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PrettyIll

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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Anyone else with POTS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Anyone else with POTS? › Reply To: Anyone else with POTS?

January 16, 2012 at 1:54 pm #1680
amanda1990
Participant

I have EDS and POTS. I take midodrine and florinef for my POTS and they help a lot with pooling, energy, and dizziness. I read that florinef can increase ICP and I’m afraid it’s doing that because my headaches have gotten worse since on it. I also have a questionable case of chiari (3mm herniation.) But, whenever I try to taper off florinef I feel really dizzy and the higher dose (.15mg for me) really does help w/ my dizziness and fatigue. So, I’m conflicted about what to do. Is anyone else on florinef but also have symptoms of increased ICP? also, my pcp is willing to try diamox but he wants to make sure I have high ICP 1st, is there anyway to convince him without an LP?

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