Hello friend, I watched your video & know oh too well about the CH's. I suffered for 20 years with the debilitating headaches, but have been cluster free now for 8 years. During my 20 yrs. of suffering on & off, I found a natural remedy that knocked the headaches out instantly, before they could even manifest into a full blown cluster. With the grace of God they are gone for good & I couldn’t be happier! Possibly it can help you too. I made a video that explains. Wishing you the very best. Andy
Yup. That describes it to a T. I was obviously misdiagnosed a couple times. They said I had sinusitus. I can go 6 months at a time with nothing then (I think with the weather change) i get it for a couple weeks. Sometimes I have 1 attack a day or it could be a dozen.Just recently I passed out in my bedroom from the pain. Woke up on the floor. I didn't know what happened until I felt the end effects of the attack as I got up.I've been attack free for a week and hopefully wont get one for a while.
@AtLastTheCatsBack Thank you for posting this. Now I know, without any doubt, that I am not alone. Hopefully this will lead to some kind of treatment or lifestyle change that will keep these goddamn things away.
hi their my name is jacob I will be posting free video on you tube soon a reprieve from your pain not a cure but a difinate releif for most .cluster sufferas
@pmyshel did you get CH while pregnant? If so how did you deal? Could you take medication? It's so scary to think I couldn't be able to medicate this pain. I would commit suicide.
Death is the only way out. the neuro stimulator my body rejected it and it turned into an infection mess and was just recently removed. mine are chronic 9 months 3 to 9 hrs a day everyday for 9 months. life is not worth this kid of torture. I have hung on all these years for my wife and children, morphine or phnembutol works some but not enough. when another attack does accure, I wont stick around to live through it
@itsallamindgame i lived with clusters for 6 months, usually 3 a day. Worse ones were at night after 2 am. I thought death many times in that first bout. NO one would get me, or understand where or what I was going through. morphine, maxeran, gravol and o2 were the only edge cutters for me. I would hallucinate, I lived in Darkness. They said it was Iritis, Epi scleritis, scleritis
@itsallamindgame I am a woman. AND YES, it is worse than childbirth. There is nothing I can compare it to. I tried meditation, I have tried accupuncture, I have taken so much drugs that nothing helped the way I NEEDED it to.
@pmhysell I have heard about that, but I have never heard it from a woman herself... I have suffered from CH since i was 14.. I am turning 30 soon.. Only recently, I found out that there is a "Hortons syndrome" (CH) club here in Denmark.. One of the persons in that club mentioned, that a doctor here in DK used a new method.. He inserts a sort of "freezing needles" (?) in the back of the patients neck, and freezes some certain nerves.. The person I talked to has never had an attack since.. :-D
cocaine in a solution with water get a swab and place it the nostril of the side that is affected with the headache, it will numb the nerve inside your sinuses, then stick your head in the freezer or get some ice and put it on your head. remember to use 1 gram per ounce of water, and just do it when you are in pain cuz it wont prevent them, and be careful not to get hooked, once the bout is gone get rid of it.
Dear Sir! Thenak you for posting this description of an annoyment that I share with you since the agew of 18 (I am now 46)! I share your humility as to the chronic cases, but I have been blessed with a treatment it's called "Imigran" and the agent active is "Sumatriptane". This is extremely expensive, but I'm blessed with a system where medications are partly paid for. As I am currently in one of my periods, I'd like to share this. Better, could ypu mail me to more extensively bla bla?
I just started Flax seed oil, Prostate formula, GNC, Magnesium, instaflex cause i was having knee pain it been 3 days and yestrday i had headache in back of head on left side it comes and goes but very sharp shooting pain for just few sec. Does anyone know if vitamins can cause that?
Hi, I suffered from CH since i was 16 years old. In the beginning years it was terrible but later I got to use Emigran injections that helped me a lot.
Due to a severe depression I started to use Venlafaxine and since than my CH have gone. I read that it is a side effect of the Venlafaxine so there must be something in it to controll the CH.
Hey im a chronic to SCH (suizide cluster headache) !!! its a paine in the ass and yes it is embarrising rolling over the floor beatin you self bloody just so you dont feel the paine in your head/eye anymore. is like someone put a bottle of glue into you brain and you just wanna dig it out. my worst enemy i wouldnt want him to suffer this paine. thx for the good vid, and you are right after its gone, you more think of using your life time right than rather wisiting a doctor who tells you you nuts
I wish I had some kind of magical words. Ceases to amaze me how different we can be in our response to treatments.Most people do well with oxygen as a front line treatment with great success. Whiffing oxygen exacerbates the HA for me because of the change in temp. Go figure.
Good luck to you and your family. You've been blessed with a case that even I can't begin to fathom. Just enjoy the pain-free moments.
Still dealing with this. Had 2 attacks overnight. The 5:30 am 'wake-up call" was a nightmare !! TG it only lasted for about 20 minutes (with an injection of DHE), but it seemed like an eternity !! Chronic still with very little to help prevent attacks !! Life is NOT fair at all ! I often wonder what I must have done to deserve such horrific torture sessions !! WTH ?? Wishing this nightmare would end ... I'm tired :-\
@MrClusters2009 Ain't life great? I spent years and years trying to figure what I did to deserve the daily torture sessions.
After pussy footing around for years and years I finally went to the Mayo clinic in Scottsdale. The neurologist wrote me an Rx for prednisone...50mg per day for 5 days! I'm hear to tell you that prednisone is nothing to mess around with and its side effects are awful. BUT, and I mean BUT, after 3 days the headaches would stop.
@TheTemest Steroids in high doses will stop my attacks too, but only for a couple of days ast most. I've used them so much that it gave me a bone disease called AS Vascular Necrosis, which means bone death. Both shoulders, both hips, both knees, both ankles too. I'm in the hospital trying to catch a break now, but still had 5 attacks over the past 24 hours. .... tired.
For those of you who get these: see a neurologist immediately. I get them about every 18 months and each time there's a new helpful drug. I'm currently on 540 mg of verapamil and have 5mg nasal ZOMIG to abort a headache. They are expensive but worth their weight in gold. Demand them from your doctor! Prednasone works great too. No reason to suffer. Just got done with oxygen also, it's free and natural and can abort a headache with no pain. No reason to suffer or feel shame!
BRAIN TUMOR. Sorry that made me laugh. I thought I had one too. Been suffering CH for about 9 years now, since I was in 13. I feel your pain. About 6 weeks every year, roughly around August. Pain in the morning and in the middle of the night.
I heard it again the other day. My girlfriends exboyfriend putting me down, trying to win her back .... he said he has CLUSTER HEADACHES too and all he does is take an aspirin and go on with his day and that I must be a big whimp !! WTF ?? GRRR !! MAKES ME WANT TO GO SHOVE A KNIFE IN HIS EYE TO SHOW HIM A LIL BIT OF PAIN !!
They robbed me of a full and happy life until this march 25th, I had surgery and had a periphial nuero stimulator put in. it really works well. I had been on everything from demoral to oxycontine to morhine including the oxygen,beta blockers you name it but this techno miracle really does work. visit my chanell for more info.GB and have a pain free day
@itsallamindgame I was the first person in the USA to have a 'Bi-lateral Occipital Nerve Stimulator' trial implant in March 2004 at MHNI, but it did not help stop or prevent the attacks and was removed after only 7 days. Now I'm told they should've left it in longer (at least 90 days) to see if it would've had better results. Ironically, they won't do another on me since I had one already and it failed.
I have found that during a cluster red wine will almost always bring on a headache if not straight away then I will wake in the middle o the night screaming. These are the worst for me incidently, when they wake me up. Pain is doubled for some reason. Only relief I can find is running freezing cold water over areas in pain such as above my eye and left jaw. This definately helps a little and let's face it any relief no matter how small is good during these bastard things
What I meant is that I only have a cluster every once in a while. Meaning that I will have them for about 2 or 3 weeks at a time(sometimes I'm lucky and only get them a few days) and then I wouldn't have them for a few months then they come back. Sorry if I caused any confusion and I hope you and those who have these things going on for years at a time get some relief.
wow, I know EXACTLY how you feel. I hate having these and I wouldn't even wish thins pain onto any of my enemies. The problem is every time I go to the doctors, they tell me that I'm overexxagerating because I'm too young to tell the difference between a cluster headache and a migraine. Psh, but what do they know. They don't suffer.
You explained it the only way it should be spread over the internet.....I thank you for your work for this video....I'm also a mild patient.....Im getting then every one year or two years.....and having them this week as I write you this message. Hope this will pass really fast.
.... My case is not severe at all, sometimes with an advil and 45 minutes of moaning, rolling around, walking around the house and thinking about a neurosurgery that removes this imaginary tumor and the episode is over and the funny thing is that i feel really good afterwards i mean like i just had some great sex or something.
My regards to all the people that do suffer from severe Cluster Headaches.
I thought i was going to die last night, i was hoping that this imaginary super tumor or something behind my left eye was going to blow. It was the worst i've ever had and it happens normally between 1 to 3 times a day sometimes none for like two or three weeks and then episode-free for 6 months to 1 1/2 years...........
For some of these people commenting: If you only get 1 every now and then, if they last 12 hrs, if all you can do is lay down and not move ... you DON'T have clusters. Be glad, not mad at me ! But, sorry for your pain and goodluck on finding your diagnosis and cure. PEACE PEOPLE !!
im almost 20 now and i have been getting headaches like this since the 7th grade. there are differences but this is the most accurate i can find of what i get. always on the left side of my head, i can feel the pain in my eye and side of my head right to the back of my head. they always come around late winter/spring time and are generally at the same time each day and last about an hour. the pain is great, it seems mild compared to most ive seen. do you think they could be cluster headaches?
@spike0391 I'm no expert, but that sounds very close to mine...could be clusters. Luckily I sorta 'outgrew' mine...I still get a very weak version of CH on rare and unpredictable occasions...and those now take days to go away...and remind of the horror of when I was getting the intense full-blown ones.
@AtLastTheCatsBack ya, when i first started getting them in jr high it was certain that i would get them daily (in the spring) between 2nd and 4th period, and they would always last around 45 min. there would be times i would go to the nurse before the headache even started just bc i knew it would. in more recent years they have started to pop up at random times, they shifted to late in the day rather than morning, its just odd and very frustrating and no painkillers work. thanks for responding
@AtLastTheCatsBack This is known to be the most painful condition any human can suffer known to medical science. Recent studies have proven the benefits of LSD to reduce or even abolish symptoms. Women have described it as more severe than giving childbirth. Moreover, I have personally seen patients in the clinic who attempt to convince doctors and nurses to kill them because the pain is too unbearable. You would know if you had a cluster headache!!!
