jangle Posted January 22, 2012 Report Share Posted January 22, 2012 i wish exercise protected me against relapse. Despite what some might say it doesnt in my case as I was running 5kms three nights a week the week this relapse came on.Did you see the new Levine article? http://hyper.ahajour.../58/2/167.shortI won't share my more descriptive thoughts and language on this, but I am shocked the AHA published it. Excercise can cure us all because we ALL have small hearts. Yeah right. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 22, 2012 Report Share Posted January 22, 2012 Maybe you should write a rebuttal and get it published. LOL I am actually working with another POTS patient who is a lawyer on that very thing. We are trying to enlist a few specilists as well. We'll see what happens! Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 22, 2012 Report Share Posted January 22, 2012 i've been battling DYS for over 9 years, maybe more...... Since i have been left unfound and untreated, except for in the last year..... i have progressed worse each year, with more flares, more relapse, and increase in severity........ we are trying anything and everything under the sun, but to no 'real' progress.... just small progress here and there...... im a fighter by all means..... but no matter how hard i fight, the worse i get..... i haven't had any remissions since oct 2009.... and i struggled through school and work for the 2 years previous with each year getting worse.....I'm the only one i know in my area with what i have, so i have no clue as what to expect...... I know i have always felt sickly and weakly since i was a child.... but i have an extremely high ambition where i push myself to the extremes....... but since i came down with mono/carbon monoxide poisoning in 2002.... ive went downhilll since never, ever an uphill Quote Link to comment Share on other sites More sharing options...
Trach Posted January 22, 2012 Report Share Posted January 22, 2012 I have to tell you one of those "small world stories"....when our small group of Texas Children's parents and patients had our first meeting at a pizza place in Houston, our waiter overheard our conversation about POTS. He told us his best friend in high school had POTS approximately ten years ago. She was very sick during high school, but thankfully her father was a doctor and figured out her diagnosis quickly. Our waiter described his friend's pain, frustration, and isolation during those years.Gradually after several years, the waiter's friend improved. She started college part time a few years late. Eventually, she graduated from college, works full time, and is symptom free. I cannot tell you how much we all needed to hear that story. I wish you could have seen the look on our kids' faces - priceless. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted January 22, 2012 Report Share Posted January 22, 2012 Jangle,Thanks for looking up the stats in that article. I was cyclical at first with my autonomic neuropathy where I had two periods about a year apart that I felt better and could work again, but about 4 years ago I went down again and have stayed there, adding new diagnoses to the mix every so often. I'm ready to have a recovery period and stay there - and get back to work. : ) Quote Link to comment Share on other sites More sharing options...
songcanary Posted January 22, 2012 Report Share Posted January 22, 2012 Hilbiligrl,I cannot believe that you mentioned carbon monoxide poisIoning! I had that too, in 1997, and I had apparently had it for two years before we got a CO detector in the house, and then all my symptoms at the time made sense. I was a bird breeder then and I was losing babies but the necropsies were always inconclusive. It totally broke my heart to find out I was hurting those little birds without knowing it. I always wanted to do the right thing and I feel terrible about it to this day. I never really recovered fully and got real bad with dysautonomia a few years after that. It always made me wonder if that was my initial trigger. That and some seriously horrible stress. I guess once the bucket spills over, that's it...Sorry to hijack but this hit me smack in the face. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 25, 2012 Report Share Posted January 25, 2012 I don't know if he's still taking anything, or even if he has "completely" recovered, but Greg Page (the Yellow Wiggle) is about to resume touring with the band. He has "recovered." Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 25, 2012 Report Share Posted January 25, 2012 Yeah the kicked out poor old Sam Moran. I recovered yesterday for about five hours on saline LOL Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 25, 2012 Report Share Posted January 25, 2012 My pots started in August 2009 at the end of my pregnancy. It was the worst ever from sept 2009 to February 2010. For no reason what so ever I began improving in march 2010 and by fall 2010 was 75% well. I felt pretty good till July 2011 and then one day got severe dizziness, again, for no reason at all and then gradually went down hill over the next few months to where I am today which is pretty bad but still not as bad as when I first got it. Mine is like Rama in that I have flares but I'm never completely well. Even when I was feeling good in 2010 I still was exercise and heat intolerant and still had episodes of bad tachy. I just no longer had the orthostatic intolerance. Hopefully we will get this thing figured out and we will all be better one day Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 25, 2012 Report Share Posted January 25, 2012 Exactly! yes mine does follow that course as well. Quote Link to comment Share on other sites More sharing options...
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