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smullinix

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  1. I, too get the internal quiverings. I feel it all over, but especially when I cough. When I cough, under my rib cage tends to quiver quite a bit. It's weird for sure. I think it's something autonomic, too. I keep hoping it will happen when I am at the docs, so they can listen to see if they can hear what I am talking about. Otherwise I think they will think I am crazy. LOL Sue
  2. I have been on Midodrine since this past September. I started at 5mg 3X a day, and the doc wanted me to increase to 15mg 3X a day. Well, I got horrible migraines on the 5mg 3X a day and asked my Mayo Clinic doc what I should do. He said that I may not tolerate it, but the headaches could go away as my body gets used to it. He did warn me not to increase the dose, though. I stuck it out because I was feeling much better with it than without and it took about 2 weeks, I think, to stop getting the headaches. I do get the chills and creepy crawlies with my scalp, but for me it is worth it to feel better. As far as fatigue goes, it didn't help with that. But I can tell you the miracle for me has been Corvalen, which is a medical food, so it says, anyway. My POTS specialist recommended me trying it. He also specializes with CFS. It is D-Ribose in a powder form and I add it to G2. I take half the amount it says 3x a day. The full amount made me have diarrhea badly. Half the dose works great, though, and I am back to doing things I haven't done in 2 years! It is about $34 for a container, but it is well worth it. My container lasted about a month. I didn't like the revved up feeling I got from Provigil, but this feels real. Like I am just the old me before the debilitating fatigue. Anyway, I just wanted to share my experience. Sue
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