Selma, Great idea to post Dr. Diana's video links here. I had just recently discovered The Driscoll Theory, and her website, prettyill . I know of at least one person with EDS whose life has been improved fantastically due to Dr. Diana's research. This person figured out that her worst symptoms were triggered by head movement, and after reading the info on CCSVI and EDS with POTS, found a doctor who diagnosed her with CCSVI. She recently had surgery to correct this, and has gone from a wheelchair to planning for college. No more fainting!
I printed out and gave a copy of Diana Driscoll's Theory to my son's doctor to read, but I don't really think my son's symptoms point to cranial hypertension or mast cell activation. He has symptoms of hypermobile EDS and severe postural hypotension, with tachycardia, but also has endocrine dysfunction, so difficult to figure out what's really causing his severe hypotension. He is due for another MRI soon, and his doc says they would be able to see excess CSF in subarachnoid spaces.
But I am spreading the word, where appropriate, about the Driscoll Theory. Some neurologists are starting clinical trials to test it, so there is definitely merit to the correlations.
Hi thanks, We have so many in the Chiari forum too that have EDS and related issues and it is difficult to get members to listen to me...lol...so, I was hoping that they might get something from Dr Diana.
I am finding her theories all very fascinating and informative.
Hi....for the past 3 yrs my PCP has me on antihistamines.....so long b4 her theory was public....and it does help me in several ways....1- I sleep much better...2- controlling my PND also helps my GERD/reflux ....3- overall joint pain is better as well.
Do talk with ur Drs to find out if this is something that may benefit u....and have ur Dr review the video....
I am not on DIAMOX, but was on TOPAMAX for quite some time and no longer need it. TOPAMAX is similar to DIAMOX in that they are both diuretics and help with our headaches.
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