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Everything posted by ClusterHeadSurvivor

  1. O2 no work for me. Nor does any other medicated drug. Imitrex is last resort for me because It makes me very very sick, I give myself a shot when my wife has to work early so I dont ruin another night of sleep for her.
  2. I needed that chucle after last nights epsode.whoaaa what a ride...no fun hmmmm Only trait i have is tiny pupils. Barely see them, my eye drops during an attack and sinks in.... i read on another site about checking ones labito. My testoserone level is in 99 percentile. My dad watched on news last night and reporter was saying people with CH should try having sex.... I said most of us with CH would be insulted by that statement as sex is last thing on our mind, and last night screaming my head off there isnt a remote hope in hell I could even try, anyway back on topic.... I wonder there has to be a common trait amongst CHrs with other disease or something.
  3. I had to wikipedia Horners.... Only thing I have is small tin pupils. Looks like 2 piss holes in the snow. I should get checked out.
  4. I am often baffled and wonder if there is a common trait with CH globally. I notice alot of men whom have receiding hairliness have CH. Base don photos or videos like mine. Do you have any other ailments besides Cluster Headaches? I am a Chronic Cluster Head as well as Miigraines, tension headaches I have Irritable Bowl Syndrome(frequent flyer) Exzema on hands and feet. Lower back arthritis
  5. unfortunately welcome. You are not alone
  6. I got my letter yesterday from hospital explaining the nuerological testing to be done on me. Its 8 hours long. I am scared actually. Worried my licence will get yanked or add to my list of health problems by diagnosing me with another.
  7. great idea....crappity smack was not my choice of words.lol You and many other have written beautiful poems. Love to read
  8. Tick Tock, the demons alarm clock is ringing time to get up to die Sound asleep, the alarm is ringing in my right eye The words uh ohh I say to my wife. She runs for the kitchen to hide the knife Fearful, this might be the one that takes my life. Not this time I am not ready for suicide Wait my attacks not over yet IÂ’ve just begin to ride I shake the head board in pure agony Screaming top of my lungs , neighbours think itÂ’s a felony As I pray and beg the tears start to pour I beg my God for it to come back to no more My son puts his hand on my head. My wife rubs my back IÂ’m glad we donÂ’t have a gun because this would be my last attack Their love and touch is a blessing in disguise. As if it wasnÂ’t for God and them the devil would have won his demise Yes , itÂ’s the devil. The beast as they say Fuck you CH, today is a new day I will get back up, no matter how many times you hit me Night after night, day after day I will not let this beast beat me For all you fellow Cluster Heads Stand tall, be proud and take your meds!
  9. I do like the name of Loadis Bullitis in Gunis! we should start calling them that. Im going to test it out. Please tell me you mean the quote... Other day son and I went to auto wreckers...its what us Canadian car guys do in the winter. Walked in and guy inside was ranting about some schmuck who called there by accident wanting to commit suicide. He was upset the guy called him. What an incensitive prick. I wanted to knock him out. I was so upset and it still bothers me....because I been there. I did want to die in 09. Suicide is real. What if this guy had a gun, was on a bridge or whatever....I would have kept him on line. Got him help from 911 or suicide hotline or coaxed him out of it. Not hang up on the guy and call him an Fn idiot. Im still boiling. Some insensitive pricks in this world.
  10. Happened again yesterday,....Oh my brother gets those. Cluster means a bout of them correct? Well what about Chronic with no remission like me? Hortons Nueralgia was the 1st name. That one works best, then I just say nickname Suicide Headache. And then get ...Ohhh. If I said to men....hit your nuts with a rubber hammer as hard as you can.....guesstimate the pain. Multiply it times a million then transfer than pain to your eye and you MIGHT have a remote clue what the pain is. If I was a woman and explained its worse than childbirth, people might beleive me. But I am not a lady. Suicide Nueralgia? How about that? Loadis Bullitis in Gunis? Worst f*cking pain a human gets? I dont know.....Im tired of defending us like we are a bunch of whiners,complainers,hypocrits who seek attention or drugs. Its none of that. Maybe....Ill print off a wikipedia sheet and just hand it to people. :'( :'( :'(
  11. rough night...im gona take the day off....im sure you can all relate. Thanks for the comments.... made me smile and laugh today....needed that
  12. the test they are going to do on me is 8 hours long. With lunch break. I assume its serious and will have legitimate results.....watch that day ill remember everything....LOL
  13. www.clusterheadsurvivor.blogspot.ca love to hear any negativie or positive feedback on my blog... or does anyone read them? lol Any suggestions for topics.? I try to write positive most days thanks for looking
  14. I am being sent for memory testing in March. I have BRUTAL short term memory loss Long term excellent. Like if I go 1km to a store form my house,when I arrive I forget why I even left the house. But ironically I remember this happening 2 weeks later. Nuerosurgoen ordered testing. They say CH has no long term affects. I think thats BS. My neurosurgeon says its from ongoing trauma to my brain.
