canuck Posted January 22, 2014 Share Posted January 22, 2014 Im new to this site but not new to cluster Headaches...id like to meet another clusterhead one day.....are any of you near Kelowna BC Canada. I have recently been diagnosed with fibromyalgia...and am curious to see if anyone else has this nasty combo? Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 22, 2014 Share Posted January 22, 2014 Hello, I am canadian as well orig from Richmond now in southwestern Ontario. eh.... I do not have fibromalgia. But have other things I survive. Hopefully you have pain free days ahead. Quote Link to comment Share on other sites More sharing options...
canuck Posted January 22, 2014 Author Share Posted January 22, 2014 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? Quote Link to comment Share on other sites More sharing options...
canuck Posted January 22, 2014 Author Share Posted January 22, 2014 Has anyone else had the BEAST switch sides..Mine started on the left side for 6 years then to the right for 10 years Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 22, 2014 Share Posted January 22, 2014 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. . Quote Link to comment Share on other sites More sharing options...
canuck Posted January 22, 2014 Author Share Posted January 22, 2014 Ya Prices are ridiculous out here and in Kelowna Too....I just shared your documentary on fb....im just now after 16 17 years trying to educate myself and others of ch...im tired of feeling ashamed of myself and have lost the energy keep fighting... and myself now am applying for disability even though i am an episodic sufferer, i also have a dead anklebone and destroyed joint...i have been waiting to see if i Qualify for disability and just now found out about the fibromyalgia...its hard to get by on bare bones eh i truly hope u have some support out there Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 23, 2014 Share Posted January 23, 2014 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 Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 Ive been waiting 4 months to find out....cpp is harder to get i am on provincial aid....BIG thanks for what u r doing for the CH community eh!!!!!!! I would like to be a Ginnie pig for CH research...but all the trials seem to b in American cities Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 23, 2014 Share Posted January 23, 2014 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 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 23, 2014 Share Posted January 23, 2014 Hey Rob, just to answer your questions, a recent big study showed that CH switches sides in about 30% of people with CH, and it seems people's cycles often get longer over the years . . . doesn't mean you're becoming chronic. How are you treating your CH? You have oxygen? Tried the D3 regimen? (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804) Licorice root? Busting?? Energy drinks? Melatonin? It would great if you could find a way to make it to the 2014 conference, where you'd meet lots of great people who have CH. Here's a photo from the 2013 conference:  Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 23, 2014 Share Posted January 23, 2014 Hey Rob, glad to see you're getting the questions answered, but SAD to see you have both CH and fibro, which according to my calculations is just about.......THE MOST ROTTEN COMBO IMAGINABLE! > :'( At least you're not chronic though. That's an extreme biggie. A common, but by no means guaranteed scenario is for the episodic CHer's remissions and cycles to both become extended after the decades with CH have shot by, and for the attacks to become more severe. It does burn out with age for some. This is mostly based on what I've seen others report, and my own case, not hard statistics (although I did see some legit statistics at one point about the burnout). Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 Thanks ch father and beejeeber and ch survivor ...I had only used triptans oral untill last cycle i tried o2 But was AFRAID so i ended up taking pills and o2....and for my next cycle i will have imetrex for the first time....I try and take magnesium and melitonin... and doc give verapamil I have not tried mush or busting????... is hard to find and costs more than FREE triptans...in chronic ch is there really 0 remission time? I cant imagine what it is like to NEVER get a break from the beast....I really feel for all you CHRONIC sufferers :'( Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 I would love to go to the conference but i am dead broke...I wanted to go last year too...i have lost job after job and my employers wont give me references because i missed to many days of work with ch ankle and fibro to say that life has been a struggle is a huge understatement....where is the conference this year? Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 23, 2014 Share Posted January 23, 2014 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 Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 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 ? Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 23, 2014 Share Posted January 23, 2014 I try and take magnesium and melitonin ..and in the realm of supplements you might also wanna seriously consider the D3 regimen CHf mentioned. Heck, seriously considering EVERYTHING CHf mentions is always a good plan, he brings the goods. ;D Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 D3 I will check it out for sure and anything any of you suggest ...I hope that mush lsd will stop my next cycle...just gotta find some///is that called busting? Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted January 23, 2014 Share Posted January 23, 2014 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. Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 Im glad u have a great family and are able to keep your stress down.....Im trying to do the same ..its hard when i seem completely normal to other people most of the time...and people including my friends and family have certain expectations for my life....and was ridiculed for quitting my last job and taking time to unwind...is it foolish for me to think that others can really understand? Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 I just checked out the vit D3 regimen...I would be interested in doing it....how much will it cost for all those supplements? Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 23, 2014 Share Posted January 23, 2014 ...mush lsd...just gotta find some///is that called busting? Yep, that is definitely referred to as busting.[smiley=vrolijk_1.gif] is it foolish for me to think that others can really understand? Just based on my own experience, I'd say yes. :D Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 23, 2014 Share Posted January 23, 2014 Rob, the initial layout for the D3 stuff is not small ($50???), but the cost on a daily basis is maybe a dollar or two. Consider licorice root, too: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 An energy drink (Red Bull, Monster, etc.) that you drink as soon as you feel an attack coming on can sometimes abort an attack, or at least make it less severe. How much melatonin are you taking? Some people here get up to 18 mg. or more at bedtime. If you are interested in busting, you can do it with seeds (rivea corymbosa seeds, or RC) that you can buy legally (it's illegal to convert them into the substance used for busting, but it's very very easy to do so) and don't cost very much. But . . . am I right in gathering that you're not currently in cycle? I'd encourage you to stop worrying about becoming chronic, get your whole arsenal ready to treat your next cycle, and work on prevention (the licorice root, energy drinks, and melatonin are more things that people do when they're in cycle). D3 has been a good preventive for many people, and so has verapamil, and so has preventive busting while out of cycle. Nothing seems to be a miracle treatment, and certainly nothing is a cure, but if you keep trying you're going to make it a lot less hard on yourself. I'd also encourage you to read the CB oxygen file that's under the "MENU" tab on the left side of the page and make sure your oxygen system is working as well as it should. Quote Link to comment Share on other sites More sharing options...
canuck Posted January 23, 2014 Author Share Posted January 23, 2014 Thanks CH father.....I really appreciate your support...You are correct in assuming i am out of cycle....i will gather an arsenal....Can i get the RC seeds at a health store? will this stop my whole cycle? How do i covert into active ingredient... i will try energy drinks too....I only have been takeing melitonin and magnesium casually on occasion .... Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 23, 2014 Share Posted January 23, 2014 RC seeds help stop or prevent cycles for a lot of people. You can buy them from www.tranceplants.net, which is a Canadian company. The preparation is to grind them and then soak them in water. When you get closer to doing that, check back for details. To be clear again, preparing and drinking them is against the law. A typical dose is around 60 seeds. People do preventive dosing at different intervals -- some every month, some less often, some just when they feel the first signs of a cycle coming on. When you're in cycle (and, yes, many people do go into cycle even though they've been doing preventive dosing), you might need several doses to treat your CH. Most people don't like to keep them too long because they're no longer fully fresh after a few months. Quote Link to comment Share on other sites More sharing options...
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