@AzeraProductions as a CHer I completely agree with you. Whenever something good happens it's God's invisible hand, whenever something good doesn't happen, he works in mysterious ways.
It is a fact that he doesn't only give pain and setback that we can endure. It isn't called suicide headache for nothing.
To the poor man in the video : I feel for you as I feel for every fellow sufferer.
Dude i have been having these since i was 20 i'm now 33 and they just keep on coming.....I thought they were gone because i had not had one in two years well guess again they are back...fucking clusters......
I suffer agonising ibs pain and all I can do when the pain is at its worst is curl up in a ball. CH pain sounds even more horrendous and I think you're very brave doing this.
im a college student and i started having these attacks when i was 17. the pain has pushed me to the limits forcing me to stay inside and not even go to class half the time.
not even oxycodone can alleviate the pain, its just fucking horrible and i don't want to have it for the rest of my life
idk what i can do, i really dont. it has forced me to give up a lot of plans in life.
My husbby is a cluster headache sufferer, my heart goes out to ALL of you that go through this. He has only had 2, month long episodes in the last 10 yrs with aprox 5 attacks a day. Oxygen didn't help, he used Imatrex (sp) but you can only use it 2x (if I remember right) in a day. His episodes have been after the holidays, I kind of attribute it to all the crap we eat at the holidays. I have Lupus, I control it with strict diet. I wonder if diet related research has been done for clusters?
It's extremely distressing to see that there are people like you suffering from things like this. It truly is a horrifying universe we live in. I wish there was something that could cure you.
i started with these headaches in april 2009 and i honestly thought i was going to die. i spent 10 days in the hospital getting poked and prodded , and fed all kinds of drugs to ease the pain. i had a CT scan. an MRI and finally a Lumbar Puncture. before they finally diagnosed me. since then i have have gone thru periodic and chronic bouts. nine out of ten of my "episodes" are concentrated around my left eye. the pain feels so bad that i cannot focus on even the most basic of tasks..
I am an episodic CH sufferer of 12 years. I understand. Only another CH sufferer really does, i mean, you can try to explain it to someone, but their frame of reference is just incapable of imagining the pain level with one of these.
Have you tried the imitrex injections? They'll usually work in about 5 minutes. The gold standard. Of course you can only have up to 3 a day, but they've been the difference between me and death a couple of times.
Ive suffered from these since i was 16 yrs old im 37 now mine come every 2 yrs and last for 3 mths u cant describe the pain but can understand why people that suffer from them want to commit suicide,ive begged my husband b4 now to punch me hard to knock me out so i dont have to go through the pain ive gt 3 kids thats y im still here. im from the uk and cant find any1 here that are ch sufferers so i feel like im on my own with this beast it should be more public to let people know wat its like
My brother has had cluster headaches for 7 years without one day of relief. His attacks last all day, without any relief. they have tried morphine, lithium, imitrex, oxygen; anything you can think of. he has no relief. i can not imagine what you and what others go through. You are a survivor. I pray that you find relief. You are so strong. Please, never give up. My brother feels like giving up sometimes, but his daughters keep him here. You are not alone. Sending love from North Dakota.
Hi, I suffer from Cluster Headaches. They started when I was 14, now I'm 23. Three years ago I had a traffic accident, I was driving with my hand out of the window of my car. A van, that had crossed a red traffic light came from my right side and hit my car, the car flipped to its left, and because my hands were out of the window, it litterally got amputated. When I get a Cluster Headache, I litterally wish that my hands would get amputated again and again, instead of getting a cluster attack.
I have suffered with them for over 33 years and stayed in the game for my family=wife and 2 sons but they are way grown now and I will NOT go through another year with them. better to be dead
Hi, So glad you've put this vid up. I've had them for 5 years now, and am also chronic. Mine last 15-30 minutes, usually, and I get 1-4, sometimes 5 a day on average 3 times a week. I call them the Tsunami of the headache world. No offence, but anyone who says a headache or migraine is bad, is an amateur. And I get daily chronic headaches and migraines as well, so I know a little of what I'm talking about.
I've had these headaches since I was 19. (I'm 26) I feel your pain Tom. I've had them last for half hour. Some days I get them twice day. All of my right side. Feel like a caving pressure on my right temple. My right eye feel likes someone has repeatedly stabbed it.
Wow that is awful!!! I had heard of cluster headaches but didn't realize the intense pain. I feel for you and will pray for those suffering. God Bless!!
I'm 27 and I've had cluster headaches for about 10 years. What I recently found was that for me, they are triggered by altered sleep schedule (switching from 1st to 3rd shift at work), and stress. I was taking Imitrex for them until I decided that I didn't want to become dependent on medication and/or become a drug seeker, so I've just been massaging around my eye and temple whenever i feel one coming on. Works within about 5 minutes,if i do it when it first starts or when it's full blown.
Mine always happen behind my right eye...how about yours??? It's only behind my right eye... Plus does you ever last for for days maybe even a week??? Mine do!!!
i know what your going threw dude you took it like a hero dude i suffer from really bad migranic pain in one side of my head take medcation for it hang on there dude u really need too see a speicalist about your condition dude
OMG I understand headaches I have bad migraine headaches but I feel so bad for people who have cluster headaches... wish there was a time use of a pill that will take the headaches away...
Hi! I saw ur video ... And I think I know what ur going thru ... My husband suffers from that horrible (cluster headache) too...I try my best to make him feel better when he's going thru that pain... And it just breaks my heart when I use to see him like that... I say use too cause his doctor found the cure for him ... The name is( sumatriptan ) do a research ... And trust me that's the cure for your problem!
i feel so bad for you, i cant sleep at night knowing some people go through constant imense pain and i commend you for having the courage to help spread awareness of this problem
I get cluster headaches every 3 years or so. I know the pain you're talking about and I seriously doubt I could live with it as a chronic condition. My heart goes out to you.
For all u who say these are migraines...you guys have no idea. I know for a fact all the clusterheads have all thought about taking their lives at one point. I feel your pain and I'm praying that someone will one day come up with a cure for this.
oh my god.. I can't even imagine a life with cluster headache, and I wish all of you all the best and that it will get better soon.. I feel so sorry for you :(
Hey Tom, my name's Nick... I'm dealing with the exact same thing... If you could message me I'd like to talk. I'm only 21 and I'm really concerned with this
I've had these attacks since I was 16 years old. I was diagnosed years ago. Now being 42 it ain't getting better. Seeing you on the video it was almost like looking in the mirror. Once a year for 6 or so weeks...2 to 4 attacks each day...30 mins to 3 hrs attacks...people look at me funny when I tell them passing kidney stones in two separate occasions was a walk in the park compare to this pain...worse part is nothing really help, only wait for the pain to go away...
I really feel bad for my wife. She suffers with each attack I get because she is so helpless to help in any way and I don't want her even whispering to me or softly stroking my back or leg. I only wish I could take back the times I screamed at her when she was trying to soothe the pain when I was having an attack. I love her dearly and she doesn't deserve these damn things any more than me.
My father has been suffering from these for a very long time, I feel so bad for him when they happen because there's really nothing I can do. I have asked the Lord so many times to give me his pain because I have seen him suffer way too many times.
@pacoboi96 Your lord doesn't give a shit I'm afraid. Did this man have the benefit of a choice? I think not. To all of you who have literally perfect lives and believe in God, fuck off, the only people who need to believe in God for comfort are people like this hero.
@TheWoermi Some advice from a 22 year sufferer who also has a medical background. Learn as much as you possible can about CH. The knowledge won't lessen the pain, but will assist you in making decisions about your treatment. Do not be afraid to challenge your physician as most physicians get their education about CH from patients themselves. I have educated many docs out there.
you have the biggest balls in the world showing a video of yourself like this.... I kick anyone out, make anyone leave immediately and have so much fear that anyone I know might ever see me like that and never look at me that way again.
These headaches scare the crap out of me. I hope one day, all of this stops for you and never comes back. Knowing that such an illness as this exists is absolutely terrifying. I don't suffer from these but they still scare me immensely and have done so since I found out about them 6 weeks back. The fact I never knew about them before that just goes to prove that awareness needs to be raised. I hope this ends for you eventually.
I've been having Cluster Headaches since 2003 off and on every couple of years lasting about 6 weeks at a time and didn't know what it was or that it even had a name; This is the worst thing I've ever encountered in my life; But to see a Chronic Cluster Head Patient is totally dreadful; My heart goes out to you sir, I can't see how you survive! i was just diagnosed on 3/24/11 WOW what an eye-opener!
Please email this piece of SH*T and tell him how you feel about his comment....rather than delete it....I wanted the world to see a scum bag like this piece of crap. You should be ashamed of yourself.....send this low life lots of mail!
My god......It's hurting me to see you this way....I totally know what your going through....the only thing that deviates is that Im having then once every two years......so Im blessed (in comparison to you) I wish you the best my friend.
@iamzafkiel what do you mean by he's a hero for enduring pain? i don't understand, do you mean he's a hero for not killing himself from this intense pain?
I watched the video and burst out in tears. I also suffer from clusterheadaches, i recognize the terrible agony that you're going through. I pray that God might take away your pain man!
Dear Tom, Out of respect for a comment you posted on a video I created, I have removed that video.. I wish I had the space here to explain its original intention. I will however end with wishing you P.F.W.F.L xx
Mine isn't chronic, but it's pretty freakin' bad. I was diagnosed with this last night in the ER. Going to see a neurologist. They've prescribed medicine for it, which makes it bearable. I could go 3 days feeling fine, then that bastard is back again. I'm 18 years old, and I've never experienced this before until 5 weeks ago. I wouldn't wish this on my worst enemy. I feel for you, man. Hopefully, you'll find peace.
