who say you look great don't understand what we go through. I turn my head to fast and wham! It hits.
We understand your pain, and we see you. Learn more about our research and help us find a CURE www.facingfacialpain.org
Thank you , this video felt like people were explaining something is so hard to put together for me. Its so hard to explain to people how it feels and to find words to describe it . My wish is to be normal and be a normal mother to my kids , TN please let us live pain free days 😢🙏🏽
My heart goes out to these people. I was diagnosed around seven years ago after a misdiagnose of a sinus infection. Fortunately my pain, while extremely intense as these people mention, is less frequent and more seasonal. Had a rather difficult bout a few days ago and would have considered anything, including invasive surgery just so I could get some relief. And yes, unless you've experienced TN pain, it's very difficult to explain to the non-sufferer.
Thank you for this video❤. Bless all the participants. This literally made me cry. Unfortunately so relatable.
I relate to all of this. I've had it for 15 something years now. This made me cry cause it's me. I am living through this. Everything they say is true and I'm living through this. I have an MRI in middle of May to determine what the next step is.
We are so sorry for your pain. Our mission is to end it and give you your life back www.facingfacialpain.org
I love each and everyone of you. Been pain free for almost 3 years. The most brutal pain I've ever felt. Love and prayers 🙏❤
We're so glad you are better and pain free. Please consider visiting our website to learn more about what we do for those still in pain www.facingfacialpain.org
What helped you?
@@michellezvonik7004 so far, from what I’ve heard from others and have found around. Bee venom facial masks help sometimes, because the tingling sensation confuses the nerves. Same as putting vix vapor rub on your face in areas where it hurts. I haven’t tried either of these yet. I’ve tried applying non medicated, air activated, sticky heating pads women use on their periods, on my face. I know it sounds weird, but oddly enough, it’s brought me some relief.
Glad for you, but what helped you?
Thankyou for this video. I have TN and have felt so alone and no one understood what I was going through. It’s a debilitating disease and has bought me the depths of despair. I was finally officially diagnosed on the 16th of December 2020 and had MVD surgery 3 weeks ago in Australia. My recovery is going very very slow nausea and dizziness are my two biggest problems right now. I still have some pain but I am really hoping for the best. I really did feel alone until roughly 15 minutes ago so thankyou so much.
You are very welcome. We are working so hard to find a cure. Visit www.facingfacialpain.org
I feel like I’ve been treading water for so many years. I don’t want drown, but I’m exhausted and it’s just taken everything.
diagnosed this afternoon- luckily only three months worth of horrific pain- and a dentist that listened.
it's been 2 year i'm suffering from TN. whenever it start pain i feel like i wanna die. i don't have words for it ...
I am fed up with this pain from the past 5 yrs. I am 30 now.
Few doctors told i am overreacting.
Every single day im in pain.
I wish someone listens.
We know your pain all too well, and are working hard to find a CURE. www.facingfacialpain.org
For anyone suffering, I know they’re illegal in most places, but I have a strong feeling that psilocybin mushrooms can help. I also get cluster headaches, the pain is identical to me so maybe my headaches are more TN. Mushrooms stop my headaches. Even a micro dose. Just wanted to plant that seed.
That is so interesting, we have been watching a couple documentaries about all of this. I have TN and we have discussed whether it would work. Not saying we are going to try it, but definitely have thought about whether it would work for neuralgia's
Prolotherapy is helping me
@@mv8908 that’s awesome! They recommend prolotherapy for hEDS too but I’m skeptical about it because it literally means they damage your joint more so it won’t be so flexible and I’ll have to pass on that because I can’t help but think it’s incredibly painful in a place that’s already painful.
I also suffer with TN and cluster headaches. I think the pain is equal except for cluster headaches if you catch the headache before it comes on then imigran tablets work great. Imigran medication doesn't work for my TN though. Not been able to try mushrooms but weed works well
@@ieatlotsoftoast I still need to experiment with the mushrooms for my TN, they’re hard to find though and I never have any $$ for them. That’s a good point, and I’ve noticed the CH meds don’t work for me typically so maybe I actually have occipital neuralgia instead of CH?
