I Suffer With Cluster Headaches
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- čas přidán 21. 10. 2019
- I want to bring awareness to a condition most people don’t know anything about. There’s no cure and I haven’t found any way to relieve the pain... so please excuse the crying face. Hopefully this can get into the right hands and maybe I can attract the attention of a doctor or clinic who specializes in cluster headaches.
- Zábava
Girl you don't have to explain anything ,, everyone who found this video is suffering and we are all in this together ❣️ we will be fine
I've never had one
actually she DOES have to explain the whole point is people dont know enough abut clusters not even the medical community knows enough so yes she does have to explain so more people understand what we cluster sufferers are going thru..
I'm not suffering but I cant sleep my head hearts and I'm now starting to tremble when in typing right tnow
I've never had one, but it terrifies me
@@JrellNY majority of the people here are suffering from the same and we could feel her pain in literal sense so we could even listen unspoken words
You are so brave. Thank you. I am in a cycle right now. I don’t feel alone because of your video and the comments. Bless your heart
The worst pain ever. My last for 3 to 4 hours. Nothing take the pain away. I don't want loud noise, light, talking. If feels like my left eye is being pushed out of my head. I wouldn't wish this on my worst enemy, if I had one. I feel your pain young lady.
I been getting clusters for 22 years. Mine come exactly 90 minutes after I fall asleep at night. I hate going to bed knowing I’m gonna wake up in excruciating pain. My heart goes out to you. I been kinda lucky because so far mine come about every 8 years usually when autumn comes around and last about a month. My heart goes out to anyone who suffers from these terrible headaches it’s definitely a life changer
happened to me last night. 4 in a row after i initially went 2 sleep even tho i took a ubrelvy pill. i feel like giving up
@@JrellNY I feel u brother 😥😓😫
I contemplate suicide when I have now
I'm on year 23. Hope u been doing well!
Hello My Dad Suffers From Cluster Headaches It Causes Alot Of Stress In Our Family And Its Horrible My Dad Is Constantly In Pain And Is Speaking To A Neuroligist And He Cant Get The Gamma Core Operation Done Because Of The Pandemic He Has Suffered From Cluster Headaches For About 40 Years Now Since He Was 15 And The Worst Thing Is Me And My Mum Cant Do Anything To Help He Just Has To Go Through The Pain
I’m in a season of cluster headaches as well, at least 2-3 times a day! My heart goes out you my dear, praying for you....hugs
How do you stop them when they start
czcams.com/video/9mQSO4Tzbwk/video.html
Give up alcohol and caffeine and your cured
@@knife_gun_axe9022 I wish it was that easy. I dont drink either
@@pobrez7649 I'm a 35 year old single parent. My party days are behind me. Out of desperation, I'm trying the mushrooms. I'm on schedule to have one tonight, so I'll see if it helps. Fingers crossed.
I have been having them too.... spring and fall. Hang in there. Nobody knows our pain
hey bro I had it also, it really means that there is something with your neck..i mean try to avoid mobile phone or pc or any thing that bend your neck for any reason. when sleeping use a pillow that fit your neck and head in the same line of your vertebra.
@@DavidDavid-gy7ps thats called a positional headache and or if stress headache. Cluster has no cause
@@user-jg3qh2cq7e its said there is no reason cuz no one know it, otherwise every pain has it's reason. And I am sure that mine was cluster. I am pharmacist and searched tens of hours for finding my problem.. And maybe everyone has it's own cause of cluste,just try to find out yours.
@@DavidDavid-gy7ps most logical reason at the moment is an extremely high temperature. This effects the hypothalamus which controls the body temperature and also triggers cluster headaches. I acquired my cluster headaches after sepsis at which I had a 40.5°C fever. There is some causes but not guaranteed. Position has little to no effect on your hypothalamus rather your spine and could cause SSF due to build up of fluid
Interesting. I have had them since early twenties. It would always kick off in spring and autumn or the occasional blustery dry wind day after changeable weather.
When I moved city, they stopped. More humid climate with less change of temperature/air pressure. Then when I moved to Tokyo, they came back. The seasonal changes are very similar to my home town.
Kept diaries for years trying to figure out what was triggering them .
This. This has been my life since I was 13 and I'm 40 now. I literally feel your pain. 💔
Watching this brings me to tears. I’m a woman in my early 30’s and I’ve been dealing with this since I was 17-18. Being afraid to go to sleep because you have to deal with this all over again the next day... I am 100% with you... it’s been waking me up like clock work and reaches its peak almost immediately. Prescription medication (imatrex/sumatriptan and indomethacin) doesn’t really help (even when it’s taken before an attack starts), let alone over the counter relief. I’m still going through my “migraine” episodes that started about 2-3 weeks ago, and it’s affecting my daily activities including my full time job. The pain is unbearable and feels like the left hemisphere of my brain/left eye is on fire while being stabbed with a hot knife.
