ramakentesh Posted March 30, 2005 Report Share Posted March 30, 2005 Im curious to see the number of people here who got POTS out of the blue vs. those that got it slowly over time. I would also like to compare how these two different onsets might relate to improvements.For me, i had occasional but very slight POTS symptoms for a long time, and then i got the flu and shortly after this went for a run before i was better (my fitness instructor told me 'run the cold off.') - i got so dizzy that i nearly fell over. Two days later I had a shocking autonomic storm for the first time (rushed to ER and after eleven hours sent home and told i was 'suffering anxiety'). Then i was so dizzy the day after taht and so spaced out and the whole thing came on soooo bad that i could barely function, got 80 year old men to give up their seats for me purely by looking so bad, and generally was the most unwell of my life.gradually i improved over a period of a year and a half, and when i finally discovered I had pots and increased my salt levels, i was able to function almost normally after 18 months or so.As my doctor says - im doing ok, but i could still be better. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 30, 2005 Report Share Posted March 30, 2005 I believe veryblue/thisblows/porque conducted a number of surveys on this matter that you can probably find by doing a search.I think I started to develop POTS in my early 20's. It was full-blown with my pregnancy, got worse post-partum. Following diagnosis and treatment, I improved tremendously by a year later. I am much better now and currently off all POTS meds. Still keep up fluids and salt, and still have some off days, but overall, highly functional.Katherine Quote Link to comment Share on other sites More sharing options...
calypso Posted March 30, 2005 Report Share Posted March 30, 2005 Katherine,Congrats on being med-free! I saw a post that you were trying to stop the SSRI but didn't know you stopped the BB too. How is it going?Amy Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 30, 2005 Report Share Posted March 30, 2005 AmySo far, so good. I tried this once before with poor results and went back on both. I have been off for over 2 months now. I still have days where I think my bp is highly variable and I get symptomatic, but I keep the fluids and salt going and it helps tremendously. I intend to use the BB still on an as needed basis, but haven't used it either for over 2 months.Thanks for asking. It does feel good psychologically to be off medications, that's for sure. My physical symptoms are only a little worse without them.Katherine Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 30, 2005 Report Share Posted March 30, 2005 Mine is genetic. I got it from my father who got it from his mother.I am only getting worse as the years go by.Ernie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 30, 2005 Report Share Posted March 30, 2005 I've been sick my whole life, so have no idea what started it. morgan Quote Link to comment Share on other sites More sharing options...
tammyokc Posted March 30, 2005 Report Share Posted March 30, 2005 I've been fainting since I was nine years old, so have had this almost all my life. I just didn't know it was called POTS until 2 months ago. I learned to live with it. When I was 20 (1995) I developed a very rare nerve cancer that almost took my life. (did a year of chemo, 2 months of radiation, and had 3 surgeries). After that my symptoms kept worsening. In October 2002, I started having uncontrollable heart palps and anxiety from over active adrenaline and haven't been able to get rid of it. Since Jan. 2005, I have not been back to work and do not see any improvement with meds. I have become very sensitive to them and the slighest dose makes my 110 resting pulse go to 150. Glad some are doing better, I pray I will to! Quote Link to comment Share on other sites More sharing options...
thechick Posted March 31, 2005 Report Share Posted March 31, 2005 I believe I've had POTS for about 25 years now. I've suffered with tachycardia that long. It was originally diagnosed as Mitral Valve Prolapse, (which doesnt show up now). It got out of control January 16th of this year, 5 days after bladder surgery. Ended up in ER with heart rate at 190.since then, life has been ****. Of course you all can relate to that. Quote Link to comment Share on other sites More sharing options...
lindaf Posted April 1, 2005 Report Share Posted April 1, 2005 My niece got pots after several months of fighting salmonella D and ended up with deep tissue dehydration. The doctors seem to think this is what caused pots, but she has said that she has had other episodes that maybe only lasted a few days as long as she can remember. Quote Link to comment Share on other sites More sharing options...
blackwolf Posted April 1, 2005 Report Share Posted April 1, 2005 Looking back, I noticed trouble starting toward the end of high school. But I didn't get bad till I had a bought of viral pleursy followed by a blood born infection.black-still in the hole. but trying-wolf Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 1, 2005 Report Share Posted April 1, 2005 I've had symptoms since I was a teenager, during my first pregnancy, I was told that I just needed to drink more and stand up slower. Even after pregnancy I couldn't bare to work out in the yard in the hot sun, it would expend me for the rest of the day.I was diagnosed 3 1/2 years ago after our annual flu vaccination at work. I started getting sick nearly immediately after vaccination which continued until a few weeks later when the tachycardia started. I had several visits and phone calls to my doctor and 2 ER visits and then admission the week before the tachycardia hit me.I think that some of us might be predisposed to POTS and that something (some sort of event, such as illness, trauma, exposure to something that doesn't agree with our bodies happens) and then we get hit with the full fledged illness. Kind of like your car engine that finally gives out after a couple hundred thousand miles. Quote Link to comment Share on other sites More sharing options...
