Living With The World's Most Painful Disease | MSNBC
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- čas přidán 28. 02. 2016
- Amanda Young, a 39-year-old fitness instructor in Brooklyn, lives with Trigeminal Neuralgia. It’s a disorder that causes facial pain so intense it’s commonly referred to as a the “suicide disease,” because many who live with the condition take their own lives rather than live with the pain.
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Living With The World's Most Painful Disease | MSNBC
I'm 17, and I've had trigeminal neuralgia since i was 6 years old due to a head injury. To everyone here suffering this, take it from me, it gets easier to bear with every day that passes. Ive collapsed, been hospitalised, MRIs, and more. We're not TN sufferers, we're TN warriors!! I'll survive this, and so will you.
L E stay strong! Ik you can do this, people with TN are the strongest people to have ever lived to be able to go through this. 💜 I know you can do this
Amen IrishQueen! God bless you and all the TN warriors family
I’m 18 and have this thank you I feel less alone
@Ron Krikorian Here's some good news for you buddy: I just turned 20. My medications are working. I actually had my first bad day in a while today, and I coped with it. I haven't been in hospital in over a year. You're gonna be okay. Keep fighting until you find the treatment that helps you the most, and then fight some more. You got this.
Please consider seeing a neurologist who can recommend either Tegretol or other medications use for seizures. Or as most people they opt for surgery. There is hope.
The old guy hurting is what got me :(
Drunken Sailor 🥺
As someone who suffers from Trigeminal Neuralgia we definitely need more awareness. The more people are aware, the better our chances are for getting funding to hopefully find a cure. God bless everyone who is also suffering from TN and any other chronic pain conditions
Life is truly a nightmare.
smokyp3nguin yup
smokyp3nguin I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
I have that same thing. My dentist told me what it was and you're right it's one painful nightmare. I don't know why it just shows up out of no where.
Michael ._. Not really for atheists. Ofs
Yes it most certainly is
I cry with the attacks... I feel like such a burden on my family I hate this... Having this disease has made me so depressed and feel worthless sigh. Sometimes I feel like my family would be better off without me.
silver mist I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
That feeling is the devil knocking on your door. Don't ever think that. Either way, I'm sure your family don't feel that way.
It doesnt make you a burden at all, you having that disease isnt your fault, live your life and know you're loved
I can totally relate. I'm not the person I used to be. It's robbed me of so much already and it's only been 2yrs.
Capsicum
Haven't had a flare up in 2 years. God bless.
Fat Cat I’m so happy for you. Thank God. In the middle of an attack now.
How? I'm hurting so bad right now
@@adambailey3811 I had the nerve cut during oral surgery. It took a yr of non stop horrific pain that I still 20 yrs later cannot believe how I went thru it! My neurologist put me on Neurontin 3200 mg a day. With the hope that the msg from the brain would no longer make the same connection. He told me it would probably be just an all of a sudden thing like turning off a light switch. After a yr I was still working( how did I do it?!!) + all of a sudden it stopped. I kept waiting for the pain to start again. After a few months of no pain I was gradually tapered down to 400mg 3x a day. I take this because I do not want to chance the pain coming back. Pls see a very proactive neurologist. 👌🤗
How're you doing?
@@kayzeegirl972 So have you been pain free for 20 years? Sorry if I misunderstood
My mom has this kind of disease and every time i see her suffering from the pain it hurts me so bad. i am desperate to find at least something alternative to reduce the pain that she suffers..
Voniksi Daily
I can't even imagine having your own mother screaming in agony and there is nothing you can do. 😔😔😔
Me too. My mom has it
lsd saves lifes
SUPER SILVER 05 give her lsd my friend google it
Try medical marijuana?
nobody can live like this!
You think you can't...until you have to.
Aren't there ppl who end their life's because of this? I'm to afraid to look it up, but they need help there needs to be more reasearch on this topic it's terrifying even if I don't have it I'm so scared what if I get in one day it's so scary and if I let things like these get the best of me I could become almost paralyzed with fear.
Untill u have to.
@@nefelibata4190 its nicknamed the suicide disease. We have to live with it. We have no choice. I have kids I need to take care of. I cant opt out because my face hurts. Many do tho. There are surgery's but they dont always work. The idea of brain surgery turns many of us off.
@@ThePicesgurldon’t get the surgery they drill into ur head which is whole lost riskier
Wow. Good on her for having such a positive outlook. Sending online hugs!!!!
Juniper Hall The most normie comment on CZcams
Good friend comment award!
Juniper Hall I have auriculortemporal neuralgia which the neurosurgeon I spoke to said is even rarer. I have not found any support with this specific condition so I often visit the atypical Trigeminal Neuralgia groups or use #atypicaltrigeminal neuralgia. I found Amanda that way and I must say her positivity and encouragement has really helped me get through dark times. I don’t know how she lives with this for so many years but she is an inspiration. I like how she says she doesn’t want the pain to define who she is. I hope someday there will be a cure because right now I can barely get by with this 24/7 pain
dealing with TN for 5 years it is never easy somedays I want to give up. God helps me daily. Glory to God for pain free moments.
Heather Wright research suggests marijuana cbd helps
This disease might be my biggest fear
Owen Reese it should be, it’s pure suffering
45000 ppl out of 350 mil in the US I think you will be alright.
Me too. It's so weird, but I think about this a lot 😱
TeacherTeacher it’s very rare so your odds are good. Don’t obsess and be grateful everyday for everything your body can do!
It's excruciating and sometimes unbearable, Hon. 😪
Gosh I feel so bad for her and everyone who has this :(
I don't have this, but I do suffer from a severe chronic pain that the doctors don't know what it is being caused by. Just touching me almost sends me to the ground. I couldn't imagine living with that pain 24/7. Good on everyone for trying to find a cure.