I do wish that this DISABILITY was classified under a different name because calling this a “headache” is an insult. If there’s anyone out there that has any other suggestions for relief, please let me know
The shock of ice cubes near the eye sometimes helps.. sometimes hot water. It just takes a little bit off the edge.
Please try psylocybins.
@@rubentrteixeira For the most part, anything hot helps soothe the pain. I just wish that there was something out there to stop the pain all together
@@mabrouk5058 That has never crossed my mind but I will look more into psylocybins. Thank you!
Mine started around 22, i think? You lose track of time.... Life everthing.
Oxygen, get medical oxygen.
Mine stopped at 42, just went away.
Like the demon moved on to torment someone else. Wish I could say I wanted it to stay so someone else did not have to endure it. But I don't. Iam glad it's gone. Maybe I killed it after 20 yrs of battling it every spring and every fall for I don't know how long?????
I hope it died in all the pain it cause me at once. I still do not really fit in everybody elses world. It haunts me even though it is gone.....for now....forever I pray.
My biggest fear is my son may get them.
Dr Randy Snider in Denver Co, an accupuncture doc was my only "medical" help.
I still won't go to a western medicine doctor unless i positively have no other option. That system is a lie.
I would live in a cabin in mountains, or hide wherever i could for fear someone would see me like that.
I feel bad for the women that were in my life, they had to watch me in cluster and could do nothing. None could take it.
I pray that the demon leaves you soon. It does leave....for whatever reason. In presence, not in the back of my mind.
We are never really free from it, from fear it will come back, or maybe attack someone we love.
THANK YOU ALL FOR THE COMMENTS AND SUPPORT!!! i want you to know that i read every single comment, i just dont have the time to reply individually. Stay strong guys, I'm with you... and you can always find me on social media (@jackiehollywood) if you want to connect there as well!
Hi Jackie, thank you for sharing. I am in year 18 of this and currently in my worst stretch. In the middle of an attack right now watching your video. I appreciate you sharing...you are not alone
Wow this all literally just started happening to me like 2 weeks ago.. Thank you for making this!
Very good results with magic mushrooms.
@Benjamin Coussens thanks for sharing!
I have had similar experience as you! I was misdiagnosed when I was a kid as having histaminal migraine... But my symptoms are as you described...shrooms did the trick 2 years ago, but not anymore.
One thing that does help (IF I am able to catch it in time) is Bang energy drink... I guess the caffeine does something? I dunno, but hopefully I don't have a heart attack from drinking three a day... still worth the risk.
I'm crying with you. It's so sad that no one understands and it's great to hear your story is exactly like mine.
Cluster headaches are honestly one of my biggest fears 🥺👊🏻
I get them.
They're mine too. They completely run your life. Im terrified of getting them. Im scared of being at work and getting them, because Im in the trades and work away from home. People don't understand. Once they come on all you can think about is how badly you want them to end. Its crazy man.
Van Goghs Severed Ear god bless you
czcams.com/video/9mQSO4Tzbwk/video.html
Facts 🙄🙄
I literally told somebody this today and felt unheard ... mines come in 3s... 3 months of morning, noon and night pain ... I remember them like it was yesterday ... meditation early morning facing the rising sun, than at noon when the sun is at his peack and at night was very helpful ... I was prescribed muscle relaxers and sumatriptin nasle spray that helped I think, didn't want to risk not taking them. My uncle suffered from them as well so he recommended the meditation routine very helpful... we both workout alot not sure if that is related.
Bless your heart for making this video,,,you’re awfully brave
I’m so sorry to hear you have to deal with this pain 💕💗💕 silver lining I suppose is that you sharing has allowed me an others to have more empathy and understanding for people we know dealing with this.
Same here.
Waiting for the pain. That’s really scary. You are so brave. I hope they will find a cure. This is just hell on Earth. 😥
I never had one but the pain rank everyone is saying is edging me out.
You are really brave for sharing this. It helped me understand so much what a friend is going through. Thank you!
You nailed it. I’ve never heard it described like you put it. I will forever describe the pain this way. Hope you’re doing well!
I'm in this with you guys. Been suffering for more than 30 years. No one understands your pain. Try making plans to go out and 10 minutes before you ready to leave the headache starts, try explaining that to people. It sucks. I'm taking topomax and trepelin and it really helps. Thank god.
As someone with cluster as well for 5 years, I’m sending all the good vibes I can to you because I completely understand and you can’t forget about your life when the pain isn’t there no matter how little that time is. I also wanna warn you about corona bc for people with cluster or migraine conditions it makes the pain come and it doesn’t leave till your not sick anymore like at all. So be careful! I wish u the best!
