gosh,qanik, please allow us to talk you through part of it until the slightly revised version is available (assuming $999 is out of your budget? ha). When a book is currently out of print, people with ‘bots’ take a copy and put it at a very high price. This guy has about 2,000 difficult to get books at exactly the same price. OK, I digress. I needed to revise the title, certainly, because when people saw “CCSVI”, they somehow jumped to “treat it with angioplasty”. Yikes. We DO have vein problems — potentially serious ones. To get you started until the revised version is out, please ask us! PalominoMorgan has been here from day 1, as have many others. Most know the basics of “The Driscoll Theory” and can get you started. Meanwhile, numerous other researchers have now accepted and are researching WHY we all seem to have “mast cell activation syndrome — mediator negative”. We respond beautifully to double or TRIPLE doses of H1 antagonists (like Zyrtec — check with your doctor, OK?). Some Xantac can help. If you’re better, then ask your doctor for Cromolyn Sodium (a mast cell stabilizer). Please see the videos on how to get this inexpensively. If you have symptoms of high intracranial pressure or Chiari, Diamox is a HUGE help (ask your doc to try an evening dose). Then you’ll be up to speed, my friend, and ready for ROUND THREE!! As we peel back the diagnostic layers of the onion, and treatment is begun (and needs to go in a certain order), we are hitting the CAUSE of the dysautonomia, not just treating it symptomatically. If you respond well to mast cell meds, or have an abnormal MRV, spider veins, livido reticularis, easy bruising, etc. beta-blockers and too much SALT can make your endothelium worse. NOT good. This flies in the FACE of “traditional treatment”. It took me years to realize, without a doubt, my doctors had no idea why we (EDSers) developed dysautonomia. Please watch some of the vids, as they’ll take you through some of my 9 year journey… Hang in, my friend. 🙂 Diana
I appreciate all the feedback. I had a very bad flushing episode about a month ago during a presentation- talk about embarrasing!- flushed, weak, light headed etc. Anyway my neuro thought perhaps masto type symptoms and sent labs a few weeks ago (tryptase and urine that were negative). Interestingly he told me to take some zyrtec until he had results and I thought the one dose a day helped with my brain fog but i stopped when he told me the labs were negative.