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Body vibrations when falling asleep or waking?

Sleep Health | Last Active: Dec 5 6:07am | Replies (465)

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@medmysteryseekans

Hello all. I'm very grateful to follow this thread. I experience vibrations, tremors, twitching, pulsating (not sure what to call it) 7 nights per, 365 days per year for the past year and half. It occurs while I'm sleeping, in the middle of the night and while I'm waking. It all started with getting sick (tested for Covid - was neg) not sure if it was a false negative but I was very sick for about a week. It turned into an extreme case of Vertigo followed by dizziness that last for months - not dizzy like world spinning but dizzy like veering when I walk. About 4 months into this I started experiencing a shaking in my eyes while sleeping. It has since gotten worse and it's constant. Now the vibrations are mostly in my head. Sometimes in my chest and lips. It's been happening for well over a year and now I am experiencing a soreness in my skull during the day. I have had every test and have seen many Drs.
I have been to my primary care Dr., blood work, ENT, audiologist, otolaryngologist, cardiologist, 2 different neurologists, EKG, echocardiogram, MRI, CT scan of the head with contrast, hearing test, GYN, Chiropractor, etc. I feel like part of the problem is all of these tests are being conducted during the day. I'm now looking into a sleep study and my Dr. is going to perform 1 more test - a Venogram (thinking maybe it's the blood vessels in my head).
My ears often feel clogged too. I often feel pain up my neck. Often a mild dizziness. I also clench my teeth at night. Not sure if that's relevant.
Where are people going for this undiagnosed condition? Thanks

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Replies to "Hello all. I'm very grateful to follow this thread. I experience vibrations, tremors, twitching, pulsating (not..."

PS - I did experience nerve damage after the 1st Covid vaccine. When the new scary strain of the Virus came out, I did reluctantly get the 2nd shot about 6/7 months after the first although these symptoms did not begin until after I was sick and had vertigo.

Welcome @medmysteryseekans, It's hard for me to imagine the pain and frustration you have been through the last year and a half and not finding any answers or treatments. I hope you get some answers from your upcoming Venogram and possible sleep study.

@asquires and @novajeff may have experience or information to share.

When is your Venogram scheduled?

Been experiencing internal vibes and ringing, humming in my head since I received my second vax. Mainly come on at night when falling asleep or early morning. Lately starting afternoons. These are usually the worse. Can’t exercise. Seems to bring it on. A real burger as I don’t get sick outside of post Covid crap. No flu, etc. I do have DM2, asthma, just DX with HBP and have ADHD. Trying to figure out if supplements help. Zinc and selenium seem to help with severity. And probiotics seem to help . Verdict still out on this. Antioxidants vitamins. B vitamins, MCT oil, chromium, etc. started taking 4 tablets off acyclovir at onset seems to lessen intensity and duration (might be placebo effect but trying to rule it out. No heavy exercise. Sets it off. Sleep? Ha! Problem with all the supplements is cost. I have SSI AND THAT IS IT. If it weren’t for LEIAP etc I would be screwed. Retired professional counselor but no savings due to deceased wife’s cancer for 10 years. And J&J still owed for that. Medicaid is stopping at some point. That is my only savior. Between that and Medicare I have no copays. I know that the vax is the true cause but nobody will admit to this. Some anxiety about going to bed due to tremors and tinnitus kicking in. Also, vibrations from my air compressor seem to be a trigger so that shoots down my woodworking for relaxation. I am still experimenting with treatments myself. Docs don’t want to get involved as out of their comfort zone. Oh yeah and 2:1 heartsick after Covid vax so pacemaker now. I will try to post more as I continue my journey. Best to everyone! Craig. Oh yeah again. Dx with meningioma last year after MRI of brain for neuroscience to r/o other causes of internal tremors. If Medicaid stops I am screwed. My history basically mirrors others like @medmysteryseekans.