For all cluster headache sufferers: Bless you. Bless your souls. I cannot begin to imagine the pain you feel, but by the numerous descriptions of the sheer pain I've read, I believe I have an inkling of understanding. You are among heroes of legend, for me, at least. You fight through Heaven and hell just to survive these attacks, and I wish I could help every one of you. Bless you all.
Been there. Done it. Got the T-Shirt. My heart goes out to this poor fellow. For those of you thinking he's just a wuss with a low pain threshold, think again. Cluster headaches are completely different from the tension headaches most of us get from time to time. If you've never had one, you simply cannot comprehend what it is like. I once dislocated my collar-bone, and that hurt; on another occasion my I broke my thumb when it got twisted back, and that really hurt; I've had third-degree burns all down one leg, and that really, really hurt. But these things pale into insignificance compared to a cluster headache. There is simply nothing like it.
I've had these since age 21. I'm 36 now. And this is exactly how I suffer. Only my mom and a few friends have witnessed me breakdown. I don't want people to think I'm crazy so I usually suffer alone 😣
Same here man. The guy in the beginning was doing exactly what I do rock back and forth and eventually start crying like a baby. I'm in the process of getting some things to grow my own shrooms cause no other medicine has worked.
@@Flip4910 I had them for seven years non stop in my mid twenties. I discovered by chance that beer was my trigger and haven't had them for about 18 years while avoiding all types of alcohol. ( Crown Largers were the worst beer, maybe it's a preservative they use??? )And now I have had another episode for the last three weeks at the age of 50, so I'm a little confused on why they have returned. This guy describes them to the letter, the most painful thing I have ever experienced, and now they have returned. Today is my first day without one for three weeks, maybe I'll go into emission again. I find that sometimes rubbing my head vigorously and pacing up and down a hall way sort makes time fly by a little quicker. Good luck to you.
Suffered more than 10 years. I don’t know how many times i hide in the corner and cried. No body understands how painful this is. Sometimes, I want to chop my head off and end my life, but I have to stay alive and take care of my family.
The worst pain I ever experienced in my life was when I had a tooth infection that infected my jaw, I was literally mad with pain to the point I took pliers to pull out the tooth and actually damaged part of my jaw, crushed it, and I heard cluster headaches are WORSE pain than that! I can't imagine!
I just had a Cluster Headache, and I'm tearing up watching that beginning.. I know exactly how he feels, the pain is indescribable, like someone took a burning tongs and tried to pull out your eye. It only lasted for 15 min, but FUCK it hurts!!
I'm currently going through a remission over 6 months, but my guard is up because Autumn usually triggers the monster. I've suffered for nearly 30 years now - I have long breaks that last for years, which makes me fortunate. I always anticipate the beast returning though; I feel a short shadowing period in my right eye, then it hits suddenly and completely shuts me down, then happens again, again, again, again, again, again, and again... I honestly hope all of you find a period of peace like I'm in now. Cluster headaches have put me into the hospital, sedated, and on suicide watch a few times.
This was really hard for me to watch, it is the first time I have seen this happen to someone else. I have been episodic with these most of my life, and I wasn't properly diagnosed until recently. There have been many, many nights that I have been Mike, smashing ice packs against my temple, left eye and a spot on the left top of my head a few inches back from the hairline and rocking back and forth in complete agony. They have been picking up in frequency and intensity as I've gotten older, and quite honestly, the prospect of it getting even worse is frightening. There are no painkillers that help. For me, there is only Sumatriptan, and even it isn't guaranteed to work every time or even fast enough to help me before the attack peaks. That these are called 'headaches' is a tremendous injustice. I wouldn't wish the hell I go through on anybody.
I found out by mistake. Clove cigarettes work almost as good as the injection pen for me.and I have clusters for over 20 years.and I agree.i wouldn't wish these on anyone.
I rarely post anything in this digital world. But I came across this, and it was like watching myself have one of these things and then explain what they feel like. Im 44 and had my first one when I was 12 years old. Watching Mike go through one in the begining brought tears to my eyes, because I do the same things when I get one.......I beg it to please stop!!!!! When people ask what they feel like, I have explained it the same way for over 32 years now. Its like an ice cream headache, except 1000 times worse, that never seems to end.... Ive never been suicidal in my life, I love life. But when I used to get 3 of these fucking things a day, I almost put a gun in my mouth. They are that bad. I too, want someone around when Im having them. Not to be held or consoled....just to be there in case this is the one I cant take anymore. I get migraines also, but I can handle those no problem. Anyone suffering from these, and continue living life and taking each episode in stride are ROCKSTARS in my book. The strongest people on the planet!!!!! I honestly wish everyone in the world could experience just one.....that way, there would be more research, more funding, more understanding, and more awareness for such a life altering condition to have. Sorry I wrote so much, I just wanted Mike and everyone else know that you are not alone.
FYI That gentleman is Anthony Amabile who very bravely allowed his suffering to be put into this video about the stepdad Mike of the man who made the film. Two different sufferers whose bravery hopefully will open a door to educating people about cluster headaches. I often think if some mega celebrity suffered from these perhaps he/she could do a telethon on TV whereby education of the public and subsequent donations to research might happen. Blessings to all U who suffer
This brought tears to my eyes. I am so sorry to everyone who goes through this every single day of their lives. Much love and sympathy to you all. Stay strong.
Only found out about these recently and from what I've seen, I can't even begin to imagine what cluster sufferers go through, you must have such a will to persevere that I respect you without a shred of doubt. I've seen this illness described as "the most painful experience a human can ever go through". That is simply incredible how you can deal with that on a daily basis and not contemplate or attempt suicide.
As a police officer here in Norway I would never write a ticket for people with cluster headache taking drugs. If I was forced to, I would pay the ticket myself and leave the guy alone forever. What a horrible, horrible condition!
I just saw a comment from a dutch guy who suffered from cluster headaches for years ..he went to a hospital over here in Holland where he had a nerve in his sinus burned through , he never suffered from it again . this hospital is called the St Franciscus hospital in Roosenvelt .
ive been getting Cluster Headaches for 32 years and im grateful for the awareness that is spreading... watching this video ... o the end... dont you just love when they subside... every time thats what i look forward to... blessings to us all ~
I would just like to say thank you for producing this and for your compassion. I have suffered from this horrible condition for 20 years. The ignorance of the general public,and also most doctors(believe it or not), has always been the most frustrating aspect of living with it for me. Hopefully some people in the medical profession might see this to give them an inkling of an idea as to what it is REALLY like.
Nobody who doesn't suffer from them, or witnessed firsthand an attack, where a strong, full grown man is suddenly like this gentleman here will ever get it. I unfortunately do. 2:23 am. That's my time
4:30 am is mine, it's the most unbearable pain I've ever experienced, I had my first one when I was 15 and my parents thought I was dying the first time I had one.
Jess. I was in my mid twenties when they started. I was working 12 hours a day, living in my own. I kept it to myself, which was not easy. It was the worst thing I ever went thru, but didn't want my family to worry, and I couldn't afford to lose time off work. I went to the hospital on my off hours, took long lunches for cat-scans, mri's and other appt's that I couldn't schedule for off hours. It wasn't until my 3rd cluster, which come every three years, that I finally told my family about it. The dr's had no idea for so long. Just wanted to medicate me, nonstop, to mask the problem, not diagnose or cure it. They thought I had a brain tumor for a while. The MRI said no. Thank god. So for 9 years I was silent, because I thought I was weak, or nobody would realize it's not a headache, as the first people I tried to explain them to. Oh I get headaches too, blah, blah , blah. Then I found out about clusters. And then a dr that immediately diagnosed them as such.