Trigeminal Neuralgia 5 years. GAMMA KNIFE Oct 26, 2023. 😢 my story a unique one as the Dentist left an object in my jaw that caused my facial paralysis. I also suffered a CSF leak out my left nostril and had an endoscopy surgery to repair a Crack in my skull. I would love to share my story in hopes it begins healing and help others. 🙏
I had my FIRST TN "Attack or Flare up" about 2 weeks after My 26th Birthday... it came out of NOWHERE.. One Minute i was Talking to My Partner, Then I Just Dropped and started SCREAMING AND WRITHING in Pain.. it felt like my jaw, My Face AND My Head had been hit by a bolt of lightning... Nearly an hour later it calmed down and i was just Laying in My Shower Crying with My Partner Holding me... i went to My GP and as soon as i told him What happened and how it felt he INSTANTLY put me on Tegratol first on 400mg then up to 800mg, and im.also on Lyrica JUST so i can sleep at night.. i havent had an attack in the past week.. i need to go for an MRI to Discover what type of TN i might have and what options i have then.. for me so far ive had 3 MAJOR Attacks where i couldnt think straight, couldnt talk, Couldnt stand... all i could do was writh, Wail, Beg Plead and Cry... im scared of my tomorrows, When BEFORE.. i used to LOVE what tomorrow Brang...
I'm 40 and suffer, I can't believe we live everyday of our lives in constant horrific pain.
God I ask you to help these sick people! I love you and pray for you ❤️
This is so sweet of you thank you ❤
The MOST horrific thing about this condition is they don't care enough to even look at other treatments!
I've been dealing with this for a little over 8 years now. I've been on just about every medication there is and have had horrible side effects to just about all of them except for the one I've been on for several years now. It.....helps... but it certainly doesn't get rid of it by any stretch. What is worse is that I was diagnosed with it a few months before my youngest child was born so he has never known me not to be in pain and he now has a phobia of storms (one of my biggest triggers is changes in barometric pressures). Flying is... well I am in so much pain that I have to take enough meds to knock me out and even then I am semi-conscious and am clutching my head in horrendous pain the entire time, but am otherwise unaware of anything else going on around me. Apparently I tend to scare the crap out of the flight attendants. Even driving for too long, or over terrain that is too hilly or large bridges can mess me up pretty bad. Opening the oven and the sudden change in temperature... just so many things that you take for granted prior to this condition and now you realize just how much they effect you. When the migraines hit people at work ask me all the time how I can stay at work with a migraine and I respond, "with my TN a migraine is a good day, cause it could be so much worse if one of the other two branches flared up instead". I have days I can barely talk, days I can't really eat. So yeah, a migraine is no big deal. 🤣
Omg I am so glad to find this video. I finally found other people who have my exact pain Electrical socks shooting pain inside your check from the ear to the jaw😟
I have just been diagnosed with this, the pain is unbearable, I would put down a animal if it was in this pain, don't know how long I can hang on, broke my back once, my neck twice, ribs, wrists, ankles, any of those pains are a walk in the park, to this pain, Please help
Jerry mate. I hope you're still around. It's not much help to say this, but I understand. I understand. I intend to write a book about this which I hope will inform others as to yours and others plight.
Jerry Allen My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
Have you tried B12 vitamins?
accurateclinic.com/wp-content/uploads/2016/04/low-Vitamin-B12-in-Trigeminal-Neuralgia.pdf
I just witnessed a new friend having a blast of this horrible pain. I'm sorry for all of the sufferers. It seems that many people affected by TN commit suicide because they can't endure the pain anymore. I hope a release is found soon. CBD maybe, has someone tried it?
Never loose hope be positive keep fighting god bless you all ❤️
Natascha Fiet try ldn
“I’m not living, I’m surviving” That sums it up nicely.
@@TraceyAOK me too..😿
I have had TN1 since 2006, I am furious at the World Health Organization for not recognizing TN, which would free up federal funding for research as well as get recognition from all areas of the medical community!!!! People just have no idea what is really happening to us.....the pain, fear, isolation and depression are almost too much for any person to endure. I am so angry!!
I wish somebody could help me diagnose this. I get random episodes of facial pain and everything from my cheeks to ears to eyes to nose and head hurts so much. I have been asking for death over it for so long. All the doctors till date have just given pain killers. I can't imagine how much this video touched me
Do pain killers help?
