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cleo

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Everything posted by cleo

  1. I find that a sprizt bottle really helps me a lot in the heat. Hope you a feel good and have a wonderful time:-)
  2. I've noticed this too. There are very nice people on this forum. : )
  3. I was very lightheaded after mine for about 5 days and then the lightheadedness left and I felt fine. A few months later I developed a viral infection and the lightheadedness returned and has pretty much been with me ever since.:-)
  4. You and I must have the same blood pressure machine. Mine too always errors out when I feel my worst.
  5. Bending down always makes me lightheaded:-)
  6. Thanks everyone. I've done some pretty dizzy things since I developed pots but setting the table with a shower curtain has been my dizziest so far. I'm hoping not to top it, but you never know:-)
  7. Tommorow is Passover and typically its a day of a lot of lightheadedness for me due to all the standing. I thought I would get a jump on things by setting the table today. I put on it what I thought was a beautiful embroidered tablecloth which I just inherited from my aunt. While I was admiring it I noticed what looked like buttonholes on one side. I couldn't imagine why they'd be there but thought the cloth is really old and maybe they had some purpose I couldn't think of. My husband just came in for lunch sat on the buttonhole side and said "Why are we eating on a shower curtain this Pass
  8. Thanks for all your replies. I think maybe the only good thing about having pots, if there is a good thing, is it makes you appreciate everything. Yesterday I went to a book group that I didn't think I was going to be able to go to and even though I didn't feel well I was so happy to be there. I even appreciate being in the supermarket. Breccia, I took risks too driving when I first developed pots. Looking back I realize how fortunate it was that I never caused an accident. I hope everyone starts to feel better. Being stuck at home is'nt easy.:-)
  9. I'm unable to work due to pots and sometimes feel socially isolated. I know I'm fortunate to have my husband and grown kids but there are times during the day that I could talk to a wall.:-) Am just wondering what everyone else does for social interaction.
  10. For me the hardest part of having pots, not counting the symptoms is sometimes the isolation. I'm fortunate to have my husband and grown children but miss the routine of getting out and seeing people. We took our dog to the vets today and it felt great just to talk to the people who work there. I think its great that you were able to do so much. While pushing ourselves is super taxing it sure is good for our state of mind. :-)
  11. Spinner, I didn't mean to infer that a miracle happened for me or that we should stop looking for answers. I'm very grateful for the improvement I've made but still do live a compromised life.
  12. I'm very fortunate that I've never passed out from pots although I've come close. When I first developed pots sometimes everything would go black. Your story about going to your friends daughters trackmeet reminded me of when my kids were young and I would go to their soccer games. I would be so lightheaded and drinking and drinking to combat it and inevidentally have to use the bathroom badly :-) There was never a bathroom at the field and I was always too lightheaded to drive and did'nt want to take my husband away from their game. Oh the agony:-) I think you,re going to the track meet
  13. My heart goes out to you, Becia. When I was diagnosed with pots 17 years ago there was only the tilt table test. I don't think the docs knew about the different types of pots then so once you got the pots diagnosis you were pretty much done. I tried the medication florinef but had to be taken off it. As time passed I slowly got better and better. A lot of the time it was 3 steps forward 2 steps backward. I never got back to my pre-pots self but I regained a lot of the quality in my life. I have my fingers crossed for you that things will get much better for you too.
  14. My pots acts up whenever I have a crohns flare. Actually it acts up whenever I'm sick with anything :-) For awhile I took florinef for pots but had to discontinue it because it drove my bp sky high combined with prednisone. Seems like the three of us are good examples of the aut oimmune mechanism ramakentesh was talking about. I don't know why but its comforting to know there could be a connection between the two.
  15. Thanks for your replies. I am ashamed to say that once I started to feel better I did not keep up with the lifestyle changes. Now I'm doing them again hoping they will help. Looking back I think that all the caffeine I drank to keep me upright may have ultimately hurt more than helped since it is dehydrating. When I was first diagnosed I was put on florinef but had to come off it because it drove my blood pressure dangerously high when combined with prednisone which I take for crohns. I hope both of you get better and better from pots. It seems like even though there are bad days over ti
  16. When I first developed POTS I was so ill I could barely sit up. Over time, (alot of time) I gradually improved. This past summer I noticed that I was starting to feel a little more lightheaded than usual but was still able to function pretty well with the help of a little extra caffeine. For a month now I've been experiencing really bad lightheadedness. I feel like I have gone back in time to a place I never wanted to return to : ) Its so discouraging. Has anyone else experienced this and ultimately began to feel better again?
  17. Just wondering if anyone is from my neck of the woods?
  18. Wow. That's really interesting. My pots is with me all the time although some days are worse than others. I had remicade infusions for about ten years before discontinuing them due to an insurance issue. I think the remicade may have helped my pots possibly because it increased my blood count. I miss it but in some ways am happy to be off. It has some scary long term effects:-)
  19. I take prednisone for crohns and higher doses of it always seems to help my pots. Even before I had pots prednisone always made me feel energetic and generally well.It also gave me insomnia. Its unfortunate it has bad long term side effects.
  20. I was diagnosed with pots at Mt Sinai hospital in NYC many years ago, Maybe it was before the autoimmune tests were available or even before it was thought that pots could be autoimmune. I really think in my pots is autoimmune in origin. I've noticed some of my crohns meds make my pots better, like prednisone and remicade. Unfortunately they both have bad long term effects so I stay on the lowest prednisone dose I can and have stopped taking remicade.:-) If only there were meds with only good side effects:-) Take care and feel good
  21. My initial diagnosis was autonomic dysfunction with neuropathy. I don't know the doc came up with the neuropathy diagnosis. The only tests I remember having were a number of tilt tables and a lot of blood work. If pots is autoimmune then that would explain how I got so lucky to have both:-) Of the two, crohns has been a lot easier to live with.Crohns has made me feel sick in the past but initially pots really took me off my feet.
  22. Does anyone here have Crohns as well as POTS? I developed Crohns in my twenties and then in my early forties POTS.
  23. I know how you feel. I'm going to be having an impacted wisdom tooth removed. Am so sensitive to meds. It just complicates everything. I've heard that some dentists offer pain killer that doesn't have the stuff in it that makes our hearts race.
  24. I'm not on any pots meds. I used to take florinef but had to discontinue it when it interacted with the prednisone Im on for another medical condition. I'm really sensitive to many meds so less is better for me.
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