I think I got my first one when I was 25 or so? I'm 36 now and I absolutely dread when I have them. It's always near my left temple and my left eye feels like it's about to explode! The pain is so damn intense, I don't feel like moving or even breathing. They have lasted from anywhere from 30 minutes to 2 hours. When people say they have a common headache, all I can do is laugh and tell them they have no idea what true headache pain is like.
@mcivwah --- Hi there, I have some good news (sort of) mine started intensly about the same age, but as I turned 40 they started to not happen as often, I went from 3 times per year for a duration of a month of hell to not even getting one last year. I have read that as some people get older they get less of the cluster type head aches.. So there's some silver lining in getting older..
@mcivwah try having fibromyalgia and cluster migrains. wellcome to my hell. I feel like a vampire. no bright light pls.LOLOLOL since I have had kids, I havent had anything but pain and illness. I wish I could just retire from work and stay home to deal with this but, I have another 18 year. I hope I win the lottery this is no way to live.
just read some of the below discussions regarding the use of illegal drugs that could help in fighting ch. i have done it myself, taking trips (lsd) just to see what it could happen and the results were great. no attacks for couple of days during the cluster period. and if one's got a ethical problem coz trips are illegal, there's a lsa (or lsd) developed by a chemist that does not get you high and is perfectly legal, sold only thru prescription so it could be something to consider. cheers
Do not despair, there is now a solution that is very likely to be soon available across Canada. My Neurologist'll present the results of his research at Calgary in February. I can give you the results for me after 30 years of hell I have no attack for almost two months and without any medication. This surgery is not directed only at chronic.
@charreal666 wow you got all us ch sufferers jumping up and down! is there really a way to this stop once and for all? looking fwd for further info about this breakthru surgery care to share little more details? cheers.
You cope with your pain so much better than I do. I slam my head off the floor or wall. I beat it with anything nearby -- a remote, phone, book... I recently found out what I've been going through the last 8 years are CH. I never knew. I thought I was crazy. Now I pray to God my little boy won't wake up and see me going through this. It would give him nightmares my life has become.
Yep, that was just like me this morning. Luckily I always have my painkillers close at hand...Tramadol Hydrochloride upto 10x50Mg tablets WILL stop the pain within 15 to 30 minutes....which is great as my cluster-suicide headaches used to last upto 8 yes 8 hours of pure perpetual devil white lightning agony.
Everyone in the world shoud just experience this for 15 minutes only in their lifetime to realise what pure agony feels like. Mine are worse than a broken bone or the worst ever toothache
Funny, true...but other night I had a brutal one....and I do have a sprained left ankle and a broken right hand right now with an ongoing toothache last 3 weeks and a bruised right heel. And yeah your right.....not even the same page,
Very sorry to hear about your brutal attack, my sympathies are truly with you. Sorry to hear of your other pains too. Funny enough I had toothache 4 weeks ago and needed an extraction....this did not help my CH, as you may know the Trigeminal nerve (this is the culprit of the CH pain) is all connected.
if I may edit my last post too...Tramadol will NEARLY always stop the pain if I overdose on them up to 1000Mg
I saw your vid and it makes me feel very sad. My dad suffered from cluster headache too and it belongs to one of my first rememberings to see him sitting on a chair having those attacks. After having many episodes when he was around your age the time between became longer and longer. Today he is 70 and is headache-free for about 25 years. I am sure you know better about this typical progression than me, but it may may give you hope anyway. Stay strong!
Thanks for putting this up. I used to get migraines; these days I get cluster headaches thro' Jan-March, every few days. I just pace and pace with one eyelid drooping and a slowly rotating spike of pain in my eye for forty minutes.
Alcohol is bad, but low light is also definitely a factor for me (the Wikipedia pages on them suggest the same.) Maybe a light box might help some.
Mine aren't as bad as yours. But next time you suffer, although you might feel alone, you're not alone. Thanks again.
I suffer from Migraines. I get them all the time and it just sucks plain as day. I was reading up on my Migraines (Which I go to the hospital all the time for) and came across these things called Cluster headaches. Apparently they make migraines look like nothing. Talking from experience on Migraine pain all I can say is your a strong guy to go through these cluster headaches. I would have resorted to LSD in a second. Good Luck to you I hope you find some kind of treatment.
hey thanks for the upload, me to been haveing sevre headachs, doctor keeps giveing me fuckin antidipresents which do nothing, there all left temple and i feel as if im loseing my inteligence and have slured speech and confusion, worst of all i want to die to rid myself of the pain, when i get the bad attacks i lose half the strenth in my left arm, had a scan, came back clear, sometimes i pray for death, its a curse
CHSurvivor, I am certain you have tried prednisone/solone etc.. but just in case you haven't... give it a try, its a corticosteroid that gets rid of the headaches while you take it. You can only take it for days at a time (in rare cases up to a month or so), it does bring down your immune system, so stay away from sickies. Try it, or let me know if you have before. I am like you, Chronic, and nothing works 100 percent, 12 years now... WOW 12 years! just realized that. Give yourself a break!
Hi, I'm truly sad to see you suffer like that. I'm 31 & live in BC. I've always had migraine since I was 5. About 15 years ago, I got my first CH attack & ever since, I get it every year, 2-3 attacks a day & it lasts for about 2 months. Last year, I started Oxygen therapy & it helped me a lot. If you can, rent & use it for a month or 2. Here are some drugs that might help you relieve the pain. Triptans (Eletriptan, Rizatriptan,Zolmitriptan....), Propanol, Codeine, Verapamil, Sansert.
Thanks. I have tried all. Unfortunately none of them work. as per my previous posts. chances of finding abortives for chronic sufferers are alot more slim than eposodic sufferers. But thank you for the kind words and may you get rest frm the beast within
Hi, just lived through an intense 6 weeks cluster (my active periods occure only 1 - 2X a year, with an attack every night during an active period). this time, i started to suspect a connection between histamine-rich food (i'm not exactly eating healthy) and the intensity of my headaches. went on a radical rice & apple diet (lost 10 pounds in the last 2 weeks...). headaches went away litterally immediately. could be coincidence, but easy to try... hope you find a relief
I feel better now knowing I am not alone. I am 28 and live in Saskatchewan...I just started getting these cluster headaches two years ago and they r back full force this year again ...for over a week...every night. They were waking me up at 4 am (usually 2 hours after bed) and sometimes Id vomit because the pain was so intense. Im scared to make any kind of plans or commitment in the evening because they come on between 5pm-4am Somebody shoot me
Thanks for sharing. I can now share our pain with those I work with in hopes that they'll understand what we go through. Hope your cycles have taken a break. Mine just started again :-( Another poster advised that we need to be happy when we're not dancing with the Demon. I agree. Can't wait to be happy again!
dude the fact that you were able to talk is........amazing.i get these as well and i just want to rock back and forward and tap my feet or something i just cant stay still and talking is the last thing i want to do. i went just over 5 years without having them and then they came back last september. im lucky tho, i have never had more then 2 in 1 day. hope you are doing well
How much more painful are cluster headaches than migraines? I have chronic migraines which I can't stand but seeing someone in THIS much pain puts things in perspective for me.
Also, do you understand the neurobiology of your own condition very well?
Wish you all the best mate, there IS a cure for these things, we just need to find it!
their is absolutely zero difference in pain and paint tolerance. Migraines are over the head. Silence and darkness helps when dealing with a migraine. Cluster headaches are behind my right eye. starts at trigeminal nerve in my right upper gums. Paint moves up to my eye and pending severeity will travel to my right ear drum. Migraines are unilateral where clusters are exact same spot everytime. I suffer from both and tension headaches too. Pain is 1000x more severe, cant compare
Thank you to my son who is my inspiration for being alive. Thanks to my fiance for being the most supprtive loving woman on the planet. Thanks to my folks for understanding and having the compassion to know its not my fault and I do the best I can. Thanks to all the other CH sufferers out their that battle this horrible disease. Thanks the the spouses and families and friends who see us go through this and support us by being there without being judgemental.
Seek a stress/drama free life. Smile when you are not having an attack. Breath the air that god gave you and love the ones that love you uncontionally. Thanks for listening. I wrote this after having a 2 hour Kip 10 attack and happy I am alive.
They love i feel gets me though these things. (ligh at end of tunnel). Being alone having an attack for me is the absolute worst. Scares frig outta me.I dispise being without them when having one. Yet I avoid the public when having one. I seek releif by their love. Its unconditional and peacefull. It helps me far more any drug
Some days are much harder than others. On average I sleep 3 hours a day and now used to it. I will never do any illegal drugs regardless of my health. My morals are far greater than the pain i endure. Iam blessed to have a woman whom loves me uncontionally. A son that knows i wont die over this. Their personal unconditional love and touch by their hand on my back when having a brutal attack is peacefull and offers relief mentally.