@@TT-fn1xb I don't know .but after every episode of whatever I have I try my best to dose off after eating strong ass painkillers. And I keep on going for stronger and stronger painkillers now
For me painkillers didn’t even touch the pain I felt. I’ve tried so many medicines, so many combinations and have now found a combo of oxcarbazepine and lamitragine to help. Everyone is different though xx
I'm thankful that I don't have TN pain on a daily basis, but when I get flares the pain is off the charts. It's like getting stung by 1 million bees. There have been times that the pain gets so intense and comes on so suddenly so I scream. People look at me like I'm nuts! I sure pray they find a cure for TN, as well as EDS. How many of you with TN also have EDS?
I can relate to this sooo much. Feeling like being stabbed with an ice pick.. I had two teeth pulled out when I probably didn’t have to. I’m so glad I was able to find out about TN via the internet, find a doctor and get an MRI. My heart goes out to all of the people in this video.. Thank you for making this!
I've had teeth pulled mistakenly as well. I still think that this started as a result of a screwed up root canal.
Nick The Dad..I too had good teeth extracted, only to find the pain was still there,I think dentists have become more aware of T N now, at least I hope they have it's just awful, I remember my surgeon telling me that so many suffering from this have made the same mistake.
Lauren Horii does it happens to women only ?
amro zein..No it can happen to anyone, my brother like myself also suffered from this.
No , women & men , children ..
I’ve had this , the only thing that i knew that worked was by chance here in minnesota, it was -25 below zero and while i was outside, i could actually swallow or what hav you without any pain but couldnt stay outside forever. Yes they tried everything but nothing worked except morphine while in hospital which then i became addicted too but it all worked out thank god! Anyone going through this now, seek help, dont give up,I also like to thank the doctor that finally diagnosed it and a dr. Tynon who i think is or was from st paul minnesota
I didn't know the term but the pain comes and goes.
I would make 1 hour voice notes ... Trying to help my jaw relax. This would help me forget about the pain and pressure on my face. I didn't want to tell my family about it. I feel embarrassed to be 27 with a neurological issue of a 40.
All I know is, The pain is gone and I didn't do any surgeries. I'm worried it's going to come back.
I assist my gums by brushing my teeth. I don't know why this is happening to me. I don't eat breakfast cereal without warming the milk. Long story short, I've decided to stay away from hard foods.
I feel like an 80 year old in a 27yo body. 😢
I've always tried to keep healthy but I guess my activities were not good enough. 😢
I'm happy to find this channel. I feel better knowing I'm not alone.
God says it's one of the effects of toxic tap water.
I'm from South Africa ❤
I was also diagnosed in my early 20s, my friends couldn't understand my mood changes.
i felt the same way. i got this when i was in my early 20's misdiagnosed for 20+ years and am disabled from it now . Whatever you can do to get to good doctors please try. PNI santa monica CA saved my
life . O had type 1&2 and was one of the worst cases they had seen .
I have been dealing with TN since 2008. Unbelievable pain! What else can I say!??
dave venable My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I was just recently diagnosed and it is absolutely debilitating I can't even work because of it or sleep or enjoy life and drs just look at me like I'm crazy
We see you, and we know your pain. Our hope is to one day give you your life back. Learn about our research at www.facingfacialpain.org
Yes Amanda I'm going through the same thing, bosses don't want me down on the ground stringing together cuss words then lay me off work because they think it's contagious and don't want to deal with it anymore.
I’m in tears right now knowing so many others suffer with this horrible life changing condition. Honestly the pain gets so bad I just want to end it all, I’m currently going though a bad episode and was in the ER last night for it. I hope one of the surgical treatments will work for me but from what I’m reading, I’m kinda wondering if anything is gonna help 😢 God bless anyone who is suffering with this, I believe it’s hell on earth
I was left with AD from Glycol Rhitz, painful numbness. Its hard to explain....I'm tired to talk to tell people. Praying for a cure.
Joanne Bascetta My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I'm also suffering with TN and I also cried watching this video. My life has changed so drastically since it started. The emotional toll that it takes on you is almost as unbearable as the pain. I've always been a half glass full type of person yet TN challenges my optimism as this affliction is so relentless and it just feels hopeless. Not to mention the rising cost of healthcare combined with the lack of support and treatment for this condition. This thing has killed my 'sliver-lining' mentality. Some people dream of hitting the lotto, I dream of a TN free existence. My heart goes out to my fellow TN sufferers. I'm so sorry this happened to you, to us, and to anybody, ever.
"I can't remember words"
I miss my mind the most. ATN
Diagnosed November 2019.
