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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: A theory for EDSers with small heads

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › A theory for EDSers with small heads › Reply To: A theory for EDSers with small heads

March 26, 2012 at 12:52 pm #1909
ourfullhouse
Participant

Bee,
Very interesting. I don’t seem to have low CSF pressure, because Diamox helps my symptoms, but find the connection to making breast milk fascinating! I wonder if the same principal in low CSF causing the brain to “droop” and therefore put pressure where it shouldn’t, would be the same as high CSF also putting pressure where it shouldn’t, because for me, ever since I had my first baby 26 almost 27 years ago, after I wean the baby from nursing, even YEARS later(even 3 years later!), I still have milk (very inconvenient when having a mammogram done!). My doctors have chased this around for years, and my prolactin levels are usually within normal limits (though I have seen my labs and a few times it was a little high, when I wasn’t nursing or even lower than it should be during pregnancy. Not sure what that means). They also suspected a pituitary tumor, etc. But, MRI’s and tests all said that wasn’t it. And, I just realized after reading your post that since I started taking Diamox, I am finally truly dried up for the first time in 26+ years!

Sorry I can’t address the low pressure side of this, but I think you are onto something here for sure! =)

~jerri

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