sue1234 Posted March 14, 2013 Report Share Posted March 14, 2013 I saw a paper recently published, but was only able to read the abstract. It basically said what they all do, however, at the end the doctor states that he discusses his "thoughts on future research needs" for POTS. If anyone out there can access this full paper, I'd love it if you could come back here and say what he thinks needs to be looked at in the future!http://www.ncbi.nlm.nih.gov/pubmed/23465770 Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 14, 2013 Report Share Posted March 14, 2013 I'd love to know too. Anyone? Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 15, 2013 Report Share Posted March 15, 2013 Basically he's talking about looking for more pediatric POTS research. Wants better diagnosis criteria and a classification paradigm. Once they have that, then that should be followed by multi-centered randomized/double blinded studies on pharmacological and non-pharmacological treatments, etc etc. Nothing very specific. Sounds a lot like what they still need to do for adult patients.The one thing that jumped out at me was the statement that studies have shown that outcomes for adult patients are "very good". REALLY???? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2013 Author Report Share Posted March 15, 2013 Thanks, Chaos!So, nothing really ground-breaking there. I was hoping someone had a new idea, or a thought outside the box.And yea, if the prognosis was so good for adults, we would definitely have heard about it here first...and we haven't. So that says it all! Quote Link to comment Share on other sites More sharing options...
NaomiSpellman Posted March 15, 2013 Report Share Posted March 15, 2013 NOTE - there is a difference between pediatric POTS (which sometimes does go into remission in adulthood) and adult POTS. We all know the prognosis for adult POTS is NOT GOOD! They need to determine genetically BEFOREHAND whether a specific med can be tolerated and whether it will help. The constant going on and off pills, and intolerance to pills, is killing me. One prescribed med dropped my BP dangerously, one made me suicidal and i had to get off it right away with no help. As for adult POTS prognosis - all I can say is thank god I have Bipolar Disorder. Because at least it is recognized fairly as a disabling condition. I can only hope for the sake of others that our increasing knowledge of the genetic component of POTS will eventually help serve this population fairly in the future. Good luck. Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 15, 2013 Report Share Posted March 15, 2013 Ust thinking what pediatric pots patient, many of Them ( i migth be one of Them) continu on to become adult pots folks. I was told i would out grow it. So fare it seems i will only out die it. But pregnancy did help me. And my cardio ( not a pots doc) says i migth grow out of it durin menopause. It seems to me They Need to research on pots , both the one stricking younger and older folks. What i have read is older People getting it after surgery and illnes have a good prognosis. But Then again are there really any statistisk on This? It seems to me like docs stick a finger in the air and guesses. Naomispellman ust woundering do u think its a conection between Your bipolar and pots or not? Hope u dont mind me asking? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 15, 2013 Report Share Posted March 15, 2013 I think there is not good information on prognosis at this point. In general I think younger people are more likely to see full recovery than are older from what I have read. My specialist says that nearly everyone sees some improvement and most people improve greatly, but it can take years. I know he said in his experience the average time to "recovery" is around 4 years. And many of us need medications to experience this recovery. Also, relapses are not uncommon. In my caseI was disabled for about one year. Since then I am mostly functional but I can have relapses from time to time. Anyway, my point is that although there is little in the literature on prognosis it does seem that we are all different, when you look at the experiences of patients here, or talk to a dr who treats patients with POTS. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 16, 2013 Report Share Posted March 16, 2013 generally the thought (and its all anecdotal because there are no proper studies examining this) is that developmental POTS and post viral POTS have the best spontaneous improvement rates.But these statements are all conjectural. Quote Link to comment Share on other sites More sharing options...
Angela Posted March 16, 2013 Report Share Posted March 16, 2013 developmental at what age i wonder? and spontaneous improvement doesn't mean that you won't have flares, right? Quote Link to comment Share on other sites More sharing options...
Angela Posted March 16, 2013 Report Share Posted March 16, 2013 and i would add genes i guess. seems to be a genetic sort, if not pots than something else autoimmune in fam. Quote Link to comment Share on other sites More sharing options...
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