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Katja

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Everything posted by Katja

  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!).
  16. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? mainly in legs, but also seem to have it in hands and especially abdomen (own observations/QSART shows I have length-dependent neuropathy) 2. Have you ever been diagnosed with EDS or suspect that you may have it? yes, I have EDS-III, in addition to the neuropathy 3. Do you experience symptoms when lying down even after a night of sleep in your bed? yes, I usually begin to feel unwell soon after waking (I suspect I may have some blood pooling supine, as well) 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? no 5. Have you ever been informed by a doctor that you have low blood volume? no 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? some - periodic constipation, constant bloating, occasional cramping 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? yep, my hands get really cold sometimes, when I'm symptomatic (surprised tech/my doctor, during ANS testing) 8. Did your POTS arrive suddenly? I suspect I had mild symptoms for a long time, since late childhood or so, but it didn't really hit until 3 years ago - at that point, it hit very suddenly; I can pinpoint the exact day. 9. Is your skin pale? not very 10. Please the top 6 worst symptoms that you experience with POTS: moderate to severe malaise whenever sitting or standing feeling "drunk" when sitting or standing (feel intoxicated, unable to think, balance problems, incoherent/slurred speech) heat intolerance brain fog exercise intolerance lightheadedness
  17. yep, I have a vitamin D deficiency, too - it was actually someone mentioning it on this forum that got me to ask my doctor about it. I'm at 16.3; the reference range at the lab is 32-100 ng/mL. I'm taking 50,000IU weekly for three months, then we re-test. I haven't noticed any problems with it, so far, and I react to everything, as well. It's actually mentioned here that vitamin D deficiency may be commonly found in POTS, though nothing about why (5th question down): http://my.clevelandclinic.org/heart/webcha...ncope_pots.aspx
  18. I agree - those numbers seem mostly normal. What about them seems odd to you? My heart rate laying down is normally 70-90, sitting is 90-120, and standing is 115-160 (it does not decrease, the longer I stand/sit, and almost always increases by at least 30bmp). My blood pressure is usually normal at first, though sometimes I get an immediate drop, but after I stand for a while, it will often begin to fall dramatically (e.g. start out lying down at 120/80, hr 85; after standing up 110/70, hr 130; after 10 minutes I'm suddenly at 70/40, hr 120, and have to lay down to avoid passing out). The 120/100 reading does seem somewhat "off" to me, but I'm not sure (20 is a fairly narrow pulse pressure, I think - it might contribute to you feeling lightheaded, maybe?). When do you get tachycardia? How much does your heart rate increase?
  19. crystallized ginger worked very well for me when I had nausea from one of my meds - I bought it at an Asian grocery store, and then just carried around a ziplock bag, for whenever I'd start to feel queasy.
  20. I've flown between western/eastern Europe and the US multiple times, mostly with no problems (though the day I first got full-blown POTS symptoms was the day after I flew Boston-Stockholm). I seem to do fine as long as I drink lots of water/Gatorade/V8, and take in lots of salt before, during, and after the flight. I wear compression hose daily anyway, but I also keep my legs at least somewhat elevated throughout, usually just by planting them on my seat, next to me. My symptoms right now are under fairly good control with Florinef and Midodrine (plus salt, compression, and fluids), though.
  21. I have moderate to severe sudomotor impairment - I think this is r.e. inability to sweat (I have distal loss of ability to sweat). it says on my copy of the results that there was evidence of mild cardiac cholinergic impairment, but I'm not sure what this means. I think loss of cholinergic sudomotor nerve fibers can cause anhidrosis. I think I had my testing done at the same place - did you see Dr. Novak?
  22. You can't treat the underlying cause, but you can treat the symptoms. I've started doing physical therapy, with a PT familiar with EDS, to stabilize some of my joints and help prevent further injuries. Depending on the type you have, it may have implications for pregnancy, or there may be other health risks you'll have to watch out for. If you end up having serious problems with some of your joints, it may also have implications for how those problems should (or shouldn't) be treated. To get a diagnosis, most would suggest finding a doctor who specializes in connective tissue disorders. I was diagnosed by a geneticist - I also saw a rheumatologist later, who was familiar with it, but admitted she'd seen about 10 cases in her lifetime. Some specialists also think that the cause of your POTS may help predict which treatments would work best for you. I have both EDS (probable, since it is a clinical dx) and autonomic neuropathy (confirmed), so I may have multiple causes.
  23. I haven't seen him, and I don't know if he's familiar with dysautonomia, but I've heard good things about Alan Malabanan, at Beth Israel (that he's respectful, very intelligent, and thinks outside the box).
  24. not sure. I think both tests are actually used to document hyperhidrosis, from what I remember, but I can't offhand say how.
  25. there are two different sweat tests - the TST, and the QSART. I had the QSART - it measures the actual volume of sweat produced, but only in a few places (in my case, and I think typically, the forearm, distal/proximal leg, and foot).
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