I been using ALEVE in gel caspsules and they help for small to mild attacks. Maybe in last year have used Imitrex injections 4x but avoid due to bad side effects. O2 does NOT work for me. I was a guinea pig with neurologist for few years and got zero releif or help. Just bad side effects. I just tough them out so to speak
Update: Its been over 5 years now having these. I have lost friends, a job and lots more over these Clusterheadaches. I found out that certain foods trigger them
(peanuts, although I am not alergic, popcorn,red meats, food with red dye in them,chocolate, alcohol(dont matter I dont drink anyway),spicey and greasy foods).
this is a horrible disease ... i found out about it today and havn't been able to stop reading about it. that a sickness such as this excists kills me. and i admire those who manage to survive this disease as i think i would not have been able to do so myself. i really hope they find a cure against this vicious disease so people that suffers like you can be helped.
my name it tim. my father suffered from these CH for most of his 20 and early 30. he is now 74 and they have returned. 2 to 3 a day. lasting from 5 to 30 mins. sharp stabing pain only in the left eye. each day about the same time. you can almost set your clock by it. he watched you video and can relate to the pain you feel. it is awful what yall go through. i used your video and a dr video on youtube to find out what he had. we are seeking help from a nero. dr. any suggestions ????
I feel for you! My cohabitant also have cluster headache. He's chronic, and i can't really imagine how much it hurts. Good luck , and let's hope someone can find a cure! :)
wow it's so hard watching this, and not being able to help :( I sure hope someone medical will find out what causes them, and a cure for everyone who has them. Best wishes from me
Mayo clinic put me on mega-doses of prednisone with no taper about 4 years ago. It causes swelling of the feet, ankles, lower legs, face and overall 30 pounds of weight gain in 2 weeks. This protocol breaks a cycle every time in about a wek or two.
Bottom line, the side effects (shor term and long term) are terrible and detrimental. Let me see........horrific pain every day of my life or pain-free with extremely bad side effects. I choose the latter. Good luck to you.
I feel bad for you, And i hope you have some medication now, for your attack's.
I'm a 32 young woman, and since 3 year's chronic myself. Use oxygen and in a worst case Imigran, also have prednidson, i find it the worst pain known to mankind, and this is for all you survivors out there: Bless you, keep on fighting, i know it's hard but we have to... i hope that people get to understand cluster headache..Tom thanks for you vid!
@jinwenyou I know exactly what you mean about beeing frightened to sleep. This happens to me every 2 years...last time was oct/2009. That's when I discovered what my problem was after 20 years suffering. Hope you get well soon dude. No more pain!!!
iam so sorry youjr goin thru this, we've me and hubby have been dealing with them for 10 years now...we found a doctor named david kudrow in santa monica calif that has helped us tramendously..i hope you can find some help for yourself!! god bless..and oxygen at 15 on the regulator works for him..and u need the mask with the bag on it...take care leslie in california
no they are completely seperate.I suffer from Migraines, Tension headaches and Clusters...they are all 100% different. ONLY once I ever had a migraine and a cluster headache at the same time....Thank god its only ever been once. I used to suffer from 5-7 migraines a week prior to getting clusters. Now I only get 5-10 Migraines a year. Neurologists told me that it is common for migraines to subside when you get clusters....gee thanks, LOL.
i am 27 year old female and i've been having cluster headaches ever since the age of 20. one day it just came out of nowhere. my neurologist has me on a prescription to reduce the occurence of the headaches. it helps for the most part...sometimes i still may have a headahces but the pain is less intense when im on medication
This is horrible. I can't do much, but just so you, there are people on the other side of the globe who's hearts are with you. I wish you the best of luck in life man.
My prayers go out to you. I've suffered from episodic cluster headaches for 15 years. I can't even imagine how painful it must be for chronic sufferers. You're a stronger man than I am.
Have you ever tried the prednisone/verapamil route?
I really hope you never get the headaches again :) I'm a sufferer too but mine dont last so long they last about a minute 3 times a day for 2 weeks. And my cycles come every 2 years. I hope someone finds a cure fast! :)
thx for your contribution, that's going to be useful for md students who know epidemiology, pathophysiology, symptoms and signs of this so called "benign" disease, but then know nothing of what it really is if they don't see the suffering. thank you.
thx for your contribution, that's going to be useful for md students who know epidemiology, pathophysiology, symptoms and signs of this so called "benign" disease, but then know nothing of what it really is if they don't see the suffering. thank you.
I had my CH last Dec, 09..it'll come back again i 2 years. I live in new york and work at new jersey last dec. while driving in the holland tunnel I had my attack I have to top at the gas station and their rest for 4 hrs of agony, imagine the noise of cars honking and light from the sun. its a total of a HELL experience. 3-4 hrs of CH for 10 days. just want to share my experience.
sorry for you man, I have this cluster headache also, every 2 years..pain can last 3 -4 sometimes 5 hrs. my jaw lock my hands get numb and blood pressure goes high because of the sickening head pain..
02 wont work if you do not use it properly (I know for fact), It must be at 25 LPM with a NON-Rebreather mask. That is the way to use it, if it dont work then.....try Zomig, it dont have the rebounds like Imitrex.
Started getting headaches on the right side of my head. Then it got so bad that it woke me up in my sleep and throwing up from the headaches. So painfully I broke down crying and it killed me that I started hitting myself. The pain feels like a nail is being pound into my head with a sharp pain in my eye, my hearing goes and the right side of my head feels as if it well blows open. Very glad that I only have the headaches for 2 months, 3 to 5 time a day. Really do feel for you man, stay strong.
started getting bad headaches on the rightside of my head. it got bad that it woke me up in my sleep and started throwing up from the headaches. so painfully that i broke down crying that i started hitting myself. this really blows. the pain feels like a nail is being pound into my head, my hearing goes and the right side of my head feels as if it well blow open. very glad that i only have the headaches for 2 months, 3 to 5 times a day. when IT happens. really do feel for you man, stay strong.
just imagine a young baby Screeming his head off , and all people around saying " shut up you littel so and so" , while it is not his falut,only because that babay has Cluster Headaches and he does know how to ask for help . as you blocked what could be the only hope for him maybe for the next 200 years comming.
you and I old and we can not take it , what about him !!??
Suffering for about 10 years here and just coming into my annual cycle. Luckily I get relief with o2 and my handy dandy roid-pak (which I seem to be tolerating well this year.) Hang in there and thanks for the vid.
I am in cycle now. Can not imagine being chronic. I was crying watching this because I know exactly the pain you are feeling in this video. Also I noticed the palsy is extreme. Does your eye droop when you aren't having a cluster? My right eye is noticably smaller than my left now after 12 years of cycles. What treatments have you tried?
i was a guinea pig for 2.5 yrs with neurologists...pumpin my body full of crap....I dont take anything but ALEVE in gell for mild attacks...the brutal ones...I suck it up and try to live through it
I have suffered from cluster headaches for 14 years. I use Imitrex injections at on set and it normally takes the pain away within 5 minutes. your only suppose to take 2 shots in a 24 hr period. I have taken well over 2 shots because I cant stand the pain and I know by taking a simple shot, the pain will be gone!
the last 2 cluster cycles I have had, I have received a "never block" . its wonderful!! worked very well for me! I recommend to anyone with cluster headaches!!
Wow, I never realized how much I took for granted till I got the opportunity to research on cluster headaches. Hats off to you, man; if I had to regularly deal with pain equal to childbirth for hours I would be fully suicidal. Btw what remedies are out there, and any organizations that educate people on this?
Thank you for posting what your attacks are like. The more we clusterheads' show the world what cluster headaches are like, the better the hope of finding a cure. Not to mention for showing other that clusters are not "just a headache" . Wishing you pain free days. Paul
Im a sufferer for 11 years now, and im chronic too. Everyday i have 1 attack, around 2 hours after i wake up. Thanks for sharing this. Maybe some people start to pay more attention to us. Here in Brazil we dont have too much medication for that, except sumatriptane, and its too expensive and rare to find. Stay strong, my friend.
for gods sake get the imigram injections, dont know what they are called over in the US or Canada, but they do work. Thinking of you mate, fellow CH sufferer
I really really hope that there will be a cure for this someday soon so that good people like you don't have to suffer. I wish you all the best my friend..
I feel really sorry for you. I hope someone finds a cure. I read an article today about oxygen therapy. Not sure if this has helped you or not. Have you tried hypnosis perhaps? Is there any way of diverting focus somehow? I imagine that would be very difficult under the circumstances. I sincerely hope researchers find a cure.
Does anybody else have phobias related to this? Thanks for this video. I can totaly relate to this! I rather be kicked in the groin.We need understanding from friends,family,and work.
Thank you for sharing this. My son started having CH when he was 16 years old, he's now 24. When it's to the point I'm worried he'll kill himself because of the pain I take him to the emergency room for morphine injections. Works slightly for about an hour. More people need to see your video so they will quit comparing CH to migraines . My son's CH get so bad he will quit breathing, beats his head, begs for death, goes into a seizure like state etc. My thoughts and prayers are with you.
I know what you go through I have had them since I was 21 years old. I'm now 59 I finally found a Doctor who knows what he's doing haven't had any since March 12 of 2005. He put me on Verapamil 180mg twice a day and I have Imetrix inhaler in case I should get one. So far so good haven't had any in all most 5 years now.
In the UK they still won't prescribe us with oxygen for them. Several years ago when I was going through an episode and in that state where you'll experiment with anything to help, I found for some reason doing sets of push-ups until I can't do them anymore when I feel the onset very often aborts them. Don't know why or if it'll work for anyone else. Maybe it's the heavy breathing or something to do with blood flow? If this just helps one other person though then I'm glad. Good luck to you all.
ive started doing research on headaches to try and alleviate my own( they are mere tension/ migraine headaches. id heard the name cluster thrown around but never seen how bad they really are!! i know you dont want pity but i feel so sorry for you guys, i thought i was misunderstood! i just about cry when i watch these vids!