Father God I come to u asking u to heal Jackie, myself,and everybody under these comments who suffer with this pain that deeper than any pain we've felt please keep us strong mentally and physically and please delivery us...In Jesus mighty name I pray....
Amen! Luv to u
all. I started dealing with CH in 2020...2023...and my 3rd attack just started May 25, 2024 and yes this makes a grown man cry too!💯👏🏾👏🏾👏🏾 Peace,Hope,&Luv.
You are a amazing woman to go through this torture. I can’t imagine the pain you go through. And you should be extremely proud of yourself . You could easily end it all but you don’t , you keep going and fighting through it . It’s people like you I admire. Keep going .
Many people recommended the magical mushroom stopping cluster headache .
Also i watched a video about using thermal radio frequency to stop the pain of cluster headache by treatment the nerve which cause this pain
I suffer from this as well, it's been 5 years now. Same experience as you. The pain is immense there is no better way to put it.
Thanks for sharing, you're not alone
CH warrior here. Since 2006...keep Fighting.
You are such a beautiful soul. I don’t relate to this condition, but you’re a strong person for sharing your experience. Stay strong ❤
Im so sorry Jackie. Sending positive healing vibes, hoping for a permanent solution 💙🖤💙🖤
thank you!
This has been my whole life. Painfree wishes to you.
Thank you Jackie for posting this. I suffered the same thing and I'm going through episodes now. I am at my wit's end. Everything you described is exactly what I go through also. Everytime I go to sleep I wake up with this ice pick excruciating cluster headache. I feel for you because I'm one who gets them when I sleep and it wakes me up. Hang in there and seeing your video has helped me because I felt so all alone.💓💞💓💖🤯🤯💓💓💓
Cluster head of 5 years here:
After almost a year my cycle is back and relentless.
It really makes me think how much I took for granted when I'm in remission from these debilitating clusters. My cycle seems to begin in the summer and this truly is the most painful thing I have ever suffered with. I would never wish this upon anyone. It also it so difficult being a CH because when you explain Cluster Headache, people automatically assume its just a headache and we are being over dramatic which can lead to such frustration and sadness. People who don't deal with these don't know how lucky they truly are. I'm praying these cycle ends soon because my goodness dealing with these 1-3 times a day is devastating.
Also that moment of relief after the cluster finally ends really makes you appreciate life when we don't have them - but also disheartening because you know they will eventually come back 😪.
I hate this illness, but whoever reading this - you aren't alone. I know we don't know each other but I love you all. Please stay strong. God have mercy on us, because we truly need relief from this. I also hope that the medical community starts discovering some breakthroughs for this because everything I've tried thus far does not work.
Take comfort in your strength.
You take the most unbearable pain and you’re strong enough to live with it.
Not only that but you’re taking your pain and sharing it with us.
Letting us know we’re not alone.
I know exactly how you feel, I was finishing your sentences while watching the video.
Don't know if anybody told you today but you are astoundingly brave. Stay strong girl!
Been suffering from clusters for 3 years at least once every single day so i feel yuor pain my dear.I know what works for one doesnt work for eveyone but when your in agony your willing to try anything so try this. Pour icey cold water on the eye that it occurs on several times a day this quet often stops it occuring and even if it does still happen it doesnt seem to be as intense and doesnt seem to last as long.I hope this gives you some relief.Let me know if this helps
czcams.com/video/9mQSO4Tzbwk/video.html
Some people may be relife with hot water and some one may be with ice and cold water.....but the hot water blood dose not clotes even the cold water
Thank you for this video. My wife sent it to me to understand what she is going through. PLEASE CONTINUE the Videos. I need them for Understanding and Inspiration. Thank you
I understand your pain I have cluster headaches too and you are not alone I'm with you and everyone who is suffering from cluster headaches we will fight this tolerance of this pain is beyond word to describe but we can do it pray for a cure before we go down the deep end remember your life is more than a headaches you have friends family who needs you if anyone of you have it at it limit I'm just here to help you I'm praying for all of us from suffering from this horrible headaches and migraines
Nine years a sufferer. Multiple attacks a day, every day. It's the worst pain I've ever experienced. You have my sympathy. I tried mushrooms and, like you, they also stopped working after a few months. Then I discovered a condition called Histamine Intolerance. I tried the recommended low histamine diet and the headaches started to subside. The intensity and duration immediately started to diminish and eventually the frequency dropped too. I've now been almost headache free for over six months. It's a tough diet to stick to but it seems to have worked for me. I urge you to look into it. A Google search will lead you in the right direction. Good luck.
mines last about 2hrs 😭😭😭😭😭, i was getting them once a week ,now I'm having them every other day, ,Love to all of the cluster headaches suffers ❤❤
Blood patches are working on all types of headaches. Look into "Leak Week" Any old injuries could trigger them etc. Please just do the research. Thanks
czcams.com/video/9mQSO4Tzbwk/video.html
I suffer from cluster headache as well. I felt every word you said. Omg I can’t even tell you that I’m so glad I can across your video. Thank you for being so brave to share your experience.
