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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? › Reply To: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders?

November 14, 2011 at 8:40 pm #1579
Dr. Diana
Keymaster

Wow, funny you should ask that! That has been one of my chief complaints for several years. I haven’t tried the collar yet. The question I have had about this type of headache is, why it almost always starts when I am sleeping on my back. (Sometimes when on my side, not nearly as often.) The severe pain in at the base of my skull, down my neck and down to shoulders wakes me up, but it is too late by then for the pain to subside by turning onto my side. (Sometimes it helps) The pain will continue sometimes for the whole rest of the day, and not responding to NSAIDS. That pain will at times cause nausea and an overall skeletal type pain. I have less severe pain in the same locale when I have my head down, such as when reading, writing, cooking, and using the laptop, and if I look upward, like when hanging a shower curtain or putting on mascara.(?)Oh, and even when wearing a turtleneck!(??) I had cervical MRI that doesn’t show a neck problem that would cause this degree of pain. Does this description suggest an intercranial pressure problem? I do have other symptoms that do.
Thanks so much for any help/ideas.

KC!!!! I figured this out this WEEK! Some of us actually go into SHOCK while on our backs. For now, try to sleep slightly elevated and on your side, OK? I’m writing this up for Dr. Francomano. Are you taking Diamox yet? Betcha that would help! For my kids and I (and it’s getting to be hundreds of you, it is a life-changer. And if you are on mast cell meds, NSAIDS aren’t recommended (they cause mast cell degranulation). Tylenol, OK? Big hug, Diana

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