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This is my first post ever. I’m using diamox because raised ICP is so high in me. I’ve developed fight or flight response that will NOT stop (I still have pressure headache, and sides of my neck feel pressured). It won’t allow me to sleep ANY. I have no medications to use. Supplements like melatonin and l-theanine have failed. I don’t know how much longer I can last. I saw some mention that Xanax had helped them deal with this type of sleeplessness. Or some other medication to “shut down” the CNS. I don’t know exactly why this is happening to me, but it is a nightmare and I have nowhere to turn to for advice. I’ll be in TX at PotsCare on May 13 IF I can live long enough to make it. Kind regards to any and all who chime in.
Abigail, I’m so glad you made it to POTS Care! I have a special place in my heart for hyperadrenergic patients! It is a special condition because those adrenergic chemicals make us feel like we could jump out of our skin. We are so happy to work with you on hitting this at the source(s). Hang in, Hon
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“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
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