I've tried quite a few over the years. None really work in my opinion. Nothing can stop them. But I take verapamil twice a day, lorazepam twice a day, and nortriptaline at the onset of an attack. This is only after a cycle has started, as once it ends I'm good for 3 years. Oxygen seems to work best, with a cold, wet washcloth to rub over right side of head continually from front to back. The sumatriptan didn't do anything. And another one I had that you place on tongue and it dissolves worked great, but about 20 mins later it hit even harder. Anytime you need more info or someone who knows, find me here, google+, or fb.
Thanks for going to the effort to make this video... I understand what Mike goes through and i hope he is well :) You have inspired me to make a video myself about my attacks and the effects it has on my life... You often find your self in so much relief after a headaches that you try and move on and easily forget the million worries, ideas & thoughts etc you have running through your head during an attack. All the best Daniel
Thanks for this. Being a sufferer myself it's made even more difficult by the fact that barely anyone understands what it's like, this film helps people to get a glimpse of the reality of the disease.
Since this video was made, I've managed to narrow down my triggers. If I get too hot too quickly, then that will trigger a headache, as does high pressure weather systems. There is nothing I can do to prevent the attacks, but at least I can minimise the chances. I'm in an episode now, the worst one coming at around 3am. I can't remember either my last uninterrupted night's sleep, or a night when I've got to sleep before 5am, but that, I'm afraid, is the nature of the beast.
I can. I'm fortunate that my attacks mostly come at night but I always carry an injection kit just in case. I live with them, and don't let them limit me to what I can do.
Hey Mike, glad to see this condition isn't preventing you from living your life. As someone who doesn't live with this condition, I will never complain about my problems again. Pain free wishes. Alex
Hi, I had to cry seeing this video. I suffer cluster headache for about 21 years now. For the last 3 years the beast had left me be, now he is back again. I hope that your video can help people to understand where we have to go true. Mike, let us try to stay strong together, knowing we are not alone! Roel, The Netherlands
I have been diagnosed with CCH. Had it for a year and a half now. Thank you for making this video, it's so real, it's hard for me to explain it to people, it's hard to tell them it's not just a headache. Again, thank you.
I've suffered from cluster headaches for 14 years, it's severely affected my life and I've never been able to find anything to even remotely ease the pain when I'm having an attack
To Anthony Amabile ~ Bless you and loads of love that you may find some relief some day ~ I had a friend who had clusters. It absolutely tore my heart out to see him suffer as does this footage of such agony ~ You are a very brave man to share this online so people have a clue what you and stepdad Mike and others endure with this terrible condition. More research MUST BE DONE to help all of you. Blessings 2U all
Thanks for sharing these kind of videos. It helps to get people educated about this demon and helps relatives to share with others, what they witness. I wish all Cluster Headache patients strength and a loving partner and friends, that they don't feel alone and isolated!
My sister suffers from clusters and although I don't suffer from these I can say that I have been brought to tears watching her during her episodes. You can't help them in any way and you feel helpless. My heart goes out to anyone who suffers from these!
I've heard that cluster headaches are the worst pain known to man. Topping childbirth and a femur fracture. My heart goes out to anyone who suffers from these.
I am a 63 year old woman.When I was in my 30s and early 40s I had these often...screaming with pain that was totally untreatable with meds...the best was one that almost knocked me out but I was still in severe pain...just semi conscious so it was a tiny bit more tolerable. I think hormones have a play in them, stress and allergies. I quit milk and dairy and have not had ONE headache since...UNLESS some thing I eat has a smidge of one of those in it unbeknownst to me. hope things get figured out to help those that suffer...they are pure hell.
Cluster headaches are a terrible condition indeed. I am sorry for your stepfather and pray he finds relief, he'll, I pray that we all do. I hate that people are unaware of how crippling these headaches truly are and compare them to normal headaches. Thank you for this video.
Hello Mike. Unfortunately I fully understand what you are going through. I think it's very brave to tell your story on you tube. My last episode ended in July just to start again by the end of September. Right now I'm in the worst cluster I've ever experienced. How I wish somebody would find a cure for this horrible condition. I wish you and all the fellow sufferers the best.
i have been having clusters for the past 6 years. yesterday i had the worst one ever and had to go to the er. i live in fear waiting for the next cluster to hit me. i am tired to live in this kind of pain. i am going to try magnesium,vitamin k2, vitamin a,fish oil,calcium citrate,vitamin d3 since it seems that some ppl had a positive effect on it. good luck .
After two years of searching, my doctors found that my seizures were caused by heavy metal poisoning & parasites (really hard to diagnose, & had to get it tested continuously for those two years). After being treated, not only did my seizures lessened, but my headaches are also soooo much better & tolerable now. I pray Mike & all others have the same success I did in riding themselves of this pain...
Extremely painfull is still a very understatement of this condition.after suffering myself for 5yrs before only recently being diagnosed I can truly say to all my fellow sufferers,I feel your pain! I'm know on sumatriptan injections twice a day,and am soon too have a high air flow gas system installed in my home.so I'm now in a well better place than I have been for the last several years,although I still get caught out frequently by excruciating attacks!!on the flip side,living with such pain has changed my perception of life,I know see my own life very clearly,and appreciate life tenfold!!As crazy as it may sound,I know the horrific pain that I endure has opened up my so called "third eye".I can see clearly threw the haze now,in all aspects of life!!As the saying goes "every cloud has a silver lining".good luck to all you cluster sufferers!The future is bright,and the treatments available are excelling each year!!!
9 years later... But still no effective treatment. I't the first time I see this documentary. I'm a chronic cluster head. No medication has been effective... Always the same with every treatment and type of medication I've had: at first it works, but after a few weeks the attacks return. There's no medication left to try. Cluster has taken everything from me: social life, my chances for a career and worst of all.. My wish to become a mother. So I'm always thankful when people try to raise awareness. Every clusterhead should do that, because the government and pharma industry refuse to support and fund research, just because there aren't enough cluster patients to make profit, so they won't put any money into research. Al the medication prescribed to cluster heads, is actually developed to treat other conditions. Anti depressiva, anti-psychotics, pills and injections to treat migraines.... Not 1 leaflet mentioned clusterheadache. Wishing all my fellow Cluster heads lots of courage 💜
I am a cluster headache survivor. At 23 years old my life was destroyed. I tried everything. After 3 months having 6-7 per day, lasting 2-3 hours at a time. A Chiropractor found my problem. 3 visits later they were gone. I am now a Chiropractor. The cause is whiplash syndrome, which stretches the spinal cord and compresses the brainstem. It is curable. If you or anyone you know is experiencing this I will help find you the best doctor in your area.
It is so horrible to see people having so much pain...i'm so sorry for those people having cluster headache. I really can't imagine the pain. God bless you all !
Thanks for the reply and for the comment on the stats used in the film. I'll definatly take your advice on them into account. ;) Me and a team of mine are taking our experiences from this film and putting our efforts into producing a year-long version of it for our final year at University, hopefully making it a richer and more powerful experience with more accesable information.
I honestly don't understand the very existence of this thing. It works as a natural condition, but It neither seems to be a comprehensible natural side-effect of any human biological phenomenon, nor a necessary condition for the good functioning of the body. It looks like it's just there to cause unnecessary pain and suffering. I think nature itself sometimes commit some mistakes.
i had heard the term cluster headache a few times and really thought it was just a specific type of headache, quite severe.. but NOTHING like what i am witnessing. This is truely a terrifying thing and my best wishes goes out to all the folks experiancing this. Lets hope for a more effective medical treatment !
I have been suffering for over 25 years with them. I can have a month of attacks and then have them subside for 1 year or two only to return. I typically get them in the summer time and usually an attack lasts 45-90 minutes. The analogy to the brain freeze as described in this video is EXACTLY how it feels to me. I feel for all my fellow sufferers. WE need more attention to our condition and get the help we need. Stay strong.
In fact: most cluster HA sufferers when we get together and chat about a recent headache, we use the kip scale.. which is a pain scale that CH sufferes use among themselves to describe pain levels.. because the pain level BEGINS at 10 and goes up from there, on the 1-10 smiley face scale at the hospital. I would rather saw my arm off with a rusty blade. I hope that gives you some perspective on the pain issue phocjame.
to see thiese suffering people makes me so sad. for all cluster headache sufferers: I wish you all the best and muh power to handle with this extreme situation.
