Sorry to hijack your thread Paul, but it's for a good cause I assure you :) Cluster headache patients are joining up with an Advocacy group known as "Alliance for Headache Disorder Advocacy" (google their name to read more & to sign the petition). This groups purpose is to petition Congress for research dollars to address all headache disorders & will be presenting on capital hill in March.
Send an email to reynoldscindy hotmail.com I'll add you to the "Progress Report" mailings!
I am fortunate enough to know my trigger for these suicide headaches. I have been exposed to wood finish on three occasions in the last 7 years. Each time has resulted in severe pain in my left temple which is debilitating and last between 1.5-2 hours each. They come in a series of about 16 episodes of "suicide headaches".
The first episode occurs about 5 days after exposure, the second about 2 days after the first, then they continue to compress until they become as close as 12 hours apart (around the 8th episode). From there, the periods expand until the last couple are separated again by a day or more. Following the 16 or so episodes I am completely free of symptoms. Each incident has followed the exposure to wood finish which had recently been applied and the fumes while the finish was drying.
I know this feeling all too well mine would start with a tinge feelin in my neck on the left side and would start to progress over the topof my head until it was behind my left eyeit shuts you down and is very painful. I would take many many aspirin,tylenol,and ib prof.,, which would last about 30 mins and I would need more!! It seems to never go away just eases up a little!! from sunfall to morning when it would hit, I kid you not but it went away very fast after my wife left me! she smoked cig
Thanks to whoever posted this. It's now autumn, my designated season for the return of the angry demon, who at 8PM tonight and at 4AM tomorrow morning will once again brandish his branding iron with full force to the back of my left eye for a good 25 minutes. Thank God I am episodic. I truly don't see how the chronics can even keep alive the will to live. Just the thought that I have at least 48 more attacks coming before it subsides is horrifying enough. Chronic CH sufferers are my heros.
Iv'e had the injections over here in U.K. their simply a injectable 'Sumatriptan', which do get to work quite quickly and maybe slightly delayed effect depending on the individual. Also, a nasal one time disposable 'Sumatriptan' shots are good but, not instant effect again depending on the individual.. Luckily I have O2 delivery and is best for me, can't imagine life without O2 really, pure oxygen to tame the Beast.. Oh what joy, I dream of a better place.
I agree, could have said "a hundred", but that's a classic cluster sufferer downplaying because of the inner voice that's saying "No one can understand this pain, the severity, the isolation and the complete fear of return the attacks. It's just too unreal!" But we do Paul...fellow sufferers! thanks for sharing.
@1961mom1961mom Bigtime!! I am so tired of even attempting to describe this to people, and hearing them say "oh yeah, i had a bad headache a few days ago too".
@bsicabgs I've recently agreed to join a committee with other cluster headache diagnosed patients who will be addressing Congress in March of 2012 led by the "Alliance for Headache Disorders Advocacy" group. The goal is to urge Congressional collaboration to find & grant funding to educate, research and bring us out of the closet! Please feel free to send me an email @ reynoldscindy@hotmail.com if you're interested in following the progress!!! ANYONE reading this is welcome also.
I had my first attack in 1978. I honestly thought someone had shot me in my head. 33 years later, I have them somewhere around 10 times A DAY, with 2 or 3 visits to the ER a week. I only go in for an injectable if they truly are unbearable. Once I start crying and puking, it is all over.
These headaches totally take over your life. You can't leave town, unless you have a hospital willing to treat you.
I am 22 and I have suffered from cluster headaches since I was 7 yrs old. when I was that young I would cry myself to sleep and tell my mom that my eye was hurting. Not knowing what was really going on she took my to the eye doctor who proceeded to tell me he didn't know what was wrong with me and could do nothing for me. In my teen years i was lead to believe what I was suffering from migraines. But after reading forums from some amazing people like this, I now know whats going on. Thank you
I suffer from this beast To call it a headache does not do this condition justice. I agree with the post below.. they are TORTURE CLUSTERS. They come on without notice, and I feel like there has been an explosion behind my right eye. They often hit me at night, and wake me up. It hurts so much more when I am in a flat position so I have to pace back and forth sometimes at 2 in the morning. The shortest attack for me is about 45 minutes. The longest is about 2 hours. You are not alone, my brother
I suffer of this terrible neurological disease since I was 20. Now I'm 26 years old and from episodic cluster headache she has become chronic with attacks from one to three for day every month of the year. It's very very very hard try to do a "normal life" (work, friends etc.) because is very disabling and often we tend to "close" in pain or at least that's what happens to me ....
I am 38 and have suffered since age 21. I diagnosed myself after 6 years of seeing 'specialists' One doc told me to stop being mellow dramatic - I am episodic and use sumatriptan - Simply put, they're evil
This condition should not be called headaches of any kind. Torture clusters would be more like it. My precious husband of 20 years suffers from this evil heartless condition.I want to help educate people about clusters. How can I do that? There not Miagraines either. The most painfull condition known to mankind and its practically no more deadly than the comman cold.
Sorry to hijack your thread Paul, but it's for a good cause I assure you :) Cluster headache patients are joining up with an Advocacy group known as "Alliance for Headache Disorder Advocacy" (google their name to read more & to sign the petition). This groups purpose is to petition Congress for research dollars to address all headache disorders & will be presenting on capital hill in March.
Send an email to reynoldscindy hotmail.com I'll add you to the "Progress Report" mailings!
