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Katja

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About Katja

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    Advanced Member
  • Birthday 08/23/1983

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  • Gender
    Female
  • Location
    Boston

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  1. I always shower at night now, usually sitting down in the bathtub, so I can go straight to bed afterwards. if I wash my hair, I do it over the sink/tub during the day, without undressing. doing it this way seems to help a lot - also b/c I feel best if I put on compression hose before getting out of bed, and wear them till night/don't take them off to shower during the day. before I started doing this, showers were far more of an ordeal for me - my heart rate would skyrocket, I always had to lay down to recover afterwards, would have fatigue and/or shortness of breath for the rest of the day, etc...
  2. about 2 weeks is typical, I think. I felt a clear difference after 1.5 weeks.
  3. This sounds like what I get - when I described it to my geneticist, she thought I was subluxing those joints. It happens with my hips and toes (mostly the latter, and in this case, they are usually visibly misaligned), though it used to happen to my ankles when I was a kid, as well. I'm not sure if it happens with any other joints - sometimes, it's hard to tell.
  4. Both Midodrine and Florinef improved my brain fog - it was actually the first thing I noticed on the Florinef. Wearing compression stockings also improved it noticeably.
  5. I think it's very normal. I don't think I've felt resentment or anger myself, because there was never a time I wasn't impaired in some manner - disabled is my "normal," and almost everyone I was close to, growing up, was disabled in one respect or another. Even when I didn't have dysautonomia (if there was a point I didn't have it), I struggled with anxiety and depression, some of which was likely secondary to what we're now thinking is an autism spectrum disorder, as well as with the primary effects of the latter on my ability to function. I was never able to function normally, and I would hazard that the psychological and neurodevelopmental issues I've dealt with are more crippling, so I was mostly able to accept the illness in stride. The baggage that came along with it - fighting doctors, trying to get accommodation, trying to convince people I'm not just lazy - is a different story; this is something I struggle with being very resentful or angry about, daily. You'd think I'd have made my peace by now with the fact that people will treat me like crap not despite, but because of the fact that I'm disabled, but no . I don't think there's a "right" way to deal with illness, though. There are ways that serve you, and ways that don't. If you work through it, anger and resentment isn't necessarily a problem - and I don't think it's something anyone should feel guilty about. Regarding the disability hierarchy of "who has it worse," I just read something very insightful (and validating) on the topic, from this year's Blogging Against Disablism Day (you can find it on Google: "blogging against disabilism: disabilism within disability," by Elizabeth McClung, if you're interested).
  6. this happens to me - I hate it. I describe it as being "drunk," as well. people stare at me like they can't figure out whether I'm drunk, high, or worse . it's gotten a lot better with Florinef and Midodrine, though. this used to be every day for me - now I only get it rarely. it was the main reason why going off Florinef, for the ANS testing, was pure h***.
  7. I do this all the time. most of the times I've broken and been "honest," I got treated like a hypochondriac. unfortunately, I've often found that I get more out of doctors when I tell them I'm "fine" - same way I get better treatment if I only complain of a few symptoms, rather than the whole gamut. generally, if they can't see it, it won't get taken seriously, anyway.
  8. I have it much of the time, but it gets worse with my other symptoms. Sometimes it goes away. It seems to have gotten better since I've been taking Florinef, and even more so with Midodrine. I'm titrating down on Florinef right now, though, since my blood pressure was getting too high on it, and it's been getting worse again.
  9. Hi, My bp doesn't drop right away, usually, but it often drops very low after I stand for about 5-10 minutes. I take Midodrine and Florinef, and along with compression hose, salt, and fluids, they seem to help a lot. My doctor was initially planning to give me a beta blocker, as well, but when I showed him my record of orthostatic vitals, he said it was out of the question. Though my heart rate gets quite high, it barely compensates for the bp drops, as it is - it's a compensatory mechanism, in my case, and lowering it would likely cause more problems than it would solve.
  10. I used to, but it's too expensive (even the drug-store brand). I just drink Gatorade now.
  11. I just went to their website - they seem to have come out with a new product line that doesn't contain artificial sweeteners ("U natural hydration"). They seem to have somewhat different electrolyte content, though - about half as much sodium, from what I can tell.
  12. I seem to have had some symptoms since late childhood - maybe due to the EDS (you seem to forget that many people here have POTS secondary to hypermobility issues, which can cause impairment in the vasculature, and not due to trauma or infection). when the symptoms really hit, about 3 years ago, it was shortly after I'd had some kind of upper respiratory infection, and the next day after I flew Boston-Stockholm (mind that I've flown across the Atlantic countless times, though - I'm guessing at that point it just happened to be the proverbial straw).
  13. I don't faint. I actually seem to remember reading, in some journal, that most patients with POTS don't have syncope. Orthostatic symptoms, plus a significant increase in heart rate, is enough for a diagnosis, generally.
  14. I take my Midodrine, and whatever stimulant I happen to be on, 30 minutes before getting up, as some here also do. I also try to drink 16oz. of water rapidly about 5-10 minutes before getting up (it creates a pressor response), and usually put on compression hose right before getting up, as well.
  15. interesting! too bad there wasn't much of a pattern. I'm always curious exactly what's going on in my case, since I seem to have the odd combination of ANS problems secondary to EDS (with a history of ANS problems in that parent who also has EDS), and ANS problems due to a "moderate" length-dependent autonomic neuropathy (which my doctor suspects may also be somewhat hereditary, but goes back to the other side of my family!).
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