Ugh you're so brave Jackie. Its hard living with medical conditions that have no cures. I feel for you. Sending you my constant support💕💕
thank you so much
My husband is having one right now and I feel so helpless. I literally just have to watch him suffer 😟. It sucks having a partner with a chronic condition and there is just absolutely NOTHING you can do. Tears my heart apart.
My boyfriend has them and I also feel helpless. I’m trying everything in my power to help him. He only gets them during spring but we literally dread when it comes.
@@UrCupOfJo16 I feel for you guys. It's so debilitating and frustrating.
Same! My husband suffers from them, it’s so hard to know what to do. We have kids and it’s hard to know what we as a family need to do to help him. It really effects the whole family.
czcams.com/video/Jv1lG417LKg/video.html
Try homeopathy belladonna 30 sister it will help you take 5 drops of medicine in 1 spoon of water for thrice a day
Hey sister- you’re not alone. My heart broke for you when you described the bad acid trip that lasted 15hrs and didn’t even offer any relief, I hate hallucinogens too, I’ve never done shrooms or acid or anything so I can’t bring myself to even give those a try when I’m debilitated... I’m in a cluster period right now, had the worst attack of my life last weekend, a shadow when I woke up yesterday morning, and another cluster headache today from 2am-6am. This is so extremely frustrating and I beg God that this condition would just go away forever.
🙏 ❤
Your a brave woman. I too suffer from CH. 22 years now. I've often thought about doing a video like this, but feel ashamed for some reason. Thank you for sharing. Means a lot to me. Im sure you have support but if you ever want to talk to someone who knows your pain. Please message me. Stay strong.
Thank you for being so brave and putting this out there 😍❤️
I've been using a back massager on my head and ice packs and they do ease it
I can feel your pain. I am having it too at this moment. Mine happens every 9am in the morning EVERYDAY! It sucks because I can't do anything about it. Let's be strong!
I hope you’re doing better now❤️!
Hey, im sorry you're going through this as well. If you ever need to talk or vent Im a chronic sufferer and would love to have someone to talk to that fully understands what it's like. Have a good day and I hope you're doing okay.
Be strong 💪🏽. We’re all with you. This pain sucks so much. No one knows how we feel. It’s been over 20 years for me. Hugs 😘
thanks for having the courage to make and share this video it does help me a little and probably alot of people
it began on my 19 with one attack a week now after 7 years its up to 8 times a day with no down period sometimes its just hard to keep yourself going when you know whats comming again and again
This was so helpful I have just recently started experiencing pain penetrating from my right eye to the back of my end. I went to see a Neurologist on 3/24 and I told him about it and his response was well migraines usually occur on one side. So he diagnosed me with migraines. So I’m doing my own research and it’s seems like I may have cluster headaches. Thank you so much for posting your experience.
Sista I've been dealing with these headaches for 24 years. Worst pain I've ever felt in my life. Mine seem to be episodic that come on every couple years. I finally found a doctor, a couple years ago, that prescribed me the injectable sumatriptan. It was the first time I had ever had relief during a cycle.
It is the exact same for me. The ice pick. That’s how I always describe it. I feel insulted when people say “oh migraines” it’s my time right now. I had to leave work because I get it at 4am, and 3pm. It’s day 1 of ????
11AM and 6PM for me for a month
You absolutely nailed this topic! Everyone tells you to do this and that but they have no clue this is no normal headache !! Only US knows whats best! stay strong! your not alone!!!
Thank you so much for having the courage to post this. I recorded similar videos during my episode this year to try and cope, but I did them mid attack and it's just way too much to feel ok putting it out there. But it's so validating to hear your experience matching mine so closely.
I tried mushrooms for the first time this year mid cycle (about 2 weeks in) and did not get relief. I kept trying every few days, but the cycle just kept going. The fear that comes on when I felt like the only saving grace I had left wasn't going to work... it's just so crushing. It made me cry to hear you describe it so well. I've heard through clusterheads that it can be more effective as a preventative instead of an abortive, so I'm just hoping if I try it next year ahead of the cycle instead of during it will have a better chance of getting of making it help.
At this point only oxygen somewhat reliably aborts the attacks, but like you said it feels like no solution, it feels like the bare minimum. I still wake up in agony, and as a result I always know I'm in for weeks of sleep disruption and exhaustion when that time of year comes around.
Despite all that i do feel cautiously optimistic. I've been lucky enough to meet 2 people irl who have suffered from cluster, one of whom has had chronic cluster since they were 13. Both of them found a specific regimen of psychedelics which fully avoids their attacks almost every year. So I'm hopeful that it might just be a matter of the right drug, the right dose, the right timing. I hope it ends up being the same for you.
