Just tried to submit a long (grateful) update but it got rejected. Maybe I will email you so I can share the good news, until you can tweak the spam filter some more…
Hello, friends, here is Beth’s email to me. She asked that I post it to share her news. It gave me goosebumps!
Actually, my news is even better today… Emily has had no headache at all today. For the first time in 2 years, she is headache free. Seems like a dream, to be honest. And I know it is a miracle!
We did bump up to 125 mgs (which is the dose that actually was prescribed, so no problems there) after the first night and that seems to be doing the trick. Yesterday, her headache was only a 1 on the pain scale – her neck hurt and she couldn’t say for sure she didn’t have a bit of a headache. Then today, no headache at all. Amazing – and for all of $4.28, which is how much we paid for the diamox.
And, not only is the diamox taking away the debilitating symptoms but it is diagnostic as well. The headache is not a migraine, not a rebound headache, most likely not even cervical instability. Diamox would not help any of those and it is no coincidence that after 2 years of a single, constant, horrible headache, she takes diamox and suddenly is better the next morning. We are documenting her symptoms or, more accurately now, the lack of symptoms. We had already started her on the mast cell treatment a few weeks ago (which had amazingly positive results as well, also within hours) and were already documenting that progress.
I feel like the pieces of the puzzle are falling into place and she now has a chance to get better – to strengthen her joints and muscles, to do her PT. She has a chance at life now and I don’t even have words to express how grateful I am. This theory and research came into our lives at exactly the right moment to prevent us from having a cervical fusion. I feel so blessed. But I am saddened for those who aren’t as lucky.
I will continue to share the hope of this theory/treatment with everyone I can, on my blog and everywhere I can. And I will do my very best to help our doctors understand and accept that this is real hope to people who need it, so others can benefit!
Again, all I can say is thank you and God bless you, Dr. D!