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Posts posted by ClusterHeadSurvivor

  1. Everyone is entitled to their opinion and I respect yours.

    In less than 24 hours over 100 people added me and agreed it was great. A lot of CB members are on my page.

    In no way shape or form am I to take anyones shinning light away. Not trying to dance at anyones party only make the party bigger.

    The more advocacy the better. If anyone ever asked me about "Busting" I would direct them tot hat FB page and or here...

    Funny, alot of CBrs messaged me and didnt even know I was a member/supporter here...

    Im always trying to think outside the box and spread advocacy to help others.

    The more we isolate it to one group , one site the less recognition we get.

    Suit yourself. I wish you well.

  2. As I stated, there is many and wonderful sites, forums but alot of them deidicate to medicine. Finding relief. Sometimes people don't want meds shoved down their throat.

    Perhaps just a friendly hello how ya doing.

    I m not as I stated trying to take anything from anyone.

    The more we isolate to one site one way of think the less people find what they are looking for.


  3. as much as I LOATHE facebook and refuse to submit myself personally to it I often find people asking me why not...ut fellow cluster heads. Or if there is a good article on CH I can not read it as its posted on FB,

    So yesterday I started a FB page on Cluster Headaches

    Its for people feeling down ,needing some uplifting support not a medical help support. There is many of those.

    There is no personal information to me and I did not make it to find old friends(high school etc).

    Its soley for us cluster heads,migrainers, and DBS recipents.

    I do not offer nor accept medical advice on medication only warm friendly hellos.

    I applaud those that are doing the med help and I didnt make a FB to steel their thunder.

    Feel free to check it out

    I am very very very new and still confused how it works.

    It make take me some time to finese it.


    ClusterHead Survivor ( space in between last word)

    or clusterheadsurvivor@rogers.com

    I know you can search by email

    thanks very much.

    have a PFD

  4. If it were 10 hours for me i would go and sleep in my car if not in a CH cycle but its more like 40 hours for me lol

    Hope u get to go....   stress is a killer EH

    Did u start off Episodic CH ?

    July 25. 2005. It started chronic and still is, even after 4 brain surgeries. They have subsided a little but it has to do more than just the DBS, it has to do with having an incredible wife and son, not working anymore. Alot less stressors in my life...which helps alot.

  5. The CH conference is in Nashville. Id like to go but even the 10 hour drive for me of fuel, hotel is near impossible to afford.

    I feel for ya Rob and understand 100%.

    Not that CPP disability is alot to live in but the burder of worrying how to eat will be much less.

    Less stress, less attacks

  6. Thanks. I waited 9 months for them to call. But when they did. Pretty quick.

    Yeah I been told I am a bit of the poster boy or atleast one of them. My one video has 216,000 views. My dream is a million one day. More awareness we spread the better.

    It's not just me it's all of us together spreading awareness. I am just one person. Everyone's support is needed

  7. well CPP disability is federal and I am on it as proof. But I am chronic....you can direct them to my blog and videos.

    When I spoke to disability she said what is it? I said google it...dont see my blog or videos because that is biased. Look at others who I do not know. She said thats fair. She said Ill let you know in 2 weeks/.....2 HOURS later she called me and said Oh Mr.T I am soooo sorry you have this. APPROVED.

    Yes no need to hide it...we can't change we have it.

    No cure. We just need to be positive and move forward and think outside the box...

    Let me know how ya make out...eh

  8. Thanks Eh.....i have been pain free from cluster for 1.25 years...this will be only the second time i have had over a year in remission....but my cycles are lasting twice as long..grrrrr.... am i transitioning into chronic? thats a big move eh?.....Ive never been out to ontario...but have some friends out near niagra falls...do u miss vancouver?

    I was 4 when I moved so I had no say in the matter. I went back for a visit when I was 25. I remembered quit a bit in fact. As absolutly beautiful as BC is and my wife lived on the island to in her younger years we would never move. My son is here and nor would I relish the fact my house value is worth a card board box in Vancouver.

    Do I miss it? Sorta. I see it on TV and think wow would i love to move. Then I look at my son and think Id never leave him. We are close.