Don't cry we all !!! we better die because World Health Honest Proffessors do not care that 6 million patients cluster headache can be in a minute cluster headaches free; they think of being rich getting freely the scientific treatment from one of us who became the only patient now clusterheadachesfree without their oxygen, drugs or medicine. They will spend more hundreds of years of research while the result in hand of clusterheadachesfree man. We better die no way to cry. They are earless.AAH
hey i have cluster headache myself for about 2 years now going since 4 mohnts pain free my shortest attack was 20 min my longest one 6 hours wen id comes i stay in the dark id kinda help me i dont know why an i wish u good luck
Hi Tom, I do feel so sorry for you. I know how you feel. I have been having them for over 25 years now and I am 41. When we have them we all seem to react the same way. I thinnk it is a very good thing that you posted this video for people to see and see the similarity with other people who suffer from them. But I don't thing that people who don't have them will be able to understand the terror that we go through but can only have an idear how worse it is. Many Regards, Tom (my name too)
I get them every 2 years for about 3weeks everyday sometimes 3 times a day I'm getting them now I still haven't found any meds that helps at all and I do feel u man belive me
Just finished a 3 month cycle, 1 week without headaches. I use acupuncture, i find it helps shorten the cycle and cuts the intensity. But goddamn these headaches suck. Good luck!
having the most loving fiance, son and family helps me through these with the touch of uncnsitional love helps me....without them...? probably 6ft under
Hi all, I have been to hell and back with this evil cluster headache pain, I have had it for 5 years now but would you believe I was origionally trested for lymphoma??? and infact it was cluster headaches all in all took 5 years before I was finally diagnosed yesterday, Im now just waiting for my neuro surgeon to come up with something to stop the PAIN as I get 4 a night each 1 gets worse to make it worse I lost my job 3 weeks ago as I was so drained, we all need 2 hang on in there. xxx
hey tom, i have a question for you. I recently figured out that these cluster headaches exist and i'm scared to death of them now! my dad told me that he used to experience them but he hasn't for atleast 10 years. I'm wondering if cluster migraines are genetic? If you know this please let me know
Like I've said before on a few other videos, ever try a heating pad? Something about the heat makes mine go away in less than 20 minutes. It hits me as odd that you'd also be so worried about morals and laws when you're in pain. Companies and lawmakers don't care about us--that's obvious as you're still suffering.
Thank you for the couragous video. I'm a felloe sufferer too. I'm using Varipramil 240 plus everyday to keep theattacks to managable. I'm schedualed for a 2.26 am attack. I will be thinking of you and hoping itpasses fat for you and me. I'm in eastern Ontario. CHBrother
im a sufferer for 19 yrs, my main relief in these times of grief have been cold running water right over the temple. i also freeze water bottles with water and put them against my temple in a CH attack. for some reason, the icy burn i get from the cold water sometimes lessens or even fully relieves the pain for me.
I'm sorry for you. I know what you are going through (CH 15 years in periodes of 6 weeks). I use oxygen (works to me) and: water therapy. Drink a pnt water each half hour during my periode. makes the atacks shorter and less painfull. Try it. Can do no harm.
does not compare with the indocin i sold all my rifles because of the fear i would had i not done so i would have without a doubt im so glad i found a real doctor who understood my condition
Imitrex I have but causes 10x of rebounds and side effects are bad. Oxygen dont work. No into shrooms. Its illegal and against my morals. But whatever works for someone else I wont condem them for it. Thx for the msg, Peace
Have you tried marijuana? The effects aren't nearly as intense as LSD or mushrooms. I understand if it's against your morals as well, but I figure morality becomes subjective in a situation like this. Keep going man. I admire your strength. I think you've inadvertently set an example for your son, too, of the strength of the human spirit.
@AzeraProductions as a CHer I completely agree with you. Whenever something good happens it's God's invisible hand, whenever something good doesn't happen, he works in mysterious ways.
It is a fact that he doesn't only give pain and setback that we can endure. It isn't called suicide headache for nothing.
To the poor man in the video : I feel for you as I feel for every fellow sufferer.
kvadratbitter 2 weeks ago in playlist Fler videoklipp från ClusterHeadSurvivor
I get these too .. they are horrible I use sumatriptan injections to help .
BoxerBoycie 2 weeks ago
OMG THATS HORRIBLE HORRIBLE PAIN!!! I hope a cure is found soon
mari5love 4 weeks ago
Dude i have been having these since i was 20 i'm now 33 and they just keep on coming.....I thought they were gone because i had not had one in two years well guess again they are back...fucking clusters......
acpposey1 1 month ago
I get Cluster Headache every night. I put muscle rub on my head burns like hell but it helps with the pain. God Bless
charger7745 1 month ago
I suffer agonising ibs pain and all I can do when the pain is at its worst is curl up in a ball. CH pain sounds even more horrendous and I think you're very brave doing this.
WeTheStrange 1 month ago
im a college student and i started having these attacks when i was 17. the pain has pushed me to the limits forcing me to stay inside and not even go to class half the time.
not even oxycodone can alleviate the pain, its just fucking horrible and i don't want to have it for the rest of my life
idk what i can do, i really dont. it has forced me to give up a lot of plans in life.
jetsamjetsam 1 month ago
My husbby is a cluster headache sufferer, my heart goes out to ALL of you that go through this. He has only had 2, month long episodes in the last 10 yrs with aprox 5 attacks a day. Oxygen didn't help, he used Imatrex (sp) but you can only use it 2x (if I remember right) in a day. His episodes have been after the holidays, I kind of attribute it to all the crap we eat at the holidays. I have Lupus, I control it with strict diet. I wonder if diet related research has been done for clusters?
blueyedtopher 2 months ago
i feel for you, you poor bastard..
12GAUGEtoyodome 2 months ago
Holy crap, my migrain dissapeared when it saw how pussy it was compare to this.
90talisten 2 months ago 4
You're braver and stronger than I could ever be. I wish you the best of luck man. People need to understand this and look to curing it.
JayWhipp1e 2 months ago
It's extremely distressing to see that there are people like you suffering from things like this. It truly is a horrifying universe we live in. I wish there was something that could cure you.
miketheman321 2 months ago
Holy Shit I would give my left nut to see this disease cured O_O Even more so than my type 1 diabetes...
iamtheking66 3 months ago
Im 33 and I have had my cluster headaches since I was 8 years old. I TOTALY feel your pain brother. WE WILL FIND A CURE!!!!!!!!!!!!!!
youngbradley26 3 months ago
i started with these headaches in april 2009 and i honestly thought i was going to die. i spent 10 days in the hospital getting poked and prodded , and fed all kinds of drugs to ease the pain. i had a CT scan. an MRI and finally a Lumbar Puncture. before they finally diagnosed me. since then i have have gone thru periodic and chronic bouts. nine out of ten of my "episodes" are concentrated around my left eye. the pain feels so bad that i cannot focus on even the most basic of tasks..
wayne16v1972 3 months ago
wow, and i thought my migraines that i get are bad, they're nothing compared to what this looks like. i feel for you man
NinjaProductionz11 3 months ago
I am an episodic CH sufferer of 12 years. I understand. Only another CH sufferer really does, i mean, you can try to explain it to someone, but their frame of reference is just incapable of imagining the pain level with one of these.
Have you tried the imitrex injections? They'll usually work in about 5 minutes. The gold standard. Of course you can only have up to 3 a day, but they've been the difference between me and death a couple of times.
j2long 4 months ago
Ive suffered from these since i was 16 yrs old im 37 now mine come every 2 yrs and last for 3 mths u cant describe the pain but can understand why people that suffer from them want to commit suicide,ive begged my husband b4 now to punch me hard to knock me out so i dont have to go through the pain ive gt 3 kids thats y im still here. im from the uk and cant find any1 here that are ch sufferers so i feel like im on my own with this beast it should be more public to let people know wat its like
74kaza 4 months ago
Me too i just want to kill myself...........i lost two job's through this disease.
I just hope one day a cure for us!!!!!!
hassanhairdo100 4 months ago
I feel for you, poor bastard.
PeepPeepPeepPeepPeep 4 months ago
My brother has had cluster headaches for 7 years without one day of relief. His attacks last all day, without any relief. they have tried morphine, lithium, imitrex, oxygen; anything you can think of. he has no relief. i can not imagine what you and what others go through. You are a survivor. I pray that you find relief. You are so strong. Please, never give up. My brother feels like giving up sometimes, but his daughters keep him here. You are not alone. Sending love from North Dakota.
BGirlSkirtao 4 months ago
Thank u for uploading. I have that since last year I'm now 27.
Before I had thought that headache is just headache like everyone has.
But, now I have it and completely have changed my mind.
I strongly respect what u have done and want every one in Japan knows and understands this disease deeply.
joetack 5 months ago
Hi, I suffer from Cluster Headaches. They started when I was 14, now I'm 23. Three years ago I had a traffic accident, I was driving with my hand out of the window of my car. A van, that had crossed a red traffic light came from my right side and hit my car, the car flipped to its left, and because my hands were out of the window, it litterally got amputated. When I get a Cluster Headache, I litterally wish that my hands would get amputated again and again, instead of getting a cluster attack.