@AtLastTheCatsBack i love the description even though it shouldn't be funny i was laughing cuz i know exactly how it feels since like 20 years ago and i'm only 27, im going through and episode right now and as much as it hurts having those headaches it hurts more the pain that my family goes through when they see me furious like a werewolf in transformation yelling at them to go away sticking my head in the freezer(it helps!) that's what hurts the most.
@spike0391 Have you ever been prescribed a drug called indomethicin? If not, you may want to try it. If it works then you DO NOT have cluster. Like ALTCB, after having clusters for 22 years, both episodic and chronic varieties, I no longer cycle in and only get one at rare moments. Been this way for 3 years now, but still fear the idea of the clusters returning. If I want to guarantee getting one, one beer is all it will take.
2:062:062:06...I am LAUGHING my ass off! Dude, I get 'em too...but it is SOOOO good to hear someone else quote a time to the minute. TRY TO EXPLAIN to other people how you can truly DREAD a time of day to the MINUTE! They look at your like you're FREAKING NUTS! "No...i can't see you then...i'll be wanting to chop of my head....can you schedule that meeting for later in the day?"
You OBVIOUSLY know what these mosters are. Sorry! I too am a sufferer, episodic for 12 yrs, chronic for 11 yrs now. The ONLY thing I disagree with is the comment you made that these "Are harmless". Sorry, I have to disagree. Why would they be dubbed "Suicide Headaches" if they truely are "Harmless" ? The thing with you is that you know yours are going to stop ... chronics don't feel that way and life seems to come to a stand still at times and depression and the feeling of being "DOOMED" sets in
@MrClusters2009 'Harmless' only the sense that Doctors can find no indication of pathology or 'brain damage' even with the most advanced MRI, which I've had...the 'collateral damage' you mention in your comment is immeasurable. I'm always annoyed when somebody casuals says 'Oh, it get those'...and has NO idea devastating these abominable headaches are.
@AtLastTheCatsBack I do understand what you mean, it's just that word "harmless" to me seems 'generalizing' or something. I'm not quite sure what I'm trying to say. I just want doctors to never think they're 'no big deal' because they're 'harmless'. It's the effects, emotions, & stress they cause that can really do damage. (Still not sure that came out right). Either way, I feel for you man. I DO know your pain! And I get annoyed to by "O, I get those' claims. You're not alone ! Goodluck - PEACE
i suffer from these i had my first last year it lasted about 2-3months then they stopped my doc thought it was migraine i went to hospital n they sent me home cuz i wasn't suffering at the time then 3months after they stopped they came bk i went bk to my gp n he said it might be cluster headaches prescribed me 40g verapamil n it help a lot but they didn't disappear completely so he prescribed me 140g slow release verapamil they worked for 4months but now they are bk!
Oxygen is best answer I have found. Verapamil alsi helps. Ready to try therapy to deal with the stress of them and the other stressful things in my life
I have only just realised that I have cluster headaches, had them for over 30 years didnt know what they were called until yesterday and have been looking at all the youtube vids on them and commenting on them. The ones I suffer are the chronic agony ones and I have nearly taken my life over them to stop the pain.
Now I know I am not alone as I thought I was the only sufferer, the Doc though I had migraine...I wish lol....migraine sufferers have the easy life.
I am 25 yrs old and I looked everywhere for the answer to my Horrendous pain. and you brought relief to me. it's exactly as described by you. and it is MORE PAINFUL than Childbirth. I know. I thought I was dying of a tumor and even wrote a will for who gets my belongings to the point that my family fought for some. I am not dying but when I get this it feels like it. 1 Vicodin does not relieve this...not 2 or 3 BUT 6 vicodin 500mg is what takes it away leaving a stinging pain on my right side.
I'm a cronic suffer of CH and I wouldn't wish it on my worst enemy. During an attack time stands still, its like being outside the pain, the whole concept is pain, every breath is pain, you're englufed with pain, you can't think, if the house was burning around you you couldn't save yourself, when the attack passes I really have no awareness of time...time really feels like it stood still....but lasted an eternity, anyone who wittnesses these attacks it really scares them. CH is evil
"I guess maybe I've got a brain tumour and I'm about to die." Yep, I've been through that diagnosis :) And then there's computer over-use, or maybe migraines, or sinus headaches (I have long-term sinusitis) or perhaps needing new glasses, or etc. etc.
Knowing what it is is half the battle. Well, it's all the battle, if the cures don't work for you. But it's a big deal to know you'll sit it out, and you'll be OK at the end of it, because of what it is. And because of what it isn't!
You're right! I'm one of the rare women that have had them since the age of 12 and I am damn near 40 and it is worse than childbirth! A method I decided to try yesterday, after suffering one of the worse attacks I've had, was downing as much water as I could stand. I never tried water before and was shocked that it actually worked. Finding a doctor that takes this seriously can be frustrating as hell and you want relief NOW, not when doctors can figure it out (if you can last that long).
@yuna36 I'm also on of those women.well girl actually...I've had migraines since I was little.hit my teens and they turned into full migraines then cluster headaches/migraines. I'm lad to see that there are other women out there who suffer from this. I do think I'm luck though since i rarely get a cluster headache and i can handle migraines much better than those.
@syxxfreakinstyx They are called "CLUSTERS" because they come in GROUPS. If you 'rarely' get a cluster, it's not a cluster. Don't be mad at me, be thankful that you're not having these monsters. I'm sure what you think are clusters are still very painful, but like I said, clusters come in groups. for weeks, months, and even years at a time ... not just every now and then. Be glad, not mad ! PEACE !
i have had chronic ones ch's 2003, i never knew until now there was people that feel the same way i do. i just read down the page and it's like i'm dreaming. i can't wait to exit this world to finally end the torture and torment.
for years i contemplated suicide. i didn't find any relief for 2 yrs until i was diagnosed with chronic CHs then I discovered imitrex, zomig, and oxygen therapy. Now my life is manageable; although, it's the most debilitating thing I've ever endured it has strengthed me for the better. My life has changed, but I would still do anything to get rid of the pain!!! God Bless all the CH sufferers out there.
great description, I had one today buy my mom refuses to believe that they are a real thing. She thinks I'm a drama queen. Today mine was so bad it made me nauseous and I almost puked out the car window. I got home, and had to cover my eyes, and could not move until the advil kicked in...I even took an anxiety medication meant as a sleep aid in hopes it would calm me down. 3 hours later I guess I had passed out from the meds, and the pain was gone. Very strange, but yes I do suffer from these.
@lambiam8 Please dont take this the wrong way but a whole bottle of advil cant take this pain away trust me i have tried 4 to 6 pills at a shot and still no help I have even gotten a morphine shot in the middle of the ch and still no relief. I even too xanax and still no help if an advil worked for you than you probably have migrains not cluster headaches
Hallo from cluster boy from Croatia !!! We are not alone !!! 8 fuc.ing years beeting !!! Now when everybody having seing this videos they realy need to belive how my pain is realy is
I am 32yo boy from Croatia and I have also cluster last 8 years . Thank you for this video very very much . In my situation things are the same like in yours .The most important thing is that everybody of us need to know that we are not alone !!!
You wake up one day with the worst headache of your life, nobody's heard of the disease, and you're stuck explaining that you have this headache for the rest of your life. Welcome to hell.
I'm one of the rare women with chronic CH and his account is pretty accurate. It sucks more than I can put into words, but on my worst days, I just keep telling myself "this isn't going to kill me." You find a way to make your life manageable.
@felineofavenueq34 Thank you for your post, It really helps! I too am a woman with headaches from hell! it sucks explaining, so I live a life of loneliness... in fear of being in public when, when it strikes. I get them quite a bit, so needless to say..my social life is non existent. I was promised Oxygen but insurance wont cover it! It really hurts me when I feel I'm not being productive! "You find a way to make your life manageable."
My friend, mine is back and I had one at 20:00 then 22:00 the 00:00 then 02:00 and the last one for today 04:00. I live from one to the other, it consumes my life I pray for death to come every second I have one. I feel for every person that gets them. All I can say is death fist ...............
@DragonSprt It´s just what makes this monster so evil... That only death seems to be the only way out... I have had a 3 year period without any attacks.. Then, last week, it came back for me.. Yesterday, the pain became so immense, that i passed out... Never tried that before.. My longest attack-period was 3 months and i must admit that i considered to shoot myself.. Can´t even imagine how it is for those who suffer every day.. My thoughts for you and every other CH victim.. Lassoe...
Well done video. Easy to comprehend (love the visual aids) explaining CH. I've been dancing with this beast since I was 20. I've been episodic throughout my life and thought that was difficult enough. Now, I've gone chronic since March 2008. Needless to say, my life has changed drastically. Although I do have the support of a loving family, often I feel I've been banished to an island of horror where it's just me and the beast. I REFUSE to give up! Strength and will. This video will educate.
I've delt with this monster for 28 years. You start panting when it gets bad right? Also notice in a bad episode your tempature rises right along with the pain In my case 101degrees. This is why I think you need to stay cool. DARK, QUIET, & COOL. As soon as I can I head to a hot long shower, you'll feel cooler when you get out. Once per 45 min. and cold ice packs on my head, Wet hair and loose clothes will make you as comfortable as possible. Peace to you all brothers & sisters....ptc..aurl
I've delt with this monster for 28 years. You start panting when it gets bad right? Also notice in a bad episode your tempature rises right along with the pain In my case 101degrees. This is why I think you need to stay cool. DARK, QUIET, & COOL. As soon as I can I head to a hot long shower, you'll feel cooler when you get out. Once per 45 min. and cold ice packs on my head, Wet hair and loose clothes will make you as comfortable as possible. Peace to you all brothers & sisters....ptc..aurl
@rlqcvdv Everyone gets a clusterheadache once a while. I am 23 and I get them at least every two months, but I do not make so much drama about it.
To everyone: man up. I mean, I can have a heavy clusterheadache every week and it can last for 90 straight, but I attend college, I go to cricket practice, I do my speeches for the SWP weekly.... I man up and just ignore my clusterheadache. That is the point really, if you act like it hurts, it will. Act like it won't, it won't.
@TheAnarcrusty Man up.!! MAN UP...!?!!!!!!!! You don´t know what the hell you are talking about.!! You are a lucky bastards only to suffer mild attacks, when you can talk like this. I am 28 years old, work as a bouncer, weighs over 200 pounds and i can stand a hell of a beating. Still, my girlfriend can wake up at night, finding me rolling around on the floor, banging my head in the wall, screaming and crying like a little girl, so don´t you talk down on CH and all the other people in here..!!!!