We know your pain. We are working hard to end it. www.facingfacialpain.org
I have it and it completely incapacitates me at times.
I have TN bilaterally , it breaks my heart to know I’m not alone and that more endure this pain.
We are so sorry to hear this. We know the pain all too well and are working hard to find a CURE. Join our fight at www.facingfacialpain.org
This video is a very actuate description. I have TN2 it's pretty constant, I rarely have the electrical shock pain, but when I do it is in my eye. The last few months my vision has changed a great deal. I've had this for approximately 10 years. I've have two teeth pulled and root canals and many unnecessary rounds of antibiotics. I finally got a diagnoses three days ago. I've started the carbamazepine and feel completely loopy and my mouth still feels like acid. Praying for all of us. This is rough.
I was just diagnosed tonight. My eye pain is excruciating.
Mine 3 yrs now....massage helps a lot
SAILESH S try ldn and amytriptyline
Hi I just saw your post from a couple years ago on a tn site. I to have severe ATN. Constant burning stabbing never ending. I’m wondering if you ever found anything that helped your pain. Any recommendations would be appreciated thank you so much hope you are doing better.
Anyone that has TN, needs to try *lysine.* I have had TN for over 20 years, and it is the only thing to stop the pain AND keep it away.
Please try it and pass on your results...peace to our pain
Lysine works bc yours is caused by the zoster virus. I use Valtrex to suppress mine, minimize my sugar and dairy intake, take B12 and Sunflower lecithin to help make my nerves healthier, and glutathione and milk thistle to help my liver detox...this all helps and I have been able to keep it under control most of the time. I still have pain every once in a while. I have had TN for over 30 years. This will only work if the cause is the herpes or zoster virus....For most people TN is caused by other things, unfortunately....
How much lysine do you take daily?
How much lysine do you take?
The pain for me started in 2010. The pain was strictly on the right side in the beginning but was sporadic and would only happen for a few days or a week or so every few months. I didn't get officially diagnosed until 2016 when my TN started on the LEFT side of my face as well and it got so bad that the flare lasted 10 months. I tried so many things before I finally had an MVD in May 2017 (I was 29). Then in the first week of April of this year my TN on the right came back with a vengeance. It's flared non-stop for almost three months and I'm struggling as I'm also having sporadic flares on the left now too and where I live there isn't a neurologist who takes my insurance so I had to be referred out and can't even see a neurologist until August so I'm relying on my PCP for help in managing pain and due to recently being diagnosed with several health issues she's worried about my reactions to meds (I have MCAS so it's a valid fear) so I only have Gabapentin, Tylenol, and alpha lipoic acid for pain management (though she did tell me it was okay to take one of my valium, which are for my back, if I needed it). I just try and take it day by day but I barely survived the ten month flare on the left side five years ago. So this flare scares me so much. My heart goes out to everyone who is dealing with this agony.
I am 36 and in less than a year I lost my career, lost all savings, I cannot drive, I am fighting for disability and I live day to day in pain.
I can definitely understand your pain I had suffered from this pain around 6 years now I am 70% recovered with ldn and amitriptyline
@@kalsoomafridi133 Hi I just saw your post on the TN site. I have a typical trigeminal neuralgia really bad many years. Amitriptyline causes me such constipation but thinking of Trying it again after seeing your post. Can you tell me what IDN is? And how much amitriptyline did you have to take for the pain to stop? Thank you so much if you do get constipation also curious how you deal with that look forward to hearing from you
I can just pray for y'all, please stick together with your own people 🤲
ive had this for 6 years, ive managed it with cannabis after trying so many prescribed drugs from my doctor, today i found out what this disease is by accident. Neurologist couldnt tell me, my doctor couldnt tell me what is wrong and ENT could not help me. today i feep blessed that i now know what it is. trust me CBD and THC help. CBD more so. Medicinal canabinoids are what we all need when suffering an attack.
I was diagnosed in 2020 I thought I was going crazy cause the pain is horrific 💔 😢 it has been four years now I truly understand God will make a way 🙏 in his timing stay strong 💪
😢❤💓💖
I don't talk about it anymore.
If and when I'm in pain the ONLY person I tell it to is my daughter.
Amanda, Amadori I have it as well and my daughter is the same way. She can just glance at me and tell. I had the MVD surgery with no change.
