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lejones1

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About lejones1

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  • Birthday 11/06/1989

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  1. Exercise intolerance is definitely a symptom of dysautonomia, including immediate intolerance. What happens to your heart rate while you're exercising? How hard are you exercising?
  2. For a while I had trouble with pretty much everything, even basic supplements that I didn't understand how I could be sensitive. It got better over time and now I'm mostly ok with vitamins and supplements but still have trouble with a lot of prescription meds. I don't know why I improved, I think it was just time, so I don't have any tips. I'm sorry you're dealing with this though, I know it's so frustrating.
  3. I'm extremely medication sensitive and was ok under anesthesia but didn't do well on the antibiotics afterward. Have you talked to your doctor about your concerns? You could even ask to talk to the anesthesiologist before the surgery. There are different combos of meds they can use and you can ask them to be particularly aware of your vitals, etc.
  4. Dark circles under my eyes and dry/itchy/splotchy skin are the biggest for me. Already had both from allergies but now they're way worse. Yay for under eye concealer! I actually looked horribly sick for the first year - underweight, super pale, glazed over eyes. I overheard my cousin tell someone I looked "like a Holocaust victim" which was really upsetting. But I look much healthier now so there is hope! Also to everyone mentioning a bloated stomach, you might wanna consider food sensitivities. I can get mine to go away by cutting out certain foods, even if they don't necessarily make me feel worse.
  5. You could try dissolving them in some sort of juice and water mixture and making homemade electrolyte fluid. I wouldn't substitute them for salt in anything else since they have the buffering stuff too.
  6. I get this too! I've given up on exercise for now. Sometimes I even get it just from sitting up for too many hours straight. It's so frustrating because I'll be exhausted, then end up wired and shaking in bed all night. Ramakentesh, can you explain what you mean about the hypoperfusion a little more? Would that cause a slightly delayed response too?
  7. SFN stands for small fiber neuropathy. One type of SFN is autonomic neuropathy, which about 50% of POTS patients have. Some portion of these also have sensory neuropathy, which causes abnormal sensations like tingling, numbness, feelings of hot and cold, etc. It typical starts in the feet/lower legs and hands/lower arms. I have sensory SFN and while I've never had the specific feeling you describe, I've heard it can occur and there are definitely a lot of bizarre sensations that it causes. Obviously you need to see a neurologist and he'll probably want to check for a variety of things, but make sure he considers this, especially if he's not aware that there is a connection because SFN and POTS. A local neuro told me it pretty much only occurred in people with diabetes and AIDS (which is actually completely false) and that my symptom pattern wasn't consistent with it, but my POTS specialist tested me for it and sure enough I have it! I think the usual tests are QSART and little skin biopsies.
  8. Oh also, if you have a tendency to pass out unexpectedly, you might want to try walls that are angled out a bit (so you're climbing slightly tilted back) if the gym you go to offers them. They can be a little harder but if you faint you'll swing out more, so you'd run less of a risk of swinging into the wall.
  9. I used to rock climb, long before POTS and it was awesome. As a warning, it's actually a pretty strenuous form of exercise (more than you might expect since you're not moving quickly). Just make sure you a really good spotter, so you feel comfortable letting go if you get lightheaded! Good luck!
  10. I have sensory small fiber neuropathy, diagnosed by a QSART test, but had normal skin biopsies. They only work if they happen to hit the right spot of skin - nerve damage can be quite patchy. That said, your questions are a little confusing. Autonomic dysfunction does not necessarily mean you have small fiber neuropathy (although autonomic neuropathy is a form of small fiber neuropathy). How do you know you have peripheral neuropathy? Are you referring to autonomic, sensory, or motor neuropathy?
  11. I had abnormal QSART in my feet/lower legs and I've occasionally had full body itching. It's actually more of a cross between itching and burning, and it doesn't feel like normal skin itching, it's deeper. My POTS was viral-onset and the first couple of months I had this very frequently, almost every night (although I had no idea what it was at the time). Now I get it much less frequently, if I'm sick or I've really overdone it.
  12. Ok a few things : My biggest recommendation is to just be a hygiene freak. Don't touch your face unless you've just washed your hands! That's really huge if you can pay attention it to - most people touch their faces a ton each day without thinking about it. Also get some Lysol and wipe down the most touched areas of your house (kitchen areas, door knobs, remotes) a couple of times a week. And wipe your phone down every day. There are actually some POTS support groups, though not super common. Have you looked in your area? Can you post which state you live in? You could also try joining one of the support groups on Facebook - people post a lot and it may help you feel more connected to others in a similar situation.
  13. I have episodes exactly like what you describe. I used to experience them as anxiety too, although now they feel more like I'm just hyped up on a lot of caffeine. I don't think they're real anxiety - I think it's some sort of imbalance with epinephrine/norepinephrine. Mine also happen after overexertion, either immediately or a few hours later. It doesn't even have to be exercise - sometimes it just happens after being upright too long or um..intimate moments with my boyfriend. They usually happen at night and sometimes even wake me up. It's the worst combination of feeling really wired and being exhausted, and I can't sleep til it wears off so I'm a wreck the next day. And it also causes a flare-up of IBS symptoms for me. I gave up on exercise because they just kept happening every single time. I haven't tried any meds for this yet, mostly because I seem to have bad reactions to absolutely everything, so I can't tell you whether anything does/doesn't help - but just commenting to say I get the exact same pattern of symptoms. I hope you figure out how to manage it - and if you do, please let us know!
  14. It took me 7 months after my symptoms got really bad. They were so numerous and vague - I was told I had "post viral syndrome", that I needed to exercise more, that I was depressed, etc. My gynecologist was the first doctor doctor that was like hmm this doesn't sound right, so referred me to a rheumatologist, thinking it might be autoimmune. He asked me a bunch of questions, including whether I ever blacked out/passed out and felt worse standing. So he referred me for a tilt table test with a cardiologist. I'd just heard of POTS a couple of weeks before from a family friend, and I knew nothing about it. I think I've had mild symptoms since I was a child and that may have set me back in getting a diagnosis, because they were things I didn't think to tell a doctor. I always thought it was normal to black out when I stood up. I thought always having to sit with my legs up and not being able to stand still were just my little quirks. Oops, guess not! Don't worry about sounding like a hypochondriac! I used to worry about that too and I finally just realized that I know my body more than anyone else, and unfortunately sometimes I know more about my diagnoses then doctors too. So if you know something is wrong, just educate yourself and don't back down!
  15. I get a really weird wired feeling. It starts either toward the end of exerting myself or within an hour or two. It's really sudden, like a flip switches inside me and my body goes into fight or flight mode. I become super alert, I can stay awake all night when it happens. I think it might be sympathetic overactivity? It doesn't just happen with exercise, it happens with pretty much anything that overstimulates me. Could just be a particularly lively conversation. Being upright too long seems to do it too. It wears off in about 12-18 hours - I'll start feeling really out of it, then need to sleep. If it's mild I can just sleep it off. If I do this a few days in a row, or really overexert myself, I end up exhausted and in pain and/or flu-like, and it takes a few days in bed to recover.
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