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Posts posted by ClusterHeadSurvivor

  1. I lost the list and lost count of all the drugs..prescription that is.

    I include 02 in that list.

    chiropractor( gave it to me free as he vowed it could cure me. However as bad as my headaches were. My back felt great)


    Nerve Blocks

    Freezing in back of head.

    Red Bull (puke), Coffee, high caffeine drinks.

    Aleve 2 gel capsules per attack.

    There is more but I have forgot so much over the years.

    Brain Surgery #1 Occipital Nerve Stimulation

                       #2 Deep Brain Stimulation

                       #3 infection-DBS Removed

                       #4 re installation of DBS

    At this point, all efforts had failed.  had tried ever known medication available to me here. Nothing worked.

    I was suicidal for 2nd time...But in a much better head space 2nd time around....

    Then I "Busted".....

  2. A very special shout out to Jonathan Torrens. aka JRoc from Trailer Park Boys and he also plays Vice Principal Robert Cheeley on CBCs Mr. Dee and did Wipeout Canada ! Jonathan Torrens does a pod cast with Jeremy Taggart the drummer from the band "Our Lady Peace". The pod cast is on about Canadianity ! Halarious podcast. Celebrating being Canadian. [ch8234]#[ch8206]Bahd[ch8236].

    at 11:35 min to just about 16 min, they discuss Cluster Headaches and my story......have a listen [ch8234]#[ch8206]TnT[ch8236]

    choose episode 31

    also on iTunes (free) epsiode 31 I Tunes will upload soon for now use soundcloud

  3. So a FB friend from Germany sent me this....

    Andrea from the Netherlands and Peter from Belgium and me are in this documentary.

    If you speak german. Great. Sadly I have lost my german.

    But to see CH on TV for 14 min is astonishing !

    CH is affected on every continent. Language holds no barriers.

    Fast forward to 17 min 24 sec


  4. Sorry I disagree Moxie, but we are all entitled to our opinions and I respect yours.

    I broke 6 bones in 6 weeks. All 6 combined wouldnt be a kip7.

    I tore all the ligaments and tendons in my ankle. now that friggin hurt. That might be a kip 7.5.

    I had brain surgery and the pain after felt like a truck ran over me in recovery. that hurt as well. Maybe, a kip 7.75.

    I know women who said they would rather have child birth every single day of their life without anesthesia than have 1 attack.

    I personally would rather have the most severe migraine for the rest of my days alive than a kip 8 or higher.(I hae chronic migraines and tensions too).

    I spoke to a CHr who shot himself. Said it was nothing compared to a CH.

    to me....its all about personal experience and journey than we go through. How one deals with the disease, how one perceives it. How one copes. Myself....no other pain I have had in my life from hitting myself accidentally with a hammer to breaks,sprains, cuts and bumps even compares. To me, its the worlds most painful disease. Even my close friend with TM will concur.

    Everyones potion of CH is different too. Some are worse and I dont claim to be the worst or had the most.

    But the mere fact its even suggested as the worlds most painful disease should raise enough eye brows for eople to think hey this is some serious stuff.

    Myself.In my lifetime, No surgery, no cut,tear,break or any other injury or migraine have I ever even considered suicide yet I planned mine for CH.

    • Like 1
  5. MoxieGirl.

    Wow, this thread hit home for me in more ways than one. I am not sure if you are aware but i write a blog about my life with Cluster Headaches.

    The affects of CH has caused me to loose my closest of friends and while others tell me to "get over it", I can't help feel like that brick wall around me with no way out.

    The weight gain (105lbs) not a typo. Has been devestating. whether i blame 30 days in a hospital bed,quitting smoking, eating crap, using a cane for almost 3 years and hopping on one foot for 5 months, whatever the reason. I am not whom i once was. inside ad out. When people I run into walk up to me and say "Holy f*ck, how did you let yourself go?" "Wow you look like crap", its does a number on me emotionally.

    No matter how many times I wake up and deal with this brick wall , I look at my son and wife and think I have to climb this wall for them....for myself....and hearing about another CHr puts it all into perspective. A CHr who took their own life. Because of CH. I too been in that dark place where suicide was my only option. It sucks. I got lucky and got out.

    In Feb 2 Chrs I know about committed suicide. In the same week a friend of mine died of cancer. So instead of complaining,I know someone took their lasts breaths. So I should use mine being positive,uplifting, and try to either help someone in my day or educate someone in my day. That gives me purpose.

