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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.

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?

October 11, 2011 at 6:16 pm #1528
Dr. Diana
Keymaster

I have it on a chronic basis. Worse when I first wake up but it is always there at some level throughout the day. I have knots from my neck to my shoulders and in my upper back non-stop as well. I’ve been a mooch for having the back of my neck, at the base of my skull, squeezed and massaged ever since I was itty bitty 🙂

I’m willing to try anything! (Been a LONG, tiring week. I’m not just out of spoons….I’m out of any and all cutlery altogether at this point. It is a sheer act of willpower and masochistic stubbornness to drag my self around right now.)

Marie

Hi Marie, I love someone who laughs in the face of adversity! “I’m out of any and all cutlery” — can I steal that line? 🙂 OK, Hon, all of this will be in Part 2 of the Driscoll Theory in more detail than anyone really wants, but in a nutshell — can you get a soft cervical collar at your drug store and wear it at night, then tell me how you feel the next day? If GREATLY improved, this is becoming a ‘quick and dirty’ way to see if someone’s intracranial pressure is increasing at night time. If the collar is a big help, then a trial with Diamox (if you have no contraindications) may be in order. Even one pill, one night, should tell you. The difference is not subtle. If that works, then we can get into your options. (Very basically, when the pressure increases, we tighten our neck muscles to try to protect our brainstems. The muscle tightening actually pulls down on the skull up to about 3.6 mm (I met a researcher working with the movements of skull plates) — just enough to cause what doctors are calling “cranial settling”. This causes your intracranial pressure to spike. By keeping the muscles relaxed with the collar, you will avoid the skull being pulled down by the muscles. Cool?