@lassoe Hi. Let me apologize to you and everyone here. I thought at first that Clusterheadache was another name for a tension headache, but someone educated me about it and I started reading up on it.
I now know that it must be an extremely excruciating neurological disorder, and that what I have is in no way a CH.
I feel really silly about my comment and my ignorance, and wish I could delete it.
I mean it man, I hope you can forgive me my stupidity.
@TheAnarcrusty At first, let me apologize to you for lettin´all my steam out on you... It wasn´t ok to do... But when you are used of being met with "it can´t be that bad" and "you are over-reacting", you become more and more intolerant to comments like that. And when you get fired because of your CH, your world just crashes down.. And no one understands you.. Everything is forgiven and forgotten mate :) But thank God for every day in your life, not having to fear "the beast".. Lassoe....
@TheAnarcrusty Its not a madder of manning up I have 4 kids, attend school and I am personally remodeling my house I still want to kill myself from the pain you obviously dont know the pain we feel do you think we act like we want this come on how dumb can you be. We really suffer from something we want to take our own lifes over we dont need some a**hole like you putting comments like you know what we go threw and you the big shot handles it with no problem I wish you did get ch
I'm a chronic and find the only solution in psychedelics. There are legal way's to take them: LSA from Hawaian Baby Woodrose seeds ( 5 seeds crushed in plain water for 2 hours and than drink it ) - Psilocybe ( you can order magic truffels online, just put them in yogurt and eat them ) Ayahuasca ( go to a meeting of the Santo Daime church ). To get out of the episode do it once a week and absolutely take no other medicins exept oxygen and lots of water. Than once a month to stay out of pain. QED!
I was diagnosed with suffering from cluster headaches officially 3 days ago.. after enduring these for years... I'm a 20 year old woman. How lucky huh? Nothing touches these... I don't get them chronically either but when I do have them I want to crack my head open and try to fix it.
High flow oxygen (at least 15 L/min) and sumatriptan (injectable or nasal) are reliable and effective abortives. This truly is among the most severe types of pain experienced by human beings. A patient in London unfortunatley gouged his eye out durring an attack with no discernable escalation in pain.
Just got over a cluster period about a month ago,and let me tell ya, this guy isn't joking. It is literally the most unimaginable pain you can experience.
There's a product called White Flower Analgesic Balm available in most health/herbal stores. Its used for arthritis relief (sometimes called "Chinese Bengay"), but inhaling this stuff at the outset of a headache can abort the pain!!! It worked for me some of the time, but its the only thing I've ever found to have worked. Hope this helps!
It's VERY hard for people to relate to 'cluster heads'. My wife suffers from migraines. When I began getting clusters, she said, "They only last an hour or so, how bad can they be? I have migraines that last days!"
I know her pain threshold - there was no way she was 'getting it'. I had the good fortune to go from episodic to chronic over a year ago, but last night was a first: three Kip 9-10's in a 6 hour period. To all that suffer worse than that on a regular basis, my deepest sympathies.
Think I am a sufferer like you,. I get my CH once a year sometime every two years and they last for about two weeks and then they´re gone, had this for about 15 yrs.. They come (mostly) at night time or after you drink alcohol. I am glad that I am not a cronic it must be a hell on earth...I know how painful this thing is.
Think I am a sufferer like you,. I get my CH once a year sometime every two years and they last for about two weeks and then they´re gone, had this for about 15 yrs.. They come (mostly) at night time or after you drink alcohol. I am glad that I am not a cronic it must be a hell on earth...I know how painful this thing is.
The main defining characteristic of these damn things is that they are LIKE DAMN CLOCKWORK. I get these damn things from Aug-to Oct (sometimes Nov.)..I suffer from these MONSTERS every damn night that hits LIKE CLOCKWORK (you can set your watch to it).
I feel for those of us that suffer from these. I swear I will scream if another nurse states that it is caused by alergies.
I feel for you , I started out getting them a few times a year, now its a few times a day as many as 4. started 15 years ago, if it wasnt for my family I wouldnt be here now am seeking treatment but nothing cured yet, I now get them daily every day of the year with very few days off from it, it has distroyed my life cause you wake up in fear of the next..I wont leave the house now.
dont try aspirine!! - only ibuprofen because its the only histamine blocking Painkiller without prescription if thats in your bathroom, but much better is to go to the doctor and get triptanes for real help, they have less sideeffects than aspirine what i have seen
Hi , i am suffering of cluster headache for 5 years now, i have not had the attack since a year and now a gain i am getting the same pain a gain, today i went to Walgreens and i asked the pharmacist a bout any new medication and she told me about what is called Sumeval Dosepro injection it is awseome medication you guys should try it the only problem is that it is so expensive i bought two refils for $647 which is 6 injections. i hope president Obama's plan gonna help us
oh man it is exactly the same year and half i had this pain and it is comming again to me now, and i am realy suffering . would you tell me what are you taking for this? please
@ALKARBALAE83 this is something you need to keep searching for, no known cure for CH's, keep trying, I hope you have better luck than I have. would like to share a site called Clusterbusters com site has tons of info on what you may need.
good video,im 52 CH for about 30 years,14 week cycles,6-10 45min blasters per day ,more intense near end of cycle.1 month to 1 year between cycles,ice cold washclothes placed on back of neck and another on temple and eye with pressure on both.along with oxygen at full till,prednisone tapers starting 60 mg,drink alot of water,if i fail to abort i can bring a level 10 pain down to about a 7 by STARRING DIRECTLY INTO A BRIGHT LIGHT do not blink and remain focused (artificial light not sunlight)
i just watched something on the history channel about LSD and the history of LSD..scientists finally after all these years got approval to start testing LSD on humans again..they just happened to discover that 4 out of 5 cluster headache sufferers reported that their headaches vanished after taking LSD..scientists are trying to work on making a non- hallucinogenic, legal form of LSD to sell in the marketplace for cluster headaches..very interesting stuff.
Your awesome man, This is the best description I have found on the internet so far.
"I honestly believe that experiencing the monumental pain of a Cluster headache has made me a stronger person: Anyone who can withstand this level of pain can endure anything."
I couldn't agree with you more man. i feel the exact same way, if i can withstand this excruciating pain there is nothing I can not handle as far as pain goes.
Thanks for sharing, I too am a sufferer. Seasonal and have been to the Kip level of 10. I am on the BOD of OUCH. Something I have been using is a natural health drink call Monavie made from the Acia Berry from the Amazon. It has helped trmendously.
i'm 45 ,been suffering since 22. episodic. had septum surgery in 2004. headaches stopped for a year and returned a year to the day of the surgery. went for allergy shots and took amitriptylene,, no pain for 5 years. headaches just came back. just got a new presription for the amitriptylene,it was filled 5 years ago to the day ! how weird.. i can time an hour by it. try allergy shots. they seemed to help me. my motto.." no pain ,no pain.
im just about the end of a 5 -6 week episode the beast starts about a hour after i go to sleep and sometimes 4 of 5 times a night once it was about 3 hours . but mostly about 15 min . i know just what you are going thru... try using a hot towel pressed against your eye socket it seems to go away faster ....
I am a woman with clusters... visits from the beast at 12:30am every night from last week of September through Thanksgiving every single year with an occassional spring cycle for the last 12 years. Made it through the fall 2009 without a cycle and thought I hit the jackpot... until 2 weeks ago when they started again. The comment about child birth is dead on. Would rather give birth to a child daily than deal with this pain and exhaustion. Great video and descriptions.
BTW - I am a woman who suffer from them. worse pain I have ever felt in my life and I have had a child!! I cry at the thought that my daughter might suffer from them later in life :(
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!!
Great video,just in to my;10th episode maybe? up around that number.From experience they stick with me for about 2 months and usually 2 or 3 at night and sometimes through the day...the shadow rarely goes away so i'm always on edge when in cycle.Some good comments on here,'specially Jonnymule,,,don't let the bastards win.Just in response the video, if they stopped after five days for me i'd be doing backflips up the street,and nope, a couple of asprin doesn't work,Once again, great video.PFD2all
Wow, you nailed it. My question is, why isn't there more public knowledge about this miserable condition? I'm going through a spell and I'm afraid to go to bed tonight. This is hell.
Thank you for making this video, it really spells out in simple, easy to understand terms exactly what a cluster headache is, and how they work. My thoughts are with you.
I'm episodic with two a day. 1:30 am and 6:30 am. Oddly, it seems during the winter months that I get the longer bouts (1-3 hours), while getting shorter ones during hot weather.
I go through 4 weeks of CH's followed by 4 weeks of remission. The pattern seems really odd to me, but I just have to live with it.
I've been in my room for a week now getting my ch can't find a doc to give me some kind of shot or something I feel like killing my self but I have kids can't do it sucks
Thanks for the video. I'm a 24f, and I get a mixture of migraines and cluster headaches. They both feel the same, but ch's are shorter and come on more quickly, while migraines last for days and come on gradually. It's hard to see the world the same way after a ch or migraine. I always found imitrex is an effective abortive and propranolol is an effective prophylactic.
Hi, just into my second attack. First one was seven moths ago. I was lucky enough that my doc knew what it was right away. I ve tried all the common reliefs like O2 and imigran but what realy works for me is prednison.
I take 60 Mg and reduce by 5 Mg every day.
I am not saying this will work for everyone and it won t work for the chronics amongst us but after consulting your doctor you might wanna give it a try.
yep they hurt like a bastard..and adjective does not come to me to explain how it hurts..O2 and vicodin has worked well for for me. I would NOT wish this on my worst enemy. I have had them for 22 years at a frequency of one to 2 a year lasting for 20 min to 4 hrs.I know when you come out the other end of the Clusters if your like me youu're emotionally and Physically "wiped-out"
u113902. The absolute best medicine is a subcutaneous injection called Imigran subject. It takes no longer than 10 minutes to work. In the UK, it's also the ONLY licenced drug for cluster headaches. The drawbacks are that it's quite expensive and you can only take 2 per 24 hours. It's a vaso deconstrictor which means it widens the veins and could be dangerous for people with heart conditions, etc.
This is in my experience of course. It's also worth noting that high flow oxygen with a non rebreather mask works within 15-30 minutes and is obviously much cheaper and easier to get a hold of than the Imigran injections.