Amanda, Amadori My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
It gets to the point where people roll there eyes if you say "my face hurts" I'm done mentioning it. I feel like a cry baby but nobody understands unless they go thru it
I AM CERTAIN I HAVE TN...ONE NIGHT TRYING TO SLEEP, I WAS PUNCHING MY JAW OUT OF FRUSTRATION AND PAIN. BRAINSTORMING ...I WENT TO THE PANTRY AND GOT A MAGNETIC CHIP-CLIP AND PINCHED MY BOTTOM LIP (EAST TO WEST). LOW AND BEHOLD IT WAS INSTANTANIOUS RELIEF. MY CASE IS EXTREMELY SPORADIC BUT AS EXCRUCIATING AS ANY HUMAN CAN IMAGINE! IT MAY DISAPPEAR FOR MANY MONTHS, BUT WHEN IT HITS, I UNDERSTAND WHY IT IS COINED AS "SUICIDE DISEASE"!
I've had this for 31 years fortunately at times there were years between attacks. I have needlessly had most of the teeth on the right side of my mouth removed. diagnosed 2 weeks ago. its torture. Gabapentin has saved my life. Love to all who suffer with this awfull disease. Stay strong.
Simon H78 My best wishes to you! Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I'm not here to blow smoke up anyone's behind. I'm trying to push for a study because at the time, I also thought "hey it might help".
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another 'hit', this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find "the spot", other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser 'dose'. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition... Fishbowl fog dummy drugs then brain surgery when you can't handle being a zombie any more, that's it. And the surgery isn't 100% effective and lasts as long as 10 years. So you still live in fear - not that I don't. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that's because I don't have a doctor's help and won't get it until I flare up and get a proper diagnosis.
I've tried to stop my 'medicine'. I'm in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek 'draw up' a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don't have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I've tried, I may try again but I'm terrified. I wouldn't wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can't help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won't even risk an episode. Not to save my skin and not to help you. I'm sorry. If they put me in jail, I'll have no choice... It's a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into 'tweaking' where we don't want to go, that is a nasty road. Believe me, I've been there! If you hear of a study or your doctor actually cares, please let me know
I fell for you and my prayers go out to you. May I ask why you removed your teeth?
David Sanchez because if seems like a tooth ache
0640
I've had the pain 29 yrs now..waiting surgery soon
I’m so sorry for all who suffer from this.
Watching this video brings a tear to my eye how these people are so so brave and strong and true warriors how they endure and suffer everyday with this horrendous TN facial pain. Everyone of them are in my thoughts and prayers. I have PN nerve pain in my lumbar region only six months and it is exhausting me. Anyone watching this video with PN pain or TN facial pain please try kinesology tape to lift the connective tissue and fascia off the nerve and dry needle tindling helps too. God bless xoxoxo
I was pregnant when I had my first attack. Started with a deep, dull ache in my jaw. Drs, dentists, Drs dentist but no joy. Neurologist said there was nothing wrong with me. Holed up in my room, tearing out my hair by the roots, punching myself and slamming my head against the wall was my life. Without the baby inside me, I wouldn't be here. Those tablets were in my palm. I'd given birth to my daughter 2 yrs prior. She came out bum first and and I birthed her naturally without any pain relief. I'd do that again 100 times rather than suffer through TN for an hour. A new Dr prescribed Pregabalin which has it under control. My heart goes out to all who are still struggling ❤❤
I have had this disease since I was 16 years old. It Comes And Goes and I am in my 60's, I have just enough pain to let me know it is their, I can't sleep on that the left side of my face.. It I no fun having it for shore, I keep busy. just to keep my mind off of it... When I first got thise disease, I could not comb my hair or brush my teeth.. the whole side of my face felt like continuous Shock of heat sting pain.. not sharp pain, but steady constant pain.. not letting up at all.. I hate it.. I hope they come up with a cure..
The first time I had an attack of TN was in 2016. I was going for a weekend trip to Madrid and the pain in my jaw did not allow me to eat anything, not even soft food like the Spanish flan that I adore. I didn't know what was happening to me as I had never heard of the trigeminal nerve. I thought it was something with my teeth. Coming back home I ran to a dentist who took off a perfectly healthy molar. Only after several visit to doctors I was diagnosed correctly and prescribed with a medication - Carbamazepine - that made the pain disappear almost instantly. I thought it was a one time problem, but a few months later the pain came back. That time the medication took several weeks to eliminate the pain. Again, a few months later the same story but this time the pain did not disappear completely and I had to continue taking the med day after day, in spite of the side effects. At least I could live, even if permanently tired and feeling low. Two and half months ago the pain has returned, with a vengeance. Even with massive dosage of Carbamazepine and Codeine it never goes away. I cannot even sleep in horizontal, because the position brings the pain to the maximum level. I don't know how long I can continue in this way. Doctors do not seem to take it seriously. I am making plans to end my life if I cannot feel better soon.