Sound like you might have small nerve neuropathy
Maybe you have fibromyalgia
As someone with TN, I love her positivity makes me motivated to move through my attacks. My triggers are pinches in the area that has the most pain. It hurts more than words and more than what you think it feels like. Thank you everyone who is so kind to help others. Thank you.
Prєcíσuѕ Bвч I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
I recently got diagnosed on April 18th, 2017, at the young age of 20. I've been suffering with this for the last 4 months, and it seems everyday it gets worse. I'm hoping they find a cure for this disease.
I'll pray for dear don't worry god loves you...☺ be happy
Do you take tegretol?
I have a question, how does it start? Does it start by an accidentally hurting yourself anywhere in your body? I have a rare form of dwarfism and I think I might have this as well. I had so many surgeries growing up to correct my bones but I'm in pain 24/7 and heavy medicated for it and yet still with pain. I can not sleep. It hurts and my family thinks I just want pain meds. I'm very depressed...
Sara Pearl Payne I hope you get better. I’m 26 I’ve had trigeminal neuralgia on and off since I was in 5 th grade.
Microvascular decompresesion procedure...it have a 90% possibility to heal trigeminal neuralgia for good/permanent
i have that disease since i was 24 years old...its the scariest thing that ever happened to me...even when i'm in a relatively good condition I'm always afraid that it can come back at any time!!plus trigeminal neuralgia always comes with depression!!!
Ermis, just a thought. if you haven't looked into NUCCA to treat TN, it's worth your time. it has done the trick for me.
any links? what is nucca
I'm 38 now, had this neuralgia crap for the last 8years. So far it's cost me my career (multiple jobs) and my life savings. I haven't been able to work in the last 5years. It's evil.
I have MS and have had TN, it's bad, really bad (I went to the dentist and asked him to pull all my teeth, thankfully he didnt) but it's a walk in the park compared to Intercostal Neuralgia! Yup, living with MS a chronic progressive disabling disease is scary, you never know what's next! Stay Strong little mama, mayby one day someone else won't need to suffer like we do....Best Wishes!
@@victoriousvic1707 to call TN a walk in the park is such a stupid thing to say. Downright disrespectful.
A friend of mine got diagnosed with this, here to get a picture what it is so I can support her the best I can.
Having lived with mild tinnitus for a few years before it got very severe due to unknown cause I ended up in a suicide spiral, 2 years after it got worse I could start life again slowly, but still suffer every day but not as much.
She was there for me through thick and thin and I owe her to support her through this no matter what.
Stay strong people, it looks horrific and i pray for a cure as I do for my severe tinnitus.
Hello I was just diagnosed with this horrid disease. I'm only 22 and I've been healthy all my life until this came along. I'm extremely depressed as it's so difficult to do anything I enjoy in fear of triggering the pain.
Hello, Parcel Pandora. I was diagnosed about 8 years ago, but the symptoms started almost 3 years before that. You have no idea how I understand your fear and your sadness: I felt so alone and misunderstood I used to cry every time I thought about my illness and how hard it became for me to find Tegretol (Carbamazepine) in my country at a point. Tegretol is the medicine I take daily to control the symptoms from appearing or scalating (talk to your doctor about it to see if you could take it). In my case, what triggers the pain is stress: it seems to accumulate, like if I manage to keep it low nothing happens, problem is almost everything can make you stressful, so I had to learn, not just how to take bad news or challenges as calmly as possible, but also how to get away from (and sometimes even get rid of) people, relationships and situations that may cause me unnecessary frustration, pain or anxiety, because when those 3 things become stress the pain comes and ruins everything by making it WAY worse, so it's not worth it. About a year ago, when I was feeling very much alone in my pain, a friend told me that there was not much point trying to be understood or get a little sympathy from people that may perfectly never understand what I go through with this TN, it was better to work with myself, to own my limitations, make sure to follow my treatment, and just live! I've been lucky enough not to get clinically depressed -just really sad, lonely and self-conscious- but if you feel you're near bottom, PLEASE talk to your neurologist about it and reach out for psychological help... This illness is extremely frustrating and it can put you down so fast when that horrible pain strikes, that you need to have your emotions under control so you can deal with and endure it. Just remember you're not alone, this might be a call for all of us who suffer with this, to be stronger or braver than we might have been otherwise.
Until you find out what triggers your TN and find a treatment that suits you, I hope your pain and your depression get better and let you start with the accepting process. Best of lucks for you!
Chiropractors cold laser I have TN too but it’s has got better but you gotta be patient
We're you on any psychiatric meds when you got it? Or were on them before?
God is there no worries
Capsicum I had sm attack took it and it went, hot shingles the next day, it works
Fighter since 2014. Remissions are getting shorter. Life getting harder. Disibility benefits are not enough. Depression deepens.
I have trigeminal neuralgia caused by severe facial injury, so I similarly have the permanent pain as well as the striking pain with all touch of the surface of my skin. I've managed 6 years (since I was 19) but it is becoming more and more of a mental struggle to manage now. I've undergone 2 surgeries with no benefit and I'm really feeling out of options. Great to see someone out there making a difference.
Chris, I also have TN. it's almost down to zero pain now because of NUCCA treatments. have you looked into NUCCA?
+Brent Yergensen I had never heard of it. After a quick search I have no idea how that could help.
Also my TN was caused by damage which can't be tracked down even with MRI or CT. So it's unlikely to be effective, even if you have found relief that way.
+Chris Searle its worth a try. mine was also damaged. nerves heal in time. you'd be surprised how many tn people have found relief with NUCCA.
best either way.
