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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: UPPER LIP HAS DISAPPEARED & SEVERE GINGIVITIS ON TOP JAW ONLY – BLOOD SUPPLY?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Skin › UPPER LIP HAS DISAPPEARED & SEVERE GINGIVITIS ON TOP JAW ONLY – BLOOD SUPPLY? › Reply To: UPPER LIP HAS DISAPPEARED & SEVERE GINGIVITIS ON TOP JAW ONLY – BLOOD SUPPLY?

March 8, 2012 at 8:30 pm #1805
MJ
Participant

Thank you so much for your response! As far as the hydrocephalus goes, I tried the neck brace. I felt 75% better as soon as I put it on. I tried it while sleeping (as you’ve suggested to others), but I honestly need it during the day as well. Right now, if anything (my dog even just slightly pulling on the leash, lifting something, or even just a simple movement) moves my neck muscles, I have symptoms! And when the pain and pressure in my head is severe and I use my neck muscles, I become SOB (short of breath), burning hot, get the tachycardia and become very weak. Surely this must be the answer to all (or most) of my health issues? Any ideas anyone? I think I can’t hold my own head up (CCI – cranial cervical instability) and all of my muscles in my neck strain until they feel like steel, which would put pressure on nerves, etc. I live in Canada and one day I wore a neoprene ski mask when it was -20 and I felt so GREAT! The mask pulled my chin down into the proper position and held it there (it attaches with velcro at the base of the skull). My head was not falling back and I could hold it up with little effort. And with the mask and the neck brace together – I felt great with my head being stable on my spine. Right now, I am in agony every time I take off the neck brace. I have been suffering for 20 years now and I am on disability and struggle with simple ADL (activities of daily living). The neck brace has increased the quality of my life by at least 50%, and it doesn’t even put my head in the proper position. If anyone has ANY ideas or theories or information I should take to my doctor, I would be so, so grateful to hear them.
Thanks,
MJ

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