I have atypical tn. I know how you feel it’s misery. Typical meds didn’t work for me I now take Oxycodone takes the edge off you might want to get give it a try, I also tried a few Dilantin I got from my brother prior to him dying of cancer it helped a lot but I don’t really want to get started on that
@@lindapelle8738 Thank you Linda. Since I posted that message the pain has decreased, but not disappeared. Now I am waiting for a possible surgery, even if I am not sure whether it can really help. I used Dilantin (here sold as Phenytoin). It helped, but with very heavy side effects. How is your experience with doctors? Here it seems that they don't consider TN a serious illness.
PLEASE do not lose hope. We are working hard to find a CURE and our research has made great strides. Learn about us and our work at www.facingfacialpain.org
I am 16 years old I was diagnosed with TN in September 2021 for the pain my Dr give me Tramadol this is very horrible my best wishes to those who suffer from this terrible disease.
Talk with your Dr and ask for Tramadol.
I have atypical TN related to 3 sinus surgeries. Have you tried Cyber Knife? I’ve dealt with all the drugs, injections, acupuncture, anti seizure meds , blocks and cerebral neurological stimulator with no relief. I’ve had TN for 30+ years. I understand your need for relief. The CyberKnife took 18 months before I noticed a difference. I was able to reduce my meds during that time. and began to recognize myself. But the pain is slowly and steadily returning. I’m going to repeat the CK in a few weeks. It did give me about 4 years of considerable relief. My pain is 24/7 with burning, deep, and achy pain with several triggers daily. And I do have ice pick stabbing pain in addition. I hope this will help you. You are not alone in this hell.
I have suffered with TN for 20 years and the pain is constant and never goes away! There are times the pain is so severe that I think of killing myself! The pain I have spreads out to three different locations at the same time and that is my left ear, left jaw, and the left side of my throat! The pain in my ear feels like someone is piercing my ear drum with a very sharp pick! My jaw feels like my jaw bone is being crushed in a vice and my throat feels like a shocking knife stabbing me in the back of my throat or like a bumblebee constantly stinging me! The pain normally is around a 4-5 scale and without warning shoots up to a 10! When this happens I just completely stop doing anything! I grab my face and squeeze as hard as I can and just groan as loud as I can until it subsides! The Dr told me he could take out the nerve but my face would drop as though I had a stroke and would have to have all my teeth removed from the left side to prevent myself from accidentally chewing my cheek and tongue! I’ve tried meds that seemed to help but was diagnosed 3 years ago with leukemia and had to stop those meds because I cant mix them with the chemo therapy drugs. Having said all that I found my faith and trust in Jesus Christ has helped me more than anything! Because I know He is the creator and the creator can fix what is broken! Although I still suffer with TN and now leukemia, Jesus has given me the strength to endure it! When the Dr’s are unable to help, Jesus Christ can fix anything! I give all praise to Jesus.
William bowen sir so sorry hearing ur experience...lets just pray together that God will find a way even sometimes we thought there s no way.....God s good all d time
Get the MVD surgery. My TN is seemingly gone. It's been 6 days since surgery, and recovery has been really hard so far, but I would rather deal with this than deal with TN for the rest of my life. Get the surgery.
Hi I had the same surgery @ St. john's Hospital by the PNI pacific neuroscience institute. The greatest doctors who understand this horrid disease that's stolen so many of our lives . Best surgeon ever.. Dr Garni Barkhoudarian Santa Monica, CA . look him up
My BESTFRIEND my SISTER suffers from TN The More I Learn, The more my heart breaks... the more I wish I could Magic it away... But It doesn't help... So I Pray To The Father To Take This Horrible Pain Away...
I've just been diagnosed with it never felt pain like it, in from UK England I've lost teeth because of this thinking its my teeth
How are you?
