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Wish They Tested Their Cfs Patients For Pots.


jangle

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Thanks Issie,

You are right I started it 20 years ago for TLE ( Epilepsy ) but do not know if it might have been working by another mechanism. I went off it a couple times during the 3 years I have had this "dizziness" stuff( not listing all my symptoms including abnormal tilt.) I am doing well now so am staying on it.

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Potluck,

Since you've been back on it - do you notice if it has helped with the brain fog stuff that we seem to have with POTS? I noticed in the article above that they are using it for Alzheimer's. Also, have you had your NE levels checked since being back on it? Have they come down?

I know you are exercising a whole lot more. Were you able to do this off the med or did it take getting back on the med to allow you the ability to exercise again?

How does the med make you feel? Does it help with the surges? No more "lion in the room" feelings?

Issie

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