In NYC. Cluster Head for four years now. Bad sufferer. Just out of the hospital for the fifth time now. I don't know how my partner lives with it sometimes and how he gets me to the hospital each time when they heat up that badly. Mine wound up after working at the Trade Center as a firefighter, there are alot of us suffering from headaches now after working there
I haven't had a bad one since I started using a heating pad when I first feel the signs. The heat must override the nerve impulses that cause them. Strange but true.
I am with you, this is my 3rd year diagnosed with the cluster, 5th year having them.
Hardest part isn't the damn pain- it's the fatigue. My work slides downhill, short tempered all the time and always dreading having a random cluster event in public when the peak of the cycle approaches.
i have been getting these since i was 16. i am female so they told me i had migraines. still to this day...24 yrs later i dont know what a migraine even feels like!!! it took yrs for me to figure out what they were...an article from someone overseas!!..i had to bring that to the docs and tell them stop putting me thru tests and trials and tons of different meds that did nothing but give me bad side effects. u r lucky. litium stopped mine for 2 yrs but now they r back, everyday + nite.good luck
Hi, I´m from Argentina, I suffer the Cluster Headaches since three years ago. No treatment results for me, no oxigen, no sumatriptan, no lithium, no punches in my head. The only thing that seems to work is acupuncture. The pain is lower than years before and the attaks stands still for just half and hour each time ( The first years I had 6 hours attacks each day) Try acupuncture, you have nothing to lose.
Thanks for the video. I found out today that I have cluster headaches and that they're not sinus headaches as I was taking antibiotics for a week b/c the doc prescribed them to me. I realize now that I've had cluster headaches for the past 6 years. I always thought that it was severe sinus. CHs are my morning wake up call as I get one around 9:00 am then at 2:30 pm and finally 1:00 am each day. I guess I'm part of the lucky few b/c I get them every other year for 1 1/2 months beginning in April.
sumatriptan works great 5 to 10 mins and am back to normal you can only have to shots in 24 hours which is not so good . oxygen also works well . when my headache start i am prescribed 60mgs of premisalone a day, this helps as but u cant be on it for long as it has severe side affects . i normaly take this for does for 1 week and then i have to be weaned off it which takes another 2 weeks . i also take 120mg of vatrapamil (i think thats how u spell it ) in the morning and 120mg at night .
I wonder if I have them , probably not the worst headaces ive had were for about a minute due to stress+dehydration+mental effort and felt like your brain is a muscle out of energy like your leg after a running effort or something.
this is great man, thanx. I have been having this already for 23 years. Can you imagine. During the day I can abort some attacks by drinking strong coffee and sigarettes right at the beginning of the attack. but sometimes not. You know how it feels so I don't explain it. I just keep crying with any sound. My attacks take mostly 3 hours when it comes at night but during the day 45 minutes. I am 33 and if doktors say that it can start at the age of 20. they are wrong in my case. daud.
I suppose...'real' luck probably would have included taking a pass on the whole CH experience...and my thoughts go out to all the CH martyrs who suffered so much more than I!
I believe they are hereditary. My grandmother had severe headaches since she was 8 yrs old. I was diagnosed with CH at 17 yrs old. It's the most intense pain I have ever felt. I do not wish them on anyone. This cluster started 6/23/09 and is still going. 2 times a night and now 1 during the day! I feel like I can't get relief. Thank God for Imitrex injections and Oxygen! Hopefully it will end soon. This is the first one in 2 yrs.
Don´t know why I came to look at this kind of thing this evening...I haven´t had an attack for nearly 2 years. I´m now 47. The attacks have become more infequent. This was avery sympathetic clip and I have just seen more sufferes for the first time and all their screems and pleedings to... all come flooding back. It´s Hell.... It made me cry just to recognise it...To all sufferers, hold on ! Mark.
Im a cronical sufferer of cluster headaches. Its great to see a video like this, cause i can see what others think about it. Nice job, really. I dont know anyone personally who have this kind of headache, so its nice to "talk" on videos about this with someone. thanks.
This is great. I think CH awareness is something beautiful. I had to present the information to my neurologists in order to get diagnosed. It is good to get the information out there. I think, the most difficult part of having CH is the anxiety of waiting for the pain to come day after day, and of course being rendered helpless for whatever time it lasts. I could take excruciating pain for a few hours a night, ya know? But the knowledge that it's going to come back tomorrow kills me!
A year or so, I was in such pain. I had blood from my nose and I was shaking from the pain, didn't sleep 2 weeks non-stop.... I wanted to kill myself.
It happened again for 2 weeks now I have constant headache, well sometime it isn't that bad but stabbing of the eye and around the eye is non-stop, I am used to it now... I have them nearly all the time but sometimes it gets so bad I just bury myself into pillow... hoping the harder I push, the less it stops.
i feel your pain man.. my pain never stops. i have long term chronic CH. ive had them for about four years now with my longest remission not even being a week. i give birth everyday man really though. mine come at about 2 also ironically. i dont know if its better or worse because its usually about 2 pm. i seldomly wake from them but it does happen. and when it does it is the worst at this point. probably because it comes out of a dead sleep. i have much knowledge i can offer, write me back bro
Is it possible to get one of these headaches just once? 4 years ago I got this pain behind my left eye and it was unbearable, the most pain I had ever felt, I had my hands on my head and I really wanted to die, if someone handed me a gun I would have shot myself there and then. I was rushed to hospital and they gave me an injection to numb the pain but it didn't work and they said there was nothing wrong with me. After learning about cluster headaches I'm worried the pain will come back.
hey cat happy new year my friend!and stay always pf :)
ingion1 2 days ago
Hello friend, I watched your video & know oh too well about the CH's. I suffered for 20 years with the debilitating headaches, but have been cluster free now for 8 years. During my 20 yrs. of suffering on & off, I found a natural remedy that knocked the headaches out instantly, before they could even manifest into a full blown cluster. With the grace of God they are gone for good & I couldn’t be happier! Possibly it can help you too. I made a video that explains. Wishing you the very best. Andy
AndyRCO 1 week ago
Yup. That describes it to a T. I was obviously misdiagnosed a couple times. They said I had sinusitus. I can go 6 months at a time with nothing then (I think with the weather change) i get it for a couple weeks. Sometimes I have 1 attack a day or it could be a dozen.Just recently I passed out in my bedroom from the pain. Woke up on the floor. I didn't know what happened until I felt the end effects of the attack as I got up.I've been attack free for a week and hopefully wont get one for a while.
Zimstube 1 week ago
@AtLastTheCatsBack Thank you for posting this. Now I know, without any doubt, that I am not alone. Hopefully this will lead to some kind of treatment or lifestyle change that will keep these goddamn things away.
dammit1388 4 weeks ago
im getting a suicide headache from watching all those pictures spin on the screen.
JoanBeatrington001 1 month ago
hi their my name is jacob I will be posting free video on you tube soon a reprieve from your pain not a cure but a difinate releif for most .cluster sufferas
friscoful 1 month ago
@pmyshel did you get CH while pregnant? If so how did you deal? Could you take medication? It's so scary to think I couldn't be able to medicate this pain. I would commit suicide.
lalotato 1 month ago
Death is the only way out. the neuro stimulator my body rejected it and it turned into an infection mess and was just recently removed. mine are chronic 9 months 3 to 9 hrs a day everyday for 9 months. life is not worth this kid of torture. I have hung on all these years for my wife and children, morphine or phnembutol works some but not enough. when another attack does accure, I wont stick around to live through it
itsallamindgame 2 months ago
@itsallamindgame i lived with clusters for 6 months, usually 3 a day. Worse ones were at night after 2 am. I thought death many times in that first bout. NO one would get me, or understand where or what I was going through. morphine, maxeran, gravol and o2 were the only edge cutters for me. I would hallucinate, I lived in Darkness. They said it was Iritis, Epi scleritis, scleritis
pmhysell 1 month ago
@itsallamindgame I am a woman. AND YES, it is worse than childbirth. There is nothing I can compare it to. I tried meditation, I have tried accupuncture, I have taken so much drugs that nothing helped the way I NEEDED it to.
pmhysell 1 month ago
@pmhysell I have heard about that, but I have never heard it from a woman herself... I have suffered from CH since i was 14.. I am turning 30 soon.. Only recently, I found out that there is a "Hortons syndrome" (CH) club here in Denmark.. One of the persons in that club mentioned, that a doctor here in DK used a new method.. He inserts a sort of "freezing needles" (?) in the back of the patients neck, and freezes some certain nerves.. The person I talked to has never had an attack since.. :-D
lassoe 2 weeks ago
magic mushrooms.
check clusterbusters
Aquar1uZ 2 months ago
cocaine in a solution with water get a swab and place it the nostril of the side that is affected with the headache, it will numb the nerve inside your sinuses, then stick your head in the freezer or get some ice and put it on your head. remember to use 1 gram per ounce of water, and just do it when you are in pain cuz it wont prevent them, and be careful not to get hooked, once the bout is gone get rid of it.
85hazen 3 months ago
I wish I could help. Alleviate the pain if not take it away ... I'm going to look into it.
jdmartz 3 months ago
Dear Sir! Thenak you for posting this description of an annoyment that I share with you since the agew of 18 (I am now 46)! I share your humility as to the chronic cases, but I have been blessed with a treatment it's called "Imigran" and the agent active is "Sumatriptane". This is extremely expensive, but I'm blessed with a system where medications are partly paid for. As I am currently in one of my periods, I'd like to share this. Better, could ypu mail me to more extensively bla bla?
systemspel 4 months ago
I just started Flax seed oil, Prostate formula, GNC, Magnesium, instaflex cause i was having knee pain it been 3 days and yestrday i had headache in back of head on left side it comes and goes but very sharp shooting pain for just few sec. Does anyone know if vitamins can cause that?
MrBazzzzinga 5 months ago
O2 therapy!! I've had them since I was 25, now 45, it's the only thing that works for me.
thruster37 5 months ago
Hi, I suffered from CH since i was 16 years old. In the beginning years it was terrible but later I got to use Emigran injections that helped me a lot.
