k-bo Posted August 8, 2012 Share Posted August 8, 2012 sorry for the lack in terms, can someone start out as epi & wind up Chronic? And is this something we are stuck with for life, or do they tend go away after a while like they came on? Mine are all screwed up this time, making me nervous. Getting all random hours this cycle rather than close to the same time every day. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted August 8, 2012 Share Posted August 8, 2012 k-bo, Episodics can go chronic and chronics can go eposidic at about any time. No real reason or understanding why is all I've read. The jury seems to be out on the question if our condition ever goes away. From some of the "old timers" on the board you can see it's not BAU to out grow CH. I've read several times that the incidence of attacks go down at some point, but that could just be flawed data, with people not reporting attacks as they get older and just deal with their CH instead of telling their docs etc. I know my pain levels went up as I got older right up to the point I found this website and started taking seeds / mushies. (42 years young.. ;D PFW, Jeff Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 8, 2012 Share Posted August 8, 2012 what jeff says about going from episodic to chronic is true. but i would not let a screwy cycle scare you: lots of people have them, and it doesn't mean you're becoming chronic. ch might be something you're "stuck with for life," as you say, so figuring out how to bust it is essential. and at the same time, there's also other stuff out there being developed or tested that will make ch a lot more manageable in the future, so that what you're "stuck with" today is not going to be the same as being stuck with it in the future. maybe even BOL-148, one of these days. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted August 8, 2012 Share Posted August 8, 2012 What those guys said! You got enough to worry about right now without introducing worry about the possibility of going chronic (I know it's the ultimate worst case scenario for us episodics to contemplate)! And from my experience and well over 1,000 reports I've read from other CH'ers, I can tell you that although it's common for CH intensity to ramp up over the years, it's just about as common for the remissions to mercifully extend longer and longer. You might have to just go a couple decades with CH though to see whether the luxuriously long remissions will kick in. Also it may be good to keep in mind that (according to my unofficial observation) there is a much higher percentage of CH'ers who have become chronic at one point participating on this message board (many of them former chronics due to busting success ) than there are in the general CH population and on the other CH forum. I figure that's because busting is about the only reasonable thing offering relief to chronics right now. And let's not forget CHfather's message of hope about the very real likelihood of more and more improved treatments for CH coming down the pike, especially the possibly silver bullet-ish BOL-148! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted August 8, 2012 Share Posted August 8, 2012 Advocate for thyself. Quote Link to comment Share on other sites More sharing options...
k-bo Posted August 9, 2012 Author Share Posted August 9, 2012 thanks for the info! This whole time I thought I was going to "grow" out of them =(. I did start taking the advice on taking the imitrex shots apart and splitting the dose, what a difference in the way I feel after & cost saving. IT'S A MIRACLE! no madder how small ;D Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted August 12, 2012 Share Posted August 12, 2012 Hi K-bo, I can't answer your imitrex question, have never used it. But thought I'd add (just a little) to the already wonderful comments above about going chronic. I believe, if I remember correctly, that the definition for being chronic is something like having gone 1 year or longer with no remission periods. In 2010, I had a mere 63 clusters, and my cycles were pretty much 2-3 weeks apart. At the start of 2011 I went chronic, and had 258 clusters that year, getting 1-5 every 2-3 days. That lasted a year and a bit, untl I started busting. Since busting, I've had PF gaps of 20 days or longer, and I rarely get more than 2 in one day. Am now on my 3rd course of busting, hoping to finally put the demon to rest. So hang in there. There are solutions. You just have to find the one that works for you, and perhaps educate your doctor along the way. Renee Quote Link to comment Share on other sites More sharing options...
Hipshot Posted August 12, 2012 Share Posted August 12, 2012 Haha, speaking of educate your doctor... I went to my family doctor a few weeks ago. I had been feeling bad and thought perhaps I had low blood sugar, which I did. In discussing my situation this genius doctor said perhaps I was feeling poorly due to:.... Drumroll.... "you may be withdrawing from the mushroom roots you have been taking" ;D ;D ;D Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.