I am taking Tegretol and so far it has helped me. My pain was caused by a dentist hitting the nerve! On a scale of 1 to 10 mine was 45 and most of the time at night and maybe would last 4 to 5 minutes. Applying heat did help a bit.
Glad that worked for you. :) I was on it less than a month. Started feeling funny after a few weeks. A few more days I felt "off". Sort of 'floaty", a bit like nothing seemed right around me. I knew a side affect for some people was low potassium. So I hopped in my car, went to ER. They got me right in. I told them to please check my Potassium, and why. 2 hours later "feeling any better now, with the fluids etc?" NO. Ok, let's get a scan. $2000 for a scan in ER. PLEASE can you check my Potassium? 2 more hours and then.. had to draw more blood for the potassium. YEP Very low, you're getting admitted. Took 5 days to get it to start rising. They said I was lucky.. that some people go into a coma in these lower numbers. Pffft. Thanks. So.. always be careful with new brain medications, or meds that effect you're whole body, like thyroid, and all your varied electrolytes in your system that MUST stay in balance to live.
TN is truly a horrific beast. I was diagnosed in 2010 at at age of 36. Thank you for your energy and ability to spread awareness 🙏🏼⭐️
Reading the comments has made me feel like I’m not alone in this. I been suffering from trigeminal neuralgia and I just turned 25. Most of the time I can’t even put my pain on a scale from 1-10 cause it surpasses that. It’s only when I’m on hydrocodone that I can get just the minimum amount of sleep. It helps to take my meds every four hours even though the directions say “take it every 6 hours”. By the third hour my pain is already at an 8. Icing really helps too. I hope everyone stays strong. Thank you all for sharing.
I got diagnosed with trigeminal neuralgia and I am only 32. I am hurting so badly right now
i think i may have this. went to the dentist today and my teeth are ok. he pointed me in this direction and so far, everything i read or watch is on point.
32 and i have had it since 09
im 32 i just had surgery for it and its helped alot. dr. john Anson in las vegas. this isnt an advertisement for him he just helped me
God Bless You💪
I was diagnosed 3 years ago, I was 17. We`ll survive
I honestly can't imagine living with this and being as positive and encouraging as she is! I hope that all of you suffering from TN will be able to get the help you need and deserve!
As a full time operator and mom of two little ones that suffers with this…thank you for sharing your story. And thank you for not sugar coating it. I try to hide the pain from everyone and after 3 months of daily torture I couldn’t hide it the other day. My husband saw it full force as I’m laying on the floor bawling my eyes out, having tremors from the pain being so bad..and my husband started crying. He said, “THAT is what that feels like?!”. After it stopped I said, every single day and I am so sorry you had to see it. One day flares went off for 12 hours straight. And the worst part of it all is that no one understands. No one gets it. It’s not widely enough known and there are people out here dealing with unbearable pain just pushing through. It really changes your perspective on so many things
So painful!!! Screaming in my pillow so intense. Had it in my forehead upon waking up for three days. Years later hospitalized and diagnosed with MS.
As someone who sufferers from this daily after 2 microvascular decompression of my cranial nerves ....the flare ups are horrible ...TN AND I ARE NOW JUST FRIENDS ...IVE HAD THIS SINCE 1998 ITS 2023 ...NO YOUR LIMITS ...AND GET REST ..STAY STRESS FREE ...STAY AWAY FROM STRESSFUL EVENTS...I LITERALLY HAVE NO ANSWERS EXCEPT...DO LIMITED PEACEFUL THINGS ..LOVE YALL
I went to the Dr today and they said they think I have this. I know Im not alone. Many prayers for everyone suffering ❤🙏❤🙏❤🙏
I’ve been living with this beast for 10 yrs and it only gets worse by time . Thank you for sharing hope. ❤️🙏🏽
Ive had an inflamation of this nerve and Im telling you its the most horrifying pain you will ever feel. I went to hospital in the middle of the night crying.
I hate having this. Good for her cause it puts me down down to the ground.
I am 68 and had this for 5 years. tried everything. I found that neck stretches can really help.
I am sharing the same painful journey of yours..everyday bearing this intense pain is something which is indescribable.
You are doing a great job even with this excruciating pain .. keep going strong..
Pooja Brahmi I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
I suffered from TN for over 10 years worst 10 years of my life. Back in 2017 I had MVD surgery and it saved me, I had almost forgotten what it felt like to be normal again. I still remember the day I was able to dry my face with a towel again, it brought tears to my eyes. I can only hope a cure will be found one day.
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
My 13 year old son just got this diagnosis. I am dying inside but giving him a brave face.
Omg ive been suffering from pain like this from the age of nine to now finally a voice for people like us
How old are you now?
She is really strong! i`m 20 y.o and was diagnosed with tm 2 year ago. since then i become really depressed and almost lost control of my life. It is sad that lots of people still have no idea what tm is and that live with it is hard. they be like "it`s just pain in face and you doesn`t look sick" and you just sit here and feel like someone is drilling hole in your face...only other people with tm and their families can actually understand you
How are you now? Mvd did not help one of my known too no option left then
This is EXACTLY what I'm going through... it is very depressing and lonely. Doesn't seem so "rare" though... so many of us are suffering with it... I had 4 painful dental surgeries thinking it was my teeth... it's been a year, I'm just trying to find relief at this point
I'm a 24 year old guy and I have this horrible condition. I have an extremely high pain tolerance according to my doctor and my dentist. Last night I had an attack that lasted a couple hours. I was laying in bed literally crying. I'm one of the ones that also has respiratory side effects and body temperature irregularities. When my attacks happen breathing alone is a chore. And my body temperature sky rockets. I have a portable AC in my bedroom set to 60. And I'm standing in front of it with sweat dripping off of me. I also suffer from occasional black outs. I've had 1 black out from a random attack while driving. Almost ran my F350 off the road. Luckily it only lasted a couple seconds. I wouldn't wish this pain on anyone. I can easily see why it's called the suicide disease.