Due to a severe depression I started to use Venlafaxine and since than my CH have gone. I read that it is a side effect of the Venlafaxine so there must be something in it to controll the CH.
puppetwizard 5 months ago
ur cute :D, what causes these headaches?
mymightyboosh 5 months ago
Hey im a chronic to SCH (suizide cluster headache) !!! its a paine in the ass and yes it is embarrising rolling over the floor beatin you self bloody just so you dont feel the paine in your head/eye anymore. is like someone put a bottle of glue into you brain and you just wanna dig it out. my worst enemy i wouldnt want him to suffer this paine. thx for the good vid, and you are right after its gone, you more think of using your life time right than rather wisiting a doctor who tells you you nuts
JustoneSec370 6 months ago
You got it exactly right. I couldn't have explained it better myself.
bracelet123 7 months ago
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777tbird 7 months ago
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777tbird 7 months ago
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777tbird 7 months ago
im 18 and i get these. i wake up at 4.30am on the dot screaming its horrible! i just hope one day it will go away forever!
angelichick1 7 months ago
I wish I had some kind of magical words. Ceases to amaze me how different we can be in our response to treatments.Most people do well with oxygen as a front line treatment with great success. Whiffing oxygen exacerbates the HA for me because of the change in temp. Go figure.
Good luck to you and your family. You've been blessed with a case that even I can't begin to fathom. Just enjoy the pain-free moments.
TheTemest 7 months ago
Search for "cluster headache remedy" on ebay. I got you covered. From a former sufferer
daniacea 8 months ago
Somebody please call 513-207-1218 if you get these I also get them and a dr can't help me if he doesn't get them also I just need remidieys
HiDefStarsDotCom 8 months ago
Still dealing with this. Had 2 attacks overnight. The 5:30 am 'wake-up call" was a nightmare !! TG it only lasted for about 20 minutes (with an injection of DHE), but it seemed like an eternity !! Chronic still with very little to help prevent attacks !! Life is NOT fair at all ! I often wonder what I must have done to deserve such horrific torture sessions !! WTH ?? Wishing this nightmare would end ... I'm tired :-\
MrClusters2009 9 months ago
@MrClusters2009 Ain't life great? I spent years and years trying to figure what I did to deserve the daily torture sessions.
After pussy footing around for years and years I finally went to the Mayo clinic in Scottsdale. The neurologist wrote me an Rx for prednisone...50mg per day for 5 days! I'm hear to tell you that prednisone is nothing to mess around with and its side effects are awful. BUT, and I mean BUT, after 3 days the headaches would stop.
TheTemest 9 months ago
@TheTemest Steroids in high doses will stop my attacks too, but only for a couple of days ast most. I've used them so much that it gave me a bone disease called AS Vascular Necrosis, which means bone death. Both shoulders, both hips, both knees, both ankles too. I'm in the hospital trying to catch a break now, but still had 5 attacks over the past 24 hours. .... tired.
MrClusters2009 7 months ago
For those of you who get these: see a neurologist immediately. I get them about every 18 months and each time there's a new helpful drug. I'm currently on 540 mg of verapamil and have 5mg nasal ZOMIG to abort a headache. They are expensive but worth their weight in gold. Demand them from your doctor! Prednasone works great too. No reason to suffer. Just got done with oxygen also, it's free and natural and can abort a headache with no pain. No reason to suffer or feel shame!
nrose 9 months ago
BRAIN TUMOR. Sorry that made me laugh. I thought I had one too. Been suffering CH for about 9 years now, since I was in 13. I feel your pain. About 6 weeks every year, roughly around August. Pain in the morning and in the middle of the night.
aquitaine007 9 months ago
I heard it again the other day. My girlfriends exboyfriend putting me down, trying to win her back .... he said he has CLUSTER HEADACHES too and all he does is take an aspirin and go on with his day and that I must be a big whimp !! WTF ?? GRRR !! MAKES ME WANT TO GO SHOVE A KNIFE IN HIS EYE TO SHOW HIM A LIL BIT OF PAIN !!
MrClusters2009 9 months ago
They robbed me of a full and happy life until this march 25th, I had surgery and had a periphial nuero stimulator put in. it really works well. I had been on everything from demoral to oxycontine to morhine including the oxygen,beta blockers you name it but this techno miracle really does work. visit my chanell for more info.GB and have a pain free day
itsallamindgame 9 months ago
@itsallamindgame I was the first person in the USA to have a 'Bi-lateral Occipital Nerve Stimulator' trial implant in March 2004 at MHNI, but it did not help stop or prevent the attacks and was removed after only 7 days. Now I'm told they should've left it in longer (at least 90 days) to see if it would've had better results. Ironically, they won't do another on me since I had one already and it failed.
MrClusters2009 9 months ago
you cant imagine it. you can only know it by experience. i get them too. your video is a few years old. have they recurred since you posted this?
apocketfulofdreams 10 months ago
I have found that during a cluster red wine will almost always bring on a headache if not straight away then I will wake in the middle o the night screaming. These are the worst for me incidently, when they wake me up. Pain is doubled for some reason. Only relief I can find is running freezing cold water over areas in pain such as above my eye and left jaw. This definately helps a little and let's face it any relief no matter how small is good during these bastard things
a1electrical1 10 months ago
What I meant is that I only have a cluster every once in a while. Meaning that I will have them for about 2 or 3 weeks at a time(sometimes I'm lucky and only get them a few days) and then I wouldn't have them for a few months then they come back. Sorry if I caused any confusion and I hope you and those who have these things going on for years at a time get some relief.
syxxfreakinstyx 10 months ago
wow, I know EXACTLY how you feel. I hate having these and I wouldn't even wish thins pain onto any of my enemies. The problem is every time I go to the doctors, they tell me that I'm overexxagerating because I'm too young to tell the difference between a cluster headache and a migraine. Psh, but what do they know. They don't suffer.
MsUNprEdiCtAblEChikk 10 months ago
You explained it the only way it should be spread over the internet.....I thank you for your work for this video....I'm also a mild patient.....Im getting then every one year or two years.....and having them this week as I write you this message. Hope this will pass really fast.
Demolitionben 10 months ago
.... My case is not severe at all, sometimes with an advil and 45 minutes of moaning, rolling around, walking around the house and thinking about a neurosurgery that removes this imaginary tumor and the episode is over and the funny thing is that i feel really good afterwards i mean like i just had some great sex or something.
My regards to all the people that do suffer from severe Cluster Headaches.
andresparra 10 months ago
I thought i was going to die last night, i was hoping that this imaginary super tumor or something behind my left eye was going to blow. It was the worst i've ever had and it happens normally between 1 to 3 times a day sometimes none for like two or three weeks and then episode-free for 6 months to 1 1/2 years...........
andresparra 10 months ago
For some of these people commenting: If you only get 1 every now and then, if they last 12 hrs, if all you can do is lay down and not move ... you DON'T have clusters. Be glad, not mad at me ! But, sorry for your pain and goodluck on finding your diagnosis and cure. PEACE PEOPLE !!
MrClusters2009 10 months ago
i've recently been getting little pain around my right eye and it only lasts like 30 seconds literally....what could it be???
pueb3488 11 months ago
im almost 20 now and i have been getting headaches like this since the 7th grade. there are differences but this is the most accurate i can find of what i get. always on the left side of my head, i can feel the pain in my eye and side of my head right to the back of my head. they always come around late winter/spring time and are generally at the same time each day and last about an hour. the pain is great, it seems mild compared to most ive seen. do you think they could be cluster headaches?
spike0391 11 months ago
@spike0391 I'm no expert, but that sounds very close to mine...could be clusters. Luckily I sorta 'outgrew' mine...I still get a very weak version of CH on rare and unpredictable occasions...and those now take days to go away...and remind of the horror of when I was getting the intense full-blown ones.
AtLastTheCatsBack 11 months ago
@AtLastTheCatsBack ya, when i first started getting them in jr high it was certain that i would get them daily (in the spring) between 2nd and 4th period, and they would always last around 45 min. there would be times i would go to the nurse before the headache even started just bc i knew it would. in more recent years they have started to pop up at random times, they shifted to late in the day rather than morning, its just odd and very frustrating and no painkillers work. thanks for responding
spike0391 11 months ago
@AtLastTheCatsBack This is known to be the most painful condition any human can suffer known to medical science. Recent studies have proven the benefits of LSD to reduce or even abolish symptoms. Women have described it as more severe than giving childbirth. Moreover, I have personally seen patients in the clinic who attempt to convince doctors and nurses to kill them because the pain is too unbearable. You would know if you had a cluster headache!!!
dratelectasis 8 months ago
@AtLastTheCatsBack i love the description even though it shouldn't be funny i was laughing cuz i know exactly how it feels since like 20 years ago and i'm only 27, im going through and episode right now and as much as it hurts having those headaches it hurts more the pain that my family goes through when they see me furious like a werewolf in transformation yelling at them to go away sticking my head in the freezer(it helps!) that's what hurts the most.
85hazen 3 months ago
@spike0391 Have you ever been prescribed a drug called indomethicin? If not, you may want to try it. If it works then you DO NOT have cluster. Like ALTCB, after having clusters for 22 years, both episodic and chronic varieties, I no longer cycle in and only get one at rare moments. Been this way for 3 years now, but still fear the idea of the clusters returning. If I want to guarantee getting one, one beer is all it will take.
TheTemest 9 months ago
2:06 2:06 2:06...I am LAUGHING my ass off! Dude, I get 'em too...but it is SOOOO good to hear someone else quote a time to the minute. TRY TO EXPLAIN to other people how you can truly DREAD a time of day to the MINUTE! They look at your like you're FREAKING NUTS! "No...i can't see you then...i'll be wanting to chop of my head....can you schedule that meeting for later in the day?"
outontheair 11 months ago
You OBVIOUSLY know what these mosters are. Sorry! I too am a sufferer, episodic for 12 yrs, chronic for 11 yrs now. The ONLY thing I disagree with is the comment you made that these "Are harmless". Sorry, I have to disagree. Why would they be dubbed "Suicide Headaches" if they truely are "Harmless" ? The thing with you is that you know yours are going to stop ... chronics don't feel that way and life seems to come to a stand still at times and depression and the feeling of being "DOOMED" sets in
MrClusters2009 11 months ago 3
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IstillOwnAvcr 11 months ago
@MrClusters2009 'Harmless' only the sense that Doctors can find no indication of pathology or 'brain damage' even with the most advanced MRI, which I've had...the 'collateral damage' you mention in your comment is immeasurable. I'm always annoyed when somebody casuals says 'Oh, it get those'...and has NO idea devastating these abominable headaches are.
