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Everything posted by ClusterHeadSurvivor

  1. I had ONS as well as DBS. ONS sucked...One wire was pertruding from my head. Couldnt sleep. Horrible....but thats just my own experience. I hated it. DBS was no cake walk either.... I am probably only small handfull of people on this planet who has had both. I was #17 at the time for DBS for CH.
  2. http://ca.shine.yahoo.com/a-remote-controlled-device-to-stop-severe-headache-pain-181739418.html
  3. I just got back from Cape Coral and my attacks were less often and severe. But then again on vacation with no worries, beach at yacht club 2 min from house,sand in my toes, took a sh*t load of stress off my mind..... I am a sun worshiper too. Cant get enough of sunshine,outdoors and warm weather. Came home to the cold and been a miserable F*ck since...j/k/ but I really do hate winter.
  4. Thanks, I am a HUGE supported of Parkinsons because its nuerological. Mike and I have ties. Both lived in Ontario. Both lived in British Columbia, both are proud Canadians and have nuerological disease. I have a short brother named Mike as well, LOL I actually got to see Mike speak at a benefit for research here in London Ontario. I flew in the nigh before from my honeymoom and had bought tickets some 6 months prior. $250 a ticket and far beyond what i could afford but my wife knows how important it was to see him speak. I sat at a table with my wifes best friend whom has MS, 2 doctors, 2 sceitntist, and myself. I cried because I sat amongst sick people like myself. For the first time in my life I didnt feel alone in a room ful of people. Mikes humar, positive enlightenment as is evident in his book as it is in person. I truly love the man. I can only aspire to be more like him. I really mean that. I am writing a book on m life. When published I plan to donate 25% net profits to MJFF, 25% Mayo clinic and 50% to my family for taking care of me all those years. I want nothing. So if anyone knows a publisher....wanting to help.. I owe so much gratitude for Mikes ongoing deligence in hs fight for a cure. His research funding is a large part in why I had DBS. Mike talks about DBS alot. He wont do it. He had brai surgery once already. I know it was a Canadian Doctor from Toronto who dicovered DBS but its the ongoing funding and research DBS and Parkinsons go hand in hand. Hence my desire to help PD as much as CH. again, thanks for kind words
  5. I stand corrected. The date was in 2015 from the movie in the De Lorean. My apologies. Someone texted me this pic and I guess I got excited. Eveything else I said about Mike it true My apologies for the inconvience
  6. Undisputable Mike Fox has done more for Parkisons than any famous person. His ongoing deidcation to Parkinsons is endless. He is in business to go out of business. I know I have said it before...but Mike is my Hero and I can only aspire to be more like him. There are 3 top fav movies of all times of mine. American Grafitti, Smokey and the Bandit.....and Back to the Future Triology. Today is the day....Marty went back in time....man....what I wouldnt give to back in time. Man have asked Mike if he would go back in time and change things before his diagnosis. Naaa he says....made him what and who he is today. I couldnt agree more. I am right where I am spposed to be. Raising my Pepsi glass to you today Mike You have definately made the race to cure Parkinsons much faster than 88 MPH....300 MILLION and counting. Now that is some serious sh*t I can only aspire to be more like you God Bless Mike http://clusterheadsurvivor.blogspot.ca/
  7. Anytime I eat food with preservatives....canned foods, lunch meat....i get worse atacks. tyr to eat fresh its also healthier
  8. I get migraines, tensions and my chronic clusters as well. I get the light flashes with migraines, the spike with tensions and the bullet to the eye with clusters.