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
I am 16 years old, I have been suffering with TN for about a year now. I am refused all medication and all help as I am under 18. I have never felt more angry with the world, why does my age matter, I need help!
Peony Lawrence get help from your parents
APO _ what can they do about it?
Peony Lawrence I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
@@PrincessAfrica3 thank you, everyone at my church is praying for me and I will definitely be trying the fasting
@@peonylawrence8934 how are you now??
I've battled TN for a decade now. I'm also a fitness instructor. This video really hit home. I've had MVD surgery 6 yrs ago and the pain has returned.
There is no cure for this disease even my doctor told me to decline mvd till age of 50 as he knew that surgery is risky and recurrence of pain is there too in some years
This poor woman. Stay strong!!
Praying that they will have a cure someday for the people who have this.
No no no. I can not take this. A dentist allowed someone who is not qualified to do the job. Covered it up and the dental board called him … he gets off scott free. I just want help! If only I could talk to their attorney… I don’t get it. As a medical advocate, this blows my mind.
Prayers to all those suffering and to those having to watch their loved ones go through this💛
I have atypical Trigeminal Neuralgia. I guess I'm lucky in that I'm not always in pain. When someone tells me to take an Excedrin, I just want to scream.
Earl Garcia same i have atypical TN ,
I need advice its been 2 months now iam 29
How long have you had it and what are your symptoms like ? What gave you relife,
My pain mainly starts on my left temepel then cheeks gets fuzzy and my nose ,
Pain gets so bad i faint to sleep sometimes and i get couple of days nearly pain free days ,
I want to stuff the bottle down their throats through their nose. Yet, I just smile and hope they never can understand why I want to do this with that lovely pill bottle. I find the act if screaming makes things worse on my side. Throwing eggs at trees in the other hand can relief a lot of stress. It's even good for the tree, just hose them down when your done. My husband knows I had another of those experiences with people hen he sees the empty carton(s). He just grabs the hose....
T Jean - I'm on crutches due to CRPS. CRPS is basically the same as TN in every single nerve of any spot that is effected. CPRS can happen in just one limb all the way way up through the entire body. Mine started in my right leg and has spread to my whole body. I now am on 9 oral meds to help manage pain, along with getting nerve blocks done every other week, I get IV lidocaine every other week, and I have an electrical device in my spine to help scramble some of the pain signals before they reach the brain. Every with all of that, my overall pain sits at a 6-7 every day.
And yet, even after hearing that I have CRPS, plus a skeletal diseases that's damaged my right hip, Lupus, and RA (the CRPS causes autoimmune diseases), people tell me they totally understand what I'm going through. After all, they "sprained ankle once and it really hurt and they had to use crutches for 3 whole weeks!" My mom has had to grab me and drag me away from people before I offer to shove my forearm crutches where the sun don't shine and see how well they walk then.
I have aytpical trigeminal neurolgia. The pain is there 24/7. From a failed balloon decompression to an mvd and soon a surgery for electric nerve stimulation. The surgeon says its my last option. This will be my 6th brain surgery
@@cookimonster6156 why you opted mvd ?? Did you have any vascular compression in fiesta brain mri ?? And how 6th surgery can you please tell
I being dealing with that condition over 15 years and it's not easy it's the worse pain.
OMG!! how awful! These people are amazing and SO SO BRAVE to deal with this every day!
My mother has had this illness for almost 30 years. She still does everything! Don’t assume you have to give up your teaching!!!
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
How is she dealing with it??
I suffer from cluster headaches. And i tell you that i feel like putting a 45 cal slug thru my brain right now!! This is the most painful experience ive ever been thru.. Its worst then when i broke my right ankle.
I have clusters too :( Cluster headaches are also called ciliary neuralgia. It's been the worst cluster of my life right now.
Mine started with cluster head aches
Imagine that cluster headache but one million times worse and that's Trigeminal neuralgia.
Try both
i was diagnosed with cluster headaches and have the typical epiosdic bad attacks that last about 90 minutes however i also get a constant lower level pain in the same eye nose area not during the "attacks". does anyone also get this or does it sound more typical of trigeminal neuralgia ? or both?
"Researchers are trying to find a cure by 2020."
it's 2020
There are cures now. Trigeminal surgery is instantly effective.
@@JustinLHopkins It depends. Sometimes it works. Sometimes it doesn't
Justin Hopkins that’s called MVD and it can cause Anesthesia Dolorosa.
@@vanessamontgomery7400 true and i have seen case of it and even it is too risky and life is not like earlier ones but person in pain opted it when in pain as only some successful cases for long time make it like it's cure but people don't see worst cases that is the reason mvd is famous
@@Asianess23 don't go for Mvd its bad and here people get impressed by some good outcomes but have you seen all cases ...
Folks please this is no joke seeing those people have an episode…I have been there and it is aweful, like 1000 hot electrical nails stabbing you in the face over and over. I am a tough guy but this defeats me. You couldn’t hit me in the face as bad as this hurts ! I am seeing a neurosurgeon in the morning to go over my MRI for Decommpresison surgery. One of the like 3 treatments that may work I have had it since 2007 and it has effected every facet of my life. A few meds help but it lingers and can be triggered but a cold breeze brushing your teeth eating smiling never know it sucks honest to our Lord..