In case it's helpful to you or anyone else: one more option for psychedic treatment, and actually one of the safest and most legal options, is LSA derived from flower seeds. This is what saved my chronic cluster friend.
I hope you're doing well, and thanks again for sharing your experience.
I had 6 brain surgeries and have suffered of chronic headaches for 8 years but every time I see someone with cluster I know my pain is nothing compare to yours. It seems like a nightmare and I am SO sorry you have to suffer this much without relief :(
What was the cause
Seriously I get one or two a day. In the spring. I get them in the mornings as well. I cant fucking imagine being chronic. My heart goes out to all of you chronic sufferers because I wouldn't want to live if I had these daily. I dont even want to imagine it.
Hi, I totally get you, I’m in the process of being referred to a specialist. You’ve got the pain description down perfectly. I’m with you, I feel your pain along with everyone else that’s commented on your video, it’s very hard to deal with this every day I know 😢
I’m 11 years in
Respect to you for doing this video.
Sweetheart I'm so sorry you have to suffer with this like we do. I've been getting them on my right side since I was 20 and I'm 33 now and it's a very misunderstood condition. They make a huge impact on your work and relationships. I feel you when you say you hate them being called headaches, I can't count how many times I was having an attack and someone asked if I wanted an ibuprofen. The only person i know who has had them was my father. He's 60 now and hasnt had them for years so im hoping these things die down with age. I also tried mushrooms and lsd with the exact same result as you. They worked at first and then they didn't. You're not the only one desperate for help just know you're not alone here!
I was diagnosed with these about 2 years I’ve believe now or a little over. I’m frightened and scared of them hate it while I was working walking around holding my head all day crying. At times went to the back in an office/ break room pacing back and forth holding my head crying other times trying to sit down rocking back and forth and off an on trying to hold a cold water bottle on head. Co-workers an managers were concerned for a long while. At the time had 2 different mangers leaving to bring me into the er 1 of them twice. Another time weeks later different managers ended up calling the ambulance to come for me an haul off. Weeks to months later was put on my own oxygen with a decent amount of tanks about 5-6 an at first was reordering for refills for each week. Months later died down where I used left often an no more er room. ( primary/neurologist only) I had multiple a day sometimes 1-2 usually more as well of 1-2 days very rarely 3 days in between. Everyday for about a year or just a little over a year. Lost my job after a while then lost few other jobs as well I want to work but struggling to hold one an keep. Still as I write this, however it’s more manageable now an maintained some for past 4-6 months now at least. I do still get them but 1-2 not nearly as long usually an not nearly as intense. If not having one may go few days without but bright lights and blue light definitely triggers mine now wear different colored sunglasses indoors/outdoors. Been a blessing lately from going from that to this,I’m glad it did when it did cause my thoughts and everything else wasn’t in the right place I couldn’t keep going like that everyday multiple times a day for a year. So the 1-2 I may get now is still a relief but each time My thoughts is oh no is it starting again like before just as bad. Complete fear changed my life fast outta no where. However I do tend to think how things were then with it to now not fully better may never will be but better than it was. For me bad in the morning as soon as I wake up, again at noon, back an forth to late afternoons,early evening or late evening. Sometimes at each time frame other times it was one or the other different intensity and time duration. Never fully woke me from sleep that I remember but as soon as I wake up and the shadows before or after at times lasted all day would have that one side all numbness/tingly an sometimes nothing but a lot of pressure which was really painful as well
Im chronic. Every day for the past 8 years. I find eating zero carb makes things easier. It doesent go away, but its a more manageable pain. I have been able to find a job and am working full time :) also alot of distraction; find hobbies that you can get really invested into.
Damn! Been suffering for 6 months! Dr after Dr had no answers, they guessed sinuses, then wisdom tooth, I have been trying everything and 2 days ago found out about cluster headaches. I have it around my right eye too. Not to the pain level you are experiencing. Praying for you!
Your so strong to record and tell us all of this with your headaches but guess what I love u and so does all these ppl so stay a beautiful queen❤️ and don’t give up
Thankyou for sharing your experience. I do find it sad that people have to experience this pain. You are not alone. After 20 years of cluster headaches my first ever oxygen arrives tomorrow. I worry every day in case it returns. Yours and others shared experiences help. Thankyou. Jamie in Scotland.
Yo, *sending virtual hugs* for making this. I’ve been wanting to do a video just like this for years but couldn’t bring myself to it. I’m 31, and I’ve been a cluster head since as long as I can remember as a little child. People won’t ever know or fully understand how this “headache” is actually an excruciating painful game of chess. The more you fight it, the angrier it seems to get. You are not alone! If you can handle energy drinks, try a really cold can of Rockstar Energy Drink, chugged quickly the second you feel it coming. Something about the quick Taurine consumption mixed with the cooling effects of the liquid is a very affective abortive. Let’s talk sometime.