I just got diagnosed with this, but the pain is only one aspect. I experience shaking, grimacing, numbness, vision and memory issues... and much more. I think we have to cover all the symptom L’s more
OMG! THIS IS ME! I have been having this FOR YEARS thinking I had ear infections and would go to a walk in clinic and they would tell me my EARS LOOK FINE! I would tell them, "How is that possible with the PAIN I AM HAVING"? I had an ENT work up years ago and they found NOTHING. The saddest part is I am a NURSE and NEVER GAVE A THOUGHT TO A NEUROLOGICAL ISSUE! Not until a few days ago, when I was describing my symptoms to my niece (also a nurse) who said, "It sounds like you need a neuro consult". So I started researching and came across videos describing TN and I just wanted to cry because I knew EXACTLY what they were describing and felt I finally wasn't CRAZY!!! After years of being "blown off" by so many doctors I now know... I AM NOT CRAZY! Although I am extremely grateful I have not suffered near as much as many describe in this video. I know the pain but it is very intermittent (thankfully) but seems to be getting worse. I am so thankful my niece mentioned what I vaguely remembered from nursing school so many years ago. I feel so STUPID that I didn't even think of it and should have been more insistent with the doctors. Thank you for sharing your stories.
You are not alone. We are here, and we are working hard to find a CURE. www.facingfacialpain.org
First diagnosed on December 2005. Despite, I’ve been one of the lucky few since mine is episodic and up till now once an episode starts it takes 2 weeks to gradually get it under control with proper treatment. In my case the pain is behind the eye. Imagine attaching 1,000 pounds of weight to a very thin spring right behind the eye and set it up in motion with every pull making you feel unbearable pain in that one concentrated spot.
The first episode that affected me went misdiagnosed for 2 weeks and that was the first time in my life I had suicide thoughts.
I am dealing with pain behind the eye! It is so scary! I was just diagnosed like two hours ago!
I think the advancement to AD from my last surgery has made life such a struggle to live. 24/7 365 days every day of my life until I die. Wish I wouldn't have done the third MVD. I have had it from 28 was diagnosed and first surgery at 34. My face is ice cold and numb and I miss me. I forget now I traveled and was fun. Now I am in bed going out on good days. it breaks my heart how I have changed my husbands life. Even my kids have had to life with having a blob of pain for a mom. At least now the pain is always so I don't have to wait for the pain because it is aways there. The fight to stay alive is a tough one but I am winning in my own way. Loves to my fellow fighters.
I am going to get cyber knife treatment on tuesday. This video made me cry and has been my whole life since October. If anybody has had this done before Id love to hear from my fellow TN suffers
I'm a little bit frustrated because I have done this and got my life back and I have been spreading this info for a two day and I don't think anyone tried it...this puzzles me.
This is what helped me a lot...
Use blender or nutri-bullet:
1. Organic Ginger as long as thumb
2. 1 and a half Organic Lemons
3. One flat teaspoon of Cayenne Pepper
4. 4 1/2 Cups of Organic Black or dark Purple Grapes
5. One to 3/4 Organic Mango.
I see that most medications are not working so why you wouldn't try something natural which has giving me positive results?
Blend this combination you should get like three 8oz cups. The Mango is not as important as the other ingredients.
I had this and started to fell relief within 35 mins...honestly! No bullshit! The ginger and cayenne pepper are anti-inflammatory and the grapes and lemons work more for your Lymphatic system.
The pain I felt before was like a electrify knife is being shoved into my brain. The jolts that I got from that sensation/pain was unbearable...this was happening like every minute constantly. I am going to be consuming this combination for several days as meals and also other fruits...going raw. I had 9 cups yesterday and my pain went from a 10 plus to 2. I think if I continue the combination will nullify the inflammation. If you can try to cut back on acid foods like meat, chicken and diary...they do more harm than heal. Please acknowledge if you read this, I need to get the word out because it works.
Always consult your health care professional to see if you are allergic to any of the ingredients above.
Lets me know if you try it.
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REPLY
It's the pepper. Capsaicin to be exact. czcams.com/video/Z8nDVja636g/video.html
Are you still using CZcams?
Good I cried so hard watching this. A dentist broke my jaw is how I have tn and I’ve wanted to die so many times because of this.
Please don't lose hope. We are working hard to find a CURE. www.facingfacialpain.org
Doctors NEED to stop withholding narcotic pain meds for us with trigeminal neuralgia. They treat every one of us as drug seekers... They gaslight us with chronic pain.