First time I've heard it described the way I describe my clusters... like a super-intense, ice cream headache (but hot, not cold) that doesn't stop. For those that really have them, and don't know where to turn, ask your doctor about SSRIs for preventative use. I stumbled upon the (seeming) effectiveness of this during my last episode, and have most recently been prescribed Elavil by my new doctor for my current bout.
This just showed up in my UA-cam recommended list. As a 15 year suffer, I literally feel your step-father’s pain. I hope he has found some relief through botox or steroid+anesthesia shots. When I can get them, they do help me a great deal. I have also found LSA (cousin to LSD) to offer very temporary relief. Having a support system (family, friends, medical personnel, and other CH suffers) is really great. My girlfriend at the time when my CH’s started couldn’t handle it. She made the situation worse. Anyway...wishing the best for your step-father and your family!
This shit has been happening to me since I was a kid. It's always behind the eyes, and always unbearable. They lasted for hours at a time. I always try to take something and sleep them off. Light, sound, and smell are too much to deal with when it happens. It's so bad that as a child, I thought that this was what a headache was -this is what everyone was complaining about. When I got regular headaches it was nothing, and didn't even bother me. The only thing that works even the slightest bit is running the spot under hot water. At least for me it provides moments of temporary relief and helps me get to the point of sleeping it off. I'm sure that varies for everyone, but best of luck to the rest of you who found this because it happens to you too. Let me know if you have something that works for you.
Pg. 256 its simple enough, capsacian extract is what makes hot peppers hot, you coat your finger with it, and rub it around the inside of your nose, on the side that your headaches occur, now granted the first few times you do it, it is gonna hurt like someone shoved a gallon drum of napalm up yer nose and lit a match, we're talking about something several times hotter than pepper spray. But the theory is that when you do this, the nerve that causes your cluster headaches, which also runs down to the pain receptors in your nose, will send all of the chemical it contains, that gives your brain the ability to register and recognize pain, to your nose, in such massive quantities, that the next time you have a cluster, the nerve will literally, not have any pain registering chemical left to send to your brain, because it hasn't been able to replace it yet, and the pain will go unnoticed by your senses, like a dropped call on a phone line. Ive only heard of this being done in a test group after someone decided it would be a cool idea to see what happens to your nose if you snort pure capsacian extract, and apparently the result was an exponentially reduced pain reception each successive time the cap was put up the nose, until eventually, there was no pain at all. I have absolutely no idea what the long term effects might be, though if i had to guess id say a loss of smell, and maybe breathing issues if you have a sensitive nose, I wouldn't recommend it for asthmatics either, and if yer gonna try it, Id also recommend having someone else with you, in case you have a bad reaction to the capsacian, keep in mind, capsacian is pure heat, this is what makes all spicy food spicy, in its purest most concentrated form, it doesn't get any hotter than this. If you inhale it, it will be like breathing fire into your lungs, it will burn and sting your skin to the touch, if you touch your eyes, or anywhere near your eyes, you will tear up, and it will be agonizingly painful. Read into it carefully before trying it, have a look at this article Best of luck bja.oxfordjournals.org/content/90/6/812.full
Wow thank you so much for taking the time to type all that out. Wearing out the nerve that tells your brain that you have a cluster headache. I'll read up of that.
My husband suffers for several years from Clusters.I feel with you,it is so hard to see the person you love suffer.Oxygen is recommended to use,but it doesn't help much for my husband.He is using right now Sumatriptan and once in a while the strongest painkillers you can get(but he try's to avoid them).He has to take the medicine right by the first sign of a attack.it is awfully hard for us to live with it and to except it..Stay strong,he needs you!
I have been suffering CH for around 6 years now and this is something I pray someday will have a cure. Every year, there has to be one month or so, that the 'beast that resides in my head' terrifies me. My heart goes out to everyone who suffers from this never ending knightmare. I can just hope maybe, someone, somewhere, will find a cure for this.
Oh men i feel whit you... Pain is my constant Fear. Every Moment there is a cruel feelin of knowing every minute i can get a attack. I do life whit Cluster since 10 jears. I am happy about every moment whitout pain. sometimes i think, i learnd to valure te life more... But then the Pain comes and i think i creep miserably... Then i would be Death..
The pain comes from an inflamed nerve in the nerve bundle behind the eye. Medical science dose't know what causes this inflammation. That is the mystery. After i learned this it made sense to me to try something other then a pain killer like an anti inflammatory like Benadryl and it worked very well for me.
Aloe vera and turmeric are also anti-inflammatories. You can add the gel inside of aloe leaves to drinks or smoothies and you can buy turmeric capsules and take two a day. Thank you for sharing that information, kevin. :)
Pinocho Gonzalez Okay, now try to imagine going into a deep sleep... only to be awakened to someone drilling through your temple and using a red hot poker on your eye for about 45 minutes. Or better yet, have a brain freeze, amplify it by 50x, and stretch it out for about an hour. Only then can you begin to get an idea of what kind of hell this is...
well, Mack, if this is part of your life.. I certainly tip my hat to you and all that go through this. That certainly sounds like a living Hell ..my prayers and thoughts to yous...
I first heard about cluster headaches while watching a documentary on LSD, I decided to research the condition and after a couple of days of watching clips like these, and reading articles and blogs and stuff, I realized how awful it is. I read that women who suffer from cluster headaches, and have given birth say that (even though it's a very different pain) childbirth doesn't even come close to the pain you suffer when having an episode. I really sympathize with sufferers.
I suffer really severe pain with ibs and sometimes feel suicidal, but this sounds so much worse, I really feel for all you people who suffer with this terrible condition. How you manage to cope with it, I can't begin to imagine.
@ArsenalFC1981 I am glad they are in remission. I hope the pattern stays that way for you. I started out episodic for several years, and since 2003 I have been chronic (no more than 2-weeks remission) and the only break I get is when I take prednisone. Not all HAs are that bad, of the 3 or 4 I get per day, ONE of them is usually a biggie.. others are aborted within 3-5 minutes with O2. Once a month (roughly) I will have the "Saw off limb" type of HA. Thanks for sharing! Enjoy your break!
I never knew this doc existed, I also didn't know for a LONG time what was happening to me. I thought it was a normal Migraine, I then thought it was toothache problems. Finally found out a few years ago it was this. This is exactly how I can react when they are at their worst. Even so I'm lucky that they only affect me for about a month long and only every year ish or two give or take. The pain is unbearable though recently learned it can be treated sometimes for some people with medication meant for high blood pressure strangely enough, which is what worked in my case. I can only say this stuff breaks my heart cause I know all too well this pain and can't imagine having to live with it all the time.
I've been having this horrible affliction for almost 15-16 years now and my parents and wife thinks it's all on my head, sometimes I feel like killing myself because of the horrible agonizing pain & I feel like the people around me dont understand, they tell me to just get a job like it will fix it. I always end up quitting because I never know when I'm going to get them. Its hard keeping a job not knowing when they come on, sometimes they come and go. I'll be fine for one month, right when I think it's getting better it gets worse. I've had cluster headaches last for months on end, taking every single prescription drug from various neurologists and nothing seems to work. I'm so depressed idk what to do anymore but commit suicide but I cant because I truly believe God will cure me one day, but when will that day be Idk. I have kids and a wife but I'm useless to them. I'm living in a mini hell and its driving me crazy. Please pray for me that it'll get better. The only thing that has helped a little, & trust me as a Cluster Headache sufferer a little is better than nothing is CBD. I hope you people who are going through the same thing can maybe give CBD a try
@thekid0275 ...omg. I am a 36 yr female chronic cluster headache sufferer. I completely feel for you. Mine came on around the age of 4 yr old. No doctor took me seriously until my senior year in high school where I got the diagnosis of migraine. I had that diagnosis up until about 3 years ago when I went a new doctor, and one of his questions was, "Have you ever banged your head against the wall during your attack?" I knew I'd found a dr to help me at least...