MrDonLogic 5 months ago
I have suffered with them for over 33 years and stayed in the game for my family=wife and 2 sons but they are way grown now and I will NOT go through another year with them. better to be dead
itsallamindgame 5 months ago
Hi, So glad you've put this vid up. I've had them for 5 years now, and am also chronic. Mine last 15-30 minutes, usually, and I get 1-4, sometimes 5 a day on average 3 times a week. I call them the Tsunami of the headache world. No offence, but anyone who says a headache or migraine is bad, is an amateur. And I get daily chronic headaches and migraines as well, so I know a little of what I'm talking about.
LizMineart 5 months ago
I've had these headaches since I was 19. (I'm 26) I feel your pain Tom. I've had them last for half hour. Some days I get them twice day. All of my right side. Feel like a caving pressure on my right temple. My right eye feel likes someone has repeatedly stabbed it.
ComicBookFreak1985 5 months ago
Wow that is awful!!! I had heard of cluster headaches but didn't realize the intense pain. I feel for you and will pray for those suffering. God Bless!!
jemsgirl33 5 months ago
I'm 27 and I've had cluster headaches for about 10 years. What I recently found was that for me, they are triggered by altered sleep schedule (switching from 1st to 3rd shift at work), and stress. I was taking Imitrex for them until I decided that I didn't want to become dependent on medication and/or become a drug seeker, so I've just been massaging around my eye and temple whenever i feel one coming on. Works within about 5 minutes,if i do it when it first starts or when it's full blown.
wmgaddy3 6 months ago
Mine always happen behind my right eye...how about yours??? It's only behind my right eye... Plus does you ever last for for days maybe even a week??? Mine do!!!
masterjmich 6 months ago
my eye feels like its gonna explode out of my head i wanted to dig my eye out
likeagsixx 6 months ago
i know what your going threw dude you took it like a hero dude i suffer from really bad migranic pain in one side of my head take medcation for it hang on there dude u really need too see a speicalist about your condition dude
MrOmran10 6 months ago
Very useful information....! thanks for upload this video...!
HeadacheTreatment 6 months ago
OMG I understand headaches I have bad migraine headaches but I feel so bad for people who have cluster headaches... wish there was a time use of a pill that will take the headaches away...
yamaharider149ify 6 months ago
Hi! I saw ur video ... And I think I know what ur going thru ... My husband suffers from that horrible (cluster headache) too...I try my best to make him feel better when he's going thru that pain... And it just breaks my heart when I use to see him like that... I say use too cause his doctor found the cure for him ... The name is( sumatriptan ) do a research ... And trust me that's the cure for your problem!
sujeyalarcon01 7 months ago
i feel so bad for you, i cant sleep at night knowing some people go through constant imense pain and i commend you for having the courage to help spread awareness of this problem
myeyeswillburn 7 months ago
I get cluster headaches every 3 years or so. I know the pain you're talking about and I seriously doubt I could live with it as a chronic condition. My heart goes out to you.
fozlessfoosnick 7 months ago
I too suffer from this, seeing someone else enduring an attack actually makes me want to cry, and I'm pretty tough emotionally.
leedeecee 7 months ago
For all u who say these are migraines...you guys have no idea. I know for a fact all the clusterheads have all thought about taking their lives at one point. I feel your pain and I'm praying that someone will one day come up with a cure for this.
arredondoroy 7 months ago
oh my god.. I can't even imagine a life with cluster headache, and I wish all of you all the best and that it will get better soon.. I feel so sorry for you :(
xLittLexSatanx 7 months ago
Hey Tom, my name's Nick... I'm dealing with the exact same thing... If you could message me I'd like to talk. I'm only 21 and I'm really concerned with this
CoupleDrinks 7 months ago
my heart goes out to you
ducksoup2007 8 months ago
I've had these attacks since I was 16 years old. I was diagnosed years ago. Now being 42 it ain't getting better. Seeing you on the video it was almost like looking in the mirror. Once a year for 6 or so weeks...2 to 4 attacks each day...30 mins to 3 hrs attacks...people look at me funny when I tell them passing kidney stones in two separate occasions was a walk in the park compare to this pain...worse part is nothing really help, only wait for the pain to go away...
kelo2000 8 months ago
I really feel bad for my wife. She suffers with each attack I get because she is so helpless to help in any way and I don't want her even whispering to me or softly stroking my back or leg. I only wish I could take back the times I screamed at her when she was trying to soothe the pain when I was having an attack. I love her dearly and she doesn't deserve these damn things any more than me.
To all you CH sufferers out there, good luck.
TheTemest 9 months ago
My father has been suffering from these for a very long time, I feel so bad for him when they happen because there's really nothing I can do. I have asked the Lord so many times to give me his pain because I have seen him suffer way too many times.
pacoboi96 9 months ago
@pacoboi96 Your lord doesn't give a shit I'm afraid. Did this man have the benefit of a choice? I think not. To all of you who have literally perfect lives and believe in God, fuck off, the only people who need to believe in God for comfort are people like this hero.
AzeraProductions 2 months ago
@AzeraProductions I completely agree with you.
hollybee43 3 weeks ago
i was diagnosed today with cluster headaches.I know what its like.......
TheWoermi 9 months ago
@TheWoermi
how long did you have it before it got diagnosed?
coldheartedsquirrel 9 months ago
@coldheartedsquirrel about a 8 months. I was lucky
ClusterHeadSurvivor 2 weeks ago
@TheWoermi Some advice from a 22 year sufferer who also has a medical background. Learn as much as you possible can about CH. The knowledge won't lessen the pain, but will assist you in making decisions about your treatment. Do not be afraid to challenge your physician as most physicians get their education about CH from patients themselves. I have educated many docs out there.
TheTemest 9 months ago
also, a cluster head....
you have the biggest balls in the world showing a video of yourself like this.... I kick anyone out, make anyone leave immediately and have so much fear that anyone I know might ever see me like that and never look at me that way again.
you're a cluster hero
sneakonproductionz 9 months ago
These headaches scare the crap out of me. I hope one day, all of this stops for you and never comes back. Knowing that such an illness as this exists is absolutely terrifying. I don't suffer from these but they still scare me immensely and have done so since I found out about them 6 weeks back. The fact I never knew about them before that just goes to prove that awareness needs to be raised. I hope this ends for you eventually.
The1985Channel
The1985Channel 9 months ago
I have had it since I was a kid and i'm 29 now and still get them. the longest one lasted 26 days. that was last October.
goss525 10 months ago
I cried when looking at this vid.
Q8379 10 months ago
I've been having Cluster Headaches since 2003 off and on every couple of years lasting about 6 weeks at a time and didn't know what it was or that it even had a name; This is the worst thing I've ever encountered in my life; But to see a Chronic Cluster Head Patient is totally dreadful; My heart goes out to you sir, I can't see how you survive! i was just diagnosed on 3/24/11 WOW what an eye-opener!
BreadandWaterProd 10 months ago
@Lassannn
Please email this piece of SH*T and tell him how you feel about his comment....rather than delete it....I wanted the world to see a scum bag like this piece of crap. You should be ashamed of yourself.....send this low life lots of mail!
ClusterHeadSurvivor 10 months ago
@ClusterHeadSurvivor
He has been reported for violating youtube terms of harrasing/insulting people with disabilities !
ClusterHeadSurvivor 10 months ago
I hope they find a cure for your condition someday, you're a brave man
GeoMcEvan 10 months ago
My god......It's hurting me to see you this way....I totally know what your going through....the only thing that deviates is that Im having then once every two years......so Im blessed (in comparison to you) I wish you the best my friend.
Demolitionben 10 months ago
You are truly a hero to suffer such great pain for the sake of your son.
This is one great act of love, I pray for you, that you and all that suffer from this horrible disease will be cured for it.
iamzafkiel 11 months ago 37
@iamzafkiel
that isn the nicest thing a stager has ever said to me, thank you
ClusterHeadSurvivor 11 months ago 12
@ClusterHeadSurvivor
Your son must be very proud of you
iamzafkiel 11 months ago
@iamzafkiel what do you mean by he's a hero for enduring pain? i don't understand, do you mean he's a hero for not killing himself from this intense pain?
yoyoboy70 5 months ago
I hope someday someone will find the cure for it, it pains me only to see him suffering.
iamzafkiel 11 months ago
I watched the video and burst out in tears. I also suffer from clusterheadaches, i recognize the terrible agony that you're going through. I pray that God might take away your pain man!
TheSenkie 11 months ago
Dear Tom, Out of respect for a comment you posted on a video I created, I have removed that video.. I wish I had the space here to explain its original intention. I will however end with wishing you P.F.W.F.L xx
chrisandvicky 11 months ago
Mine isn't chronic, but it's pretty freakin' bad. I was diagnosed with this last night in the ER. Going to see a neurologist. They've prescribed medicine for it, which makes it bearable. I could go 3 days feeling fine, then that bastard is back again. I'm 18 years old, and I've never experienced this before until 5 weeks ago. I wouldn't wish this on my worst enemy. I feel for you, man. Hopefully, you'll find peace.