I have trigeminal neuralgia and I recommend you do the brain surgery I did and have been pain free for over 8 yrs now
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
I’m struggling with staying positive after my diagnosis!! Watching this video was inspiring. You’re not alone, and I pray everyday we can get a cure for this disease. It’s the worst thing imaginable
Hi all. Hello Amanda. I have G.N.=Geniculate Neuralgia. It's the same thing as TN, but in your ear canal/drum, the actual ear, the skin up to an inch around the ear, and the crease and tab. That was in 2008 when it wasn't every day. I rode thru my drill team and helped an ex heal from cancer. By 2009 I had to quit my full time biz, I owned and created. My pain was daily. It rendered me dysfunctional. I was so fit and felt so great before this came on. I also had to quit a 2 year program, I was 9 months thru training. I would have been a riding instructor for children with disabilities and disease. I came very close to teaching my first class but the pain had gone too far. Leaving was really REALLY hard. It was a huge dream for me. By June 2009 (14 months later), something new happened. I'm not suggesting this will happen to anyone else. I just know the absolute dark scary fear I felt the morning I woke up, and couldn't speak. It had spread to the left side of my voice box. ANY vocalization..even if a "ohhh" for pain.. nope.. ANY of it made me get stabbed with a jagged knife in my throat. I've been single since this got going. I had no adult in my life nearby who could help. I drove to ER cuz I couldn't call to talk to them. They gave me something to calm me. But there was nothing they could do. I had Glossopharyngeal Neuralgia. About 4 years later it spread to my face. I did have surgery for the throat pain. Neurosurgeon went to the middle of my brain and severed the 9th cranial nerve, and a portion of my vagus nerve. So that is all fine. I just don't make saliva after that so water goes everywhere with me. I still have TN and GN. But .. thank GOD I found a dr. who help cure me, to speak again. I pray NOBODY has that happen. BUT IF IT DOES.. there IS a fix for that, that you aren't giving up a LOT for. Dry mouth does cause teeth to decay faster. You must keep up on oral care and rinses to keep your mouth moist. Best wishes to everyone. All of you. And, if I may ask this.. if you do more "AWARENESS" fund raisers, could you toss in Geniculate Neuralgia? It so much more rare than TN and many doctors have never had a patient with it. THAT costs me a lot of loss and wasted time. Thank you.
Jae Emm omg i have tmj and ive had the same fear of not making it through a 2 year program. luckly i finished another program before it became worse but still id like to go back to school. i dislocated my jaw by biting a burger, then poped it back to place myself. had speech probs.(still do) wisdom teeth came out and shiftd teeth causeing pain. then i had them removed. i also have to carry a water bottle everywhere because since then my mouth becomes extremly dry. & i notice when i drink coffee it gets worse dry. magnesium pills help with dryness n jaw itself. :) god bless you.
V Row.. Thank you for reaching out and openly sharing that. I'm so sorry. I can't imagine the measure of pain of pushing your mandible back in place by yourself. Awful. When my baby was two, her big sister (9 yo) loved to give her piggy back rides. She pulled her up by her arms to plop her on her back. The angle pulled her shoulder out of place. We ALL heard it and I was a room away in the Kitchen. We drove to ER. FORTUNATELY..,, there actually IS an INSTANT cure for that. The dr. told me to hold her and NOT let her move at ALL. NOt even an inch. He said wait til I come to her to do it. Stay calm, and I promise you, in a blink she'll be laughing. She was in SO much pain. He did a twist and shove all at once.. she didn't have time to get a full scream out. She stopped crying and giggled as her tears stopped. Why tell that? Because dr.s should figure out ways for adults with things pressing on nerves, veins pulsing on a nerve sending inTENSE pain like a blinker. I am so sorry for your pain and losses. I don't have any social media accounts. Except if you count this. It's no fun having people always asking or NEVER asking... NO middle ground there, on "How are you today? Did you have a good weekend 'at least' ?" We don't want to be the cold wet ragg on all the fun and sharing. I still have not figured out how to be "In" without lying, and still be comfortable as I can that this is each of our "NEW LIFE". It hurts. It hurts SOOOooo much more than anyone without this disease can imagine. It's not just the physical pain. Which, again, is rated in the UK as the most painful disorder for humans. BUT NOBODY knows about it. It makes us sound like whiners if we say anything. And if we just lay it out there and be bold.. people pull back. They can't deal with that kind of honesty. Pain is only half the problem..a BIG problem. FACT: OVER 50% of people with G.N., or Trigem. N. commit suicide instead of dying a natural death. Quality of life is so poor... and no ONE wants to be pitied. I think that "PITY" should be a medical "N" word. NOT just saying it, but feeling it toward someone. Again, it's like feeling prejudice toward people who are a different skin color than them. PITY HURTS THAT BAD. Those disgusting looks of pity just burns-AND from some so-called friends or caregivers. They give those looks and words as if they are being kind...but it's a "P" word. PITY IS TERRIBLE, DISGUSTING, EVIL, MEAN, and SHALLOW. It's what people say in movies to slam the underdog. I had a best friend from high school re-connect via FB. His wife had died instantly in front of him with a cranial vessel that just blew up. They all knew it could happen. But she just dropped to the floor. Dead before she hit the ground. I connect and offer to help him if ever he'd want help with his little girls. And then he hears my story a year later and gives me a fresh stack of Pity. WOW. That was a very defining moment for me. That made me deleted all but my closest friends. We do not want, nor deserve pity. We are FREAKIN' HERO'S! THOSE THAT ARE STILL STANDING>> YOU GUYS ARE ALL