AtLastTheCatsBack 11 months ago 3
@AtLastTheCatsBack I do understand what you mean, it's just that word "harmless" to me seems 'generalizing' or something. I'm not quite sure what I'm trying to say. I just want doctors to never think they're 'no big deal' because they're 'harmless'. It's the effects, emotions, & stress they cause that can really do damage. (Still not sure that came out right). Either way, I feel for you man. I DO know your pain! And I get annoyed to by "O, I get those' claims. You're not alone ! Goodluck - PEACE
MrClusters2009 10 months ago
i suffer from these i had my first last year it lasted about 2-3months then they stopped my doc thought it was migraine i went to hospital n they sent me home cuz i wasn't suffering at the time then 3months after they stopped they came bk i went bk to my gp n he said it might be cluster headaches prescribed me 40g verapamil n it help a lot but they didn't disappear completely so he prescribed me 140g slow release verapamil they worked for 4months but now they are bk!
pinkladielouise 1 year ago
im 24 years old from israel, im writing it after 40 minuts of pain and its the seccond atack in the last 10hours. the time now is 4:50 am.
i havent seen in anyone comments a word about Genetic disorde
my dad suffers it to since he was 20. we have no solution!!
this pain is Indescribable i hope well find a qure and that pepole will stop been so skeptical about this.
shlomiashkenazi202 1 year ago
Oxygen is best answer I have found. Verapamil alsi helps. Ready to try therapy to deal with the stress of them and the other stressful things in my life
alocalagent 1 year ago
I have only just realised that I have cluster headaches, had them for over 30 years didnt know what they were called until yesterday and have been looking at all the youtube vids on them and commenting on them. The ones I suffer are the chronic agony ones and I have nearly taken my life over them to stop the pain.
Now I know I am not alone as I thought I was the only sufferer, the Doc though I had migraine...I wish lol....migraine sufferers have the easy life.
depoty 1 year ago
I am 25 yrs old and I looked everywhere for the answer to my Horrendous pain. and you brought relief to me. it's exactly as described by you. and it is MORE PAINFUL than Childbirth. I know. I thought I was dying of a tumor and even wrote a will for who gets my belongings to the point that my family fought for some. I am not dying but when I get this it feels like it. 1 Vicodin does not relieve this...not 2 or 3 BUT 6 vicodin 500mg is what takes it away leaving a stinging pain on my right side.
TruegamerGirl 1 year ago
Did you have any trouble getting a doctor to believe how excruciating the pain is?
keliata 1 year ago
I'm a cronic suffer of CH and I wouldn't wish it on my worst enemy. During an attack time stands still, its like being outside the pain, the whole concept is pain, every breath is pain, you're englufed with pain, you can't think, if the house was burning around you you couldn't save yourself, when the attack passes I really have no awareness of time...time really feels like it stood still....but lasted an eternity, anyone who wittnesses these attacks it really scares them. CH is evil
tootsie1960 1 year ago
"I guess maybe I've got a brain tumour and I'm about to die." Yep, I've been through that diagnosis :) And then there's computer over-use, or maybe migraines, or sinus headaches (I have long-term sinusitis) or perhaps needing new glasses, or etc. etc.
Knowing what it is is half the battle. Well, it's all the battle, if the cures don't work for you. But it's a big deal to know you'll sit it out, and you'll be OK at the end of it, because of what it is. And because of what it isn't!
adecentusername 1 year ago
this guy looks a little like Alan Ball. But those headaches sound really bad.
toviewandcomment 1 year ago
You're right! I'm one of the rare women that have had them since the age of 12 and I am damn near 40 and it is worse than childbirth! A method I decided to try yesterday, after suffering one of the worse attacks I've had, was downing as much water as I could stand. I never tried water before and was shocked that it actually worked. Finding a doctor that takes this seriously can be frustrating as hell and you want relief NOW, not when doctors can figure it out (if you can last that long).
yuna36 1 year ago
@yuna36 I'm also on of those women.well girl actually...I've had migraines since I was little.hit my teens and they turned into full migraines then cluster headaches/migraines. I'm lad to see that there are other women out there who suffer from this. I do think I'm luck though since i rarely get a cluster headache and i can handle migraines much better than those.
syxxfreakinstyx 1 year ago
@syxxfreakinstyx They are called "CLUSTERS" because they come in GROUPS. If you 'rarely' get a cluster, it's not a cluster. Don't be mad at me, be thankful that you're not having these monsters. I'm sure what you think are clusters are still very painful, but like I said, clusters come in groups. for weeks, months, and even years at a time ... not just every now and then. Be glad, not mad ! PEACE !
MrClusters2009 10 months ago
i have had chronic ones ch's 2003, i never knew until now there was people that feel the same way i do. i just read down the page and it's like i'm dreaming. i can't wait to exit this world to finally end the torture and torment.
buster8769 1 year ago
for years i contemplated suicide. i didn't find any relief for 2 yrs until i was diagnosed with chronic CHs then I discovered imitrex, zomig, and oxygen therapy. Now my life is manageable; although, it's the most debilitating thing I've ever endured it has strengthed me for the better. My life has changed, but I would still do anything to get rid of the pain!!! God Bless all the CH sufferers out there.
buster8769 1 year ago
great description, I had one today buy my mom refuses to believe that they are a real thing. She thinks I'm a drama queen. Today mine was so bad it made me nauseous and I almost puked out the car window. I got home, and had to cover my eyes, and could not move until the advil kicked in...I even took an anxiety medication meant as a sleep aid in hopes it would calm me down. 3 hours later I guess I had passed out from the meds, and the pain was gone. Very strange, but yes I do suffer from these.
lambiam8 1 year ago
@lambiam8 Please dont take this the wrong way but a whole bottle of advil cant take this pain away trust me i have tried 4 to 6 pills at a shot and still no help I have even gotten a morphine shot in the middle of the ch and still no relief. I even too xanax and still no help if an advil worked for you than you probably have migrains not cluster headaches
smileychickify 9 months ago
Hallo from cluster boy from Croatia !!! We are not alone !!! 8 fuc.ing years beeting !!! Now when everybody having seing this videos they realy need to belive how my pain is realy is
tonizgcr 1 year ago
Hi !!!
I am 32yo boy from Croatia and I have also cluster last 8 years . Thank you for this video very very much . In my situation things are the same like in yours .The most important thing is that everybody of us need to know that we are not alone !!!
tonizgcr 1 year ago
You wake up one day with the worst headache of your life, nobody's heard of the disease, and you're stuck explaining that you have this headache for the rest of your life. Welcome to hell.
I'm one of the rare women with chronic CH and his account is pretty accurate. It sucks more than I can put into words, but on my worst days, I just keep telling myself "this isn't going to kill me." You find a way to make your life manageable.
felineofavenueq34 1 year ago
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@felineofavenueq34 Thank you for your post, It really helps! I too am a woman with headaches from hell! it sucks explaining, so I live a life of loneliness... in fear of being in public when, when it strikes. I get them quite a bit, so needless to say..my social life is non existent. I was promised Oxygen but insurance wont cover it! It really hurts me when I feel I'm not being productive! "You find a way to make your life manageable."
Sadly, That is so, true!
Diana2unify 2 months ago
How did you make the subtitless???!!
MrShneck 1 year ago
My friend, mine is back and I had one at 20:00 then 22:00 the 00:00 then 02:00 and the last one for today 04:00. I live from one to the other, it consumes my life I pray for death to come every second I have one. I feel for every person that gets them. All I can say is death fist ...............
DragonSprt 1 year ago
@DragonSprt It´s just what makes this monster so evil... That only death seems to be the only way out... I have had a 3 year period without any attacks.. Then, last week, it came back for me.. Yesterday, the pain became so immense, that i passed out... Never tried that before.. My longest attack-period was 3 months and i must admit that i considered to shoot myself.. Can´t even imagine how it is for those who suffer every day.. My thoughts for you and every other CH victim.. Lassoe...
lassoe 1 year ago
Well done video. Easy to comprehend (love the visual aids) explaining CH. I've been dancing with this beast since I was 20. I've been episodic throughout my life and thought that was difficult enough. Now, I've gone chronic since March 2008. Needless to say, my life has changed drastically. Although I do have the support of a loving family, often I feel I've been banished to an island of horror where it's just me and the beast. I REFUSE to give up! Strength and will. This video will educate.
bboutdoorsman 1 year ago
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I've delt with this monster for 28 years. You start panting when it gets bad right? Also notice in a bad episode your tempature rises right along with the pain In my case 101degrees. This is why I think you need to stay cool. DARK, QUIET, & COOL. As soon as I can I head to a hot long shower, you'll feel cooler when you get out. Once per 45 min. and cold ice packs on my head, Wet hair and loose clothes will make you as comfortable as possible. Peace to you all brothers & sisters....ptc..aurl
rlqcvdv 1 year ago
I've delt with this monster for 28 years. You start panting when it gets bad right? Also notice in a bad episode your tempature rises right along with the pain In my case 101degrees. This is why I think you need to stay cool. DARK, QUIET, & COOL. As soon as I can I head to a hot long shower, you'll feel cooler when you get out. Once per 45 min. and cold ice packs on my head, Wet hair and loose clothes will make you as comfortable as possible. Peace to you all brothers & sisters....ptc..aurl
rlqcvdv 1 year ago
@rlqcvdv Everyone gets a clusterheadache once a while. I am 23 and I get them at least every two months, but I do not make so much drama about it.
To everyone: man up. I mean, I can have a heavy clusterheadache every week and it can last for 90 straight, but I attend college, I go to cricket practice, I do my speeches for the SWP weekly.... I man up and just ignore my clusterheadache. That is the point really, if you act like it hurts, it will. Act like it won't, it won't.
TheAnarcrusty 1 year ago
@TheAnarcrusty Man up.!! MAN UP...!?!!!!!!!! You don´t know what the hell you are talking about.!! You are a lucky bastards only to suffer mild attacks, when you can talk like this. I am 28 years old, work as a bouncer, weighs over 200 pounds and i can stand a hell of a beating. Still, my girlfriend can wake up at night, finding me rolling around on the floor, banging my head in the wall, screaming and crying like a little girl, so don´t you talk down on CH and all the other people in here..!!!!
lassoe 1 year ago
@lassoe Hi. Let me apologize to you and everyone here. I thought at first that Clusterheadache was another name for a tension headache, but someone educated me about it and I started reading up on it.
I now know that it must be an extremely excruciating neurological disorder, and that what I have is in no way a CH.
I feel really silly about my comment and my ignorance, and wish I could delete it.
I mean it man, I hope you can forgive me my stupidity.
