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Everything posted by ClusterHeadSurvivor

  1. since Santa lives up the road from me here in Canada...and jesus in my heart...want to wish you all a Merry Christmas...EH !!!!
  2. I don't think youhave tried "ALL" forms of medical uses for CH. Have you had brain surgery? If brain surgery scares you then your in the right place. I am not a BUSTER but I am 100% a supporter of Busting and this is the place to get knowledge, help and understanding. I hope you find relief here. Great group of people
  3. as I stated I tried adding my blog as a place of reference from a person with the disease. I tried adding at the bottom under links...was deleted within hours. I am still baffled why anyone would deleted a survivors point of view or blog to help other people???
  4. I am very sorry to hear. Perhaps considering I am chronic everyday is December to some of us. Hope Christmas is ok and able to be ok over the holidays.
  5. wow....now thats support !!! Atta boy there fellas and gals!
  6. Give him the link to this site, my blog or my videos on youtube of me having attacks. Ask him after watching the video if that is not debilitating. Not to tout my own horn buuut. I have gotten people disability and insurance over my blog and videos. Just yesterday someone emailed me and thanked me for posting because after their insurance provider viewed my videos, they got coverage" I myself, in Canada receive a disability pension through the government. That should speak volumes.??? There is a letter somewhere on the ch.com website printable for letters to employeers and collegues. I cant find it but if someone can print it that would be great. it may also be tme to consider applying for disability. I tried for years to work. There isnt a hope now for me to work. Also ask you boss...if its not debilitating why would Tom have 4 brain surgeries???? I actually had someone say to me that as i went in for surgery"geez maybe they are that bad if he his having brain surgery" yeah dumb azz they are. du'h.
  7. I am very sorry to hear. I been there....ex wife. I recall many times, her slamming the door on me saying "I can't deal with this sh*t" slamming th bedroom door and leaving me on the floor screaming. When she left...I said don't let the door hit your butt on the way out... As for my so called fake friends. My so called fake friend sof 25 years...well listen to this... I am laying in bed in recovery at the hospital on my 2nd of 4 brain surgeries. My new wife is crying....I ask...is it the 28 staples in my head?...no she says....is it my shaved head?....no she says....is it that im sick?....no she says.... then what is it?.....where are your friends? ................. ................. no card,no text,no email, no get well, no visit, nothing. COWARDS, . again I can empathise with you. I am home pretty much 23/7. no one visits me, calls me or nothing . All I have mis my family. my wife now who I am so blessed to have, my son and folks. thats it. Im ok with it. Id rather have no friends than fake friends. I have lots of online friends but no buddies to call me up and do car stuff with...thats ok... I know how ya feel. The disease has taken far more than my health
  8. i tried adding my link for spport to only have it deleted within a couple hours. I tried for a couple days and it was deleted everytime. I gave up
  9. #10 !!!!!! I was talking to my shrink yesterday about my PTSD. And I said the biggest issue I have being sick with this invisible disease is people don't believe you. Its so hard to wrap their head around the word "headache" If I said cancer,diabeties....people correlate... CH...blank look of yeah right.... At present i have a broken foot. I was clearing snow off my car at the mall the other day and I have an air cast on. These two university girls looked at me and to eachother... "oh poor bastard" That sucks" as I think to myself...This is the 6th bone I have broken in 2 years. Its nothing...really. but if I said hey girls I suffer from headaches...they would either laugh or offer me an asprin. So thank you for posting this....#10 is most important to me
  10. This is for Jim,Mike,Scotty,& Jimmy,RIP my friends. Enough already, Please regardless of holiday season. Don't do it. If I am behind you and suspect you driving drunk. I will call 911 If you hurt my wife and or son. I will find you. Please, if your gonna drink, don't drive
  11. I see a shrink for PTSD......from brain surgery being awake. I had an episode at the dentist where I thought I was loosing my freaking mind...getting better day by day
  12. I explained to my shrink the other day that the first 5 years of having CH, like anyone plagued with a disease at a young age we go through the 5 steps. It really took me until last couple years to accept what I have and move forward and not worry about the next attack yet worry about the now and live for now. To be positive and know life is a gift. My blood boils too when I hear" Oh my mom gets those, she takes an asprin and lays down" or "They can't be that bad" where 99.9% has no F'ing clue. Finding a nuerologist that has done their homework and knows and has listened to Dr Goadsby knows what the heck we are talking about. Im glad you found someone who cares. Makes a world of difference for us. I am often told by my nuerosurgeon I know far more about the diseasr than him. He also said it would be use ful but chances are I am the only patient he may have in his working career. My surgeon is a Parkinsons DBS surgeon amongst ONS and other brain surgeries. I only see him and not my neurologist because I have far exceeded a nuerologist help being chronic an dhaving tried or funnelled any drug through my body. I wish you great success with your new nuerologist.