Tate Posted April 1, 2005 Report Share Posted April 1, 2005 I started fainting at age 9, but my Mother and I believe I demonstrated symptoms prior to that. At age 2 she took me to Children's Hospital for brain scans because I was nodding and falling over, they found nothing in the scans. I believe that was an early sign. I was just diagnosed (after 19 years of searching). My major symptom is fainting but I have palpatations, sweats, fatique etc...I take Pinidol (BB) and Florinef. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 2, 2005 Author Report Share Posted April 2, 2005 thanks for the replies guys - very interesting to read!Id agree with Briar rose - i didnt feel quite 'right' for many years before POTS really came out - if i stood for too long ive always got tired and shaky. Then something just brought it RIGHT out. Quote Link to comment Share on other sites More sharing options...
kare Posted April 6, 2005 Report Share Posted April 6, 2005 My POTS symptoms came on after 2nd pregnancy- 18 years ago. Hasn't changed much- meds help for awhile then body adjusts to them. Fatigue from the pulse and blood pressure all over the place. AM"S are the worse. Been taking 2 classes at college- medical, but don't know what I can do with them, as too worn out for PA school....... Planning on taking GRE's this summer and maybe grad school little at a time, but I really need to help bring in some money- haven't worked for many years. Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted April 19, 2005 Report Share Posted April 19, 2005 I remember it so well. I went to a cousin's wedding, ate horrible macaroni salad to make my aunt feel better. Went home exausted, woke up and went to an Eddie Bauer warehouse sale with friends, had lunch and went home to take a nap. Bam! Nausea non-stop. 6 months later the rest of the symptoms set in just as suddenly. We joked that I got it from Walmart, or the Eddie Bauer Sale (nerve damage from large amounts of ugly sweaters) and from the mac. Its taken so much of my life away, we have to joke a little. But anyway, the apartment that I lived in at the time had an extensive toxic mold problem. I had to live with my parents for a few months just to be cared for, then I moved closer to the hospital. I wish I would have had the mold tested though. We still wonder if there was a connection... Second part of the question: I do feel that I am getting better. I can watch TV, which is a big improvement, without emesis and I have been able to increase work to full-time. I've even joined a gym, although even the slightest exercise makes me so freakin' sick. The nausea, though has not decreased while other symptoms certainly have. I hope that everyone will improve and soon! Quote Link to comment Share on other sites More sharing options...
kare Posted April 19, 2005 Report Share Posted April 19, 2005 My POTS/MVP "syndrome" or whatever happened during or after 2 nd pregnancy. Could have been during , but was too naseauted to notice exhaustion, fast pulse- I am one of those who throw up the whole nine months unless I ate non stop- small meals, even sandwiches under bed at nite to keep from having to vomit. (even taking phenergan) Gained 50 pounds last 3 pregnancies, but that was better than first preg when had to be hospitalized cause had lost 15 and was dehydrated from vomiting 10 plus times a day.... sorry, I am off the subject, my adhd kicking in big time......Anyway, have lived with this exhaustion, high pulse(when standing), low blood pressure for 18 years. There is no way I could have worked full time job, trying to see if I can handle parttime this summer. I never pass out, just have to sit down when I feel weak dizzy. My brain fog is pretty bad cause of tiredness, mornings are worst....Maybe it will go away, maybe not....... Quote Link to comment Share on other sites More sharing options...
sunisshining Posted April 19, 2005 Report Share Posted April 19, 2005 mine definitely started in middle school after i got some cold/flu/sinus infection. but before then, standing was never my favorite thing and pe was always quite difficult. we thought it was because of my flat feet and the extra bones in my feet or i thought i was just more out of shape than every other kid (thinking back on this, i doubt it was the case). but hit full fledge after i got sick in 7th grade (i think it was 7th grade...one of those yrs in middle school). But, i remember that cold lasted forever, i also remember a bit before it came on full-fledged i was walking and all of a sudden i couldn't walk in a straight line and had to grab onto a pole and try to get to the next pole until i got back into the gym...was AWFUL. i had to sit with my head in my knees for an eternity. ok..off topic. but i remember keeping on trying to go back to school, but it didn't work..i'd have to go to the office and have my parents called - and lie on a mat until they got there. lost a lot of weight. one time when i tried coming back i was in pe and i just had to stop and go to the office b/c i felt like i was going to pass out and i could barely stand..it was such a horrible feeling. that was probably the first time i got that feeling that i've gotten sooooooo many times since then - the silk- scarf- trying- to- stand- up feeling. whatever the case yep..that happened to me....and i missed a ton of school and it would cycle...and doctors didn't know what to do or what to think...yeah..it was a mess.okie dokie.hope u r all doing as well as possible..or better than that!hugs!keeping u in my prayers.back to studying after a nap and some saltine crackers and gatorade....love u lots,sun Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 20, 2005 Report Share Posted April 20, 2005 Oh I dunno, being born perhaps.....morgan Quote Link to comment Share on other sites More sharing options...
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