  9. sorry forgot to add. AMongst the brutal stress I was under...that I beleive is the cause of the disease for me....I later found out triggers for me. Alcohol( i havent drank in years but would maybe have 6 beers a year when I did-just the neck of a beer is an instant attack for me) so no love lost there. Wasnt smoking. I was 25+ year heavy smoker and have been smoke free pushing 2 years and zero improvement. But also chocolate,any nut(no I am not allergic), red dyed foods/drinks, MSG-chinese food as good as it tastes equals Kip 10s for me, red meats-sometimes.Usually really high quality red meat. Hottubs, yes hottubs,saunas cause brutal attacks for me. Sucks because I love heat and hate cold. And the number one ding ding ding......stress. i try to avoid it like the plague. Sometimes I can not help things that stress me out and 99% of the time its people and I can not rid myself of stress. I have learned o deal with stress better. Rid myself of arogant friends who only care about themselves. do things that make me happy. Sorry should have wrote that in my 1st paragraph.didnt meant to go offtopic r steal someones thunder. Blessings eveyone
  10. 7+ years Non stop everyday. I am chronic. JUly 25,2005 5pm. I was in my driveway installing a headliner in my hotrod.
  11. I had lost a child on my birthday a few months prior. My son had been mauled by a dog recently and his grandfather was dying.My first attack was the day of my ex wifes horrific car accident. I guess you could say I had some things going on
  12. I reached out to Mr Radcliffes talent agency to say hey....there is some of us here who can lend support. I did not even get an acknowledgement back. I am not a fan of him. I dont dislike him. I am just not a fan. There will be a point where you will see Mr Radcliffe searching for help. We all go through it, Rich or poor. When I emailed, he was less than 2 hours from me in Toronto filming. I wish him and any other CHr well.
  13. are you in Canada? I know DBS is about a 100k here and the pacemaker alone is 10k I am so fortunate to be Canadian. WOnder what the other 16 people in the world did. Only 1 other Canadian before me had it done for Ch and I know him. Be kinda scary to live in a country with no free healthcare.
  14. yeah I am houdini....I faked it to have a 3/4 inch hole drilled in my head while awake. I faked all this....ba ha ha ha what a bafoon....I let him post it...so people would reply to his comment....says he knows me too...I invited him over to show something to him....my pacemaker,my scars and a bat. LOL
  15. I do realize and know that having a YoutTube channel and spreading awareness about the disease, having a blog,opens myself up for some real weirdos,sickos and nut jobs.....but holy hanna.... What I am cutting and pasting doesnt bother me. Because reall it doesnt. The only time I ever got annoyed is when some a hole wish my son got the disease. That person I wanted to have chicklets for teeth. Yesterday I got a message and today another one but todays I actually posted....because I want other survivors to read it....and message this moron....he called me and the disease a fake...hahahaha here is a cut and paste of what he said ... its on my video "Cluster Headache Ontario Canada" on YouTube here is the other one I got yesterday....this one I deleted. GiveMeYourAddress has made a comment on Cluster Headache Ontario Canada This comment requires your approval. You can approve or reject it by visiting the comments page. Choose suicide. You know it makes sense. Your dog will be fine and it hates you anyway. Some people are cowards and sick F**Ks. I have to take the negative and turn it into a positive and despite how messed up they are pray for them. I am not posting this out of anger. More disblief I guess. I only posted that guys comments because I hope other CHrs out there reply to this guy.... drew Uitterdyk 9 hours ago really if u are in that bad of shape y has the health system not steeped in to help you. i think u are a joke and the fact that u have the right to stop my post from being displayed is garbage, and shows how fake u and this stuff is. stop trying to get people to feel sorry 4 u grow up be a man! i know about you and the person u are u may fool people who don't know anything about u but for the people who do u are a rat, and[ch65279] a moron. lol
  16. i am a proud canadian. yes I am glad I did it. my life isnt over yet so there is hope it still may work. on my deathbed I still will never even consider....busting hope that answers your questions
