Mamawithpots Posted March 23, 2014 Report Share Posted March 23, 2014 So, from what I gather Pots is kind of a "in it for the long haul" condition. Is that right? Or does it go away for some people? My cardiologist keeps saying that after my baby is born Pots will go away, (My symptoms came during this pregnancy) as if it is highly likely. But that is not the feeling I've been getting around here. Do you know anyone who is free of Pots after they've had it? Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted March 23, 2014 Report Share Posted March 23, 2014 A lot of young people grow out of it eventually. Or, it gets less severe and they learn to manage it better. I'm not sure about when you develop symptoms during pregnancy. Plus, every person is different.For me, I am fairly young, so I have that going for me. However, I am also facing a possible diagnosis of EDS, which might make recovery slower or make the disease more long-term, though I'm not certain... Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 23, 2014 Report Share Posted March 23, 2014 The conventional wisdom has been that younger people and those with a post-viral onset will tend to improve over time. I'm not sure about pregnancy onset as I haven't heard any statistics on that.Remember that people who have recovered are not hanging around on these forums...they're out living their lives so it's unlikely you'll see them on here. Those of us who are still hanging on here are the ones who haven't recovered over time or who are still relatively new to the diagnosis. The other thing is that even people who have said they were POTS free or recovered have sometimes come back several years later to say that they have had a relapse.On the other hand, there are a lot of folks who are now living full lives and while maybe not POTS free, are able to manage their symptoms to the point that they no longer consider POTS a major issue. The founder of this website is one such person. She moved on a few years ago as she had so many other great things happening in her life that she no longer had time to maintain this DINET site. So yes, there are a fair number of people who have recovered to the point that they aren't bothered by symptoms much, if at all, on a regular basis. Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 23, 2014 Report Share Posted March 23, 2014 Yet there seems to be not enough long-term data available for the possible outcome of POTS patients. Some experts in the medical community do emphasize this repeatingly.Another aspect I sometimes think about personally: How can we know whether we didn't have POTS in a very mild (=symptom free!!) form long before we ever got diagnosed? Maybe, we can eventually return to a symptom-free condition, but would still show up POTS-signs on a TTT? I for myself would really like to know how I would have done on a TTT 10 years ago... (when I didn't feel sick at all!) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 23, 2014 Report Share Posted March 23, 2014 I basically developed POTS during pregnancy. Looking back, I had symptoms prior to, but never was diagnosed with anything other than anxiety (which never had made sense to me). I knew there was something else "not right" but it was never significant until pregnancy.My symptoms did improve greatly but it took about 10 months post partum until I was ready to work and have a fairly "normal" lifestyle again. And I still have flare ups. But overall, I would say I am recovered. But b/c I had such significant problems with pregnancy, I chose not to attempt a second pregnancy, since my family relies on my income heavily. We could not afford for me to become disabled again--and I was also concerned that a 2nd pregnancy could be harder rather than easier. And I had also had serious complications during labor (probably unrelated to POTS). There were too many unknowns for me. So while I would say I am recovered, I guess my point is that POTS greatly affected the course of my life. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 23, 2014 Report Share Posted March 23, 2014 I totally think it depends on the cause. POTS is not a disease in itself, but a symptom of the underlying problem. For instance, one of the main POTS researchers found that in some of his adolescent patients with NMH, he found they were anemic(it wasn't a straightforward diagnosis). I am assuming if you correct the anemia, the POTS becomes a non-issue. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 23, 2014 Report Share Posted March 23, 2014 I think it is too broad of a subject to pin down. I would stay looking at the bright side, and figure on improvement. Quote Link to comment Share on other sites More sharing options...
Mamawithpots Posted March 25, 2014 Author Report Share Posted March 25, 2014 Thanks guys. I feel like there's not much info out there on this particular subject, and I appreciate your help :-) Quote Link to comment Share on other sites More sharing options...
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