TheAnarcrusty 1 year ago
@TheAnarcrusty At first, let me apologize to you for lettin´all my steam out on you... It wasn´t ok to do... But when you are used of being met with "it can´t be that bad" and "you are over-reacting", you become more and more intolerant to comments like that. And when you get fired because of your CH, your world just crashes down.. And no one understands you.. Everything is forgiven and forgotten mate :) But thank God for every day in your life, not having to fear "the beast".. Lassoe....
lassoe 1 year ago
@lassoe you tell em. I was so pissed reading that . I wish I could see this a**hole so I can stab his eye then tell him to man up b***h.
smileychickify 9 months ago
@TheAnarcrusty Its not a madder of manning up I have 4 kids, attend school and I am personally remodeling my house I still want to kill myself from the pain you obviously dont know the pain we feel do you think we act like we want this come on how dumb can you be. We really suffer from something we want to take our own lifes over we dont need some a**hole like you putting comments like you know what we go threw and you the big shot handles it with no problem I wish you did get ch
smileychickify 9 months ago
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I'm a chronic and find the only solution in psychedelics. There are legal way's to take them: LSA from Hawaian Baby Woodrose seeds ( 5 seeds crushed in plain water for 2 hours and than drink it ) - Psilocybe ( you can order magic truffels online, just put them in yogurt and eat them ) Ayahuasca ( go to a meeting of the Santo Daime church ). To get out of the episode do it once a week and absolutely take no other medicins exept oxygen and lots of water. Than once a month to stay out of pain. QED!
teatropereyra 1 year ago
I've had a constant headache 24 hours a day since April 2004 and bilateral white noise Tinnitus since December 2004.
sof2finchy 1 year ago
I was diagnosed with suffering from cluster headaches officially 3 days ago.. after enduring these for years... I'm a 20 year old woman. How lucky huh? Nothing touches these... I don't get them chronically either but when I do have them I want to crack my head open and try to fix it.
aed1989 1 year ago
High flow oxygen (at least 15 L/min) and sumatriptan (injectable or nasal) are reliable and effective abortives. This truly is among the most severe types of pain experienced by human beings. A patient in London unfortunatley gouged his eye out durring an attack with no discernable escalation in pain.
Jman8 1 year ago
Just got over a cluster period about a month ago,and let me tell ya, this guy isn't joking. It is literally the most unimaginable pain you can experience.
There's a product called White Flower Analgesic Balm available in most health/herbal stores. Its used for arthritis relief (sometimes called "Chinese Bengay"), but inhaling this stuff at the outset of a headache can abort the pain!!! It worked for me some of the time, but its the only thing I've ever found to have worked. Hope this helps!
historicaljoe 1 year ago
It's VERY hard for people to relate to 'cluster heads'. My wife suffers from migraines. When I began getting clusters, she said, "They only last an hour or so, how bad can they be? I have migraines that last days!"
I know her pain threshold - there was no way she was 'getting it'. I had the good fortune to go from episodic to chronic over a year ago, but last night was a first: three Kip 9-10's in a 6 hour period. To all that suffer worse than that on a regular basis, my deepest sympathies.
BandPlease 1 year ago
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BandPlease 1 year ago
he's hot!!!!!!!!!
hotlilvixxxen 1 year ago
i know exactly what you mean....
i've got the chronical type :s.
got one attack every day lasting about 3 hours.
thx for putting this on youtube, maybe ppl will know what we're talking about now.
grtz
jantje601 1 year ago
How many times have you heard "At least you don't get migraines?" It's one of my favorites after 22 years of these things.
One question: 5 days is your cycle?
azmab 1 year ago
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Think I am a sufferer like you,. I get my CH once a year sometime every two years and they last for about two weeks and then they´re gone, had this for about 15 yrs.. They come (mostly) at night time or after you drink alcohol. I am glad that I am not a cronic it must be a hell on earth...I know how painful this thing is.
eSyringe 1 year ago
Think I am a sufferer like you,. I get my CH once a year sometime every two years and they last for about two weeks and then they´re gone, had this for about 15 yrs.. They come (mostly) at night time or after you drink alcohol. I am glad that I am not a cronic it must be a hell on earth...I know how painful this thing is.
eSyringe 1 year ago
The main defining characteristic of these damn things is that they are LIKE DAMN CLOCKWORK. I get these damn things from Aug-to Oct (sometimes Nov.)..I suffer from these MONSTERS every damn night that hits LIKE CLOCKWORK (you can set your watch to it).
I feel for those of us that suffer from these. I swear I will scream if another nurse states that it is caused by alergies.
FORMETOKNOWONLY 1 year ago
Oh they are evil. I'm getting a run of them at the moment.
Azurju 1 year ago
I feel for you , I started out getting them a few times a year, now its a few times a day as many as 4. started 15 years ago, if it wasnt for my family I wouldnt be here now am seeking treatment but nothing cured yet, I now get them daily every day of the year with very few days off from it, it has distroyed my life cause you wake up in fear of the next..I wont leave the house now.
4attitude0 1 year ago
dont try aspirine!! - only ibuprofen because its the only histamine blocking Painkiller without prescription if thats in your bathroom, but much better is to go to the doctor and get triptanes for real help, they have less sideeffects than aspirine what i have seen
mucxlx 1 year ago
Hi , i am suffering of cluster headache for 5 years now, i have not had the attack since a year and now a gain i am getting the same pain a gain, today i went to Walgreens and i asked the pharmacist a bout any new medication and she told me about what is called Sumeval Dosepro injection it is awseome medication you guys should try it the only problem is that it is so expensive i bought two refils for $647 which is 6 injections. i hope president Obama's plan gonna help us
God bless you.
ALKARBALAE83 1 year ago
oh man it is exactly the same year and half i had this pain and it is comming again to me now, and i am realy suffering . would you tell me what are you taking for this? please
ALKARBALAE83 1 year ago
@ALKARBALAE83 this is something you need to keep searching for, no known cure for CH's, keep trying, I hope you have better luck than I have. would like to share a site called Clusterbusters com site has tons of info on what you may need.
4attitude0 1 year ago
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maggieva80 1 year ago
good video,im 52 CH for about 30 years,14 week cycles,6-10 45min blasters per day ,more intense near end of cycle.1 month to 1 year between cycles,ice cold washclothes placed on back of neck and another on temple and eye with pressure on both.along with oxygen at full till,prednisone tapers starting 60 mg,drink alot of water,if i fail to abort i can bring a level 10 pain down to about a 7 by STARRING DIRECTLY INTO A BRIGHT LIGHT do not blink and remain focused (artificial light not sunlight)
RnaldSchwollenPeka 1 year ago
I get violent when I get the attack, seriously nobody will understand unless they share the same experience. so sorry for us who has this pain.
09omac 1 year ago
i just watched something on the history channel about LSD and the history of LSD..scientists finally after all these years got approval to start testing LSD on humans again..they just happened to discover that 4 out of 5 cluster headache sufferers reported that their headaches vanished after taking LSD..scientists are trying to work on making a non- hallucinogenic, legal form of LSD to sell in the marketplace for cluster headaches..very interesting stuff.
itzahazylife 1 year ago
Your awesome man, This is the best description I have found on the internet so far.
"I honestly believe that experiencing the monumental pain of a Cluster headache has made me a stronger person: Anyone who can withstand this level of pain can endure anything."
I couldn't agree with you more man. i feel the exact same way, if i can withstand this excruciating pain there is nothing I can not handle as far as pain goes.
paperchaser513 1 year ago
Your awesome man, my family doesnt understand cluster headaches. I let them watch your video now they understand it a little better.
You hit the nail right on the head bro. good luck
paperchaser513 1 year ago
Thanks for sharing, I too am a sufferer. Seasonal and have been to the Kip level of 10. I am on the BOD of OUCH. Something I have been using is a natural health drink call Monavie made from the Acia Berry from the Amazon. It has helped trmendously.
Sue J
smj62 1 year ago
forgot to mention i stopped going for the allergy shots. if the amitripylene doesnt do it this time, i will probably go back for the shots
moonbughug 1 year ago
i'm 45 ,been suffering since 22. episodic. had septum surgery in 2004. headaches stopped for a year and returned a year to the day of the surgery. went for allergy shots and took amitriptylene,, no pain for 5 years. headaches just came back. just got a new presription for the amitriptylene,it was filled 5 years ago to the day ! how weird.. i can time an hour by it. try allergy shots. they seemed to help me. my motto.." no pain ,no pain.
moonbughug 1 year ago
im just about the end of a 5 -6 week episode the beast starts about a hour after i go to sleep and sometimes 4 of 5 times a night once it was about 3 hours . but mostly about 15 min . i know just what you are going thru... try using a hot towel pressed against your eye socket it seems to go away faster ....
JU5TBAD 1 year ago
I am a woman with clusters... visits from the beast at 12:30am every night from last week of September through Thanksgiving every single year with an occassional spring cycle for the last 12 years. Made it through the fall 2009 without a cycle and thought I hit the jackpot... until 2 weeks ago when they started again. The comment about child birth is dead on. Would rather give birth to a child daily than deal with this pain and exhaustion. Great video and descriptions.
yayagirl810 2 years ago 5
BTW - I am a woman who suffer from them. worse pain I have ever felt in my life and I have had a child!! I cry at the thought that my daughter might suffer from them later in life :(
stacibotter 2 years 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
Great video,just in to my;10th episode maybe? up around that number.From experience they stick with me for about 2 months and usually 2 or 3 at night and sometimes through the day...the shadow rarely goes away so i'm always on edge when in cycle.Some good comments on here,'specially Jonnymule,,,don't let the bastards win.Just in response the video, if they stopped after five days for me i'd be doing backflips up the street,and nope, a couple of asprin doesn't work,Once again, great video.PFD2all
Fracked 2 years ago
Wow, you nailed it. My question is, why isn't there more public knowledge about this miserable condition? I'm going through a spell and I'm afraid to go to bed tonight. This is hell.
beandjkc 2 years ago
Great video. I suffer for about 20 years, and this week I discovered that what I have is Cluster Headaches.
I was so happy to KNOW what I have, and to know it's not deadly or something.
the name of the doctor that made the correct diagnostic after a lot of them failed? DR. GOOGLE. Thank you forever Dr. Google!!!
Ramshackled17 2 years ago 10
My Dr's. Name was Marybrake. I'll never forget her name.
gabrielseye 2 years ago
Thank you for making this video, it really spells out in simple, easy to understand terms exactly what a cluster headache is, and how they work. My thoughts are with you.
I'm episodic with two a day. 1:30 am and 6:30 am. Oddly, it seems during the winter months that I get the longer bouts (1-3 hours), while getting shorter ones during hot weather.