  17. I had ONS and DBS. First I had ONS Aug 13,2011 for 2 weeks and had zero success. Was removed and then set up for DBS. DBS was done Feb 27,2012. Was turned on 2 weeks later. 2 weeks after that I got an infection at my pacemaker(nearly died-gave me 48 hrs to live) so removed lead wires to the brain and pacemaker. That was April 1st,2012. Spent 40th b day in hospital. Sept 6,2012 was supposed to have lead wires put back in and pacemaker but came down with cold/flu(lasted 6 weeks thank god I didnt have ti done), was 15 min away from surgery when it was cancelled. Then had 4th and final for now brain surgery Nov 13,2012. Turned on a week later and neurosurgeon been adjusting it since. I go back tomorrow for re programming. I have had alot of side effects and no relief. I knew this going in and I m not syaing any of this to discourage anyone. I know ONS/DBS is NOT a cure, its a 50% chanc eof pain reduction. I know that it may take years or never happen for me but again....wiling to do this for the greater good. I am the 2nd in Canada 1st in Ontario and the 17th on the planet to have this done. What works for some dont work for me. What dont work for me may work for others. I keep a positive mindset it may happen one day for me. For me prayer works and has kept me alive and thanking god for each day I am here and each attack I get as it has made me the person I am today. My blog explains all of this if anyone is cuious. I have a blog specifically about my surgeries(scroll to bottom of page) with many photos of my brain with MRI, ONS and the wires in my head. I am here to shre my experiences not debate why I or you should have them or choices we make. Surgery is not for everyone and it certainly wasnt easy. It took alot out of me and I will never be the same ever. I know this and ok with it. I am a proud Canadian and very blessed to have 100% free healthcare. The only cost I encure is parking.
  18. I came on here to discuss,learn and speak more than just DBS or illicet drugs. This discussion is done.
  19. I ask initially you please respect my persnal choice for surgery vs busting. I am ONLY going to say this one more time. My body, my choice. Your body Your choice. I will never condemn nor condone anyones decision to do with their body so please dont suggest what I do with mine. I explain in great detail my personal choice on the subject. I am asking polietly please accept mine. There is ZERO chance if debate with me or convincing in anyway shape or form nor would I convince,convey or try to get anyone to do DBS. Its all personal choice. Leave it at that. thank you for understanding and respecting my views and opinions. God Bless
  20. Please read my blog www.clusterheadsurvivor.blogspot.ca and check out my youtube channe "ClusterHeadSurvivor" its kinda like drs tell you your sick but dont tell you how to live sick and it was the same for me....sir we are going to implant an electrode into your hypothomulous and............ But no one tells you that after surgery I was going to vomit blood for 5 days, no one tells me Ill feel like I got hit by a mack truck. No one tells me that the emotional feelings of people staring at your in public with 28 staples in my head. Or that the pacemaker will hurt. No one tells you this. Was it worth it? Honest answer...... Its been all back completely in for about 2 months roughly. I see my nuerosurgeon Monday for new programming. I knew full well it may not work or that as we discussed it has a 50% chance of pain reduction and that DBS is NOT A CURE. I knew this going into surgery. I knew I could die and get infection which I did and I was that 1% chance. I know the other DBS recipient in Canada. I know it may take years or never to work. But if at any point I get releif and it does become a medical fact that it works to releave 50% of the pain for Cluster Headache Survivors than it was all worth it. I am not just doing this for me but the greater good. I offered myself to be the guinea pig because I am personally dead against illegal drugs. I do not comdemn others for their decision nor do I condone it. Your body your choice. My body my choice. I wish everyone pain free days. God Bless
  21. thank you. There are 26 (at present) blogs on everything from my decision to do DBS vs Drugs to Elvis, to cars, to my life with the disease. I try to convey positive information in my opinion as its my blog. If I can help 1 person. Its all worth it.
  22. Hi, did some goggling and an d found this site, I enjoyed reading the main page. A brief and short synopsis about me I am chronic 7+ years. I have had 4 brain surgeries. I am the 2nd person in Canada and the 17th on the planet to have DBS, I am disabled, no longer work on Canada Pension. For the most part I do my best to help others and be proactive. I have a YouTube account channel called "ClusterHeadSurvivor" and here is my blog. Please read the entire blog and dont judge one blog. There is many many subjects. Nice to meet you and god bless
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