I just started getting them in late August when my sister was admitted into the hospital due to a stroke and got worse when she passed away in September 4 I'm still dealing with the headaches and its already November 14, sometimes I just wanna give up already cuz of the pain, so much stress this year losing 3 family members, working two jobs being used in a relationship and being led on in another relationship and then the stress plus high blood pressure triggered the cluster headaches I just wanna give up but I cant cuz me and my sister are the guardians to are older sister daughter I wish the headaches would go away......
don’t! you’re so strong and you came this far. times will get better i promise :) i believe in you!
I completely understand your pain. Im 25 years old and suffer cluster since I was 21.. Right know Im in a season of cluster. 1 time a year I get these pains just behind my right eye. Always in winter. I spend 2 to 3 months presenting these pains in the morning hours. I never knew what they were, until 2 weeks ago when I had them again and decided to investigate more. My heart goes out to you, no one can understand the kind of pain this generates. I consider myself to be a very pain tolerant person, and yet it is disabling and desperate. Everyone who found this video is suffering and we are all in this together.
I feel your pain. 20 years now. You got this girl!! Hang in there!
Hey! I'm a young female and iv been dealing with CH since i was 18. I normally get mine in May june and July the last 2 years i have been taking magnesium about a month prior to my cycle beginning and it has helped tremendously! The last cycle I only experienced maybe three or four bad ones. Unfortunately it is December and I am a week in another cycle. I'm super confused because I've never had them at this time of year I guess that's just how it is for me now. Since I wasn't prepared and haven't been taking the magnesium I am suffering so bad right now. Last night I didn't even get two hours of sleep because every time I would start to fall asleep one would come on and I'd have to get up and start walking around the house. I just want to say that you are not alone and you are so brave for making this video it has made me feel like I'm not alone in this. I have not been to the doctor yet because up until 2 years ago I didn't know anything about cluster headaches. I'm hoping to at least get some oxygen to try... The only thing that helps relieve the pain as its happening is my rice sock. I put it around my neck and either walk around the house or sit in a chair with my back as straight as I can be. But the heat helps best for me. Praying that you find some relief and idk how long ago you made this but if you have any new idea please let me know cause this has put my life on halt and I have 2 toddlers to take care of and its just hard you already know though.
CHSG on facebook, look into oxygen therapy as an abortive, please share, they saved my life
@@allenhall1216 I just finally busted my cycle since I made this comment. I used shrooms twice and the second time it worked! I haven't been able to get in with a Dr but as soon as I'm able to and get refered to a Neuro I'm asking for oxygen therapy. Thanks for your reply!
I have been dealing with cluster headaches since I was about 11 or 12 years old. Besides the pain that is best described as being tortured for 1-2 hours. The daily doom felt by the anxiety brought on by the anticipation of the attack during a cluster period is truly shattering. I have found that sumatriptan has been the only thing to help when it gets unbearable. I hope in the future there is a drug that helps as well as sumatriptan but doesn't have the side effects and effects on the cardiovascular system.
I hate to tell you this, but as great as Sumatriptan, as great as it is at first, will cause the attacks to become more intense and more frequent over time.
also i wanted to say that jackie youre a seriously brave girl for posting this, it was really insiring for everyone who suffers from pains, i don't know much about cluster heads which you hate this name an for a good reason but i know what is seriously chronic i'llness is and finding surpising pain each day that makes you just wanna die and having suicidal thoughs or ideas, anyhow i thank you for sharing this, it gave me alot of inspirition and feel like i'm not the only last asshole who is suffering in the world and want to through myself from some random rooftop
i thank you and i also saw youre latest videos you look amazing and having a reach social life and a charmind hollywood personallity i wish you all the best and happy you found youre place and peace in this world i wish you good luck prosperity and keep that happy smile and place you've created for yourself, i guess you had the right kind of help from the right people :) good luck!
Jackie, kudos to you to post this. I have been struggling with these since 20 years and they come back sometimes every years or every 2 or 3 years. Im in the middle of a cycle right now and it is insane. Completely debilitating. One treatment may work is a strong Predniso cure. It has helped me shorten the cycle before but this time I stopped after a week because Prednisone has all kinds of other side effects, major anxiety is one which we already suffer from, just worse. I'm taking Sumatriptan injections 6mg and they shorten the duration of the attack but still leave you with the blurred vision and exhausted feeling.
also, FDA approves maximum 12 injections/23 days which is not enough, i get at least 2 attacks/day. Insurance rape us, as always, even with insurance you are on the hook for about $75/injection or about $600 each with no insurance.
Zomig gives me too much anxiety and so does Caffergot but worth a try, just make sure sure to not mix triptans and caffergot because that can cause serotonin syndrome and can be deadly! Tried Lithium, also too many bad side effects.
