imre Posted August 27, 2012 Report Share Posted August 27, 2012 Has anyone had a sudden onset of pots in their early to mid twenties? If you know anyone like this, what has been the underlying cause?I am 24 and was diagnosed in March of 2012 after an acute onset. Possible causes for me are virus, vaccinations, malaria prophylaxis ( I took while on medical mission in Asia) or neck injury sustained in November 2011 which is still bothersome. Anyone with a similar experience or thoughts? Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 27, 2012 Report Share Posted August 27, 2012 Yes, my daughter had a sudden onset of POTS in July of 2011 (at 22 years old) right after a viral illness. She is not doing well right now (basically bedridden for the past 3 months) and is being tested for some sort of mast cell disorder. Quote Link to comment Share on other sites More sharing options...
hippychic258 Posted August 27, 2012 Report Share Posted August 27, 2012 I am sorry everyone is having such a hard time!!!!!!What symptoms is your daughter having that is keeping her bedridden and does she get up at all?Thanks Quote Link to comment Share on other sites More sharing options...
imre Posted August 27, 2012 Author Report Share Posted August 27, 2012 Thank you for your response and I am sorry to hear that jpjd59. Hopefully she will get better soon. http://www.ncbi.nlm.nih.gov/pubmed/20860911That is the link to a paper from pubmed as to why I think it might have been the prophylactic, has anyone else heard of something like this? Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 27, 2012 Report Share Posted August 27, 2012 imre... sorry you're not well (and everyone else/their family too). I'm not sure about prophylactic or what that is.I just wanted to say that my onset was mid-twenties, two years ago when I was 26. I thought it was because of post-pregnancy complications but anymore, I am just totally confused and have no idea. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 27, 2012 Report Share Posted August 27, 2012 I also took mefloquine--in 1990-1992. I did not immediately present with symptoms. My first real symptoms appeared about 6-7 yrs later. However, looking back I did have symptoms that maybe started around that time--just very mild--certainly not acute. For me it is hard to imagine this is the explanation--but I of course also wonder what the cause was for me. I have one sister who also has POTS and she did not take this med.Viruses are typically implicated and there are POTS patients who complain of neck problems or injuries. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 27, 2012 Report Share Posted August 27, 2012 Hippychic258:The symptoms of most concern right now are the difficulty breathing and feeling that her throat is closing up. However, she has a multitude of symptoms ranging from hives, skin and brain feeling like they are on fire, nausea, heart racing, unable to sleep, hair loss, and many others. We are hoping for some answers soon (and hopefully a solution)!!! Quote Link to comment Share on other sites More sharing options...
miajnt Posted August 27, 2012 Report Share Posted August 27, 2012 Thatis interesting...did you take plaquinil? Iwas taking it for about 8 months and during that time the POTS developed. Quote Link to comment Share on other sites More sharing options...
imre Posted August 27, 2012 Author Report Share Posted August 27, 2012 Nope never took plaquenil I just looked it up though and it is also anti malarial, and has some funky side effects from what I read. I can not say anything about it though because I don't know enough about the drug but it might be worth looking into. Quote Link to comment Share on other sites More sharing options...
westernmass Posted August 27, 2012 Report Share Posted August 27, 2012 HelloI'm 25 and was struck with a sudden onset in February 2012. I am doing about the same as I was then though my symptoms shuffle around a bit. I still work and am "functional" but at about 50% of the normal "me" I was before pots. Still looking for the underlying cause. No illness, vaccines or serious injury before the onset. Very frustrating condition we have. I am grateful to be able to still get around ok and work, though it is not easy and I struggle every day. I know many here have it much worse and are bed bound or house bound or in wheel chairs. My heart goes out to those people. It seems there are several different underlying causes and I wonder if the various subsets of pots have been linked to their onset; for example like is hyperadrenergic pots generally linked to post viral onset, etc etc. Quote Link to comment Share on other sites More sharing options...
imre Posted August 27, 2012 Author Report Share Posted August 27, 2012 Thanks for all the responses guys, this illness is so bizarre nobody really knows the cause or the prognosis. From what I have read on this forum the range of severity is also very large. My heart goes out to all those suffering hopefully they will get better soon. Quote Link to comment Share on other sites More sharing options...
imre Posted August 27, 2012 Author Report Share Posted August 27, 2012 Good question western mass I think I am in a similar situation as you. About 50 percent usually but still able to work, I have a lot of great family support which helps. I guess the original reason I posted was to find people similar to myself and get some sort of prognosis. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 28, 2012 Report Share Posted August 28, 2012 So many possible triggers - I have been over it in my head a thousand times. Many problems began directly after being on Paxil and Klonopin. Also around this time I was positive for acute/active EBV infection and diagnosed with CFS. Worst symptom during that time (and still) was dizziness, spaciness, fatigue and cognitive problems. Really bad POTS symptoms (racing heart, trouble breathing, adrenaline etc.) started about 8 years later - possible triggers at that time were a neck injury caused by a chiropractor, a flourquinolone (Levaquin) that I took prior to cystoscopy (looking for cause of chronic blood in my urine), I had also been on steroids around this time trying to treat the inner ear/dizziness issues I had been having since the original onset of problems 8 years earlier. Or it's possible none of that triggered the POTS and it was all the same illness that just progressed. Too many things happened back to back - it's impossible to know what might have caused this. Or maybe all of that was just coincidental and POTS came for some other reason! So frustrating. Quote Link to comment Share on other sites More sharing options...
Sif Posted August 28, 2012 Report Share Posted August 28, 2012 Mid to late twenties here who experienced a sudden acute onset of POTS. I woke up fine that morning after a minor cold then boom, suddenly fainting and adrenaline surges everywhere later that day and it hasn't gone away since.As for a trigger, I did have the cold but it was very minor. I was overseas at the time and had been flying a lot recently so that could also have been a trigger.. but then again I used to fly a lot for work and had always been perfectly fine. I've been told my POTS is probably autoimmune so maybe the cold stired something up? I also had stupidly high antithyroid antibodies at the time. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted August 28, 2012 Report Share Posted August 28, 2012 Mine started after a bout of viral meningitis in my late 20's. Quote Link to comment Share on other sites More sharing options...
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