tommykazim Posted June 24, 2012 Report Share Posted June 24, 2012 Hi, I'm new(ish), joined back in the day when I thought I had POTS and then was labelled with CFS so defected to them! I'm convinced though that the beginning of what has been 15 years of struggles though was POTS and so I'm back! I'm aware of the overlap. Just wondering if the onset of my illness is similar to others?It was sudden. I was otherwise very fit and healthy (physically and mentally). Out of the blue I experienced an episode of palpitations, chills, impending doom - only finding was a sky high BP. This happened again and again, increased HR on standing set in as did anxiety, fatigue and eventually brain fog.Unfortunately I was in the 3rd world where I doubt they've yet heard of POTS. They investigated for phaechromocytoma and more but with no positive findings I was discarded. If others have had a similar sudden onset do you find yourselves in the hyper-POTS subset?Thanks,Tom Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted June 24, 2012 Report Share Posted June 24, 2012 Hi Tom! I had a very sudden onset as well. I was in the middle of training for a half marathon when I woke up in the middle of the night really nauseous and so dizzy I could barely stand up. For me the palpitations/tachycardia developed a little later. It has been so frustrating to go from athletic/active to unable to work. I don't think I qualify as hyper-POTS but have never had my catecholamines tested. I don't get really high bp's or anything. Good luck finding something that works for you! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 24, 2012 Report Share Posted June 24, 2012 My son's was gradual, starting in the 5th grade. It became a daily event in the 8th grade. He was also athletic and able to play soccer year round until the 7th grade and continued with baseball until the 8th grade when he had to give up everything including school. Because of it being gradual with one symptom here and there it was hard to diagnose. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted June 24, 2012 Report Share Posted June 24, 2012 Hi Tom,I'm having a hard time answering.... I'd always had fainting,dizziness, tachy and low BP since I can remember but no one ever made a bid deal about. My family doctors that I saw over the years always said the same thing "Some people just faint when they stand" because it was always changing position. But I was never diagnosed and those spells were rare (1x every2-3 months).In Aprii of 2011 this flare began suddenly and has just gotten progressively worse. In fact no one can even figure out how to treat me. It has a frustrating year+ that's for sure.Good luck and I hope you find the right doctor quickly and get the help you need ASAP!Jen Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 24, 2012 Report Share Posted June 24, 2012 Tom:Yes, after a viral illness all of the symptoms started. Because of high NE levels it has been classified as hyper-POTS. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 24, 2012 Report Share Posted June 24, 2012 Tom, I had a virus that triggered mine, and had high blood pressure initially, binocular defect, pitted edema, weakness on right side, which has resolved, hand pain, lungs bleeding, several falls, and abdominal pain, then started having ear problems, tinnitus, eye tearing, dizziness/vertigo from tachycardia and irregular heart beats for three more years before I was diagnosed, so it was a long process for me, 13 years in all. When I started running into curbs, and damaging my car, I finally went back to the doctor. It was definitely time...welcome back, and sorry you have to be here. Quote Link to comment Share on other sites More sharing options...
Sif Posted June 25, 2012 Report Share Posted June 25, 2012 Very sudden! I'm still not sure what triggered mine. I had a minor cold beforehand so perhaps that. I also had an undiagnosed thyroid problem but I've never heard of that causing POTS.I was also overseas when it hit.. was fine one day then fainting all over the place the next day while I was trying to shop. I was absolutely terrified, lol. I have not being diagnosed with hyper POTS but I have very large increases in BP when at my worst so I think it's at least a possibility. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted June 25, 2012 Report Share Posted June 25, 2012 I have hyperPOTS and had a gradual, progressive onset as described in Dr Grubb's 2011 article on hyperPOTS (link recently provided). Quote Link to comment Share on other sites More sharing options...
tommykazim Posted July 1, 2012 Author Report Share Posted July 1, 2012 Thanks all for your replies and sorry for taking so song to say that! Been a trying week but then when isnt! Hhomes: Yes frustrating it is - I wasnt a great runner but would have liked to have achieved a marathon - it is on the list for WHEN I recover! I spent a lot of my time in the pool - swimming/waterpolo/triathlons - when my body knew no limits! It is puzzling as to what brought this sudden change in how our bodies work (and now dont!). The CFS lot are being led down the autoimmune path after having had some interesting results with treatment. I wonder if will be the case in POTS too...Hope your Asics/Nike's get to be used sooner than later!Christy: Sorry to hear your son isnt able to enjoy his sport. Tough to come down with a debilitating illness at that age for him and you. Did I read there is a better prognosis though for kids in outgrowing their condition. Hope that will be the case and he'll be hitting balls out the park again soon! Jen: Sorry to hear you've had a tough year. Interestingly my mother has had for years your symptoms of fainting, dizziness etc and docs also werent bothered. She hasnt - touch wood - though had any worsening of them and just carries on with it. I blame her for giving me a much worse version of what she has! Hoping your body will get itself back to its baseline soon.JP: the viral trigger is interesting. Knowing more about CFS - it commonly precedes CFS. In medicine they talk of "molecular mimicry" where an infection with a virus/bacteria triggers an autoimmune reaction as there is a similarity in structure between the virus and a self-protein. The immune response then attacks "self" in the process. I wonder with raised NE in POTS if this NE transporter thats been implicated in POTS might be the "self" that is attacked?! I wonder a lot, probably too much!Kim, you had to get almost everything in the book for the docs to open their eyes! At least you have a diagnosis now and hopefully treatment is helping.Sif: you werent also in Africa were you and we picked up the same bug?! My BP has settled now even with the attacks of palpitations, not sure why but shouldnt complain.HyperPots: thanks will read up on that article. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 1, 2012 Report Share Posted July 1, 2012 Yes, diagnosis and treatment were definitely a God send!! and a relief Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 3, 2012 Report Share Posted July 3, 2012 Despite the fact that research bodies variously describe the true hyperadrenergic variety of POTS as constitituing 10%, 10% and 25%, nearly every patient on these forums claims to have it.Its prettymuch a meaningless differentiation. QSART abnormalities were found to be the same in both hyper and non hyper POTS patients. Those with resting vasoconstriction v those with hyporeninism v those with distributive hypovolumia (extremities or splanchnic) is more meaningful.All pots appeasr to be abnormal cerebral autoregulation which is an important point. Quote Link to comment Share on other sites More sharing options...
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