    I can totally relate to your post Moxie....just remember. Fall 7x. get up 8

    Love ya, PFW

  6. Please share my video or Dans video or any CH video with someone today who knows nothing of this disease.

    My advocacy work has never ever been about me. Its about US.

    Until we ask 1000 people at random what CH is and get 1000 informed answers, then we all must do our part and educate those.

  7. Hey brother, I had DBS as well. I was the 2nd in Canada to have it done here.

    After 2 years of programming. Most I could take was 2.7 Volts or room would spin and Id fall over I shut it off.

    I did not try anything while my DBS was on. Simply because it would falsify any data.

    Last June/July was the worst of my "Cluster Career".

    I was just about Suicidal once again. However luckily I was in a different head space at the time with stronger faith and stronger family(now married).

    So I "Busted" and after my 3rd dose(the 15 day rule). It worked and been dosing every 2 months and been having great results.

    Sadly from DBS, alot has happened. PTSD, total abandonment from friends, and an aray of side effects from DBS. I have never been the same since. Nor will I ever be.

    I hope you get relief my friend. Whatever works to be free from the beast I support.Pain free wishes to you and all of you.

  8. The shear Irony of my dogs name "Buster", was that when we rescued him from our lawn left for dead over 2 years ago. I asked God, what should I name him? Buster he said.

    At that point in my life I was a supporter of ClusterBusters but had not Busted. In fact I found him the day I came home from brain surgery.

    I remember telling Dan(Hipshot) his name and he said I knew I loved you and only after I busted I saw the irony....lol

    As for the TV segment. A few of us around the world have been on TV for CH. Dan,myself,A fellow from Australia and maybe some others. I am NOT sure how they did it but for me, it was a very long struggle, I tried for 2 years straight. My goal was CNN in 6 months. Whether they interviewed me or another CHr. didnt matter to me. Its never about me. Its about CH and airtime. Yes my news was local. Meh for some.

    But it got airtime. I did this for US.Not me.

    I did it in memory of those who lost their battle or to weak to speak or too afraid and I have had those contact me thanking me as they live in fear.

    My moto: One more educated person on CH is one less survivor living in fear.

    Please share this video with friends....


  9. http://london.ctvnews.ca/video?binId=1.1137524

    Fast forward to 13 min 30 sec...just get past commercials at beginning.


    My local news ame to my home, interviewed me for an hour. My wife, son and put his car. Also they interviewed my neurologist. All had to be condensed to 2 min. I did discuss MM and 4 brain surgeries but have no control over edit process. I am just SOOOOO happy that "CH" got airtime. 2 min which is a ton in TV land.

    The first link is best if you can sit through the 2 commercials and fast forward to 13 min 30 seconds. It shows my beautiful wife and son.and my dog "Buster"

  10. Brian and family....I was PESTERED by his team of shenanigans for months to come and get his "cure".

    I still get emails with his claims....

    hey, if it worked for whomever great. Im happy some got relief.

    As far as I am concerned....I am done with surgery.

    Ill stick with what works

  11. Best Christmas Present I have received is reading on here and FB that people are pain free. For whatever their treatment it that works, it doesn't matter to me only that they have relief!

    Blessings everyone and PFW for 2015 !

    I think this year will be monumental for everyone

  12. I have had IBS(frequent flyer) since I can remember. I got CCH at age 33. I have been asked if I think there is any correlation. Personally I dont think so but I could be wrong.

    I just know I go through hell when I have to detox for my next MM dose. I take a blocker that significantly helps my IBS.

    Thanks for the post! Great read

  13. Paying it forward

    Win tthis book "LuckyMan" by donating to https://www.michaeljfox.org/ & www.clusterbusters.org help find cure to 2 both diseases


    I will mail this book "Lucky Man" by Michael J.Fox and a 'Cluster Suicide Headache."decal to 1 person anywhere in the world.(1 book,1 decal only)

    Just submit your name and address to my inbox.

    Make a donation to www.clusterbusters.org and https://www.michaeljfox.org/

    and be entered to win. Donate what you can afford.

    All 43 entries from last draw are pre entered(no need to re enter)

    I welcome all new entries.

    Draw is December 10,2014.

    Winner will be shipped this book and decal at my expense.

    Please post a photo of the book and you with the decal on your vehicle on your profile.

    Best of Luck to everyone. Merry Christmas from us to you and God Bless


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