SUPER H E R O E S !!!! You are grabbing the reins of life and saying.. NOt on MY watch. I"m NOT letting you freakin' take me down. I is HARD. So my dear friend I haven't yet met, carry on. You have already won the day. You're here, and you're taking it, and giving it a few punches along the way.. by doctors, and reading, and allowing butt-heads to say the most ridiculous, awful things and smile while they say it. YOU survived that.. ALL of you with RAW NERVE PAIN. RAW NERVE PAIN means the LITERAL nerve feels as if it's exposed to the air. And if a single tiny strand of hair touches where that raw nerve feels it..you are getting a pain smack down. RAW nerve pain means PRECISELY THIS: If you have heard or been thru the nifty treatment of a root canal or two, you MAY know what raw nerve pain is. You can at least imagine it with this description: You go in to the dentist, sit down in the chair. Life is cool. All's good. You know you are having a root canal. But heck your doctor is going to give you pain blocks. He's been drilling and almost has the tooth open to remove the nerve. Then the evil daemons come in and strap your limbs down, put wedges in your mouth so you can't close it, and they pull one strand of hair out of your head, and poke it into the tooth where it lies exposed.. and dance that hair on your open nerve.You break out in profuse sweating, horror, fear, bewilderment, praying, begging, STOP THIS! NO ONE SHOULD FEEL THIS!! Raw nerve pain is when the dentist doesn't numb the nerve. If you took morphine drip while they shoved hairs into that open tooth.. you'd feel everything. Morphine doesn't stop the pain at ALL> It just weakens you to fight it. Tell that to the "friend" who offers you some really cool information they saw on the Doctors, or Dr. Phil, or CZcams, and they KNOW this will help you SO much. They haven't a clue. They think all the times you get together, that you are fine. "You were fine last night? What happened? Did you hit your head getting out of the car? I just don't understand why you are resting almost all the time. If you would just GET UP and do things, you WILL feel better." B.S. people. If it was THAT EASY, do your REALLY think the stats of 50% OR MORE people off themselves to escape the life they were handed at age 50 or so? (typical age, can be 16 yo. or 80 y.o.) Cancer patients do not have a 50% suicide rate. I would bet everything I own that depressed patients don't have a 50% suicide rate.
It's NOT from being a weak minded person. It's from the horrible, miserable, realization that intense pain IS your life, and that's all you get til you die. Inmates have it better. I'll stop writing before I make a book out of this. I'm just so sick of all the ignorance and "you should do yoga", "you should just stop taking all those medications. MY gosh how could anyone feel inspired on that many pills?" "you should really go to this seminar about sleep. I KNOW you're sensitive about it, but Jae, I went for the weekend seminar.. and i was simply inspired to come home and share this with you. WIll you please think about going?"
If I go, it's all the same outcome. They pain will not stop and people will judge me that I'm not trying hard enough. People CANNOT understand what they haven't felt. PERIOD. THat is why we are Wickedly Isolated. Keep in touch ya'll. You are not pitiful. You are not a worry wart, you are not lazy, you are not crazy, you are not stubborn or pig-headed, you are not imagining this (unless you ARE.and YOU.. YOU there.. the one trying to act like you have it. Shame on you. Get out of here!) ;) You are all so beautiful. You all are so fabulous to take a step into today. And then again tomorrow. Every day you hold on, or move forward, you are not moving backward. If you move backward, just look toward whatever path you believe is do-able, even in the condition you are in. Do NOT over guess your range. You may ALWAYS make bigger goals later. Today, breath. Breath in. Then, Breath out. That is the base foundation of this syndrome. Breath. Maybe force a smile on your face whilest you are alone once a day-or more. It sends a hormone into your system that feels good. Like Pavlov's dogs. :) Hehe. Do what you can but do what YOU want. Wave your white flag if you need to. Wave a Pirates of the Caribean Flag if you want. ~ Me.
God's blessings to you as well V :)
God's blessings to you as well V :) n Both spellings of Jae/Jay is for me. :)
thank you for sharing your stories about this excruciating disease ❤
I have 25/7 burning pain for almost a year now on my trigeminal nerve. I think I have type 2 atypical trigeminal neuralgia but I am not getting a diagnosis and I’m tired of failing every drug imaginable. Nothing works. I’ve been to the emergency and regular doctors and all drugs have failed me. I want to cry and wish I could end this. I wish my doctors took me seriously
my mother also has that,she didnt drink anyhting for the pain whatever she tried didnt help also....but the only thing that helped her was wearing a headscarf and ALWAYS making sure that the face is covered with some nice scarf and kept warm even in summer even warm wind would hurt her.....be careful around aircondition and cold air in general and wind ....stay away from windy areas....only warm the facial area as much as you can....hope you will feel better,my mom is pain free for a decade but still is very careful staying away from wind and aircondition
@@SRBOMBONICA86 how is she dealing with it ..what treatment
Feels like getting burned with hot bacon grease combined with being painflly shocked with no way to rub relive or stop it. Torture 😵😵😵
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
Ive had TN for 3 years now. Mine was tumor induced and after removal of the golf ball size tumor which encapsulated the nerve. It has gotten progressively worse. I can no longer work, ive had to retire. I cant talk with my voice, its more of a whisper. I cant eat solid food and it has to be room temp. This affliction has taken everything from me. Even distorted my vision. I see a psychologist to help with the depression and pain anxiety, i cant imagine living the rest of my life in this pain. Wishing everyone a pain free day.
Greg Mcguire I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
So it means even with microvascualr decompression does not help
@Iball Slide MVD isnt an option. 4 yrs after this comment, i still have a ton of pain, and vision is getting worse. However, ive been learning to avoid triggers, take my meds on time, and learning how to relax. Ive turned to eating THC gummies to dull the pain. But there are consequences to that as well. No motivation to complete tasks amd chores.