IstillOwnAvcr 11 months ago
I think I got my first one when I was 25 or so? I'm 36 now and I absolutely dread when I have them. It's always near my left temple and my left eye feels like it's about to explode! The pain is so damn intense, I don't feel like moving or even breathing. They have lasted from anywhere from 30 minutes to 2 hours. When people say they have a common headache, all I can do is laugh and tell them they have no idea what true headache pain is like.
mcivwah 1 year ago 8
@mcivwah --- Hi there, I have some good news (sort of) mine started intensly about the same age, but as I turned 40 they started to not happen as often, I went from 3 times per year for a duration of a month of hell to not even getting one last year. I have read that as some people get older they get less of the cluster type head aches.. So there's some silver lining in getting older..
zionnofate 11 months ago
@mcivwah try having fibromyalgia and cluster migrains. wellcome to my hell. I feel like a vampire. no bright light pls.LOLOLOL since I have had kids, I havent had anything but pain and illness. I wish I could just retire from work and stay home to deal with this but, I have another 18 year. I hope I win the lottery this is no way to live.
crewlla 11 months ago
damn, i hate just a normal headach, i cant imagine this! how does this happin?
tylerboy1333 1 year ago
just read some of the below discussions regarding the use of illegal drugs that could help in fighting ch. i have done it myself, taking trips (lsd) just to see what it could happen and the results were great. no attacks for couple of days during the cluster period. and if one's got a ethical problem coz trips are illegal, there's a lsa (or lsd) developed by a chemist that does not get you high and is perfectly legal, sold only thru prescription so it could be something to consider. cheers
abc1155 1 year ago
Do not despair, there is now a solution that is very likely to be soon available across Canada. My Neurologist'll present the results of his research at Calgary in February. I can give you the results for me after 30 years of hell I have no attack for almost two months and without any medication. This surgery is not directed only at chronic.
"this is auto translate"
charreal666 1 year ago
@charreal666
what is it?
ClusterHeadSurvivor 1 year ago
@charreal666 wow you got all us ch sufferers jumping up and down! is there really a way to this stop once and for all? looking fwd for further info about this breakthru surgery care to share little more details? cheers.
abc1155 1 year ago
You cope with your pain so much better than I do. I slam my head off the floor or wall. I beat it with anything nearby -- a remote, phone, book... I recently found out what I've been going through the last 8 years are CH. I never knew. I thought I was crazy. Now I pray to God my little boy won't wake up and see me going through this. It would give him nightmares my life has become.
beckyls81 1 year ago
Yep, that was just like me this morning. Luckily I always have my painkillers close at hand...Tramadol Hydrochloride upto 10x50Mg tablets WILL stop the pain within 15 to 30 minutes....which is great as my cluster-suicide headaches used to last upto 8 yes 8 hours of pure perpetual devil white lightning agony.
Everyone in the world shoud just experience this for 15 minutes only in their lifetime to realise what pure agony feels like. Mine are worse than a broken bone or the worst ever toothache
depoty 1 year ago
@depoty
Funny, true...but other night I had a brutal one....and I do have a sprained left ankle and a broken right hand right now with an ongoing toothache last 3 weeks and a bruised right heel. And yeah your right.....not even the same page,
ClusterHeadSurvivor 1 year ago
@ClusterHeadSurvivor
Very sorry to hear about your brutal attack, my sympathies are truly with you. Sorry to hear of your other pains too. Funny enough I had toothache 4 weeks ago and needed an extraction....this did not help my CH, as you may know the Trigeminal nerve (this is the culprit of the CH pain) is all connected.
if I may edit my last post too...Tramadol will NEARLY always stop the pain if I overdose on them up to 1000Mg
Also my sympathies out to all CH sufferers
depoty 1 year ago
I saw your vid and it makes me feel very sad. My dad suffered from cluster headache too and it belongs to one of my first rememberings to see him sitting on a chair having those attacks. After having many episodes when he was around your age the time between became longer and longer. Today he is 70 and is headache-free for about 25 years. I am sure you know better about this typical progression than me, but it may may give you hope anyway. Stay strong!
99Watashiwa1 1 year ago
Thanks for putting this up. I used to get migraines; these days I get cluster headaches thro' Jan-March, every few days. I just pace and pace with one eyelid drooping and a slowly rotating spike of pain in my eye for forty minutes.
Alcohol is bad, but low light is also definitely a factor for me (the Wikipedia pages on them suggest the same.) Maybe a light box might help some.
Mine aren't as bad as yours. But next time you suffer, although you might feel alone, you're not alone. Thanks again.
adecentusername 1 year ago
I suffer from Migraines. I get them all the time and it just sucks plain as day. I was reading up on my Migraines (Which I go to the hospital all the time for) and came across these things called Cluster headaches. Apparently they make migraines look like nothing. Talking from experience on Migraine pain all I can say is your a strong guy to go through these cluster headaches. I would have resorted to LSD in a second. Good Luck to you I hope you find some kind of treatment.
ProRanting 1 year ago
@ProRanting
NO to LSD....Ill be pushing up daisys before I ever take an illegal narcotic.
But thanks anyway
ClusterHeadSurvivor 1 year ago
hey thanks for the upload, me to been haveing sevre headachs, doctor keeps giveing me fuckin antidipresents which do nothing, there all left temple and i feel as if im loseing my inteligence and have slured speech and confusion, worst of all i want to die to rid myself of the pain, when i get the bad attacks i lose half the strenth in my left arm, had a scan, came back clear, sometimes i pray for death, its a curse
leanmachene 1 year ago
CHSurvivor, I am certain you have tried prednisone/solone etc.. but just in case you haven't... give it a try, its a corticosteroid that gets rid of the headaches while you take it. You can only take it for days at a time (in rare cases up to a month or so), it does bring down your immune system, so stay away from sickies. Try it, or let me know if you have before. I am like you, Chronic, and nothing works 100 percent, 12 years now... WOW 12 years! just realized that. Give yourself a break!
ltsgoyanks 1 year ago
Hi, I'm truly sad to see you suffer like that. I'm 31 & live in BC. I've always had migraine since I was 5. About 15 years ago, I got my first CH attack & ever since, I get it every year, 2-3 attacks a day & it lasts for about 2 months. Last year, I started Oxygen therapy & it helped me a lot. If you can, rent & use it for a month or 2. Here are some drugs that might help you relieve the pain. Triptans (Eletriptan, Rizatriptan,Zolmitriptan....), Propanol, Codeine, Verapamil, Sansert.
mmekit 1 year ago
@mmekit
Thanks. I have tried all. Unfortunately none of them work. as per my previous posts. chances of finding abortives for chronic sufferers are alot more slim than eposodic sufferers. But thank you for the kind words and may you get rest frm the beast within
Peace
.
ClusterHeadSurvivor 1 year ago
@ClusterHeadSurvivor
Hi, just lived through an intense 6 weeks cluster (my active periods occure only 1 - 2X a year, with an attack every night during an active period). this time, i started to suspect a connection between histamine-rich food (i'm not exactly eating healthy) and the intensity of my headaches. went on a radical rice & apple diet (lost 10 pounds in the last 2 weeks...). headaches went away litterally immediately. could be coincidence, but easy to try... hope you find a relief
georgfly 1 year ago
@georgfly
I know certain foods trigger attacks for me...chocolate, peaneuts, spicey foods, etc...
can you list some high histimine rich foods please?
thanks for the msg,
ClusterHeadSurvivor 1 year ago
I feel better now knowing I am not alone. I am 28 and live in Saskatchewan...I just started getting these cluster headaches two years ago and they r back full force this year again ...for over a week...every night. They were waking me up at 4 am (usually 2 hours after bed) and sometimes Id vomit because the pain was so intense. Im scared to make any kind of plans or commitment in the evening because they come on between 5pm-4am Somebody shoot me
markos077 1 year ago
XD hey hey hey i was just saying. like really. nothing makes them go away, and they fucking hurt. god bless those who suffer from CH
TeeBoneTrail3rs 1 year ago
Thanks for sharing. I can now share our pain with those I work with in hopes that they'll understand what we go through. Hope your cycles have taken a break. Mine just started again :-( Another poster advised that we need to be happy when we're not dancing with the Demon. I agree. Can't wait to be happy again!
BackstageProJeff 1 year ago
Fortunately I've never experienced pain like that but i feel for you man. Hope one day you no longer need to deal w/ CH.
southparkrules112233 1 year ago
dude the fact that you were able to talk is........amazing.i get these as well and i just want to rock back and forward and tap my feet or something i just cant stay still and talking is the last thing i want to do. i went just over 5 years without having them and then they came back last september. im lucky tho, i have never had more then 2 in 1 day. hope you are doing well
Panthraxritual 1 year ago
How much more painful are cluster headaches than migraines? I have chronic migraines which I can't stand but seeing someone in THIS much pain puts things in perspective for me.
Also, do you understand the neurobiology of your own condition very well?
Wish you all the best mate, there IS a cure for these things, we just need to find it!
robert000ooo 1 year ago
@robert000ooo
their is absolutely zero difference in pain and paint tolerance. Migraines are over the head. Silence and darkness helps when dealing with a migraine. Cluster headaches are behind my right eye. starts at trigeminal nerve in my right upper gums. Paint moves up to my eye and pending severeity will travel to my right ear drum. Migraines are unilateral where clusters are exact same spot everytime. I suffer from both and tension headaches too. Pain is 1000x more severe, cant compare
ClusterHeadSurvivor 1 year ago
Thank you to my son who is my inspiration for being alive. Thanks to my fiance for being the most supprtive loving woman on the planet. Thanks to my folks for understanding and having the compassion to know its not my fault and I do the best I can. Thanks to all the other CH sufferers out their that battle this horrible disease. Thanks the the spouses and families and friends who see us go through this and support us by being there without being judgemental.
God Bless
ClusterHeadSurvivor 1 year ago
Seek a stress/drama free life. Smile when you are not having an attack. Breath the air that god gave you and love the ones that love you uncontionally. Thanks for listening. I wrote this after having a 2 hour Kip 10 attack and happy I am alive.