    Disability here in Ontario pays me $706 a month.

    I dont want to be homeless in BC to live there because $706 a month doesnt even give me a room to rent.


  9. I get attacks witin minutes of working out. Now if I do go....treadmill only. Since my operations I have gained a hundo. Also the fact I sprained my left ankle and broke my right hand unable to do anything but hop for 5 months so I sat on the couch, quitting smoking snacking no excercise and voila the weight.....:( and all the fat jokes started.


    Id love nothing more than to go on a reg basis but getting attacks at the YMCA is not only humilating, embarrassing and painful.If I got an attack id go to my car

  10. If your referring to CH.com that was me, IM no she. Im a he.lol

    I asked if anyone could get a second nuerological disease.

    Some people/person misunderstood and thought I asked if CH could give you another nuero disease. I was NOT asking that...I asked if anyone had heard of anyone suffering another nuerological disease as well.( Parkinsons or ......)

    If it was another board then please accept my apology but I did ask that question on CH.com

    Myself.  have CCH,Migraines,Tension Headaches, exzema, Irritable Bowl Syndrome...

    I have passed along to my son Migraines and Tension headaches and praying he does not get CH because he has Elhers Danlos Syndrome (EDS)

    Thanks Moxie...great question!

  11. CHS - so glad you are in a happy relationship now, and your son sounds AWESOME!

    I made a rule 7 years ago when all this Hell started, that I would never lie to anyone about my headaches. I get so many, and have had to cancel on so many events at the last moment, I didn't want anyone to ever think I didn't want to go, so said I had a headache as an excuse to get out of it. Everyone who knows me, knows that when I say I have a headache, I'm serious. And generally, it is something of the level or intensity they can barely conceive of.

    I've found that approach to help me, and those around me, a lot.

    Happy New Year to everyone, and Pain Free wishes all around.

    xx MG

    I was married to my 2nd wife when I got sick...and like I wrote above,we know how that ended.

    During my single days/dating I would either flat out tell the girl or hide it. Once Id have an attack I was F8cked. I had to tell. Then others I would spill my beans and the girl would say....sorry can't deal with this. It was a very cruel and dishaeartening time in my life.

    Then...I met my wife. First date I said...I have something to tell you...and so did she...I said Im sick with CH. She said I am bi polar and in recovery(almost 5 years clean). I hugged her and said finally...Honesty. She was floored I didnt jump on my Harley and ride away as I was. She asked why. I said I hate/loathe drugs and you had a problem,recognised it and did something about it. Respect. As for the Bi Polar. Her nick name to me is "Polar Bear". Because we all have issues.

    She accepted my chronic headaches watched me have 4 brain surgeries and never ran away. And I support her recovery (now 8.5 years clean).

    It was not an easy road. Many many nights I got a blank look telling women I was sick. They either didnt understand the disease, didnt want to be held liable for whatever or scared off. Or for whatever reason. IM glad they told me upfront no thanks. I lost 99.9% of my friends too.

    I am soooo grateful for my wife and son. I would have cashed out along time ago if it wasnt for them

  12. I am so sorry this is happening to you, happening to us.

    My son was 7 when chronic clusters started for me.

    Anything over a kip 7 and my son said " daddy please don't die". He really thought I was dying because I was screaming on the floor, ramming my head into drywall or ripping the head board off shaking it uncontrollably. Forming a thought is not possible. Id have to wait until the attack was done.

    My ex wife said to me on numerous occasions"I can't deal with this sh*t and slam the bedroom door and leave. Man am I happy we split....She was not biological mother of my son and since my boy was age 2 I have had 50% custody since day one and most years had him more but whos counting. Today my son is 15 and just as much as an advocate as I am.My attacks don't even fase him , if the words uh oh come out he jumps up and says dad what do ya need? no questions asked. My new wife is incredible and is so amazing. Countless nights woken her and my son up to go to school and work and no one ever complains.

    Best advice....educate everyone...

    Hang in there...there is n magic potion or commonality for us. We all have our own version of attacks,mild or bad.

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