It is estimated there are only 1million cluster sufferers which is not enough for our money driven Pharmaceutical companies to come up with a viable treatment.
Let's make Monday Jan 13 national Cluster headaches day! Anybody please to promote awareness?!
I was diagnosed with cluster headaches at age 22 am 33 now a cold can of red bull to drink a ice pack on the area where it is most painful and a fan to move the air around me has been the fastest way I’ve been able to manage them. They will never be gone but can be managed🤞
How do u manage them
@@greedyjoe9677 Hi there, according to some comments: 1) try a really cold can of Rockstar Energy Drink, chugged quickly the second you feel it coming. Something about the quick Taurine consumption mixed with the cooling effects of the liquid is a very affective abortive. 2) monster energy drink: Try drinking 1/2 a can to start with so you dont destroy your heart and kidneys. Taurine tablets didn't help me any so I'm not sure what the magic is.
Pls, give it a try and let me know it it works for you.
Hey your story really helped me. I have one now. Trying to cope is so hard.
Hi there, my heart goes out to you and thank you for posting this. My husband is new to the pain from having no headaches of any kind ever, to having what he describes as a headache that started last nov 2020 and just hasn’t stopped. He is in his 6th month of straight pain, he seems to be “the healthiest human” as per his tests and no medication or treatment works. He says the pain has never ceased, only fluctuates in intensity usually between a 6 and 10 on a scale of 1-10. He has also experienced brain fog in addition to the pain.
Sending you love and positive vibes. Praying for a cure or at least affective treatment 🙏🏽
Sheesh girl! We are in this together. I hope you find a way!!! I'm in my cycle now and just got off my attack a minute ago. You are so brave to record this! Good on you and the best of luck!
Lol when you said other people "say they have them". I feel the same way, like no you don't, nobody knows this pain. I'll pray for you tonight but stay strong and I'll try to do the same. 14 years for me every November or December but for some reason it pushed out to February this year and I falsely thought I had hit my first year without one. I'm on my fourth week now which is usally around when they stop so really hoping for that at the end of the week. My range is 2-5 attacks a day for up to a month typically 45 mins each, can't decide if 1- 2hr episode would be better than 2-5 of the 45 minute episodes would be better but hell there's no better option really just same sucky bullshit. Reach out anytime and never give up 💪
I had the same headaches as You , after 30 years and trying everything , I had 3 sessions of Acupuncture , now I haven't had a cluster headache , I have all the symptoms but No pain, might be worth a try!!!
daniel markiewicz what symptoms do you get without pain?
@@JackieHollywood Stufiness, metallic taste in mouth, Seeing spangles ( pulsating purple/white flashes in eyesight starting from the side that increase to a maximun then receding and diminishing ) .My headaches ended with the acupuncture about 25 years ago and never came back. I completely understand what You are going thru, only those who have clusters would know this. I heard that there are new treatments for clusters ,but you would have to really search for these . You are only the second person that I know that are going to this hell.
Its so sad to see others have this too. I feel your pain. Ive had that since i was 14 which is rare. You all will make it... It may be hard but you can still make it.
I cried with you watching the video. Just got over my 3rd attack of the day. I rarely get 1-2 months off between my cycles now and it seems to be getting worse. Tried MM in between a cycle and it gave me the worst attacks I have ever had.
Lots of love and pain free wishes to you.
I used to suffer from cluster headaches almost every day. Started in my early 20s. I would get them for weeks almost every day. and they would go away for about a few weeks and then come back. I would have to leave work early or call off work all the time. And they would think I was exaggerating.
I was desperate to try anything so I started doing the ketogenic diet and they’ve disappeared since.
Really?! Could you elaborate? How long has it been gone?
Gone days without sleeping my pain lasts 10mins minimum and almost 7hours maximum...to everyone that’s going thru this stay strong we in this together🤞
Thanks for posting this. I have them too. Started in 2019. This will be year 3 and I fear they’ll be back soon. Worst pain ever...I totally understand how we need to look for better methods to treat and manage (or even prevent!) them. I’m looking myself and nature does seem to provide the only things. Doctors have been helpless. I’m grateful for everyday with out this uncomprehendingly painful and debilitating condition. Stay strong!
This hits hard. It’s nice to be able to record and release footage during an episode (not an attack!) because it provides immense perspective. My episodes have been in either spring or fall so it’s high alert season for me
Heyy Jackie ! I know exactly how you feel , cause I've been suffering from it since 10 years now and I have a cycle now ,but in the last two years I've tried inhaling oxygen and it really really helps to lower the time of the headaches and the severity of the pain , so my question to you if you have tried it ? Just give it a try and I really hope it helps you out ! 😭❤️
I've been having them for 10yrs now & nothing helps me but hot showers with the water hitting my neck & head, wrapping a towel around my head & twisting it to apply pressure & using Zomig nasal spray.
