s-pot Posted July 9, 2012 Report Share Posted July 9, 2012 Just wondering if others have noticed any particular pattern/frequency to POT's flares?I have pretty much been having flares every 8-10weeks since my diagnosis well over a year ago now...was on midodrine for 12 months and had constant symptoms (and horrible side effects!) between these flares.Started Florinef about 10weeks ago which has been an absolute dream and you could pretty much say I have had very little to no symptoms. Had to pinch myself most days to believe I felt as good and energetic as I did.Now here I am 10 weeks on again and another flare up. I know it will pass again....it just feels pretty rotten seeing as I had realised what feeling normal was like again! Back to the dreaded dry wretching, dizziness, horrible fatigue etc etc for another few weeks!Just wondering what's triggering the regular flares....its like my body decides i'm getting too comfortable with the 'well feeling' and decides its time for feet up!!! Grrrrrrr! Quote Link to comment Share on other sites More sharing options...
puppylove Posted July 10, 2012 Report Share Posted July 10, 2012 I don't really know what triggers mine but this is the pattern- a few days feeling eh. Some symptoms but I can get off the couch. I usually don't really go anywhere though. Then I probably once every two weeks I get a day where I can't do anything, and feel awful. Sometimes two or three days. Then I might get a good day where I can do stuff. But then back to not so good. I guess mine is kind of weird because it's really a day to day thing. I never feel better or couch bound for long periods of time. Sorry your having a flare. Hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Alaska Posted July 10, 2012 Report Share Posted July 10, 2012 seems one big trigger is a few days with very poor sleep, like going on vacation with an overnight flight Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 10, 2012 Report Share Posted July 10, 2012 Every three years or so in summer time it seems to come back out of the blue virtually overnight. 3-4 months severe then it slowly gets better over the next 4-10 months. before relapses I always get peripds where I am virtually symptom free. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted July 10, 2012 Report Share Posted July 10, 2012 I'm curious guys is there any signifance of relapsing/ remitting and chronic symptoms as far as etiology? Quote Link to comment Share on other sites More sharing options...
Relax86 Posted July 11, 2012 Report Share Posted July 11, 2012 Both of my relapses occurred the week after New Years - 2009 and 2012. Didn't have a cold, flu or virus. Was tired from holidays, too much family, eating bad crap and probably drinking a little too much. However, same holiday experience in 2010 and 2011 without POTS flare. 2009 symptoms were moderate for about a week, then concerning/mild for another 2-3 months, and manageable by late August. 2012 symptoms landed me on disability for a month, then part time for 6 weeks, I returned to work still very sick and thinking I wasn't going to make it but slowly improved with small relapses....today I feel about 80% better. Today was a good day so that's my perspective. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 11, 2012 Report Share Posted July 11, 2012 Relax - sound quite similar to my own experience. Quote Link to comment Share on other sites More sharing options...
s-pot Posted July 11, 2012 Author Report Share Posted July 11, 2012 hmmm thinking back on the last couple of weeks now......erratic diet, missed sleep, busy/stressful workload at work AND I was feeling so well with the Florinef I went out a couple of nights and had a few drinks over the last 2 months which i really had not done much of for the last 2 years.Seems any additional stressors on the body is enough to kick it all off! Its soooo hard to keep life so structured and organised all the time around POT's .I reckon my 'pattern' for relapse is I relapse...feel rubbish...make a great effort to keep routine, good diet, sleep etc etc, start to feel well again, let it slide a bit and BANG back to the start! Suppose I gotta work a lil harder at keeping this on a level...shift work DOES NOT help matters.Nothing is worth this feeling like ive bin Run Over by a Truck!!! Quote Link to comment Share on other sites More sharing options...
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