I go through 4 weeks of CH's followed by 4 weeks of remission. The pattern seems really odd to me, but I just have to live with it.
maganashi 2 years ago
i like the 2:06 comment. it does always happen at the same times of years even onthe same dates and times of day
I used to get them horrilbe the night be for my brother would come home from boardign school.....every single year.
jaykrae 2 years ago
I've been in my room for a week now getting my ch can't find a doc to give me some kind of shot or something I feel like killing my self but I have kids can't do it sucks
vrosas33 2 years ago
That is not an option!.....I had chronic CH for 31 years and it went away 3 years ago.
Try energy drinks like monster at onset or get some oxygen from a welding supply house, 15 LPM with a non rebreather mask.
NEVER GIVE UP!
Jonnymule 2 years ago 2
some friendly aquantance! kill em!
goneCrAzY38 2 years ago
Thanks for the video. I'm a 24f, and I get a mixture of migraines and cluster headaches. They both feel the same, but ch's are shorter and come on more quickly, while migraines last for days and come on gradually. It's hard to see the world the same way after a ch or migraine. I always found imitrex is an effective abortive and propranolol is an effective prophylactic.
papaverineperoxide 2 years ago
Hi, just into my second attack. First one was seven moths ago. I was lucky enough that my doc knew what it was right away. I ve tried all the common reliefs like O2 and imigran but what realy works for me is prednison.
I take 60 Mg and reduce by 5 Mg every day.
I am not saying this will work for everyone and it won t work for the chronics amongst us but after consulting your doctor you might wanna give it a try.
Anyway i liked the video
tafkabart 2 years ago
yep they hurt like a bastard..and adjective does not come to me to explain how it hurts..O2 and vicodin has worked well for for me. I would NOT wish this on my worst enemy. I have had them for 22 years at a frequency of one to 2 a year lasting for 20 min to 4 hrs.I know when you come out the other end of the Clusters if your like me youu're emotionally and Physically "wiped-out"
I hope you find peace
JPP2672 2 years ago
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Holbrookf 2 years ago
u113902. The absolute best medicine is a subcutaneous injection called Imigran subject. It takes no longer than 10 minutes to work. In the UK, it's also the ONLY licenced drug for cluster headaches. The drawbacks are that it's quite expensive and you can only take 2 per 24 hours. It's a vaso deconstrictor which means it widens the veins and could be dangerous for people with heart conditions, etc.
jjuk69 2 years ago
This is in my experience of course. It's also worth noting that high flow oxygen with a non rebreather mask works within 15-30 minutes and is obviously much cheaper and easier to get a hold of than the Imigran injections.
jjuk69 2 years ago
yarrrrrrrrrrr!! my head hurts to bad to comment correctly
miraclbab 2 years ago
Hey Fellow Cluster Heads,
In NYC. Cluster Head for four years now. Bad sufferer. Just out of the hospital for the fifth time now. I don't know how my partner lives with it sometimes and how he gets me to the hospital each time when they heat up that badly. Mine wound up after working at the Trade Center as a firefighter, there are alot of us suffering from headaches now after working there
Dan in New York
qweilo216 2 years ago
I haven't had a bad one since I started using a heating pad when I first feel the signs. The heat must override the nerve impulses that cause them. Strange but true.
danagasta1 2 years ago
not an expert of any kind
But in study and in theory, common analgesics like Paracetemol or acetominophen are actually not helpful.
kmahiri 2 years ago
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Hendriknetherlands 2 years ago
I am with you, this is my 3rd year diagnosed with the cluster, 5th year having them.
Hardest part isn't the damn pain- it's the fatigue. My work slides downhill, short tempered all the time and always dreading having a random cluster event in public when the peak of the cycle approaches.
Sharkjumpin 2 years ago
i have been getting these since i was 16. i am female so they told me i had migraines. still to this day...24 yrs later i dont know what a migraine even feels like!!! it took yrs for me to figure out what they were...an article from someone overseas!!..i had to bring that to the docs and tell them stop putting me thru tests and trials and tons of different meds that did nothing but give me bad side effects. u r lucky. litium stopped mine for 2 yrs but now they r back, everyday + nite.good luck
bgood182 2 years ago
Barometric pressure is a big factor in my clusterhead aches i find as the seasons change i get heads for a few weeks due to the changing pressure.
i only get them when sleeping just as i go into a deep sleep and my brain waves change
f8tty 2 years ago
Hi, I´m from Argentina, I suffer the Cluster Headaches since three years ago. No treatment results for me, no oxigen, no sumatriptan, no lithium, no punches in my head. The only thing that seems to work is acupuncture. The pain is lower than years before and the attaks stands still for just half and hour each time ( The first years I had 6 hours attacks each day) Try acupuncture, you have nothing to lose.
Good luck.
clonazepank 2 years ago
Thanks for the video. I found out today that I have cluster headaches and that they're not sinus headaches as I was taking antibiotics for a week b/c the doc prescribed them to me. I realize now that I've had cluster headaches for the past 6 years. I always thought that it was severe sinus. CHs are my morning wake up call as I get one around 9:00 am then at 2:30 pm and finally 1:00 am each day. I guess I'm part of the lucky few b/c I get them every other year for 1 1/2 months beginning in April.
rtgrasshopper 2 years ago
sumatriptan works great 5 to 10 mins and am back to normal you can only have to shots in 24 hours which is not so good . oxygen also works well . when my headache start i am prescribed 60mgs of premisalone a day, this helps as but u cant be on it for long as it has severe side affects . i normaly take this for does for 1 week and then i have to be weaned off it which takes another 2 weeks . i also take 120mg of vatrapamil (i think thats how u spell it ) in the morning and 120mg at night .
dixond22 2 years ago
That was a great video! Still trying to find something that works for me! Loved the explanation!
dg176200 2 years ago
i got them when i was 7 i am 14 now
WowKlayton 2 years ago
I wonder if I have them , probably not the worst headaces ive had were for about a minute due to stress+dehydration+mental effort and felt like your brain is a muscle out of energy like your leg after a running effort or something.
but they do come in clusters .......
ConstantC4 2 years ago
Are they intense for you?
AlbinoGangstaz 2 years ago
this is great man, thanx. I have been having this already for 23 years. Can you imagine. During the day I can abort some attacks by drinking strong coffee and sigarettes right at the beginning of the attack. but sometimes not. You know how it feels so I don't explain it. I just keep crying with any sound. My attacks take mostly 3 hours when it comes at night but during the day 45 minutes. I am 33 and if doktors say that it can start at the age of 20. they are wrong in my case. daud.
fuenme 2 years ago
This guy is HOT
MAK0948 2 years ago 17
Oh yeah...VERY hot! LOL!!! I wish! Hahaha! THIS is MY favorite comment!
AtLastTheCatsBack 2 years ago 5
i agree with MAK...
papaverineperoxide 2 years ago
@AtLastTheCatsBack lol. I'm a guy, and yeah, this man is a dark haired, deep voiced, and very very handsome.
sof2finchy 1 year ago
@MAK0948 he isssss hot!!!!
hotlilvixxxen 1 year ago
Been getting it for 3 weeks now! Got some good med's which is keeping it under control for now! Nice to know your not alone though ah!!
simon71590 2 years ago
oh man, 5 days you are lucky
calkid31 2 years ago 2
I suppose...'real' luck probably would have included taking a pass on the whole CH experience...and my thoughts go out to all the CH martyrs who suffered so much more than I!
AtLastTheCatsBack 2 years ago
My father suffers from CH. I have two questions. Are they hereditary "run in the family". And is it very rare for a 14 year old to get a CH.
Thanks
AlbinoGangstaz 2 years ago
I believe they are hereditary. My grandmother had severe headaches since she was 8 yrs old. I was diagnosed with CH at 17 yrs old. It's the most intense pain I have ever felt. I do not wish them on anyone. This cluster started 6/23/09 and is still going. 2 times a night and now 1 during the day! I feel like I can't get relief. Thank God for Imitrex injections and Oxygen! Hopefully it will end soon. This is the first one in 2 yrs.
debbiesmith0519 2 years ago
Dont know if it rare but mine started @ 8 yrs old and Im 35 now and unless im on topamax I get em every year hard between may-sept every year.
WeRAss09 2 years ago
i feel ur pain man, but ure lucky. i have chronic cluster headaches, EVERYDAY! so thank to God that u dont have them everyday like me
cantank78 2 years ago 2
Thank you. This explains alot for me. I think I have this type of headache.
Koffe74 2 years ago
Don´t know why I came to look at this kind of thing this evening...I haven´t had an attack for nearly 2 years. I´m now 47. The attacks have become more infequent. This was avery sympathetic clip and I have just seen more sufferes for the first time and all their screems and pleedings to... all come flooding back. It´s Hell.... It made me cry just to recognise it...To all sufferers, hold on ! Mark.
mackrakram 2 years ago
Im a cronical sufferer of cluster headaches. Its great to see a video like this, cause i can see what others think about it. Nice job, really. I dont know anyone personally who have this kind of headache, so its nice to "talk" on videos about this with someone. thanks.
edumartins 2 years ago
This is great. I think CH awareness is something beautiful. I had to present the information to my neurologists in order to get diagnosed. It is good to get the information out there. I think, the most difficult part of having CH is the anxiety of waiting for the pain to come day after day, and of course being rendered helpless for whatever time it lasts. I could take excruciating pain for a few hours a night, ya know? But the knowledge that it's going to come back tomorrow kills me!
SinNanna 2 years ago
A year or so, I was in such pain. I had blood from my nose and I was shaking from the pain, didn't sleep 2 weeks non-stop.... I wanted to kill myself.
It happened again for 2 weeks now I have constant headache, well sometime it isn't that bad but stabbing of the eye and around the eye is non-stop, I am used to it now... I have them nearly all the time but sometimes it gets so bad I just bury myself into pillow... hoping the harder I push, the less it stops.
I wished I would be resting in peace.
livu2day 2 years ago
i feel your pain man.. my pain never stops. i have long term chronic CH. ive had them for about four years now with my longest remission not even being a week. i give birth everyday man really though. mine come at about 2 also ironically. i dont know if its better or worse because its usually about 2 pm. i seldomly wake from them but it does happen. and when it does it is the worst at this point. probably because it comes out of a dead sleep. i have much knowledge i can offer, write me back bro
P0WERTRAIN 2 years ago
Is it possible to get one of these headaches just once? 4 years ago I got this pain behind my left eye and it was unbearable, the most pain I had ever felt, I had my hands on my head and I really wanted to die, if someone handed me a gun I would have shot myself there and then. I was rushed to hospital and they gave me an injection to numb the pain but it didn't work and they said there was nothing wrong with me. After learning about cluster headaches I'm worried the pain will come back.
Doyle5446 2 years ago