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genie

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About genie

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  • Birthday 06/03/1974

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  • Location
    Cary, NC

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  1. Hello all, It's been a while since I've been on and seeing that lots has taken place. Very cool about the bracelets!! I am starting to have days of low heart rate in the 40's and the doc has mentioned a pace maker, I was wondering if any of you have one or have had this discussion. Thanks!
  2. I'm on ProAmatine but no beta blockers, that's why the doc said it shouldn't be my med's, my bp was low too and the proamatine is supposed to help that so he said to increase that and at least my bp is in the normal range now but heart rate is still in the 40's. I am very fatigued and find it hard to move at some points, I'm used to the fast but not so much the slow, this ***** Thanks!
  3. Hello all, I am out of town for a wedding and have been in bradycardia for about 3 days now, low to mid 40's, called the doc and they said it wasn't my med's and wanted me to go to the ER but I didn't. I am trying to wait to see my doc when I get home. Just wondering if anyone has had bradycardia with POTS, I"m used to the high heart rate but have never been this low for this long, just wondering if you have any suggestions? Thanks!!
  4. Just needing to vent my frustration, as I'm sure all of you have similar feelings. Saw my doc yesterday who basically said we have you as stable as we can hope for, with her arms crossed and a baffled look. It would have been good news had I been feeling better than I have seems that I have been extremely fatigued and memory problems and all I could think of was the movie "as good as it gets" kind of made me smile but saddened me too. I'm only 30 and this is it?? I'm having my own pity party, will take me a couple of days and then will be through with it. Just frustrates me to see others my age with so much energy and I have to plan my activities around naps and not doing anything on Sat so I can hope to on Sunday, I know we all feel this so just thought I'd share my pity party with anyone who would like to join
  5. Just wondering if any of you have von Willebrands Disease. This is a condition that affects blood clotting. People with von Willebrand's disease (vWd) may bleed from cuts for longer than normal, and the bleeding does eventually stop. The severity of vWd varies but it usually affects people only mildly. Therefore, most people with vWd live complete normal active lives. My doc just tested me for this have always bruised badly and even more so now was thinking it was due to the POTS or side effects of the med's but found out that I have this?? Just wondering if any of you have had or have been tested for it, a simply blood test can tell?
  6. Hello all, I am a counselor for a rape crisis program as of now and as of July will be a full time student getting my PhD in counseling.
  7. Haven't had a sleep study, but share similar things that have been shared. I get up several times a night, usually bathroom breaks but sometimes just roll over and am awake. I have trouble sometimes getting to sleep, leg aches, can't get comfortable, can't cut of my 'thinking voice' etc.. when all else fails my doc has given me ambien that I only take occasionally. I found the first time I took it it was the best sleep I had had in a long long time. Now I'm not so sure that it's the best but it does help keep me alseep and I do wake feeling more rested but I don't like taking it so only when I've had a really bad week and find myself laying there that I'll take it? So, if all the other wonderful suggestions don't help this has work to some extent for me.
  8. Has anyone taken Lexapro for POTS? My doc recommended my trying this to see if it would help with energy and memory? Just wondering if anyone has tired it and what experiences you've had. Thanks!
  9. The heat sensitivity is something that I think is getting worse? This among other things is on my list for the doc on Friday. I am having to keep the AC on all the time and am freezing my roommate and office mates. They come in the office in turtle necks, but all I can say is sorry but I have to get cooler or go home? I have been sensitive for a while but it has gotten really bad, hot flashes at night and when I can go walking don't feel that I'm sweating like I should, but that could also be a side-effect I've found. Good luck with your test and do let us know what they say and any suggestions they offer!
  10. Actually, he said a gin and tonic without the gin :-) he he A doc with a good sense of humor!
  11. Hello all, I have always 'seen stars' when I was blacking out or passing out but have now started seeing them while sitting at my desk? I have a doc apt on Friday to discuss this but just wondered if any of you have this issues sitting as well? Any thoughts would be welcomed! Thanks!
  12. Oh and I forgot, he suggested 4 to 8 oz before bed
  13. Hello everyone, I saw by my doc the other day and was asking about the nightly leg aches that sometimes get really bad, he suggested tonic water. So, I thought I'll try it, if you don't like tonic water like me it seems a bit like med's but I do think it helps at least a bit so I can get to sleep. So, just wanted to share a home remedy that my doc shared with me that I think helps with this problem. I know we've posted this topic before so I wanted to share my new discovery. If you try it let me know if you notice a difference.
  14. I had neuro tests several years before my POTS was "caught" and I didn't pass the standard tests, can't remember what they call it but he said if I ever was asked to do the "drunk test" I would fail, it was closing my eyes and touching my nose, walking a straight line etc. this was when they found out I had migranes? But, haven't seen one since the POTS? My balance is bad and I do have problems looking straight up, not sure what all that means but the head and neck MRI were normal?
  15. Hi, I live in Eastern NC and have POTS I see a doctor at Duke. Would be glad to chat with you about all of this with you, just shoot me an email. Hope all is well!
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