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About Relax86

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  1. I'm someone who got close to full recovery of my POTS back in 2011, 12, 13. I was able to return to work, but it seemed like autonomic glitches continued to hum underneath. I was still pretty grateful to get "better". Around 2015 I was having some terrible stomach pain and I was annoyed b/c the POTS was better. I was diagnosed with Celiac, went gluten free without much change, then continued to live somewhat half hearted gluten free. I would've called myself gluten sensitive. The stomach pain flares would come and go and didn't seem to have anything to do with gluten. This past November I had
  2. Recently I returned to needing Midodrine after being med free and feeling close to 85% better since my flare of 2011. Not sure why. I caught a cold, but not the flu. I traveled a lot since October and I'm completely over tired. Hang in to all looking for reasons for flares, clues to calm the insides down and a CURE!
  3. At one point I also had elevated testosterone. Never figured it out. Good luck
  4. I did food elimination not by choice but during my biggest flare I could not eat anything but brown rice, beans, very little chicken and some scrambled eggs (no milk in the eggs). Food elimination changed nothing for me. About 9 months later I started noting food triggers. I don't believe food triggered my POTS but I believe I had some existing sensitivities that were increased as I recovered by POTs. My triggers are: sugar substitutes, wine, soy sauce, and generally sulfates/sulfites, nitrates. I was a pretty clean eater prior to POTS, always ate the rainbow of colors in my diet, very li
  5. I should add I'm not on Florinef. I took it for 1 day and didn't like it immediately. So I too have bladder sx but not related to this medication
  6. I posted what my general tolerance is...sometimes I can do more and sometimes I do less. In the beginning of a flare I usually take off from exercise completely (usually a few days). But I know that staying somewhat fit and moving is key to maintenance and quicker recoveries b/t flares for me.
  7. I also never had anxiety issues prior to POTs. My first flare occurred when I was literally on top of the world in terms of work, my schedule and general well being. The second flare occurred gradually at first and then stopped me in my tracks. I was in a stressful job and feeling unhappy therefore I began to look as stress as a provoking factor. I have questioned myself at times and jokingly called myself a lunatic. My body does not handle stress well at all. However.... I was 95% recovered until this past Thursday night when I had a totally unprovoked flare on the way home from work. F
  8. I rarely get sick, catch colds and can't remember ever having the flu. Pre or post pots. But I do know that when I mentally fall apart - with a sobbing cry (silly, I know) I actually have no POTS symptoms for several hours. Also, recently been playing around with a short 15 minute weight training session just prior to bed which has made my AM PB's jump up to 111/63 vs 99/50. If we're talking about symptoms that temporarily disappear. As for my autoimmunity I had to fire my rheumy - shopping for new.
  9. I also had absence of sweating. The list is comprehensive and it made me sad to see all the things I could check. I tried to be conservative and not over think it. Still a lot of checks. But also comforting to know there's people out there that understand and feel the same. It's nice to not be alone. Good luck all
  10. I have high prolactin and I did have some lactation over the summer. 44yr old non pregnant female...kinda weird. I told my primary I had breast milk and let downs and he thought I was probably over thinking my symptoms. Besides offering to feed him I really had no intention of proving it. He ordered bloodwork and my prolactin was high. I had Pit MRI which was negative. The lactation seemed like it was mid cycle and has since gone away. My meds at the time were Midrodine and a little hyrdrocortisone.
  11. Anyone have any new thoughts or solutions for the vein issues? My veins seem to only be forearms and hands. The veins burn and fill up and pop out a nice blue. I look ridiculous with my arms over my head but it seems reasonable that I need to get that blood back to the trunk for good use in other areas such as my brain. I'm really trying not to complain these days as my HR and BP are stabile most days. I just was wondering if anyone has updated info on why this happens or what might help. Another question could be ~ is it dangerous?? It happened during my rheumy visit last Friday and sh
  12. I bought C0-Q10 at some point last year and never tried. I still stare at it wondering 'why not'....I just can't seem to find enough people who said this supplement made a significant difference. And in the spirit of not putting vitamins in my system I may not need, I've held off.
  13. I'm POTS but not MCAS. Actually in the height of my flare sex helped b/c it increased my BP. But I would often crash afterwards and feel terrible - not because of all the fun, but because of adrenaline...etc. Worry always makes POTs feel worse. I'm a breath holder during...try not to hold your breath. Here's another comment that might get pulled from the forum - but practice yourself. When I said I retrained everything, I meant everything. Driving, light singing, exposure to chatter, TV, light, perfumes/smells, exercise, food...and actually sex. I breath a little different now. And I
  14. The second I lay down for bed I feel like I have to pee. If I pee and lay back down I still feel like I have to pee. Before one of my earlier POTS flares I demanded antibiotic for UTI (which I am not prone to, never get and subsequently tested neg). So I improperly treated myself. Mu 2012 and most recent POTS flare bladder symptoms have been a real pain. Now that I am 85-90% improved it's one of the symptoms that lingered. Only when I'm trying to sleep and even with an empty bladder. Who knows?!?!
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