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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: POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin? › Reply To: POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin?

February 14, 2015 at 8:41 pm #5304
Dr. Diana
Keymaster

I think I speak for most of us here saying that we’re so sorry you are suffering so much. 🙁 I think most of us are also familiar with our doctors not understanding our conditions (although I DO wonder what part of the country you are in, if there are bigger centers somewhere?). It sounds like you need to deal with your ICP pressure first and foremost — the rest can wait, am I right? No one here would dare venture a guess as to whether or not you need to have a VP shunt, but if I were in your shoes, I would be working to be certain they exhausted non-invasive treatment first. Good — you have the book, so you have the information about various potential reactions to Diamox — which are allergies, which are normal side effects, which are adverse reactions, etc. Did your doctors make sure your CO2 levels and electrolytes were OK for Diamox? If all is OK, Diamox plus Lasix may give you more help. Some doctors will go with octreotide for a few weeks. Sometimes steroids are used. The thinking is that if your ICP spiked for some reason, could it go back down again, thus eliminating your need for a shunt. If so, what can be done in the meanwhile? Is your vision in danger, is that why they want to shunt? Do you have papilledema and are they certain your eye bulging is not from Graves (or any other cause)? If they are worried about your vision, did they test your fields to see if you were showing hints of damage? If so, did an ophthalmologist think that optic nerve sheath fenestration is an option (invasive, but less invasive and fewer risks later when compared to a brain shunt)? It can be hard to push for answers, but it may be important. Big, big hug…

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