I had one of these last night and I used to get them regularly when I was around 10 years old. Cluster headaches are a very real and very insidious attack; when Mike said there are really no words to describe the pain, I she'd a tear. There really aren't.
Hi Daniel Great documentary, it really is a beast inside. I have been hit practically every year for the last 30 years or so. All these painfull experiences inspired me to write a song about it, which I have recorded with my rockband. In the song I would like to use some vocal samples from Mike. That is, if I can have your / Mike's permission for that.
I feel with you,my husband has it now the sixth time,since 2003.There are support groups,Even if this are strangers,it is sometimes could to talk to someone who understands.Stay strong!
I'm so thankful I haven;t had one of these in about 5 months. Apparently you can never grow out of them but the time between episodes can get longer as you get older. Now i'm scared, feels like I'm waiting on the next one to hit.
I've been suffering from cluster headaches for 20 years now. They feel like someone is slowly drilling a hole in your and then back it out constantly for 45 minutes with a hot drill bit.
@ArsenalFC1981 I have been practicing Ashtanga Yoga and I agree it is helpful. Do you do meditative Yoga or more for strength or flexibility? I have been practicing Isha yoga, but the relaxed state sometimes will give me a headache.. wierd. So correct! You learn to cope in new ways with each cycle.. I think it is sureal that many CH sufferers use the same exact techniques and approaches for comfort.. I would love to know what type of Yoga works best for you.
My husband suffers from Cluster headaches for about 10 years now. The longest time period was the first time(4 month),because the doctors didn't know what it was..We have to learn to deal with it.I have to add one thing.If the pain by my husband is on the high point (not always) ,it goes to his brain and he starts seeing things what aren't there and shouts at people who aren't there.The attack take in between 15 minutes and 2 hours.Who ever suffers from it,I hope you have friends on your side.
Just watched this... been suffering for 35 years, never met anyone that has heard of them. I was in my twenties when I started having them, and I am still never prepared for when the beast wants a fight. Usually starts at about 4:00 in the morning, lasts for about 3 hours until I am just so tired from the battle that I pass out. Am now in my 4th week of ghost headaches, with a few stronger ones throughout. My thoughts are with everyone who suffers, I truly know our pain!!
I'm 33and I have had these since I was 25. Thru lots of trail and error I have found that if you put ice directly on the eye (whichever side it occurs on) it helps reduce the pain drastically. If you ice the eye as soon as you feel the onset of the cluster you can sometimes stop it all together. But even tho it reduces the pain the eye still swells shut and waters along with the nose running but the pain is drastically reduced. And also standing up and leaning over also helps. I cannot sit or lay down when I have these clusters. Mine occurred 3-10 times a week for 20 minutes to an hour about every 3-5 weeks mostly awaking from my sleep with them about 75%of the time. The ice is my go to remedy cause no pain killer works also alcohol will bring one on instantly regardless if your in your cluster period or not . Hope this helps someone "God bless"
i used to suffer from clusters,while i was in the u s coast guard,it took a west indian doctor to fix me right.i was lacking hot peppers in my diet.so far so good.pass it on to mike.
dont you hate it when this decease/illness is referred to as a headache out of ignorance to its severity. to class it as a mere headache is to describe the titanic as a canoe and the pacific ocean as a pool of water. . when you go through what we go through those hours,days,weeks,months or if your fortunate years of remission are priceless. i hope everyone is ok and dealing with it the best way they can .
I know for a fact what a CH fictim feels...it's the worst of the worst and I feel with the guy in this video at the beginning and end. Myself I have them 1 time every two year....all knot together in one week. The only stuff that helps me is Sumatriptan... I wish you guys the very best...my respect to Dreditor to get some awarness on this.
Is there a similar type of headache to this? Sometimes I get a very bad headache on one side of my head around the temple/eye area and it hurts badly for several minutes and it's not a migraine and it's a throbbing sharp pain. I just try and curl into a ball if I can in the dark until the worst of it's over. It usually doesn't last long but it's horrible. It also seems they come in bouts. I won't get one for awhile but then I'll get several with a period. They seem to come along with stress to
Nice to see more and more CH clips on UA-cam. It can only make people more aware. Mike I use 16(5mg)tabs of prednisone with a 240mg tab of verapmil fror 5 days gradually tapering down the prednisone & stopping and keep taking the verapmil for 30 days. good luck mate from Ottawa, ON CANADA
"it doesn't scare me, scare is probably the wrong word. It does drive me to despair." Well stated, though tragically so. It reflects my own experience that began 39 yrs ago. To Mike, I urge you to keep the faith in your wellness. In 39 yrs much has been found and my belief is that research is growing. You are fortunate to have a doc that cared. Read as much as you can. Lots of links. Read about prophylaxis and abortive regimens. Must fight this on both fronts. Be proactive. Best wishes!
I am so sorry. My father died when I was 22. I know the silent pain. Please read my comment about B12 in the clusterheads documentary in case you ever get them. I don't know if you are a Christian, today, or not, I wasn't when my dad died, but it lead me to God. It took me years to figure out that Christ's death was actually an apology for all the suffering we do here in this fallen world. Different than the message preached today. God is so sorry that we all suffer, that He suffered, too...
I've had fairly frequent migraines for the last 5-6 years, although they seem to have stopped now, this seems so much worse and i feel so sorry for anyone that gets them
For all cluster headache sufferers:
Bless you.
Bless your souls.
I cannot begin to imagine the pain you feel, but by the numerous descriptions of the sheer pain I've read, I believe I have an inkling of understanding.
You are among heroes of legend, for me, at least.
You fight through Heaven and hell just to survive these attacks, and I wish I could help every one of you.
Bless you all.
Rain Arashi magic mushrooms!!!!!!
Thank you
@@annacatagnus4819 Be specific, or don't speak at all.
@@mrbank1560 Any experience on the topic?
Its painful 😭😭😭
Been there. Done it. Got the T-Shirt. My heart goes out to this poor fellow. For those of you thinking he's just a wuss with a low pain threshold, think again. Cluster headaches are completely different from the tension headaches most of us get from time to time. If you've never had one, you simply cannot comprehend what it is like. I once dislocated my collar-bone, and that hurt; on another occasion my I broke my thumb when it got twisted back, and that really hurt; I've had third-degree burns all down one leg, and that really, really hurt. But these things pale into insignificance compared to a cluster headache. There is simply nothing like it.
As a cluster sufferer, watching this breaks my heart. And thank GOD it was made. EVERYONE needs to see this They need to see what we go through.
I've had these since age 21. I'm 36 now. And this is exactly how I suffer. Only my mom and a few friends have witnessed me breakdown. I don't want people to think I'm crazy so I usually suffer alone 😣
Same here man. The guy in the beginning was doing exactly what I do rock back and forth and eventually start crying like a baby. I'm in the process of getting some things to grow my own shrooms cause no other medicine has worked.
im sorry man thats a horrible thing to live with. some ppl on here say micro dosing mushrooms gives months of relief but i dont know for sure.
@@Flip4910 I had them for seven years non stop in my mid twenties. I discovered by chance that beer was my trigger and haven't had them for about 18 years while avoiding all types of alcohol. ( Crown Largers were the worst beer, maybe it's a preservative they use??? )And now I have had another episode for the last three weeks at the age of 50, so I'm a little confused on why they have returned. This guy describes them to the letter, the most painful thing I have ever experienced, and now they have returned. Today is my first day without one for three weeks, maybe I'll go into emission again. I find that sometimes rubbing my head vigorously and pacing up and down a hall way sort makes time fly by a little quicker. Good luck to you.
