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Everything posted by lejones1

  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
  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
  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
  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
  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 no
  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 nee
  16. Apparently the POTS clinic in Minnesota is temporarily closed. I applied to be seen there a while ago and never got a date, so I called last month and they said it's closed indefinitely while they switch it between departments or something? I didn't fully understand, but the gist of it was they didn't know when it would reopen. Maybe they decided your symptoms fit fibro closely enough for you to be seen there instead
  17. The first year or so I had POTS, I had some attacks somewhat like what you'd describe. I would get really dizzy, horrible palpitations, start trembling like a full body tremor, flush red, and had this weird sense of doom...it wasn't like a panic attack, but when they happened it felt like I was dying or something. I had one in front of a nurse at a neurologist's once and she freaked out, said she'd never see anything like it. I didn't get stomach symptoms from them, although I didn't start getting POTS stomach problems til later. Like you said, mine would pass after 20 minutes or so. They
  18. Hey Nymph, welcome! I agree with with the above posts that it does sound like you could have a form of dysautonomia and should see a doctor about getting evaluated for it. Where do you live in NC? (You can send me a private message if you'd like). I live in the Piedmont, and depending on where you are, I can recommend some doctors who could at least diagnose you and get the process started, even the testing wouldn't be as thorough as Vanderbilt. It takes months to get into Vanderbilt and you may be better off going there once you have an initial diagnosis.
  19. It sounds like maybe a combination of alcohol and POTS. Everything you mention - slurred speech, confused thinking, falling over - can definitely be signs of drinking too much. And I wouldn't be surprised if her tolerance is much lower than normal because of POTS. (I know I can't drink at all because of it.) I'm 24 so I can understand the difficulty of being at an age where so much social activity involves drinking. At first it was hard for me to accept that I couldn't even have a single drink with friends. But I just realized my health and safety is far more important to me than drinking
  20. Yep yep yep. Good stress too, not just bad stress. Laughing too much, having too much fun? Time for a symptom flare! I guess the answer is...try to manage your stress as best as possible (of course!) Find time to pray, meditate, whatever works for you. Find time for quiet activities that make you happy. Spend time with your loved ones. If you're married or in a relationship, cuddle with your partner (physical contact is great for stress relief). Exercise if you can (also great for stress relief, though it seems to make many of us worse). And if you feel overwhelmed, try to focus only on
  21. I had a bad cold that turned into bronchitis when I got POTS. I actually had mono 2 years before and everything wasn't quite "right" after that, but it didn't really get in the way of my normal life. During the bronchitis, it was like a switch flipped and boom I had horrible POTS, weird nerve issues, etc. I know it wasn't the virus itself - almost everyone at my office got it and it was just a normal cold - I guess it was just my immune response?
  22. I think you need to find some way to get a diagnosis (though that's obviously easier said than done) and that's not something you're going to get through the ER. It's hard to know what to recommend without knowing more of your background, but if you do have POTS the likelihood that you're spontaneously get well through home treatment any time soon is pretty slim. And there are a number of other diseases with similar symptoms that would need to be evaluated by a doctor. Some possible suggestions for free/cheaper healthcare: find a free clinic for people without health insurance in your area.
  23. I don't usually have much of a problem with my heartbeat - even when it's really fast and I don't really notice it, and I've had palpitations occasionally but they're usually just a quick flutter. But a few weeks ago I started having a new type of palpitation and it's kind of throwing me off. It sort feels like my heart is suddenly slowing down and beating really deeply, and it makes me a bit lightheaded when it happens. At first it was just happening every few days but now it's a couple of times a day, lasting anywhere from a few beats to about 30 seconds. I know palpitations can be a sym
  24. I'm ok with sitting as long as I can put my legs up (crossed, knees to chest, propped up, anything!), but if I have to sit "properly" it's pretty bad. Not sure if it's worse than standing still, but they're probably about the same. Anyway, I don't know why but I would think it may have to do with flexing your leg muscles. You know when we have tilt table tests how they don't put us straight up at 90 degrees, more like 70? It's so we're not fully supporting our weight and flexing our legs. Just having to stand on your legs uses muscles and helps return blood to your heart. It's almost like
  25. My rule is: if the pros don't clearly outweigh the cons, don't take it. There isn't a cure for POTS, so realistically, anything you're taking is just to make you feel better. If it's not making you feel better, there's really no point (of course this doesn't apply to things like seizure meds). For me, a lot of the time my vitals don't even really correlate with how I feel. What's the point of me being on a beta blocker to have a decent heart rate if I feel too sick to get off the couch? For you, it sounds like maybe you should try a break from Florinef? See how much it affects you? I've
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