ClusterHeadSurvivor 1 year ago
They love i feel gets me though these things. (ligh at end of tunnel). Being alone having an attack for me is the absolute worst. Scares frig outta me.I dispise being without them when having one. Yet I avoid the public when having one. I seek releif by their love. Its unconditional and peacefull. It helps me far more any drug
ClusterHeadSurvivor 1 year ago
Some days are much harder than others. On average I sleep 3 hours a day and now used to it. I will never do any illegal drugs regardless of my health. My morals are far greater than the pain i endure. Iam blessed to have a woman whom loves me uncontionally. A son that knows i wont die over this. Their personal unconditional love and touch by their hand on my back when having a brutal attack is peacefull and offers relief mentally.
ClusterHeadSurvivor 1 year ago
I been using ALEVE in gel caspsules and they help for small to mild attacks. Maybe in last year have used Imitrex injections 4x but avoid due to bad side effects. O2 does NOT work for me. I was a guinea pig with neurologist for few years and got zero releif or help. Just bad side effects. I just tough them out so to speak
ClusterHeadSurvivor 1 year ago
Update: Its been over 5 years now having these. I have lost friends, a job and lots more over these Clusterheadaches. I found out that certain foods trigger them
(peanuts, although I am not alergic, popcorn,red meats, food with red dye in them,chocolate, alcohol(dont matter I dont drink anyway),spicey and greasy foods).
ClusterHeadSurvivor 1 year ago
this is a horrible disease ... i found out about it today and havn't been able to stop reading about it. that a sickness such as this excists kills me. and i admire those who manage to survive this disease as i think i would not have been able to do so myself. i really hope they find a cure against this vicious disease so people that suffers like you can be helped.
it's just not fair...
dinmolle 1 year ago
my name it tim. my father suffered from these CH for most of his 20 and early 30. he is now 74 and they have returned. 2 to 3 a day. lasting from 5 to 30 mins. sharp stabing pain only in the left eye. each day about the same time. you can almost set your clock by it. he watched you video and can relate to the pain you feel. it is awful what yall go through. i used your video and a dr video on youtube to find out what he had. we are seeking help from a nero. dr. any suggestions ????
deerfishhunter123 1 year ago
I feel for you and wish you the best!
OtakuPraetorius 1 year ago
I feel for you! My cohabitant also have cluster headache. He's chronic, and i can't really imagine how much it hurts. Good luck , and let's hope someone can find a cure! :)
ihh1993 1 year ago
wow it's so hard watching this, and not being able to help :( I sure hope someone medical will find out what causes them, and a cure for everyone who has them. Best wishes from me
Nanain 1 year ago
I take a triple dosage of pain killers 5 times a day. Is it healthy? Fuck no.. but how else am I supposed to hold down a job.
gambla153 1 year ago
That's terrible, i hope someone will find something who can't stop this : /
Peace from france, bro !
SweeetPicker 1 year ago
Mayo clinic put me on mega-doses of prednisone with no taper about 4 years ago. It causes swelling of the feet, ankles, lower legs, face and overall 30 pounds of weight gain in 2 weeks. This protocol breaks a cycle every time in about a wek or two.
Bottom line, the side effects (shor term and long term) are terrible and detrimental. Let me see........horrific pain every day of my life or pain-free with extremely bad side effects. I choose the latter. Good luck to you.
azmab 1 year ago
Dear Tom,
I feel bad for you, And i hope you have some medication now, for your attack's.
I'm a 32 young woman, and since 3 year's chronic myself. Use oxygen and in a worst case Imigran, also have prednidson, i find it the worst pain known to mankind, and this is for all you survivors out there: Bless you, keep on fighting, i know it's hard but we have to... i hope that people get to understand cluster headache..Tom thanks for you vid!
With regards Agaat ( The Netherlands)
magje77 1 year ago
@jinwenyou I know exactly what you mean about beeing frightened to sleep. This happens to me every 2 years...last time was oct/2009. That's when I discovered what my problem was after 20 years suffering. Hope you get well soon dude. No more pain!!!
Ramshackled17 1 year ago
iam so sorry youjr goin thru this, we've me and hubby have been dealing with them for 10 years now...we found a doctor named david kudrow in santa monica calif that has helped us tramendously..i hope you can find some help for yourself!! god bless..and oxygen at 15 on the regulator works for him..and u need the mask with the bag on it...take care leslie in california
lrush805 1 year ago
From ontario too!
I'm doing a lot of research right now because i suffer from severe mirgrains, up to 2 a week.
But holy... i just heard of cluster head aches and wow.. i'm scared.
Is there any relation to migraines and cluster headache.. or are they seperate.
Is there anyway i could develope cluster head ache and is there any way to prevent them?
My heart goes out to you and all you other headache suffers!
<3
veearr 1 year ago
@veearr
no they are completely seperate.I suffer from Migraines, Tension headaches and Clusters...they are all 100% different. ONLY once I ever had a migraine and a cluster headache at the same time....Thank god its only ever been once. I used to suffer from 5-7 migraines a week prior to getting clusters. Now I only get 5-10 Migraines a year. Neurologists told me that it is common for migraines to subside when you get clusters....gee thanks, LOL.
ClusterHeadSurvivor 1 year ago
i am 27 year old female and i've been having cluster headaches ever since the age of 20. one day it just came out of nowhere. my neurologist has me on a prescription to reduce the occurence of the headaches. it helps for the most part...sometimes i still may have a headahces but the pain is less intense when im on medication
niniharris1 1 year ago
u made me cry
hotnezz555 1 year ago
This is horrible. I can't do much, but just so you, there are people on the other side of the globe who's hearts are with you. I wish you the best of luck in life man.
Nahasanamapela 1 year ago
My prayers go out to you. I've suffered from episodic cluster headaches for 15 years. I can't even imagine how painful it must be for chronic sufferers. You're a stronger man than I am.
Have you ever tried the prednisone/verapamil route?
Stegmutt 1 year ago
I really hope you never get the headaches again :) I'm a sufferer too but mine dont last so long they last about a minute 3 times a day for 2 weeks. And my cycles come every 2 years. I hope someone finds a cure fast! :)
maggieva80 1 year ago
thx for your contribution, that's going to be useful for md students who know epidemiology, pathophysiology, symptoms and signs of this so called "benign" disease, but then know nothing of what it really is if they don't see the suffering. thank you.
TheElymus 1 year ago
thx for your contribution, that's going to be useful for md students who know epidemiology, pathophysiology, symptoms and signs of this so called "benign" disease, but then know nothing of what it really is if they don't see the suffering. thank you.
TheElymus 1 year ago
god im soo sorry
luv2spooge1 1 year ago
I had my CH last Dec, 09..it'll come back again i 2 years. I live in new york and work at new jersey last dec. while driving in the holland tunnel I had my attack I have to top at the gas station and their rest for 4 hrs of agony, imagine the noise of cars honking and light from the sun. its a total of a HELL experience. 3-4 hrs of CH for 10 days. just want to share my experience.
09omac 1 year ago
sorry for you man, I have this cluster headache also, every 2 years..pain can last 3 -4 sometimes 5 hrs. my jaw lock my hands get numb and blood pressure goes high because of the sickening head pain..
09omac 1 year ago
02 wont work if you do not use it properly (I know for fact), It must be at 25 LPM with a NON-Rebreather mask. That is the way to use it, if it dont work then.....try Zomig, it dont have the rebounds like Imitrex.
Good luck!
Jonnymule 1 year ago
seeing that pain in you i cant believe that a fucking god exists
Lapicoz 1 year ago
Started getting headaches on the right side of my head. Then it got so bad that it woke me up in my sleep and throwing up from the headaches. So painfully I broke down crying and it killed me that I started hitting myself. The pain feels like a nail is being pound into my head with a sharp pain in my eye, my hearing goes and the right side of my head feels as if it well blows open. Very glad that I only have the headaches for 2 months, 3 to 5 time a day. Really do feel for you man, stay strong.
chavez0001 1 year ago
started getting bad headaches on the rightside of my head. it got bad that it woke me up in my sleep and started throwing up from the headaches. so painfully that i broke down crying that i started hitting myself. this really blows. the pain feels like a nail is being pound into my head, my hearing goes and the right side of my head feels as if it well blow open. very glad that i only have the headaches for 2 months, 3 to 5 times a day. when IT happens. really do feel for you man, stay strong.
chavez0001 1 year ago
does it stay with you until death?