Suffered more than 10 years. I don’t know how many times i hide in the corner and cried. No body understands how painful this is. Sometimes, I want to chop my head off and end my life, but I have to stay alive and take care of my family.
I know how it feels 😭😭😭😭
Thank you all. I've had Clusters for 30 years and CCH for the last 3.5 years. It helps when people like you show up and speak so candidly about them.
The worst pain I ever experienced in my life was when I had a tooth infection that infected my jaw, I was literally mad with pain to the point I took pliers to pull out the tooth and actually damaged part of my jaw, crushed it, and I heard cluster headaches are WORSE pain than that! I can't imagine!
I just had a Cluster Headache, and I'm tearing up watching that beginning.. I know exactly how he feels, the pain is indescribable, like someone took a burning tongs and tried to pull out your eye. It only lasted for 15 min, but FUCK it hurts!!
I'm currently going through a remission over 6 months, but my guard is up because Autumn usually triggers the monster. I've suffered for nearly 30 years now - I have long breaks that last for years, which makes me fortunate. I always anticipate the beast returning though; I feel a short shadowing period in my right eye, then it hits suddenly and completely shuts me down, then happens again, again, again, again, again, again, and again... I honestly hope all of you find a period of peace like I'm in now. Cluster headaches have put me into the hospital, sedated, and on suicide watch a few times.
This was really hard for me to watch, it is the first time I have seen this happen to someone else. I have been episodic with these most of my life, and I wasn't properly diagnosed until recently. There have been many, many nights that I have been Mike, smashing ice packs against my temple, left eye and a spot on the left top of my head a few inches back from the hairline and rocking back and forth in complete agony. They have been picking up in frequency and intensity as I've gotten older, and quite honestly, the prospect of it getting even worse is frightening. There are no painkillers that help. For me, there is only Sumatriptan, and even it isn't guaranteed to work every time or even fast enough to help me before the attack peaks.
That these are called 'headaches' is a tremendous injustice. I wouldn't wish the hell I go through on anybody.
I found out by mistake. Clove cigarettes work almost as good as the injection pen for me.and I have clusters for over 20 years.and I agree.i wouldn't wish these on anyone.
I rarely post anything in this digital world. But I came across this, and it was like watching myself have one of these things and then explain what they feel like. Im 44 and had my first one when I was 12 years old. Watching Mike go through one in the begining brought tears to my eyes, because I do the same things when I get one.......I beg it to please stop!!!!! When people ask what they feel like, I have explained it the same way for over 32 years now. Its like an ice cream headache, except 1000 times worse, that never seems to end.... Ive never been suicidal in my life, I love life. But when I used to get 3 of these fucking things a day, I almost put a gun in my mouth. They are that bad. I too, want someone around when Im having them. Not to be held or consoled....just to be there in case this is the one I cant take anymore. I get migraines also, but I can handle those no problem. Anyone suffering from these, and continue living life and taking each episode in stride are ROCKSTARS in my book. The strongest people on the planet!!!!! I honestly wish everyone in the world could experience just one.....that way, there would be more research, more funding, more understanding, and more awareness for such a life altering condition to have. Sorry I wrote so much, I just wanted Mike and everyone else know that you are not alone.
FYI That gentleman is Anthony Amabile who very bravely allowed his suffering to be put into this video about the stepdad Mike of the man who made the film. Two different sufferers whose bravery hopefully will open a door to educating people about cluster headaches. I often think if some mega celebrity suffered from these perhaps he/she could do a telethon on TV whereby education of the public and subsequent donations to research might happen. Blessings to all U who suffer
everyone in the world should really get a taste of it even, 6 times a single. my boss can't even understand me and thinks i am having hangovers
@@gamingwithgolden_rasha1317 you too? I wish i could let my boss experience just one for 2minutes!
they suck so bad. me and my 14 year old son both have them. its tough watching your child go through this
jesus! im a sufferer too... diagnosed 5 years ago. this really is emotional to watch.
This brought tears to my eyes. I am so sorry to everyone who goes through this every single day of their lives. Much love and sympathy to you all. Stay strong.
Only found out about these recently and from what I've seen, I can't even begin to imagine what cluster sufferers go through, you must have such a will to persevere that I respect you without a shred of doubt. I've seen this illness described as "the most painful experience a human can ever go through". That is simply incredible how you can deal with that on a daily basis and not contemplate or attempt suicide.
As a police officer here in Norway I would never write a ticket for people with cluster headache taking drugs. If I was forced to, I would pay the ticket myself and leave the guy alone forever. What a horrible, horrible condition!
💚💚
I just saw a comment from a dutch guy who suffered from cluster headaches for years ..he went to a hospital over here in Holland where he had a nerve in his sinus burned through , he never suffered from it again . this hospital is called the St Franciscus hospital in Roosenvelt .
ive been getting Cluster Headaches for 32 years and im grateful for the awareness that is spreading... watching this video ... o the end... dont you just love when they subside... every time thats what i look forward to... blessings to us all ~
This is fantastic , thank you for making this. My partner is a sufferer, and no-one understands :(
I would just like to say thank you for producing this and for your compassion.
I have suffered from this horrible condition for 20 years. The ignorance of the general public,and also most doctors(believe it or not), has always been the most frustrating aspect of living with it for me. Hopefully some people in the medical profession might see this to give them an inkling of an idea as to what it is REALLY like.
Nobody who doesn't suffer from them, or witnessed firsthand an attack, where a strong, full grown man is suddenly like this gentleman here will ever get it. I unfortunately do. 2:23 am. That's my time
4:30 am is mine, it's the most unbearable pain I've ever experienced, I had my first one when I was 15 and my parents thought I was dying the first time I had one.
Jess. I was in my mid twenties when they started. I was working 12 hours a day, living in my own. I kept it to myself, which was not easy. It was the worst thing I ever went thru, but didn't want my family to worry, and I couldn't afford to lose time off work. I went to the hospital on my off hours, took long lunches for cat-scans, mri's and other appt's that I couldn't schedule for off hours. It wasn't until my 3rd cluster, which come every three years, that I finally told my family about it. The dr's had no idea for so long. Just wanted to medicate me, nonstop, to mask the problem, not diagnose or cure it. They thought I had a brain tumor for a while. The MRI said no. Thank god. So for 9 years I was silent, because I thought I was weak, or nobody would realize it's not a headache, as the first people I tried to explain them to. Oh I get headaches too, blah, blah , blah. Then I found out about clusters. And then a dr that immediately diagnosed them as such.
What treatment are you getting if you don't mind me asking?
I've tried quite a few over the years. None really work in my opinion. Nothing can stop them. But I take verapamil twice a day, lorazepam twice a day, and nortriptaline at the onset of an attack. This is only after a cycle has started, as once it ends I'm good for 3 years. Oxygen seems to work best, with a cold, wet washcloth to rub over right side of head continually from front to back. The sumatriptan didn't do anything. And another one I had that you place on tongue and it dissolves worked great, but about 20 mins later it hit even harder. Anytime you need more info or someone who knows, find me here, google+, or fb.
Thank you so much, I'll have to talk to my doctor about some of these meds, (I haven't even heard of some) I appreciate it so much :)
Thank you for making this. I've had episodic clusters for about 15 years. There aren't words for what this does to a person.
Thanks for going to the effort to make this video... I understand what Mike goes through and i hope he is well :) You have inspired me to make a video myself about my attacks and the effects it has on my life... You often find your self in so much relief after a headaches that you try and move on and easily forget the million worries, ideas & thoughts etc you have running through your head during an attack. All the best Daniel
Thanks for this. Being a sufferer myself it's made even more difficult by the fact that barely anyone understands what it's like, this film helps people to get a glimpse of the reality of the disease.
Since this video was made, I've managed to narrow down my triggers. If I get too hot too quickly, then that will trigger a headache, as does high pressure weather systems. There is nothing I can do to prevent the attacks, but at least I can minimise the chances. I'm in an episode now, the worst one coming at around 3am. I can't remember either my last uninterrupted night's sleep, or a night when I've got to sleep before 5am, but that, I'm afraid, is the nature of the beast.
