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Everything posted by mehganb81

  1. I love your doctors name, keeps me sharp
  2. Are you able to sleep at other times? There have been times where I get 8 hours just perhaps starting at 1 am and then seem to regulate back to normal later. I think the quiet of night is nice when I’m overstimulated.
  3. I don’t do well with iron vitamins myself, I have better luck with beef liver capsules. The heme iron seems more easily absorbed and no nausea.
  4. I would try my best to hydrate, nourish yourself, rest.
  5. I drink 3/4 liter quickly in am of hydrating drink, broth, sometimes some veggie juice than try to spread the rest out through the day.
  6. I do not do well in heat and humidity. I enjoy cold as I can find ways to warm up. I cannot say dry heat is any better for me but I think it really is dependent on tolerance. I have done best in coastal PNW and San Francisco Bay.
  7. I haven’t tried licorice. But eye problems really bother me, hard to ignore
  8. I also prefer homemade drinks. I can change the flavors. In winter I enjoy warm water, sole, lemon, and a touch of honey. I have ave some normalyte pure for convenience, don’t feel it works better than anything I make.
  9. Have you tried sole? (Pronounced so-lay). Sole with some lime and some watermelon is a quick drink to make to go. My favorite summer drink
  10. Squeeze of lemon and lime, and some coconut water. Berries. Parsley and cucumber/celery I often have these type of drinks with a few salty olives or some organic veggie juice (like V8)
  11. Interesting. i do not have any experience but am looking forward to hearing about it
  12. Sorry it was horrible. Been reading about the test, hopefully some good info to help get you good treatment
  13. I do not use medicine between flares. I always have symptoms and have never returned to pre-pots but managagable. I have three kids (all born after POTS) and was very careful not to get deconditioned while pregnant. I have had POTS for 15 years and I think have made lots of changes and adaptions to try to maintain as well as I can with a chronic illness.
  14. I would be interested to hear about it if you decide to do it. My right ear has lost 50% of its vestibular nerve function. When I get sick I never know what to think, pots or ear. I have never regained my balance fully, my husband is currently installing new front walk because he worries about my balance so much. What are they hoping to determine by doing the test?
  15. I actually prefer less follow up and less testing. I have had POTS for 15 years. I see quite a few specialists at the U and generally have been happy.
  16. I am a pt at the U too. Heat is miserbale right now
  17. I used to plauged by frequent chest pain, but it has since ceased since switching my beta blocker to toprol extended release which delivers the medication over 24 hours. My doctor explained that my heart maynot be getting the oxygen it needs temporarily during a PVC or tachy episode, hence the pain. It generally passed very quickly. While there is no danger to the heart it is very scary and I am glad to have gotten rid of that symptom. I hope you find something that works for you.
  18. I too take a low dose of Effexor, which has helped my symptoms. Effexor affects both serotonin and norepinephrine. I was skeptical at first but am glad that I decided to follow their advice. My one suggestion is to have a psychcologist manage the dosing. They have much more experience with this class of drugs and have an extended knowledge of possible side effects. My psych doctor checks in with me every 3-4 weeks to check on me, it is very nice. I also see a Liscensed clinical social worker every month for an hour to talk about my illness, its effects on my relationships, and sacrifices I have had to make. I think this has also been very helpful to have someone to talk to. She has experience with dealing with clients who have chronic illnesses and has had many helpful suggestions for learning to live with a chronic illness and coming to terms with the changes I have had to make.
  19. Hi, I was diagnosed with shingles in december of '04 after sucessfully controlling my Autonomic dysfunction symptoms for about 2 years without any major problems. My body is extremely tired from dealing with shingles and my autonomic symptoms are back in full force. I had to take a leave from graduate school to take care of myself due to overwhelming fatigue, palpitations, and numerous fainting episodes. Eight months later I am just starting to feel like I am getting back to myself. My doctors explained that indivuals with dysautonomias often have extended periods post-viral symptoms. I caught my shingles very early and was able to get into the doctor for a anti-viral called acyclovir. I was lucky to only be in terrible nerve pain for about two weeks and have minimal lingering pain. I wish your friend the best and hope she recovers more rapidly than I.
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