Just in process of getting diagnosed. Thank you
I HAVE HAD IT 12 YEARS!!!! I AM CURRENTLY LAYING DOWN WITH ICE PACK AND MEDICATION! I AM CRYING RIGHT NOW! I ALMOST TOOK MY OWN LIFE A FEW YEARS BACK! IT IS THE MOST HORRIBLE PAIN I HAVE EVER EXPERIENCED IN MY LIFE! MUCH LOVE ❤️ TO THOSE WHO SUFFER!!!! JUST FYI MINE STARTED AFTER HAVING DENTAL WORK DONE! NOT SURE 🤔 IF THAT TRIGGERED IT OR NOT!
It's a possibility. The teeth and jaw are connected to trigemenal nerve. You're a brave person for dealing with this chronic condition. Never give up on your quest to find relief. Even consider medical marijuana. If it means improving your quality of life then all things should be up for consideration. Stay strong.
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
I suffered from occipital an trigeminal neuralgia an there are days i can't barely sleep or do anything. Thanks for sharing your story..
I have been recently diagnosed with this diseases, but I’ve been having this symptoms for about 2 years now. And it’s simply the most painful thing ever, you simply live wishing for a pain free day.
That has become a life goal, don’t even think about anything else because you know you can’t do it.
Seeing her manage to be functional with the disease gives me hope as I sit here in the dark and in pain. Trigeminal Neuralgia is a cruel disease.
Worse when you have any dental work, especially root canals and extraction. The pain after, stays with you for life. I have that now, constant pain every second. Never goes away... along with this I have fibromyalgia, and CRPS. Fun...
How are you doing?
I’m 29 and I’ve just been diagnosed with this!! It’s good to know there’s others out there
I'm so thankful after watching this .....I feel so bad
My heart goes out to all of you guys suffering and just recently started having my pain over the summer and I am only 34 years old I understand why the mayo clinic calls it the suicide disease I’m currently having an attack as I write this does anybody have any idea how to make the pain stop instantly and then how do you maintain it I’ve tried to go see a neurologist the dentist my TMJ specialist i’m just in so much pain and I work customer service and I cry all the time while I’m awake and all I wanna do is sleep and I have A child who depends on me please any help I would so greatly greatly appreciate any advice stay strong we have to find a cure we must also for auto immune disorders
How are you now?? And mvd did not help many people i have seen then what is the use of this invasive surgery risk and one of neurosurgeon told not to get it at the age of 50 as it has to be repeated many times and recurrence is there too in max 10-15 years but 30 percent of people got it recurrence in 2 years and then percentage increased year by 5 percent
Luke at the end ruined the moment
I've had atypical trigeminal neuralgia for eight years now. I was misdiagnosed and by the time they figured out why my face was hurting so much the meds didn't work for very long and I ended up having an MVD. The surgery took the pain away for nearly two years but now it's back and I'm terrified that the type 1 pain is going to come back because as bad as the type 2 pain is... the type 1 pain is my biggest fear. I feel like a burden on my family because I just started taking my meds again and everyone in my family hates when I'm on them because it's like being in a fog and when I'm not in pain it's like I sleep the meds off but the second the meds wear off I'm in pain again. I hate it. I wish this disease had a cure...
How are you now?? And why you went for mvd ??
You inspire me, I work with children and had a few really bad days last week and thought ahead 25 years to when I will be retirement aged (currently 42 with living nearly ten years of TN and TMJD already) and felt like I couldn't imagine lasting that long. I have bounced back up again but still the underlying knowledge that currently no cure is out there for both conditions and they are both considered progressive at this point in time (I try to leave hope for a cure in how I talk about it for my own sanity) has me dreading a time when I can't do what I love in my work. I do not personally know anyone else who has either or both so I get some solace in videos like this but then I feel like I shouldn't because I wouldn't wish it on my worst enemy.
I wonder if anyone else finds they have nerve pulses and pain in other parts of their bodies when their face is bad as I get the pain often in my hands and probably less unusual down my neck to shoulders and upper back?
Yeah, that happens for me too, and also i feel heat in my legs.
I get burning mouth and lips
Any update nikita
Only thing that works for my trigeminal neuralgia is tramadol 4 times a day. I have the worst type. Constant pain all day and night. Never goes away and it's on both sides of my face! You literally pray for death regularly
Complex Regional Pain Syndrome is the world's most painful disease. Period.
Thank you for sharing your story! Thank you for your motivation you are such an inspiration! I was diagnosed with trigeminal neuralgia at the age of 26, and like you I suffer from both type 1 and type 2 symptoms. I understand your concern and battle of not only fighting for your life, but for your career as well. I am a chef and unfortunately I had to give up my career for the time being. The thought of it being permanent breaks my heart because that's all I ever wanted to do. The lack of awareness on this disease is very sad. Thank you for spreading awareness. Thank you for having the courage to speak about your story!
Try gabapebtin
Type 2 is worst nothing works for it mvd make it worse ...and failed mvds number are more as compared to successful ones
I got diagnosed a few months ago at the age of 14 I first got hit with it when I was about 8 I’m VERY good at hiding severe pain thanks to having many painful conditions and because I don’t want to show my pain and bring down the mood I always hide my neuralgia attacks. so my dad and most my friends think I’m a faker which really sucks and makes me even more depressed. So I just want to say that you should believe people’s pain because you never know what there going through
I have both types of pain of tn bilateral as well Temporal mandibular joint disorder. I had it for years due hyper mobility spectrum disorder but have never known how to explain the pain as people my school told my pain wasn’t real or as bad as other peoples, so I didn’t seat anything
I've had MS-related trigeminal neuralgia for 20 years. Because the condition is related to my progressive form of multiple sclerosis, the surgery will not only not help...it could actually make it WORSE.
For a long time, nothing I took helped. I had no quality of life. I now take methadose twice daily, plus pain medication for breakthrough pain. It doesn't work for everyone, but it does for me. I hope it continues to do so; because of methadose, I haven't been in the ER for TN pain in 11 years. I still live with pain (my "normal" is a 5 on the 1-10 pain scale). Pain-free is not an option. That was probably the hardest lesson I have learned in my 20 years with TN. Not to mention the pain that comes from MS as well!