I can. I'm fortunate that my attacks mostly come at night but I always carry an injection kit just in case. I live with them, and don't let them limit me to what I can do.
Hey Mike, glad to see this condition isn't preventing you from living your life. As someone who doesn't live with this condition, I will never complain about my problems again. Pain free wishes. Alex
Mike Powell
Mine very similar but cluster of episodes every couple of years very strange
Hi,
I had to cry seeing this video. I suffer cluster headache for about 21 years now. For the last 3 years the beast had left me be, now he is back again. I hope that your video can help people to understand where we have to go true.
Mike, let us try to stay strong together, knowing we are not alone!
Roel, The Netherlands
thanks for the awesome Documentary. Iam a chronic suffer....5.5 years...Not one single day off.....I have a video as well.
Again thanks and Blessings
I have been diagnosed with CCH. Had it for a year and a half now. Thank you for making this video, it's so real, it's hard for me to explain it to people, it's hard to tell them it's not just a headache. Again, thank you.
I've suffered from cluster headaches for 14 years, it's severely affected my life and I've never been able to find anything to even remotely ease the pain when I'm having an attack
Pablo Cong
To Anthony Amabile ~ Bless you and loads of love that you may find some relief some day ~ I had a friend who had clusters. It absolutely tore my heart out to see him suffer as does this footage of such agony ~ You are a very brave man to share this online so people have a clue what you and stepdad Mike and others endure with this terrible condition. More research MUST BE DONE to help all of you. Blessings 2U all
Thanks for sharing these kind of videos. It helps to get people educated about this demon and helps relatives to share with others, what they witness. I wish all Cluster Headache patients strength and a loving partner and friends, that they don't feel alone and isolated!
My sister suffers from clusters and although I don't suffer from these I can say that I have been brought to tears watching her during her episodes. You can't help them in any way and you feel helpless. My heart goes out to anyone who suffers from these!
Thanks for making the documentary. I had no idea the pain was so severe.
I've heard that cluster headaches are the worst pain known to man. Topping childbirth and a femur fracture. My heart goes out to anyone who suffers from these.
I had them back in 2010 I have no doubt this is true. It can't be understood without experience.
I have cluster since 15 years and I wish all cluster patients and a lot of strength and everything good that it soon ceases to greet from Austria
I am a 63 year old woman.When I was in my 30s and early 40s I had these often...screaming with pain that was totally untreatable with meds...the best was one that almost knocked me out but I was still in severe pain...just semi conscious so it was a tiny bit more tolerable. I think hormones have a play in them, stress and allergies. I quit milk and dairy and have not had ONE headache since...UNLESS some thing I eat has a smidge of one of those in it unbeknownst to me. hope things get figured out to help those that suffer...they are pure hell.
Thanks Daniel, Mike and Tony... Thank you for raising awareness of Cluster Headaches!
Cluster headaches are a terrible condition indeed. I am sorry for your stepfather and pray he finds relief, he'll, I pray that we all do. I hate that people are unaware of how crippling these headaches truly are and compare them to normal headaches. Thank you for this video.
Hello Mike. Unfortunately I fully understand what you are going through. I think it's very brave to tell your story on you tube. My last episode ended in July just to start again by the end of September. Right now I'm in the worst cluster I've ever experienced. How I wish somebody would find a cure for this horrible condition. I wish you and all the fellow sufferers the best.
I have these for 8 years. The pain is something I never felt. Has brought me to tears many times.
i have been having clusters for the past 6 years. yesterday i had the worst one ever and had to go to the er. i live in fear waiting for the next cluster to hit me. i am tired to live in this kind of pain. i am going to try magnesium,vitamin k2, vitamin a,fish oil,calcium citrate,vitamin d3 since it seems that some ppl had a positive effect on it. good luck .
1.5 grams of psilocybin mushrooms and you'll be cluster free for a month
@@prestonmoore1234 some of us can't do that due to work. I could get called to work and need to piss clean at a moments notice
After two years of searching, my doctors found that my seizures were caused by heavy metal poisoning & parasites (really hard to diagnose, & had to get it tested continuously for those two years). After being treated, not only did my seizures lessened, but my headaches are also soooo much better & tolerable now. I pray Mike & all others have the same success I did in riding themselves of this pain...
Extremely painfull is still a very understatement of this condition.after suffering myself for 5yrs before only recently being diagnosed I can truly say to all my fellow sufferers,I feel your pain! I'm know on sumatriptan injections twice a day,and am soon too have a high air flow gas system installed in my home.so I'm now in a well better place than I have been for the last several years,although I still get caught out frequently by excruciating attacks!!on the flip side,living with such pain has changed my perception of life,I know see my own life very clearly,and appreciate life tenfold!!As crazy as it may sound,I know the horrific pain that I endure has opened up my so called "third eye".I can see clearly threw the haze now,in all aspects of life!!As the saying goes "every cloud has a silver lining".good luck to all you cluster sufferers!The future is bright,and the treatments available are excelling each year!!!
9 years later... But still no effective treatment. I't the first time I see this documentary. I'm a chronic cluster head. No medication has been effective...
Always the same with every treatment and type of medication I've had: at first it works, but after a few weeks the attacks return. There's no medication left to try.
Cluster has taken everything from me: social life, my chances for a career and worst of all.. My wish to become a mother.
So I'm always thankful when people try to raise awareness. Every clusterhead should do that, because the government and pharma industry refuse to support and fund research, just because there aren't enough cluster patients to make profit, so they won't put any money into research. Al the medication prescribed to cluster heads, is actually developed to treat other conditions. Anti depressiva, anti-psychotics, pills and injections to treat migraines.... Not 1 leaflet mentioned clusterheadache.
Wishing all my fellow Cluster heads lots of courage 💜
I am a cluster headache survivor. At 23 years old my life was destroyed. I tried everything. After 3 months having 6-7 per day, lasting 2-3 hours at a time. A Chiropractor found my problem. 3 visits later they were gone. I am now a Chiropractor. The cause is whiplash syndrome, which stretches the spinal cord and compresses the brainstem. It is curable. If you or anyone you know is experiencing this I will help find you the best doctor in your area.
You captured this all too perfectly. People who have never suffered or witness somebody suffering have no idea.
It is so horrible to see people having so much pain...i'm so sorry for those people having cluster headache. I really can't imagine the pain. God bless you all !
Thanks for the reply and for the comment on the stats used in the film. I'll definatly take your advice on them into account. ;)
Me and a team of mine are taking our experiences from this film and putting our efforts into producing a year-long version of it for our final year at University, hopefully making it a richer and more powerful experience with more accesable information.
Bless you man, you have done truly good work here, you have helped me explain my wrecked life to the people who know me.
thank you for making this short documentary, EXTREMELY interesting, and horrific
I honestly don't understand the very existence of this thing. It works as a natural condition, but It neither seems to be a comprehensible natural side-effect of any human biological phenomenon, nor a necessary condition for the good functioning of the body. It looks like it's just there to cause unnecessary pain and suffering. I think nature itself sometimes commit some mistakes.
Fellipe de Carvalho maybe we have to find a cure and that should be our mission
i had heard the term cluster headache a few times and really thought it was just a specific type of headache, quite severe.. but NOTHING like what i am witnessing. This is truely a terrifying thing and my best wishes goes out to all the folks experiancing this. Lets hope for a more effective medical treatment !
I have been suffering for over 25 years with them. I can have a month of attacks and then have them subside for 1 year or two only to return. I typically get them in the summer time and usually an attack lasts 45-90 minutes. The analogy to the brain freeze as described in this video is EXACTLY how it feels to me. I feel for all my fellow sufferers. WE need more attention to our condition and get the help we need. Stay strong.