Same with the hot shower remedy. I haven't tried the nasal spray. Is this OTC or prescription?
HOT showers
This is the realest shit I’ve ever seen. You’re so brave for doing this. I love you! Stay strong. This is not an easy thing to go through.. and I pray that a cure is found 💕💕💕💕💕💕💕💕!!!!!
thank you so much
Whoa! Someone that actually understands how it feels.
Incredibly accurate and emotional video.
I have had them over 8 years. Mine are seasonal and I was diagnosed by an MRI. I too have some health issues and survived a aortic dissection. Because of this I am so happy to be alive. These clusters I'd rather deal with it by natural oxygen or something besides LSD or mushrooms. The trips are not worth it. When the clusters happen remind yourself what you are grateful for. Talk to yourself about goals, ideas, and use these to realize if you can handle clusters you can handle anything!
No one understands the pain.
czcams.com/video/9mQSO4Tzbwk/video.html
I understand
I really don't. I had pain in my life, but surely nothing close to cluster headache. But I support you and I wish you the best.
honestly. and that makes it even worse
I never had a cluster headache but dear that sounds scary
I have a cluster headache for 8 years too 😭😭 Cheer up together🙋♂️
wow im so sorry... :(
Lol me too we is fighters 💪💪
Blood patches are working on all types of headaches. Look into "Leak Week" Any old injuries could trigger them etc. Please just do the research. Thanks
@@JackieHollywood czcams.com/video/9mQSO4Tzbwk/video.html
Thank you so much for posting this
Thank you so much for sharing this. I been suffering from this for about 20 years. No one understands
I feel your pain I get them to and it hurts like hell, i try to do things to help me take my mind off it but I had days where I wanted to take a gun and just blow my head off but I do things to help me to take my mind off it
I feel dissenting almost 5 years I don’t know what to do anymore I hope one day is going away
I just needed to hear this. Thanks for sharing.
Jackie, I'm Soo fucking sorry that you have to deal with this unbearable pain. Thank you for being so brave and sharing this... I wish I could help you... I'm so sorry, this hurts my heart... 😔❤️ If you ever need someone to vent to, I'm here!!
Do you have headaches everytime you go out? To school or work
I feel you im new suffering for this cluster headache i can't sleep 😭😭😭😭😭
I have had these headaches as long as I can remember. You are not alone.stay strong.
Jackie thank you I needed this today
Its such a shitty feeling every night when I know I'm going to go to bed and it's 90% chance i'm going to wake up within 1 hour with a attack
I hope this is helpful... I was wrongly diagnosed (due to my gender)... but finally after three neurologists.. two specialists in NYC... ive been dx and treated correctly. Look into 300mg of Emgality each month.. LIFE changing... its prophylactic and 3mg sumitriptan (zembrace) abortive... pills wont work, other injections, steroids, injections in my head, injections up my nose, vagal nerve stimulators, magnesium, topamax, verapamil.. girl I was getting them 10 times a day... I get maybe 3-4 a week. I have had chronic cluster headaches for the last 2 years now.. please look into this newly approved FDA medication
Thank you I’ll run it past my neoroligist
Thanks for sharing ur story. It makes me feel not crazy. Most ppl think I'm being dramatic. I hope u get better love. ❤
Holy shit. Thank you. I was just browsing cluster videos as I'm sure we've all done. If nothing goes astray, I'm due for a February/March hit. They last for 45 mins on the dot - not a minute sooner or longer - and usually about 3 a day for 2 months. Two of the 3 I wake up screaming. Watching you on this video, you know what I experience. It's so bad that at this moment, I'm crying and scared and I'm not even expecting them for another 5 months. I've wanted to do a video like yours to spread awareness because we need help, but you're a bit braver than me. I've never heard of your channel or name before, but I want to personally say that I hope you can find something other than misery and I pray that science stops ignoring us. Worst pain known to human = ignorance...that gets really f'in old really damn quick. I'm inspired by your effort here and I plan to do the same. I need to spread awareness to soothe others like you just did for me. God bless you and I wish I had the correct words to take your pain away. If you know of any new research or anywhere online or offline where I can start shouting from the rooftops about us I'm sitting here with open ears. We need help. Help. Please help.
Hey I've been suffering for around 20 years from the beast, I microdose on magic mushrooms and it's amazing I'm chronic and my headaches have completely gone, worth trying microdose of magic mushrooms.
fully agree only thing that helps and gives lasting relief!!
Maybe your shrooms are old and lost potency and you need new ones. Good luck
Exactly.
Don't give up hope , you are not alone ❤
It is normal to feel helpless, I suffer with the same condition and i totally understand. I hope you found a treatment that works for you. Don't give up!!!