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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 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.
  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 became less frequent and then just disappeared. I think you're smart not to immediately trust that's just autonomic. I've had too many doctors blow off symptoms as "just POTS" to avoid further investigation. So if you really feel it's not just POTS, then don't stop asking for tests. But if everything else seemed ruled out, it wouldn't surprise me if what you're describe is just some sort of autonomic flare. I am continually amazed at how many bizarre symptoms the autonomic nervous system can cause.
  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 a little alcohol. It sounds like the problem isn't so severe for her, so if light drinking really doesn't bother her, it's probably ok for her to indulge sometimes. Maybe you could talk to her about moderation and staying safe? That's important for any young woman going out, but especially with underlying health problems. It doesn't have to limit what she can do. I still hang out with friends while they're drinking and it's not awkward or anything (unless they're really drunk, but that's not usually very pleasant anyway!). Maybe she could try alternating between drinks and water when she goes out?
  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 what's immediate and under your control. One of the biggest lessons POTS has taught me is to only worry about the things that really matter.
  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. A quick Google search should help you find one. I believe those clinics mainly provide primary care, but they're probably also familiar with referring patients to specialists and may be able to give you advice. Some doctors will negotiate lower fees for patients without health insurance. Another possibility: if you are low income and out of work (which I'm assuming if you're bedridden) it may be possible for you to get very cheap health insurance. I don't know the details of this, but maybe someone else can provide more information. Basically: I think your number one priority should be finding a way to a diagnosis. We can try to give you tips on self-management but they can only go so far and honestly it may be a bit dangerous to do without you actually having a diagnosis/knowing exactly what's wrong. Could you also give more of a backstory on your symptoms?
  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 symptom of POTS but this is new for me so I guess I'm just wondering what's normal. I know I probably need to see a cardiologist about this but I don't have one I see regularly and the last one was 2 hours away - so I guess in the mean time I'm just curious what other people experience and what's considered normal for POTS.
  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 a counter maneuver. When you're sitting, your legs are just totally lax. I have noticed that blood pools in my feet really quickly from "normal" sitting vs standing.
  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 had pretty severe neuro reactions to almost every medication I've tried since getting POTS. I can tell most doctors don't believe me and one even refused to keep seeing me if I didn't continue a med that was causing horrible side effects (we never spoke again). I'm sure most people on here can understand your frustration - it's hard enough to treat POTS anyway and once you add in all of our sensitivities sometimes it's just like..what's the point?! I found an allergist who treats mast cell disorder, which I don't have, but thought he might be familiar with POTS and sure enough he is. In fact, I'm fairly sure he has a better understanding of POTS than any other doctor I've seen, including neurologists and cardiologists, aside from a POTS specialist. Anyway, he's been incredibly helpful explaining possible reasons why POTS can cause medication sensitivity and has a pretty good theory for my particular reactions. When I get nervous about trying something, he helps me figure out which side effects might just be annoying, and how to manage them, and which are actually dangerous. And more than anything, it just feels great to have a doctor believe me (and vouch for me to other doctors). I was so used to trying to explain my reactions to doctors and getting looked like at like I was crazy. Instead this guy launched straight into a 10 minute explanation of why my nervous system was reacting the way it was. So my point in saying all of this - I strongly encourage you to find someone, maybe an allergist, who understands the medication sensitivities of POTS patients. Someone who can help you figure out what you need to bear with and what's not worth it. An allergist who is familiar with medication allergies/sensitivities will have a very good understanding of potential side effects, even the weird ones, and should be able to address that.
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