I'm a chronic suffer too and i'm 18. I don't want to suffer this for another few decades.
In fact: most cluster HA sufferers when we get together and chat about a recent headache, we use the kip scale.. which is a pain scale that CH sufferes use among themselves to describe pain levels.. because the pain level BEGINS at 10 and goes up from there, on the 1-10 smiley face scale at the hospital. I would rather saw my arm off with a rusty blade. I hope that gives you some perspective on the pain issue phocjame.
I just took my Sumatriptan. Mine were getting up to 3 hours long. Seems like watching videos of others suffering seems to sooth me a bit.
to see thiese suffering people makes me so sad. for all cluster headache sufferers: I wish you all the best and muh power to handle with this extreme situation.
I have had them since I was 18. It's 25 years later, and I still have never met anyone else that has them.
Thank you for sharing Mike.
I got my first cluster in my 20th birthday. Mine were chronic, never got a break. They stopped 22 years later. Verapamil.
First time I've heard it described the way I describe my clusters... like a super-intense, ice cream headache (but hot, not cold) that doesn't stop.
For those that really have them, and don't know where to turn, ask your doctor about SSRIs for preventative use. I stumbled upon the (seeming) effectiveness of this during my last episode, and have most recently been prescribed Elavil by my new doctor for my current bout.
This just showed up in my UA-cam recommended list. As a 15 year suffer, I literally feel your step-father’s pain. I hope he has found some relief through botox or steroid+anesthesia shots. When I can get them, they do help me a great deal. I have also found LSA (cousin to LSD) to offer very temporary relief. Having a support system (family, friends, medical personnel, and other CH suffers) is really great. My girlfriend at the time when my CH’s started couldn’t handle it. She made the situation worse. Anyway...wishing the best for your step-father and your family!
I can relate so much. I don’t want to be touched but I don’t want to be left completely alone, either.
Pain free wishes to you. 💜
Thanks Geneva. Same to you.
I'd never heard of them till I stumbled across this. They look like your worst nightmare
They are.
This shit has been happening to me since I was a kid. It's always behind the eyes, and always unbearable. They lasted for hours at a time. I always try to take something and sleep them off. Light, sound, and smell are too much to deal with when it happens.
It's so bad that as a child, I thought that this was what a headache was -this is what everyone was complaining about. When I got regular headaches it was nothing, and didn't even bother me. The only thing that works even the slightest bit is running the spot under hot water. At least for me it provides moments of temporary relief and helps me get to the point of sleeping it off. I'm sure that varies for everyone, but best of luck to the rest of you who found this because it happens to you too. Let me know if you have something that works for you.
have you ever tried the capsacian method?
no I've never heard of it, but i would like to know more. i''l look it up right now
Pg. 256 its simple enough, capsacian extract is what makes hot peppers hot, you coat your finger with it, and rub it around the inside of your nose, on the side that your headaches occur, now granted the first few times you do it, it is gonna hurt like someone shoved a gallon drum of napalm up yer nose and lit a match, we're talking about something several times hotter than pepper spray.
But the theory is that when you do this, the nerve that causes your cluster headaches, which also runs down to the pain receptors in your nose, will send all of the chemical it contains, that gives your brain the ability to register and recognize pain, to your nose, in such massive quantities, that the next time you have a cluster, the nerve will literally, not have any pain registering chemical left to send to your brain, because it hasn't been able to replace it yet, and the pain will go unnoticed by your senses, like a dropped call on a phone line.
Ive only heard of this being done in a test group after someone decided it would be a cool idea to see what happens to your nose if you snort pure capsacian extract, and apparently the result was an exponentially reduced pain reception each successive time the cap was put up the nose, until eventually, there was no pain at all.
I have absolutely no idea what the long term effects might be, though if i had to guess id say a loss of smell, and maybe breathing issues if you have a sensitive nose, I wouldn't recommend it for asthmatics either, and if yer gonna try it, Id also recommend having someone else with you, in case you have a bad reaction to the capsacian, keep in mind, capsacian is pure heat, this is what makes all spicy food spicy, in its purest most concentrated form, it doesn't get any hotter than this.
If you inhale it, it will be like breathing fire into your lungs, it will burn and sting your skin to the touch, if you touch your eyes, or anywhere near your eyes, you will tear up, and it will be agonizingly painful.
Read into it carefully before trying it, have a look at this article
Best of luck
bja.oxfordjournals.org/content/90/6/812.full
Wow thank you so much for taking the time to type all that out. Wearing out the nerve that tells your brain that you have a cluster headache. I'll read up of that.
that sounds like migraine. I have the same symptoms. been suffering for 25 years now but I come and look at these vids to see how bad things could be
My husband suffers for several years from Clusters.I feel with you,it is so hard to see the person you love suffer.Oxygen is recommended to use,but it doesn't help much for my husband.He is using right now Sumatriptan and once in a while the strongest painkillers you can get(but he try's to avoid them).He has to take the medicine right by the first sign of a attack.it is awfully hard for us to live with it and to except it..Stay strong,he needs you!
I have been suffering CH for around 6 years now and this is something I pray someday will have a cure.
Every year, there has to be one month or so, that the 'beast that resides in my head' terrifies me. My heart goes out to everyone who suffers from this never ending knightmare.
I can just hope maybe, someone, somewhere, will find a cure for this.
Oh men i feel whit you...
Pain is my constant Fear. Every Moment there is a cruel feelin of knowing every minute i can get a attack.
I do life whit Cluster since 10 jears. I am happy about every moment whitout pain. sometimes i think, i learnd to valure te life more...
But then the Pain comes and i think i creep miserably...
Then i would be Death..
The pain comes from an inflamed nerve in the nerve bundle behind the eye. Medical science dose't know what causes this inflammation. That is the mystery. After i learned this it made sense to me to try something other then a pain killer like an anti inflammatory like Benadryl and it worked very well for me.
Aloe vera and turmeric are also anti-inflammatories. You can add the gel inside of aloe leaves to drinks or smoothies and you can buy turmeric capsules and take two a day. Thank you for sharing that information, kevin. :)
SO YOUR SLEEPY AND GROGGY ALL THE TIME ..I USE BENEDRYL TO SLEEP IT LITERALLY KNOCKS ME OUT...
Pinocho Gonzalez Okay, now try to imagine going into a deep sleep... only to be awakened to someone drilling through your temple and using a red hot poker on your eye for about 45 minutes. Or better yet, have a brain freeze, amplify it by 50x, and stretch it out for about an hour. Only then can you begin to get an idea of what kind of hell this is...
well, Mack, if this is part of your life.. I certainly tip my hat to you and all that go through this. That certainly sounds like a living Hell ..my prayers and thoughts to yous...
I first heard about cluster headaches while watching a documentary on LSD, I decided to research the condition and after a couple of days of watching clips like these, and reading articles and blogs and stuff, I realized how awful it is. I read that women who suffer from cluster headaches, and have given birth say that (even though it's a very different pain) childbirth doesn't even come close to the pain you suffer when having an episode. I really sympathize with sufferers.
God bless you Mike from a fellow survivor of 35 years of these wretched things
what kind of god allows this kind of pain to a fellow human. he is not there.
I suffer really severe pain with ibs and sometimes feel suicidal, but this sounds so much worse, I really feel for all you people who suffer with this terrible condition. How you manage to cope with it, I can't begin to imagine.
@ArsenalFC1981 I am glad they are in remission. I hope the pattern stays that way for you. I started out episodic for several years, and since 2003 I have been chronic (no more than 2-weeks remission) and the only break I get is when I take prednisone. Not all HAs are that bad, of the 3 or 4 I get per day, ONE of them is usually a biggie.. others are aborted within 3-5 minutes with O2. Once a month (roughly) I will have the "Saw off limb" type of HA. Thanks for sharing! Enjoy your break!