  13. Vickle. Yes I agree what a difference. The first nuerologist I dealt with....GRRRRR She made me so angry and i am not the only one. My buddy a retired firefighter deals with her. He feels the same way. She said to me one...oh clusters...not so bad. I get migraines.....I was like ummmm I get migraines too lady and they are NOTHING like migraines. All I was to her was a prescription pad. She did not want to hear about my side affects. for 2.5 years my body was a funnel for here"try this". All those god damn side affects I had and the last straw was impotence. That was final straw. I poured every single thing she gave me down the toilet. Told her id never see her again and got another nuerologist. The best in the country in fact. So caring, thoughtful.Listened and actually didnt compare themselves thinking i was a whiner. ... moving forward. My new nuerologist got me in touch with my nuerosurgeon...and voila... brain surgeries later, so Vickle. I am veyr happy you got someone empathetic to CH and listens and is open to alternative treatments. If you haven't taken Imitrex before everyone reacts different to it. Its like CH. No one is the same. We all have our own mix of things. As for myself. Imitrex is a love hate relationship. Night before last, 1147 am woke up to Kip 10. Jammed myself with a needle to let me why sleep because she works. Only 15 min of screaming not hours. But the next day I get really sick. Lethargic, bloated, zero energy,wiped out and rebouns 10 fold. usually 5-10 extra attacks that day. Its the trade off. But again everyone reacts differently to the med. Just be preparred. There is videos on line to reduce the dosage and get 2 doses per injection. I have tried that and sadly dont work for me because I am a big guy. I need the full dosage. Might work for you. Wishing you a PFD
  14. excellent article. Way to go Bob and Cindy two thumbs up for the community
  15. I read on Ouch UK there is a recall on Imigran... thanks for the feedback, much appreciated
  16. I was watching Dr.Goadsby lectures and there was menton of injecting the Imitrex into the leg... I have always injected it in my arm above bi cep. In the meaty part. But I read your not supposed to???? Why??? To me...in my way of thinking...my arm is much closer to my head than my leg meaning faster responce to the medication....Can anyone enlighten me? thank you
  17. Thank you so much for the offer and he was in tears for the offer but kindly declined. He has really bad side affects and uses a nasal spray. He had 4 DBS operations and a ton of complications and is chronic like me. He sent his sincerest gratitude and heartfelt wishes. I would take them but I am in Canada and the post office does not allow mailing of medications. I hope a survivor there can certainly use them. Very very very kind of you to offer. Here in Canada they are $140 at Shoppers drug store and I get them at Costco for $108 canadian dollars. So whoever is getting them is going to save alot of money. again kind regards.
  18. Elly, I have emailed him....His replies usually take a day because of time change and the Chs he is having... I will let you know as soon as he tells me. I will PM his address etc thank you
  19. I think he had ONS if memory serves me right??? I know a fellow survivor in Sweden might take them, I can ask? Glad surgery worked out. I have had about 5-10% improvement but that could just be cause of little stress. Keep us posted on the progress!
  20. Happy Thansgiving to my Canadian friends and families and to those globally we as Canucks give thanks today (Americans Thanksgiving in November) An excellent day to reflect, be blessed and to give thanks
  21. thanks VIc ((((HUGS)))) Glad I helped in some way.
  22. I have never busted and only will if BOL becomes a script. For more info why....read my blog. But I do not judge others who do and support this site. thanks for the intrest and PFD to u too!
  23. I made a great friend over the last year. His name is Rami and lives in Sweden. Found me through my blog and such, He has had 8 brain surgeries himself. Same ones I have had, we encourage eachother to remain positive and uplift eachother. His english is really good. His computer skills are far superior to mine....he made a video of me for us. He took some of my videos and photos and made a long 30 min video explaining my journey with CCH, brain surgeries etc. He did this for no reason. CH community is great! If you have half an hour and curious watch it. But he inserted tidbits throughout and FF would not be reocmmended. I appreciate it very much what he did for me. For me vanity went out the window a long time ago. I hope you like it, please share with anyone that may benefit. I have several videos, some much shorter. One video with 208,000 views only about a minute long if you prefer to share a short one. Either way, intially my very first video was only made for a handfull of people t show them what I was going through as they did not believe me or understand. Never thought in a million years Id have over 208,000+ views. I have made some incredible friends of fellow survivors and now if it helps one person get educated about the disease of a friend or family member or co worker or if it helps a fellow survivor knowing they are not alone, then it was all worth it to me. Wishing you all a PFD !
  24. I have the most admiration and respect for you. And one day hopefully in my lifetime BOL will become a pharmasuticle I will try it. I love your humar btw.... My son watched your video for the first time last week. Your daughter and my boy...they are alike as a child of a survivor... My son said..."dad your not going to are you?" I said no son. He said ok then.... He got sad watching you as well. My door is always open if your ever north of the border.
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