March 18, 2015 at 2:02 am #811
I see you asked this question
Hi my friends, No matter what your condition is, who here has that horrible pain in the base of their heads in the back (occipital area) that radiates down their necks to the tops of their shoulders (in what we call an “angel wing pattern”)?
Please let me know if you have this or wake up with this. It is the kind of tight muscle pain that gives us knots in our neck muscles, and we would give our first born to have that area massaged (well, maybe the second born. ha).
I think I have an answer!! THIS is exciting! Big hug,
I do very severe. A neurologist gave me a series of shots the end of 2013. Didn’t help much. It is back and even worse than beforeMarch 19, 2015 at 10:23 am #5395Dr. DianaKeymaster
Did you get a copy of the book yet? (The Driscoll Theory)? I revealed the cause of that for most of us (generally high intracranial pressure, sometimes encouraging Chiari symptoms). For many of us, Diamox (sometimes with Lasix) is all we need to correct it. It can be tricky, so I included a chapter about how to do this right. I hope it ends your suffering! 😉March 19, 2015 at 6:37 pm #5400
I think I orded it. I ordered a digital booklet and bookMarch 19, 2015 at 6:54 pm #5401Dr. DianaKeymaster
It sounds like you may have the “EDS and Your Eyes” booklet, and perhaps the old Driscoll Theory book? The new book is not in paper form — its an ebook. You’ll see it on the landing page of this website. The chapter about “Diamox Pearls” is in Chapter 11. This book is full of information about POTS and EDS, and has numerous medical authors (some of the doctors are also patients!) and you’ll hear from some patients directly. I hope it is a huge help! 😉March 20, 2015 at 1:47 pm #5402
I’m not sure which one I ordered. It showed up on my statement so I know I ordered something.
I tried to send a pic of my granddaughter to you on the forum but it wouldn’t go through. Is there another way I can send it to you? Talk about Hyper-mobility. You can even see her arms the way you showed on the videos. I use to think wow she is good, but now I fear. My daughter in law is sensitive about some things. I just need to know if there are things I need to watch for.March 28, 2015 at 5:13 pm #5410
The book I ordered showed on my statement as PAYPAL *GENETICDISE I ordered it by clicking on the “Buy it now” button. How do I get to the PDF file?
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