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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?

August 30, 2012 at 3:25 pm #2824
MJ
Participant

I’m so glad the deafness cleared up! I’m still suffering a bit from tilting my head like that, but it was worth it to get the picture. I have not been tested for mast cell activation. No one is taking me seriously or even trying to help me – I am not being tested for anything. I need to find a doctor, as mine just relocated. The only thing I have a confirmed diagnosis of is Classical EDS. And I have POTS ‘unofficially’ confirmed, with my Naturopathic Doctor doing a poor man’s tilt table test in her office. I’m pretty sure I have Mast Cell issues, Dysautonomia, CCI and CCSVI, just to name a few.

I looked up diagrams of neck veins, and I believe that vein is the external jugular, and I believe that the internal jugular is also over-sized. You can see the enlarged vein branching off a bit, but then it disappears. I think that is the internal jugular and the swelling stops when it goes behind the muscles and becomes ‘internal’.

Also, I believe I read that there is a valve about 4 cm above the clavicle, which is where the vein appears to stop. So, it could be that the part of the brainstem that controls valve function is being ‘pressed’ on by something with certain head movements. It could also be that the part of the valve that prevents the back-flow of blood is somehow becoming impaired. There are so many possibilities. It may even be related to the heart.

Thank you SO much for chatting with me about this Barb. I posted the pictures, and although 50 people viewed them, no one replied.

Take care,
MJ

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