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badhbt

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About badhbt

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    Advanced Member
  • Birthday 02/27/1972

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  • Gender
    Female
  • Location
    Kirkland, Wa

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  1. I have hyperPOTS and have gone into remission. Just to give you some hope! I have had up to 5 years of remission.
  2. I had Occipital neuralgia after my C1-C2 fusion. It was not fun. Mine was intermittent and felt like a zapping, electric feeling with certain neck movements. It would happen randomly without movement too. I have never had a migraine so I don't know how to compare the two. After many injections to try to calm the nerve I consulted with a nutritionist who suggested Lipoic Acid. That has helped me the most. I have been pain free for awhile now. Hope that helped some.
  3. I never thought I could give up certain foods either, but when you realize that they mess with your thinking/brain you will avoid them like the plague.
  4. Thank you for your comments. My Doctor agreed to a trial of IV fluids. I will keep you posted on whether they help me or not.
  5. So I had a GI bug over the weekend and I got really dehydrated. My blood pressure was low and my heart rate was really high so I went to urgent care. They ended up giving me 2 liters of IV fluids. The next day I felt great, especially considering the day before. This makes me want to try IV fluids to see if it was a fluke or did it really help me. I have an appointment with my cardiologist tomorrow and I want to try a trial of fluids. Any suggestions on how to ask my Doctor? Any papers/research to help my case? Thanks!
  6. Wow I didn't know they could test all of that in saliva! Please let us know how the diet goes for you. I am going to attempt it I have never read anything where a Doctor says this problem goes away. Hope it isn't too good to be true.
  7. I found this question from the question and answer page on the website. This is Dr. Natasha Campbell-Mcbride's answer to the question below. Can you comment on the use of the GAPS diet for P.O.T.S. (Postural Orthostatic Tachycardia Syndrome)? Many GAPS people have POTS: you get lightheaded (almost fainting) when changing position from sitting or lying down to standing up. It is due to imbalance in the autonomic nervous system caused by toxins coming from the gut (in many people their abnormal gut flora produces too much histamine, for example). Work on your gut flora with the GAPS Protocol,
  8. I had a 10 year remission. I think over exercising and diet brought on relapse #2 I was doing crossfit and had lost 20lbs. I had a third relapse 2 months after delivering my baby when I joined a bootcamp. I will not be joining anymore work out programs...haha.
  9. I recently broke out my old POTS medications because of a new flare. I had tried Midodrine in the past but it didn't work. I tried this time and it is really helping. I think my symptoms are from low bp....I get the dizzy out of it feeling with crazy vision. It seems to help and I can tell when it wears off in about 4 hours. Just a thought.
  10. I too was in Katybug's situation. I did the surgery knowing that it would probably not fix my dysautonomia,... which it didn't. I am not unstable anymore, and I don't regret doing the surgery.
  11. I would stay away from Effexor. It was horrible getting on it and horrible getting off of it. My Doctor recommended Doxepin if I needed it again.
  12. I had a baby in August. During pregnancy and after pregnancy I was able to keep my POTS under control without any medication. A year before my pregnancy I was on the usual...beta blocker, sleep medication, anti depressant. My Doctors did not want to manage the "other" medications so I had to go to a psychiatrist once a month for refills. It really annoyed me because it was pretty much a waste of time. He would ask if I was still having symptoms and he would listen to my quest to find a cause of my dysautonomia. This October I joined a boot camp because I felt good and I thought I could get
  13. Going gluten free was the only thing that helped my brain fog.
  14. I agree with KJay. I think going gluten free was the best thing I have done. I was able to get off of all the medications I was taking.
  15. This topic has always interested me because I noticed that my moons on all my fingers went away when I became ill. I even went back on pictures and I had moons on all my fingers. As I got better a year and half later My thumbs were the first to come back. Now they are all slowly coming back except for my pinkies. So weird.
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