CowHoofOnAHotPlate 1 year ago
@CowHoofOnAHotPlate
YES
ClusterHeadSurvivor 1 year ago
just imagine a young baby Screeming his head off , and all people around saying " shut up you littel so and so" , while it is not his falut,only because that babay has Cluster Headaches and he does know how to ask for help . as you blocked what could be the only hope for him maybe for the next 200 years comming.
you and I old and we can not take it , what about him !!??
clusterheadachesfree 1 year ago
Suffering for about 10 years here and just coming into my annual cycle. Luckily I get relief with o2 and my handy dandy roid-pak (which I seem to be tolerating well this year.) Hang in there and thanks for the vid.
lspell 2 years ago
I am in cycle now. Can not imagine being chronic. I was crying watching this because I know exactly the pain you are feeling in this video. Also I noticed the palsy is extreme. Does your eye droop when you aren't having a cluster? My right eye is noticably smaller than my left now after 12 years of cycles. What treatments have you tried?
yayagirl810 2 years ago
@yayagirl810
i was a guinea pig for 2.5 yrs with neurologists...pumpin my body full of crap....I dont take anything but ALEVE in gell for mild attacks...the brutal ones...I suck it up and try to live through it
ClusterHeadSurvivor 1 year ago
I have suffered from cluster headaches for 14 years. I use Imitrex injections at on set and it normally takes the pain away within 5 minutes. your only suppose to take 2 shots in a 24 hr period. I have taken well over 2 shots because I cant stand the pain and I know by taking a simple shot, the pain will be gone!
the last 2 cluster cycles I have had, I have received a "never block" . its wonderful!! worked very well for me! I recommend to anyone with cluster headaches!!
stacibotter 2 years ago
Wow, I never realized how much I took for granted till I got the opportunity to research on cluster headaches. Hats off to you, man; if I had to regularly deal with pain equal to childbirth for hours I would be fully suicidal. Btw what remedies are out there, and any organizations that educate people on this?
retroguy02 2 years ago
id become a herion addict pretty fast if i had to deal with that..respect to u and good luck beating this condition
1ukjunglednbraver 2 years ago
Thank you for posting what your attacks are like. The more we clusterheads' show the world what cluster headaches are like, the better the hope of finding a cure. Not to mention for showing other that clusters are not "just a headache" . Wishing you pain free days. Paul
Versilleus1 2 years ago
Im a sufferer for 11 years now, and im chronic too. Everyday i have 1 attack, around 2 hours after i wake up. Thanks for sharing this. Maybe some people start to pay more attention to us. Here in Brazil we dont have too much medication for that, except sumatriptane, and its too expensive and rare to find. Stay strong, my friend.
edumartins 2 years ago
for gods sake get the imigram injections, dont know what they are called over in the US or Canada, but they do work. Thinking of you mate, fellow CH sufferer
leap2jump 2 years ago
I really really hope that there will be a cure for this someday soon so that good people like you don't have to suffer. I wish you all the best my friend..
alexkvaskov 2 years ago
I feel really sorry for you. I hope someone finds a cure. I read an article today about oxygen therapy. Not sure if this has helped you or not. Have you tried hypnosis perhaps? Is there any way of diverting focus somehow? I imagine that would be very difficult under the circumstances. I sincerely hope researchers find a cure.
Geotubest 2 years ago
Does anybody else have phobias related to this? Thanks for this video. I can totaly relate to this! I rather be kicked in the groin.We need understanding from friends,family,and work.
paulypaulification 2 years ago
Thank you for sharing this. My son started having CH when he was 16 years old, he's now 24. When it's to the point I'm worried he'll kill himself because of the pain I take him to the emergency room for morphine injections. Works slightly for about an hour. More people need to see your video so they will quit comparing CH to migraines . My son's CH get so bad he will quit breathing, beats his head, begs for death, goes into a seizure like state etc. My thoughts and prayers are with you.
tavy3dattack 2 years ago
Hang in there tom, I'm going through it with you buddy. Have you been doing any treatment? Oxygen or Imitrex injections?
Jainjme 2 years ago
I know what you go through I have had them since I was 21 years old. I'm now 59 I finally found a Doctor who knows what he's doing haven't had any since March 12 of 2005. He put me on Verapamil 180mg twice a day and I have Imetrix inhaler in case I should get one. So far so good haven't had any in all most 5 years now.
Mel85255 2 years ago
In the UK they still won't prescribe us with oxygen for them. Several years ago when I was going through an episode and in that state where you'll experiment with anything to help, I found for some reason doing sets of push-ups until I can't do them anymore when I feel the onset very often aborts them. Don't know why or if it'll work for anyone else. Maybe it's the heavy breathing or something to do with blood flow? If this just helps one other person though then I'm glad. Good luck to you all.
shabbyshotts 2 years ago
dear tom i know where ur at ur not alone best wishes dave
mrrattomago 2 years ago
ive started doing research on headaches to try and alleviate my own( they are mere tension/ migraine headaches. id heard the name cluster thrown around but never seen how bad they really are!! i know you dont want pity but i feel so sorry for you guys, i thought i was misunderstood! i just about cry when i watch these vids!
00sven00sven00 2 years ago
Don't cry we all !!! we better die because World Health Honest Proffessors do not care that 6 million patients cluster headache can be in a minute cluster headaches free; they think of being rich getting freely the scientific treatment from one of us who became the only patient now clusterheadachesfree without their oxygen, drugs or medicine. They will spend more hundreds of years of research while the result in hand of clusterheadachesfree man. We better die no way to cry. They are earless.AAH
MrWithorWithout 1 year ago
hey i have cluster headache myself for about 2 years now going since 4 mohnts pain free my shortest attack was 20 min my longest one 6 hours wen id comes i stay in the dark id kinda help me i dont know why an i wish u good luck
OffenburgerJungs 2 years ago
Try Zomig nasal spray its a triptan but there are no rebounds and it works just as fast as the Imitrex injects.
I have 31 years chronic in this game so I know what im talking about!
Good luck!
Jonnymule 2 years ago
Hi Tom, I do feel so sorry for you. I know how you feel. I have been having them for over 25 years now and I am 41. When we have them we all seem to react the same way. I thinnk it is a very good thing that you posted this video for people to see and see the similarity with other people who suffer from them. But I don't thing that people who don't have them will be able to understand the terror that we go through but can only have an idear how worse it is. Many Regards, Tom (my name too)
puppetwizard 2 years ago
I get them every 2 years for about 3weeks everyday sometimes 3 times a day I'm getting them now I still haven't found any meds that helps at all and I do feel u man belive me
vrosas33 2 years ago
is this where the word cluster fuck comes from
jay4457 2 years ago
@jay4457
yes, its does come from this horrible disease!!!
ClusterHeadSurvivor 1 year ago
Just finished a 3 month cycle, 1 week without headaches. I use acupuncture, i find it helps shorten the cycle and cuts the intensity. But goddamn these headaches suck. Good luck!
hooliojones 2 years ago
omg how do you put up with that pain everyday
Ch33ky360 2 years ago
@Ch33ky360
having the most loving fiance, son and family helps me through these with the touch of uncnsitional love helps me....without them...? probably 6ft under
ClusterHeadSurvivor 1 year ago
Hi all, I have been to hell and back with this evil cluster headache pain, I have had it for 5 years now but would you believe I was origionally trested for lymphoma??? and infact it was cluster headaches all in all took 5 years before I was finally diagnosed yesterday, Im now just waiting for my neuro surgeon to come up with something to stop the PAIN as I get 4 a night each 1 gets worse to make it worse I lost my job 3 weeks ago as I was so drained, we all need 2 hang on in there. xxx
leap2jump 2 years ago
hey tom, i have a question for you. I recently figured out that these cluster headaches exist and i'm scared to death of them now! my dad told me that he used to experience them but he hasn't for atleast 10 years. I'm wondering if cluster migraines are genetic? If you know this please let me know
epsg123 2 years ago
@epsg123
chances of getting them heriditary are like 1 in a billion.
ClusterHeadSurvivor 1 year ago
Like I've said before on a few other videos, ever try a heating pad? Something about the heat makes mine go away in less than 20 minutes. It hits me as odd that you'd also be so worried about morals and laws when you're in pain. Companies and lawmakers don't care about us--that's obvious as you're still suffering.
danagasta1 2 years ago
Thank you for the couragous video. I'm a felloe sufferer too. I'm using Varipramil 240 plus everyday to keep theattacks to managable. I'm schedualed for a 2.26 am attack. I will be thinking of you and hoping itpasses fat for you and me. I'm in eastern Ontario. CHBrother
Pigearvet 2 years ago
im a sufferer for 19 yrs, my main relief in these times of grief have been cold running water right over the temple. i also freeze water bottles with water and put them against my temple in a CH attack. for some reason, the icy burn i get from the cold water sometimes lessens or even fully relieves the pain for me.
shotcalla134 2 years ago
I know what you are going through, I've suffered from CH since my teens, I am now 42.
I can't use constrictor medicin due to nerve damage to the blood vessels in my feet. But oxygen helps.
Have you tried verapamil? It works well to lessen the strength of the attacs. Cold water over my head also helps a little.
Hang in there, never give in to the pain. Adopting a fighting mind helps a lot as well.
Best regards
tenchijindenmark 2 years ago
I'm sorry for you. I know what you are going through (CH 15 years in periodes of 6 weeks). I use oxygen (works to me) and: water therapy. Drink a pnt water each half hour during my periode. makes the atacks shorter and less painfull. Try it. Can do no harm.
Greetz
Willy (elvis fan too :-)
willyslaats2 2 years ago 2
does not compare with the indocin i sold all my rifles because of the fear i would had i not done so i would have without a doubt im so glad i found a real doctor who understood my condition
knutervalve64 2 years ago
Imitrex I have but causes 10x of rebounds and side effects are bad. Oxygen dont work. No into shrooms. Its illegal and against my morals. But whatever works for someone else I wont condem them for it. Thx for the msg, Peace
ClusterHeadSurvivor 2 years ago 3
bro it's really broke my heart into pieces,i'll pray for u now onwards......god please wipe out this hell torture from mankind....
dataone077 2 years ago
Have you tried marijuana? The effects aren't nearly as intense as LSD or mushrooms. I understand if it's against your morals as well, but I figure morality becomes subjective in a situation like this. Keep going man. I admire your strength. I think you've inadvertently set an example for your son, too, of the strength of the human spirit.
KradProductions 2 years ago