  15. I LOVE YOUR ANALOGY....keep them coming....I am putting bits and pieces together.....
  16. I loooooove the last responce....well said. ok I know this is going to PISS some off and please take it with a grain a salt as I mean ZERO disrespect...... But WTF is eposodic???? I dont know what remision is. So if doctors call them Clusters....for episodics...who have remission....what happens to us that are drilled non stop? Almost 8 years non stop every day. And your absoloutely right....the pain is in the eye area...not my head. Mind you id like a bullit in it most attacks but that is here nor there. When I tell people I say suicide headaches or hortons nueralgia because telling someone you have chronic clusters is an oxymoron sort of. Who came up with that name? I try to educate, blog, advocate. If people think I am biased about the pain I refer them here or to OUCH or Google and or wikipedia and they still dont beleive us, take us seriously or think we are whinners. Good god. Seriously? I wanna smack someone in the face some days and say listen you bafoon. You do not have these, I do. 99.9% of the time I am reasonable, listen smile, say nothing. I complain more to my wife that people dont listen. My son who is 14 shakes his head. Ya know whats more funny....telling people I had 4 brain surgeries for them... That look on heir face is worth a million dollars. You cant fake "Yeah Right" off their face... I actually had one nob say to me....wow maybe your not faking it,maybe they are really that bad....as I went in for my 2nd brain surgery....DU'H this feels good to rant to people that say....I GET YOU. thanks...ok warm hugs now Look at this pic.....Does this look real enough for you????
  17. I am starting to loose my wits. I generally really keep it together. But I am frustrated in many ways. " How many times have your heard?"....oh my buddy gets those? or "Its just a headache,cant be that bad" or "You cant be serious?" I have lost jobs, what I thought was best friends, and get a deer inheadlights look when I try to explain. I even blogged about it. Advise read my blog or goggle it, wikipedia it....still same reaction Last friend said...ya ya ya I read your blog then asked when my attacks stop? Like there is a cure. Then argues with me his employee gets them but goes and lays down because noise and light bother him. I explain his symptomes are of migraines which I as well get and they are 100% different. He argues with me like I have no idea. Then sounds shocked when I tell him its incurable but I said...didnt you say you read my blog? I am sure this scenario and many others have happened to you fellow cluster heads. Dealing with my attacks, fatigue, stress adds to being short with people. Is there a different way to tell people...."For frig sakes listen to me, I am trying to tell you I am an expert. Listen to me you bafoon,stop arguing with me and pay attentiont o what I am trying to tell you." Some days I wanna smack someone in the face for not listening. I am at my wits end....I try to offer links.Videos....people just dont friggin listen My family sees what I deal with. Shake their head in disbleief. Others argue constantly and battle like they remotely know what we have. Like a F*****king Asprin is gona fix it. I said to my friend....since when do they give brain surgery to people with migraines? Since when do people commit suicide from migraines? I have had migraines since I was 8 yrs old. And I remember the exact time I got my 1st CH attack. 100% different. Ill take a migraine until I take my last breath over 1 more Cluster Headache.... ok I am done ranting...thanks for listening....join the fun
  18. I am sorry your surviving this. I hate saying suffer. Where or how did you get or make that headache diary? I have a lousy one I use for my nuerosurgeon. Any chance of emailing me a link or how to do one like you? I am NOT computer savy....but I do love your chart,very well detailed. Easy read. Hope you feel better.
  19. i know the girl who started the FB support group. I dont have FB. Dont want it. Too bad. Sounds awesome
  20. I d love to go....have no money. $706 a month pension for me is very very hard to get by on. If it wasnt for my wife and family, Id be homeless Ill be there in spirit
  21. I am trying to spread awareness. I have emailed CNN,Canadian news stations, Ellen, Dr OZ. Anyone I could think of to get not only my story but the advocacy of spreading awareness out there. Now a days its who you know. Any help is appreciated. I know not many CHrs out there want their face plastered all over the news. I lost my vanity along time ago. Having 4 brain surgeries helped that. My dream would be to be interviwed by Dr.Sanjay Gupta He interviewed someone last year that had DBS but not for CH. You can PM me if you prefer to keep your identity private as some may know famous people here. thanks for any help
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