I never knew this doc existed, I also didn't know for a LONG time what was happening to me. I thought it was a normal Migraine, I then thought it was toothache problems. Finally found out a few years ago it was this. This is exactly how I can react when they are at their worst. Even so I'm lucky that they only affect me for about a month long and only every year ish or two give or take. The pain is unbearable though recently learned it can be treated sometimes for some people with medication meant for high blood pressure strangely enough, which is what worked in my case. I can only say this stuff breaks my heart cause I know all too well this pain and can't imagine having to live with it all the time.
I've been having this horrible affliction for almost 15-16 years now and my parents and wife thinks it's all on my head, sometimes I feel like killing myself because of the horrible agonizing pain & I feel like the people around me dont understand, they tell me to just get a job like it will fix it. I always end up quitting because I never know when I'm going to get them. Its hard keeping a job not knowing when they come on, sometimes they come and go. I'll be fine for one month, right when I think it's getting better it gets worse. I've had cluster headaches last for months on end, taking every single prescription drug from various neurologists and nothing seems to work. I'm so depressed idk what to do anymore but commit suicide but I cant because I truly believe God will cure me one day, but when will that day be Idk. I have kids and a wife but I'm useless to them. I'm living in a mini hell and its driving me crazy. Please pray for me that it'll get better. The only thing that has helped a little, & trust me as a Cluster Headache sufferer a little is better than nothing is CBD. I hope you people who are going through the same thing can maybe give CBD a try
@thekid0275 ...omg. I am a 36 yr female chronic cluster headache sufferer. I completely feel for you. Mine came on around the age of 4 yr old. No doctor took me seriously until my senior year in high school where I got the diagnosis of migraine. I had that diagnosis up until about 3 years ago when I went a new doctor, and one of his questions was, "Have you ever banged your head against the wall during your attack?" I knew I'd found a dr to help me at least...
Thank you for making this video. You're not alone. PFW.
I had one of these last night and I used to get them regularly when I was around 10 years old. Cluster headaches are a very real and very insidious attack; when Mike said there are really no words to describe the pain, I she'd a tear. There really aren't.
Hi Daniel
Great documentary, it really is a beast inside. I have been hit practically every year for the last 30 years or so. All these painfull experiences inspired me to write a song about it, which I have recorded with my rockband. In the song I would like to use some vocal samples from Mike. That is, if I can have your / Mike's permission for that.
Hi Jan. You are more than welcome to use any samples of my voice you want. All I ask is to hear the finished product.
Or have a look at our website: steppingstone-rock.nl
Thanks for sharing
Very good film, thank you for sharing.
I feel with you,my husband has it now the sixth time,since 2003.There are support groups,Even if this are strangers,it is sometimes could to talk to someone who understands.Stay strong!
I'm so thankful I haven;t had one of these in about 5 months. Apparently you can never grow out of them but the time between episodes can get longer as you get older. Now i'm scared, feels like I'm waiting on the next one to hit.
I've been suffering from cluster headaches for 20 years now. They feel like someone is slowly drilling a hole in your and then back it out constantly for 45 minutes with a hot drill bit.
@ArsenalFC1981 I have been practicing Ashtanga Yoga and I agree it is helpful. Do you do meditative Yoga or more for strength or flexibility? I have been practicing Isha yoga, but the relaxed state sometimes will give me a headache.. wierd. So correct! You learn to cope in new ways with each cycle.. I think it is sureal that many CH sufferers use the same exact techniques and approaches for comfort.. I would love to know what type of Yoga works best for you.
My husband suffers from Cluster headaches for about 10 years now.
The longest time period was the first time(4 month),because the doctors didn't know what it was..We have to learn to deal with it.I have to add one thing.If the pain by my husband is on the high point (not always) ,it goes to his brain and he starts seeing things what aren't there and shouts at people who aren't there.The attack take in between 15 minutes and 2 hours.Who ever suffers from it,I hope you have friends on your side.
Just watched this... been suffering for 35 years, never met anyone that has heard of them. I was in my twenties when I started having them, and I am still never prepared for when the beast wants a fight. Usually starts at about 4:00 in the morning, lasts for about 3 hours until I am just so tired from the battle that I pass out. Am now in my 4th week of ghost headaches, with a few stronger ones throughout.
My thoughts are with everyone who suffers, I truly know our pain!!
I'm 33and I have had these since I was 25. Thru lots of trail and error I have found that if you put ice directly on the eye (whichever side it occurs on) it helps reduce the pain drastically. If you ice the eye as soon as you feel the onset of the cluster you can sometimes stop it all together. But even tho it reduces the pain the eye still swells shut and waters along with the nose running but the pain is drastically reduced. And also standing up and leaning over also helps. I cannot sit or lay down when I have these clusters. Mine occurred 3-10 times a week for 20 minutes to an hour about every 3-5 weeks mostly awaking from my sleep with them about 75%of the time. The ice is my go to remedy cause no pain killer works also alcohol will bring one on instantly regardless if your in your cluster period or not . Hope this helps someone "God bless"
Similar - try an ice cold energy drink, 250ml can
If there was ever a form of hell visible in this era, people who experience Cluster headaches are the ones who's been through it.
i used to suffer from clusters,while i was in the u s coast guard,it took a west indian doctor to fix me right.i was lacking hot peppers in my diet.so far so good.pass it on to mike.
dont you hate it when this decease/illness is referred to as a headache out of ignorance to its severity.
to class it as a mere headache is to describe the titanic as a canoe and the pacific ocean as a pool of water. .
when you go through what we go through those hours,days,weeks,months or if your fortunate years of remission are priceless.
i hope everyone is ok and dealing with it the best way they can .
I suffer horribly with excruciating ibs pain, but this sounds infinitely worse. My heart goes out to all cluster headache sufferers.
I know for a fact what a CH fictim feels...it's the worst of the worst and I feel with the guy in this video at the beginning and end.
Myself I have them 1 time every two year....all knot together in one week. The only stuff that helps me is Sumatriptan...
I wish you guys the very best...my respect to Dreditor to get some awarness on this.
Is there a similar type of headache to this? Sometimes I get a very bad headache on one side of my head around the temple/eye area and it hurts badly for several minutes and it's not a migraine and it's a throbbing sharp pain. I just try and curl into a ball if I can in the dark until the worst of it's over. It usually doesn't last long but it's horrible. It also seems they come in bouts. I won't get one for awhile but then I'll get several with a period. They seem to come along with stress to
My heartfelt wishes of comfort to all sufferers
Nice to see more and more CH clips on UA-cam. It can only make people more aware. Mike I use 16(5mg)tabs of prednisone with a 240mg tab of verapmil fror 5 days gradually tapering down the prednisone & stopping and keep taking the verapmil for 30 days. good luck mate from Ottawa, ON CANADA
I suffer with this horrible thing I have suffered for over 20 years now and sometimes I feel like ending it all
"it doesn't scare me, scare is probably the wrong word. It does drive me to despair."
Well stated, though tragically so. It reflects my own experience that began 39 yrs ago. To Mike, I urge you to keep the faith in your wellness. In 39 yrs much has been found and my belief is that research is growing. You are fortunate to have a doc that cared. Read as much as you can. Lots of links. Read about prophylaxis and abortive regimens. Must fight this on both fronts. Be proactive. Best wishes!
I am so sorry. My father died when I was 22. I know the silent pain. Please read my comment about B12 in the clusterheads documentary in case you ever get them. I don't know if you are a Christian, today, or not, I wasn't when my dad died, but it lead me to God. It took me years to figure out that Christ's death was actually an apology for all the suffering we do here in this fallen world. Different than the message preached today. God is so sorry that we all suffer, that He suffered, too...
I've had fairly frequent migraines for the last 5-6 years, although they seem to have stopped now, this seems so much worse and i feel so sorry for anyone that gets them
can they cauterize the nerve or something so you never have the pain again?
I have not had a cluster headache since 2009 and all of the sudden I had one today. Here we go again. Does anybody know of an effectice treatment?