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Everything posted by Megan

  1. I'm so sorry you are going through this. Hugs, thoughts, and prayers going your way! Meg
  2. I go with POTS if it's someone important in my life. Explain the whole thing as best as I can. If it's someone who doesn't need to know, my fiance prefers to say that I have low blood pressure. He said from his experience (being a non-POTsy) people understand the concept of low blood pressure, but if I say I have a neurological disorder, people tend to think I'm nuts in the head. (which may be so, but that's not the point! :-p) Meg
  3. I've tried some yoga. Just be careful with any pose that puts you upside down! I can't stand on my head or anything, but standing too long or bending over too long make me pretty sick. If you can find stuff that's mostly on the mat, it's pretty nice. Pilates is good, too. Meg
  4. Praying for you and your test results! Meg
  5. I get this, too. Sometimes it turns into a muscle spasm that other people can actually observe, sometimes not. Meg
  6. Are you stuck lying down or in one position a lot? That could cause muscle stiffness. I get it sometimes, but only after having muscle spasms. I find ice and gentle stretching help me. Meg
  7. I'm too brain foggy to give you stats at the moment, but I did want to know that you made me laugh, which I needed. Hope you're doing okay! Meg
  8. Glad your son is home! Prayers for your strength & energy and that he continues to get better! Meg
  9. I feel tachy when standing still, but usually if I check I'm actually not (while on all my meds). Ask your doctor about anything that worries you. That way you can find out what's going on or at least get peace of mind. Meg
  10. I've never had a sleep study done, though that would be interesting. My dad has mild sleep apnea, but I don't think the two things would be related. I've decided that I don't care a whole lot why I feel terrible in the morning and better in the evening, as long as I know that's how it is. I've set most of my classes for evening for college fall semester (twice a week I have a noon class, but still not bad) and I set my own hours for work so I can choose to do parties in the late afternoon/evenings. Can't make my dr appointments work that way, but if I can make it work for me, all the better. Meg
  11. I was finally diagnosed with POTS at 18 (I'm 21 now) after a couple of years of passing out, etc, but I'm fairly certain I've been having symptoms since I was about 10. (One of the biggest things my mom points out-very dilated pupils. small, but a sign nonetheless). Before my diagnosis, I was diagnosed with vocal cord dysfunction and went to breathing therapy, diagnosed with various personality disorders, because obviously if they couldn't find anything wrong, I must be nuts. I had an endoscopy, went on an extremely low carb diet (which I hated), had a laporoscopy to look for endometriosis, went on various anti-psychotic medications (which made things worse) and there may be other things that I simply can't remember. I went from specialist to specialist and saw so many doctors I could probably not even name each of their specialties, much less their names. I got the anxiety diagnosis many times, as well. I do have an anxiety disorder, which made it difficult to tell people that I knew there was something else wrong. So like basically everyone else, I went through a lot before I got the right diagnosis. Meg
  12. As terrible as "experimenting" is, you could ask to try a third beta blocker. Or, if you think your heartrate is going too low, ask if you should be on a lower dose. I am on florinef and midodrine, but am actually increasing my bb dose right now. As far as balancing the side effects, I'm really not sure. Meg
  13. I get a lot of POTS pain, the feeling like you've been run over by a bus that you describe. I don't have it every day; if I'm having other POTS symptoms, I'm more likely to have the pain. It doesn't go away when I lie down, unfortunately. I've talked to my doctor about the pain and what's normal (for me) and what isn't, so I know when I should be concerned and call for an appointment. I'd suggest that you be sure to mention it to your doctor in case it is more than just POTS pain. Meg
  14. I almost chose fatigue, but it's the brain fog that really gets to me emotionally. I can usually handle everything else, but the brain fog gets bad and I just sit and cry. It's terrible. Meg
  15. I like it...especially the 1812 overture. Meg
  16. I'm on Depo Provera (the shot). It has helped me so much, even before I realized that part of the reason I couldn't handle my cycles was POTS. Plus, it means one less pill to take. Meg
  17. I do think the saline IV's work better. Drinking Gatorade, salt water, etc, is great, but sometimes I just can't catch up with what my body needs. The IV does it in a short amount of time right into the blood stream. By the time the IV is done I look and feel better. Meg
  18. I take Florinef, and also have to take a potassium supplement every day, as the florinef drained my levels. However, for me, it's worth it. Just a thought. Meg
  19. If you're nervous about eating, maybe try to eat bland foods as well just in case. But not eating won't help anything! Meg
  20. I am right handed but have more problems on my left side. I think it is because that hip is my "bad hip" so it kind of just throws everything out of order. Meg
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