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For many years now I have had severe gingivitis (pockets) on my top jaw only, and I have always wondered why. And I am sure it must have been gradual, but I have just noticed (LOL!) that I no longer have an upper lip! It was always thin, but now it pretty much no longer exists. After many searches on-line, I have come to realize that the blood supply to my upper lip and upper jaw is most likely compromised. I have EDS, POTS, arthritis in my entire spine, PTSD, Raynaud’s and the opposite to Raynaud’s, among many other things. I have all of the things Dr. Diana speaks of that would indicate compromised blood flow to the brain (e.g. pain at base of skull, head aches, etc.). I think it is very odd that only my upper lip and upper jaw are affected, and I am wondering if anyone has anything similar to this, if anyone has any ideas on what could be causing this or if anyone has any comments on my theory about the blood supply. Thanks.
For many years now I have had severe gingivitis (pockets) on my top jaw only, and I have always wondered why. And I am sure it must have been gradual, but I have just noticed (LOL!) that I no longer have an upper lip! It was always thin, but now it pretty much no longer exists. After many searches on-line, I have come to realize that the blood supply to my upper lip and upper jaw is most likely compromised. I have EDS, POTS, arthritis in my entire spine, PTSD, Raynaud’s and the opposite to Raynaud’s, among many other things. I have all of the things Dr. Diana speaks of that would indicate compromised blood flow to the brain (e.g. pain at base of skull, head aches, etc.). I think it is very odd that only my upper lip and upper jaw are affected, and I am wondering if anyone has anything similar to this, if anyone has any ideas on what could be causing this or if anyone has any comments on my theory about the blood supply. Thanks.
Hi MJ, I wish there was a quick answer for this one! Has anyone else experienced this? I’ve seen a lot of gingivitis with our inflammation, but not just on the top jaw. Since you have some symptoms of hydrocephalus (the pain at the base of your skull), I wonder if you’ve tried to decrease that pressure and if so, if that helped? What do your doctors say? I would think they’d be interested in looking at the blood flow in that area. At a loss, I return this question back to the masses. Anyone have any thoughts? Thanks so much. 🙂 Diana
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,
MJThank 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.
MJMJ, I was the same way. I even tried sleeping in a hard collar!, neck traction, the works! I could not turn my head, go over a tiny bump in the road or look down without becoming VERY symptomatic. Now, we are all different, but if there is any chance that you have external communicating hydrocephalus pushing your hindbrain down a bit (like chiari, but not), diamox may take off enough pressure to lift it up again. Of course, please check with your doctors and see what their thoughts are, but if you try it for even one night, you’ll know if it is what you need. In two months, I didn’t even need a collar any more — this after I felt that I could no longer hold up my own head! It bothered me every minute of every day prior to diamox. Talk to your docs and let us know?
Hang in, OK?
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