Angel Singer I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
GOD BLESS YOU SISTER
My fiancé has TN and he's only 20. He has it very bad, too. Sometimes he can't even speak or walk because of the pain.
Wow. What a strong woman.
I was in my 50’s when I experienced this the first time. The teeth on the right side of my face started hurting, then my sinuses, then my eye orbits. I felt like I’d been hit in the face with an axe. Then almost immediately a skull shattering migraine that drove me onto my knees and then into the foetal position. I thought I was having a stroke.
My doctor was out of town at an educational symposium (at Harvard Medical School) so every day that week I had an episode. Then a few days later two a day. When he returned I described my symptoms and he immediately diagnosed it as TN. The symposium he’d attended included a section on TN. He called it the suicide disease because half the people it was affecting were having useless surgeries then still having episodes and finally committing suicide because they couldn’t stand the pain.
He prescribed me Gabapentin, an anti seizure med and then later, Lyrica. The Gabapentin and Lyrica calmed the trigeminal nerve bundle in my temple. It’s been 10 years and I’ve never had another episode.
Long message, sorry. But I feel tremendous empathy for fellow sufferers and Gabapentin worked great for me.
Gabapentin’s been working really well for me too! Peace and Prayers to you my friend :)
Can you please tell me if you had mri brain with fiesta sequence that shows nerve compression
I also have both. Mine effects all three of the nerves, There are days that I just can't function. I've had it for three years so far and I understand the burning and stabbing pain.
I had TGN for 3 years, and was ready to quit- literally. Then I found Dr. Koptinik in Casper, WY, who performed MVD surgery on me. Seven years later, still totally free of pain. Saved my life.
flymasterA how was it? I’m thinking of having surgery done I need some relief
@@thedevilishpenguin have you got this surgery?? Any update would be helpful
I'm suffering from this 😪 right now. 🙏🏽🙏🏽🙏🏽
I recently was diagnosed with this disease. The medication I was prescibed is starting to help. I wouldn't wish this on anyone
am here for my Father💔
I'm a bit frightened right now. I'm 32 and a depressive. Three months ago I woke up with the most horrible pain I have ever had in my face radiating through my jaw. I ended up going to the dentist and doctor and nothing was wrong with my face or jaw or teeth. Around the clock aleve and tylenol did nothing to stop it. It eventually died down and went away in a little over a week. The pain was so extreme I couldn't do anything but groan when it would shock me and I'd lower my head. I've had infected teeth before including a bone infection from one and this is a couple notches up from that, this is the pain to the point that you can't speak. I had another episode the month after that and right now another one and man I hope it isn't something like this.
How are you now?? And did you have mri with ciss sequence that shows neurovascular compression
I have had it for 12 years. I have had to get on Social Security Disability because of it. I can't work a regular job because my pain intervenes all the time. I am at a 6 or 7 pain scale 24/7. My social life, family life, life with my two daughters, an work life are almost non existent because of the constant pain. No one has been able to help me cure it. I will continue to live a God fearing life because God makes the final decision about my life. I pray for myself and everyone dealing with this hellish disease.
How are you doing? I pray something has helped you
I have Trigeminal neuralgia for 3 years now i am 57. It has brought my life down.
Terry Wiernusz I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
thank you so much I've had this for the past 12 years and I'm 42. I feel less alone now.💖
Katie Hegwood I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
How are you now??
I have sleepless nights because of neuropathy in my feet. I come here for support to know I am not alone with pain. Even though it’s worse for you guys, I try not to get depressed that this is my life now. I pray that we will all endure and hope for days where the pain is not too bad and enjoy each new day that is gifted to us.
Damn...i have never heard of this before! God bless them😔
Well, it’s past 2020. Did they find the cure?
Kindly get in touch with Dr. Osaka on his CZcams channel for help and complete cure he helped me cure mine too with his natural herbal remedy..
Be healed
This is helpful and I am really in pain and it makes me very sad
Micro vascular decompression surgery worked for me I've been pain free for 5 years, no medication at all. Brain surgery was the only option I had type 2 for a solid year before my operation, hope you are well
Kelly how was it? Was it expensive been living with it two years I can’t eat can’t drink I feel like I’m slowly dying
I had the same surgery; it didn't cure it but it helped. Now seeing a chiropractor I feel so much better. Sometimes it takes a bunch of things to get to the right results... my insurance paid for it about $40k
Type 2????
It's pretty sad!
THIS DISEASE IS UNBEARABLE
I have something like this but it's on both sides of my head now. I'm almost always on the verge of going unconscious, but my brain doesn't want me to miss the extreme pain. The sound in my ears has changed from a loud ringing to more of a pure electric shocking pain 24/7. Only thing that will stop it, is death, but I don't want to die either.
12dollarsand78cents I used to have TN But got healed after I read an article about fasting and praying. Jesus says that Some situations need praying AND fasting. I tried a 3 day fast , No food only fluids, and I prayed. After 3 days I was healed! Please try this . God is here for you. God bless you in Jesus name
You need to DEMAND more reasearch into this topic all sufferers should and their loved ones need to try find help too.
I could really relate to the older gentleman. People don't understand why I talk the way I do when I'm having attacks. If I can talk at all, I have to speak slowly and deliberate, but it hurts so badly I can't think and it sounds like word-salad. It scares me when I see the expression on people's faces when I'm trying to talk and it sounds like mindless stammering. They act like I'm stupid or on drugs. I've thought about printing up cards to explain what's happening to me, but I'm not sure what to write.