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March 8, 2012 at 8:30 pm in reply to: UPPER LIP HAS DISAPPEARED & SEVERE GINGIVITIS ON TOP JAW ONLY – BLOOD SUPPLY? #1805MJParticipant
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,
MJMJParticipantOMG, I am so sorry that you have Eagle Syndrome. I’ve never even heard of it. What is the next step (aside from not turning your head!)? Do you know what would cause this calcification? Do you have EDS and POTS? Stay positive – at least you have a diagnosis (better to know than not know).
MichelleFebruary 19, 2012 at 8:02 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1751MJParticipantI wake up often in the middle of the night hallucinating (my eyes are wide open & I am awake) and the interesting thing is, it is only if I wake up while laying on my back. I do not hallucinate when I wake up on my side. Also, many times I have touched my face and forehead (while hallucinating) and they range from cold to ice cold. Otherwise, laying on my back just does not feel right unless I have a pillow rolled up under my neck and the Acuball under the thoracic area of my spine. I feel like I can breathe deeply when I use the Acuball to fall asleep.
MJParticipantI don’t think I have it where I can actually “write” on my skin, but what do you think about this? When my heart is pounding hard all over, my veins are distended, my hands are bright red and my fingers are swollen (I get these symptoms just from typing too long – like right now! or from massaging my dog), if you touch my red fingers, they will turn white where you touch, but then it disappears back to red after a few seconds. Could this also be a histamine thing?
MJParticipantWow! Let us know what they say about the comparisons! When I am laying down, I feel the same way you do. Turning my head to the left doesn’t feel right and sometimes looking straight up doesn’t feel right, so I turn my head to the right most times when I lay down.
February 19, 2012 at 6:38 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1748MJParticipantHi Kamillean.
I was recently diagnosed with EDS, but I did not have stretchy skin from birth. However, a childhood scar represents typical EDS scarring. So, I believe I have had EDS my entire life, with the stretchy skin being activated (when I was 30) by a prescription drug for a sleeping disorder. I already had a lot of health issues, but suddenly I crashed and I crashed hard. My skin went stretchy, by muscular body turned to mush (even my breasts turned to mush) and I stopped functioning. Anyway, I believe your daughter can still have EDS. I have also suffered from SEVERE neck pain for over 20 years.February 19, 2012 at 6:29 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1747MJParticipantYes, I have this pain you are speaking of. I also have sore spots on the back of the base of my head (where you are talking about) and if I press on them pain travels down that side of my neck and sometimes into my shoulder (trapezious muscles I believe). Does anyone else have this or know what it is?
MJParticipantYes, my nails are flattening with ridges on each side. They curl under unless I keep them short. Also, I have strange redness under the fingernails towards the tip and redness on almost the entire right thumb nail and strange red stripes on my left thumb nail. My 2 big toe nails were coming off, but they are re-attatching b/c I changed my diet.
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