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Everything posted by genie

  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!
  16. Thanks everyone! I have asked the doc's and they are not sure what is causing it. Now I know that I do sometimes run into stuff esp. on my dizzy days!! But, I did have my iron check the other day and all that is good so guessing that maybe it's just another wonderful POTS mark Yeah, does get bad when I want to wear shorts but.. thanks for all the imput, again make me feel 'normal' as I can :-)
  17. Memory is bad but can't remember if I've asked this or not, does anyone have problems with bruising? I seem to wake up every day with more and more little ones on my legs, beginning to wonder?
  18. You absolutely have the right to feel low and sad. There is a lot to deal with, physically and mentally. I find that having friends to call in cases of emergency ?pity parties? J Does help. Also, some sunshine, even if it?s opening the shades and looking out for a bit helps me too and some fresh flowers, what?s your fav, they always brighten the room a bit too. But, all in all you are grieving and you have the right too. Take as long as you need and know that you have support here!!! Sending healing energy your way!
  19. Go for it!! Cruises are lots of fun. I too found myself needing naps, but there are lots of great nap spots on board. I didn't find that the sea sickness bothered me, there was one night that got a bit rough but I've always been a boat girl and didn't find that I had much trouble. But, that was also our last night on board and the next day it took a while for me to find my land legs!! I was running into the walls, guess most just thought I was drunk? And brushing my teeth I hit my head on the mirror, so yeah that was a bit much getting back to normal back on solid ground. But, I'd go again!! A little fun in the sun is always good medicine!
  20. I have had mixed results as well. Tend to be more tired than my friends and family but also try to make time for some down time to rest. I also find gatorade is helpful to bring along. Only had one plane trip that resulted in my passing out, great welcome home!! And then a bit Potsy after that trip but most I do fine with. I don't let the chance of having a 'spell' keep me from flying. Good luck!!
  21. Thanks, all I know now is the valve that is supposed to keep the bile in the small intestines is letting the bile go into the stomach and it sits there, pretty rare by what I can find, go figure! I'll let you know what I find out on Tuesday.
  22. I know a while back we discussed the gall bladder issue among POTS patients. Well, after 3 years of pain after the removal of the gall bladder I had the endoscopy and found out that the bile is now collecting in my stomach? I have another apt with the doctor on Tuesday to discuss all this but was curious to see if any others have been diagnosed with Bile Reflux?
  23. Great thanks for all the suggestions, I'll check these out! Thanks again!!!
  24. Yes, I did have anesthia and did fine the day of the procedure. I was actually on speed, very hyper after the procedure. I have been a bit tired the past couple of days but not bad. Know that my system has been through a lot but still did much better than I had expected. My boss who doesn't have POTS had a different doc and did much worse than I, she was out almost a week due to the weakness and fatigue. I'm trying to take it slow and rest when I feel I need to but again did much better than I'd thought!!
  25. I had posted a while back that I was having to have the colonoscopy and EGD done and I have just retured and wanted to let you all know it went very well. They did find somethings that can be helped with meds' so for that I'm glad I decided to go through with it. I also had an amazing doctor and even though he wasn't up on POTS when we first met he was amazing today and I actually have no side-effects as of now. I was given the miralax for those who may have to have it done, very gentle to my system and they gave me IV solution to prevent dehydration. So, just want to let the ones who haven't had it done yet that at least for me and with the help of this doc my procedure went as smooth as possible, I would recommend him to anyone. So, for those who have to have it done know there are doctors who can make it easier on you and your system!
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