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Hi all, I am 27 and have the EDS, MCAS, POTS trio. Getting much worse the past 2 years or so. I am relatively new to learning about the Driscoll Theory but am amazed at how it lines up with so many of my symptoms and health issues. I have two questions:
1) I’ve seen a few places online people mention that not everyone takes Diamox long term. How do you know when to stop Diamox? (I haven’t tried yet, but plan to speak with my doctor about it). Why would the ICP issue go away if it’s caused by EDS?
2) I am very eager to start Parasym Plus (LOTS of GI issues and so many low acetylcholine symptoms). Do you take Parasym Plus in place of Diamox or in addition to it? Are they addressing completely different problems, or does raising acetylcholine somehow affect ICP?
Thanks so much!!
Hi Laura, I guess it goes without saying that you’ll want to work with your doctor on this! It can be tricky to figure out if Diamox is needed (or if/when you can stop taking it). That’s what many of those MRI’s and ocular images are for (more info ad nauseum in The Driscoll Theory). Your doctor will discern whether you could have external communicating hydrocephalus, IIH, a small Chiari, or a condition that could mimic any of these. The details are important! For more information to help you through the Parasym Plus questions, please check out http://www.ChronicDiseaseDigest.org. BTW, I’m curious why you think EDS is causing your symptoms of high ICP? 🙂
Thank you so much for your reply! I think I misread some of your information about EDS, head circumference, and high pressure… and assumed that abnormalities caused by EDS directly caused this high pressure problem. Is there any information on what can cause this condition of high pressure/what to look for if you suspect it?
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