Except narcotic pain meds only work on SOME people with atypical pain. I have both typical and atypical TN and narcotic pain meds don't work at all for me. They did a study and narcotic medication only has mild pain relief on average. The facts are the mild pain relief isn't worth getting addicted to those meds which is why they don't give them to people with TN. It's not gaslighting. The meds, honestly, don't work for the majority of people so they don't see the benefit of giving it out to people that it's unlikely to work for.
@@duchessliz2415 That comes from a fear of pain meds. Fear porn from doctors and dentists to scare you from relief. All due to the opioid crackdown ans fake epidemic. Did you know alcohol kills 50x more people every year than opioids? Did you also know that only around 3-7% of those overdose deaths are from actual prescription pain meds? Yep MOST are by street drugs, fentanyl, heroin, meth, Crack and most of THOSE that overdose have over 3+ different narcotics in their system. That's real facts. Also every medicine you take is addictive. Every medicine you take will give you withdrawals upon coming off them. My mother was on Gabapentin and had severe withdrawals after getting off. You go through caffeine withdrawals if you stop drinking coffee. Even motrin will give you withdrawals
@@Tootswilligers THANK YOU THANK YOU THANK YOU for this! For anybody who suffers REAL 10 out of 10 pain, the ONLY thing you want is for that pain to go away ... or at the very least get a little better! I'm starting to question how severe the pain actually is for some of the people not wanting to use narcotics! There are MANY times I would try absolutely ANYTHING to make the pain stop... so it would be far safer to have that option available to me rather than the alternatives! Please dear pain suffers, don't be afraid to try narcotic analgesics!
Video made me very emotional, my fiance has been struggling with this for the past few years...these last 4-5 months have been absolutely horrible. Everyones expirences with it sound EXACTLY 💯 how she describes it. TN SUCKS!! Hoping she can find someone to do the surgery but it seems like nobody wants to do anything or just say theres nothing we can do for you...😢
April will be 3 years. We gotta get a cure. I'm tired of this living hell. I used to be so strong. Worked in warehouse for 6 years, could live 90 pounds and head bang at Rock shows. Now, most days my 11 lb cat is hard to pick up, even if I turn my head too quick I can get dizzy and sometimes pass out and basically just had to give up my social life and going to live music. I'v literally had to change and give up my whole life. Because I'm not missing an arm or a leg or I don't have full-blown cancer, the intensity of my pain gets blown off so much. I have no support from my family and one by one "friends" have fallen off. But of course when I was going up doing well in life. Taking cute pictures posting them on social media people wanted to hang around.
I can't do this for the rest of my life I'm not even 29 yet. Ever since I was 6 years old and I understood what money was I wanted to get a house for my mom and I, since she can't take care of herself. I worked really hard jobs to get high paying money and one after another I've just had health issues for the last 7 years. I feel like my life ended at 22 and I've just been a ghost trying to push through. I can't do this forever alone and I shouldn't have to. I particularly got my trigeminal neuralgia from a ping pong size tumor wrapped around the trigeminal nerve. Three brain surgeries later the damage was already done. I don't understand how the body could be in so much pain and still not die. I used to be so kind and loving. I would always get compliments about my energy. Even from a young child I would draw people towards me. I let too many of the wrong people in and I've been very sick since. My soul is breaking.
#trigeminalneuralgia
I have had trigeminal neuralgia for about 2 years.I deal with excruciating pain daily. Nobody believes when I try to talk to them about it.I hope and pray we can get a cure.I read that Olive oil can help.Take about 4 tbl spoons aday.
I am suffering from that same pain for many years, until my naturopath doctor told me that I might have TN. So she told me to spray my head with DrMaggie magnesium spray, spray dry repeat technique for an hour, daily. And it did work. I thank God for giving me Dra. Jean Cruz who is my pain saver.
Has the pain gone?does the spray work
@@iam9061 yes it works. I just followed what my ND told me, and it amazes me.
@@meahr4654 👍
I got sick at the age of 16. My life is ruined. The doctors didn't know what was wrong with me. They wanted to lock me in a psychiatric ward :(. I carried out 3 head operations to no avail. I talk about it on my channel.
Great to speak up I was diagnosed with stage 5 cancer spread to my trigeminal in wen through chemo radiation 8 months out it hurts like hell night air breeze can trigger it my oncologist thinks I'm crazy when I complain about it
. getting ready to get to rid of him meant stage 4