1961mom1961mom 1 month ago
So it's like really bad brain freeze?
roxtar10870 2 months ago
@roxtar10870 noo its like someone inside your head is putting a needle in your eyeball and sticks it in there for like 20 times a minute
Naaidje 2 months ago
I am fortunate enough to know my trigger for these suicide headaches. I have been exposed to wood finish on three occasions in the last 7 years. Each time has resulted in severe pain in my left temple which is debilitating and last between 1.5-2 hours each. They come in a series of about 16 episodes of "suicide headaches".
blksv560 2 months ago
The first episode occurs about 5 days after exposure, the second about 2 days after the first, then they continue to compress until they become as close as 12 hours apart (around the 8th episode). From there, the periods expand until the last couple are separated again by a day or more. Following the 16 or so episodes I am completely free of symptoms. Each incident has followed the exposure to wood finish which had recently been applied and the fumes while the finish was drying.
blksv560 2 months ago
I know this feeling all too well mine would start with a tinge feelin in my neck on the left side and would start to progress over the topof my head until it was behind my left eyeit shuts you down and is very painful. I would take many many aspirin,tylenol,and ib prof.,, which would last about 30 mins and I would need more!! It seems to never go away just eases up a little!! from sunfall to morning when it would hit, I kid you not but it went away very fast after my wife left me! she smoked cig
iam4god2day 4 months ago
Thanks to whoever posted this. It's now autumn, my designated season for the return of the angry demon, who at 8PM tonight and at 4AM tomorrow morning will once again brandish his branding iron with full force to the back of my left eye for a good 25 minutes. Thank God I am episodic. I truly don't see how the chronics can even keep alive the will to live. Just the thought that I have at least 48 more attacks coming before it subsides is horrifying enough. Chronic CH sufferers are my heros.
stigsworth 5 months ago
@stigsworth... up to 4 a day!! I must be your hero..
DJMARZONE 1 month ago
Iv'e had the injections over here in U.K. their simply a injectable 'Sumatriptan', which do get to work quite quickly and maybe slightly delayed effect depending on the individual. Also, a nasal one time disposable 'Sumatriptan' shots are good but, not instant effect again depending on the individual.. Luckily I have O2 delivery and is best for me, can't imagine life without O2 really, pure oxygen to tame the Beast.. Oh what joy, I dream of a better place.
JONACAN 6 months ago
I agree, could have said "a hundred", but that's a classic cluster sufferer downplaying because of the inner voice that's saying "No one can understand this pain, the severity, the isolation and the complete fear of return the attacks. It's just too unreal!" But we do Paul...fellow sufferers! thanks for sharing.
1961mom1961mom 6 months ago
@1961mom1961mom Bigtime!! I am so tired of even attempting to describe this to people, and hearing them say "oh yeah, i had a bad headache a few days ago too".
bsicabgs 2 months ago in playlist Favorite videos
@bsicabgs I've recently agreed to join a committee with other cluster headache diagnosed patients who will be addressing Congress in March of 2012 led by the "Alliance for Headache Disorders Advocacy" group. The goal is to urge Congressional collaboration to find & grant funding to educate, research and bring us out of the closet! Please feel free to send me an email @ reynoldscindy@hotmail.com if you're interested in following the progress!!! ANYONE reading this is welcome also.
1961mom1961mom 1 month ago
I had my first attack in 1978. I honestly thought someone had shot me in my head. 33 years later, I have them somewhere around 10 times A DAY, with 2 or 3 visits to the ER a week. I only go in for an injectable if they truly are unbearable. Once I start crying and puking, it is all over.
These headaches totally take over your life. You can't leave town, unless you have a hospital willing to treat you.
missKatie123052 6 months ago
I am 22 and I have suffered from cluster headaches since I was 7 yrs old. when I was that young I would cry myself to sleep and tell my mom that my eye was hurting. Not knowing what was really going on she took my to the eye doctor who proceeded to tell me he didn't know what was wrong with me and could do nothing for me. In my teen years i was lead to believe what I was suffering from migraines. But after reading forums from some amazing people like this, I now know whats going on. Thank you
Sythiphus1 7 months ago
I suffer from this beast To call it a headache does not do this condition justice. I agree with the post below.. they are TORTURE CLUSTERS. They come on without notice, and I feel like there has been an explosion behind my right eye. They often hit me at night, and wake me up. It hurts so much more when I am in a flat position so I have to pace back and forth sometimes at 2 in the morning. The shortest attack for me is about 45 minutes. The longest is about 2 hours. You are not alone, my brother
QueenCleobethra 9 months ago
I suffer of this terrible neurological disease since I was 20. Now I'm 26 years old and from episodic cluster headache she has become chronic with attacks from one to three for day every month of the year. It's very very very hard try to do a "normal life" (work, friends etc.) because is very disabling and often we tend to "close" in pain or at least that's what happens to me ....
GabrieleMetalhead 9 months ago
This has been flagged as spam show
Search for "cluster headache remedy" on ebay. I got you covered. From a former sufferer
daniacea 9 months ago
Could have said "A Hundred" times worse!
dunskie 1 year ago 9
I am 38 and have suffered since age 21. I diagnosed myself after 6 years of seeing 'specialists' One doc told me to stop being mellow dramatic - I am episodic and use sumatriptan - Simply put, they're evil
rubidoobi111 1 year ago
Great Vid, thanks for posting! Fellow sufferer. Take Care.Dont let the beast win.
darrin792 1 year ago 3
This condition should not be called headaches of any kind. Torture clusters would be more like it. My precious husband of 20 years suffers from this evil heartless condition.I want to help educate people about clusters. How can I do that? There not Miagraines either. The most painfull condition known to mankind and its practically no more deadly than the comman cold.
jhartist123 1 year ago