Body vibrations when falling asleep or waking?

Carol1024- your symptoms sound most like mine. I recently went to a neurologist and did an MRI and we are ruling things out. I have a herniated lower disc and I’m starting to wonder if it has something to do with my spine. If they ever tell me what it is I’ll post it.

I think I was one of the first to post about body vibrations when failing asleep and waking up back in August 2022.
It has been very helpful to see all the posts from people with similar symptoms. I think we are all looking to share our information so we might be able to find the common factor(s) that lead to this medical condition. We are talking about feeling vibrations somewhere in our body core (like your cell phone vibrating steadily) that only occurs when we are in the drowsy state between falling asleep and waking up. Also once we wake up they rapidly stop. Although there have been many of you reporting your medical conditions, medications, Covid vaccinations, Covid infections, other infections, and trauma, there are none that are found in everyone affected. I am on no medication, have no medication conditions, exercise daily, ideal weight for my age (74), and have no pain or trauma, Covid vaccinations but no Covid infection that I know of...but still have vibrations. So that to me rules out a lot of variables on what could have happened to cause the vibrations. I do think it is connected to the sympathetic nervous system and is exasperated by stress. My personal theory, after reading as much as I could find about what is happening at the moment we are transitioning between awake and asleep, is that it might be an imbalance in the neuro transmitters that are active during this phase. The neuro transmitter(s) could be too many, too little, or mutated into a a new one. What ever the deviation it seems to be permanent so far. I think vibrations are coming from my diaphragm and that the muscles not making a smooth transition from awake breathing pattern to the relaxed sleep breathing pattern. It also might explain why the only people that have been to get temporary relief were ones that did sleep apnea treatments. The CPAP may have changed the breathing pattern enough that the neurotransmitters behaved differently. Anyway I still have them every night and so far that don't seem to be harmful but very annoying sometimes. The medical profession probably not interested since they number of people affected is small and so not enough money to be made researching it so far. Happy to hear any feed back from you and best of luck with those of you with this and/or other medical issues.

Mine aren't like that. They wake me up. There's no telling how long I have before they wake me up. Thing is, they happen only after I have been asleep. I can lay there while awake and still feel them and I'll rattle until I can't take it anymore and just get up. If they are at a level 1-3, I can turn over and usually go back to sleep. Anything higher and I have to get out of bed. Funny you should mention diaphragm because I seriously think mine is from injury to the phrenic nerve while taking meds and swallowing a huge gulp of air. The phrenic nerve controls the diaphragm and diaphragm controls breathing and when I did the second half of my sleep apnea test with the mask, I had no vibrations for a week and a half. I slept with my nasal cpap last night though and still had them so.......

I am never sure if I have them when I am asleep since I am asleep and don't know. Sometimes I wake up with them and other times they come on moments after I wake up. If I am startled awake like when my cat jumps on me I feel them come on very fast the more severe and then they go away. This makes me think that adrenalin/stress adds to their strength. I agree about the phrenic nerve that it is somehow getting an altered signal on how to function during sleep/awake transition. Thank you for your reply

I get brain zaps that seem to be related to acid reflux.

This feeling also sent me to the ER once, vibrations caused anxiety, paired with a headache and genetic heart issues already, pushed me to the ER. Nothing was wrong after many tests, so I then followed up with all my other doctors. The only thing found were metabolic issues such as low iron, low vitamin D, low B12. Once I started regularly taking vitamins and stopped alcohol intake, the vibrations calmed drastically. They only happen every so often now, not every day like before.

Just updating my original post. The tremors I was having have subsided and I'm now thinking they were most likely due to the onset of menopause, combined with some pretty severe insomnia being caused by some combination of menopause and anxiety. (Tremors, muscle twitching and insomnia are lesser-known symptoms of menopause, and can also be symptoms of anxiety.)

I've also been experiencing some left arm and hand weakness, pain, numbness and tingling for about 14 months that has not worsened. Sometimes a nerve pain runs down my inner arm and into my hand, thenar side (thumb and first finger most affected). Sometimes I also get numbness and tingling in my left leg and foot, that comes and goes.

Brain MRI came back normal. Cervical spine has some disc degeneration and disc bulges. There's something showing up on left brachial plexus MRIs that is most likely a benign tumor or cyst. Neurologist doesn't seem concerned, as we're not meeting again to discuss it until mid-February 2023, but she did say it could be causing or contributing to these symptoms. In the meantime I went to a chiropractor who immediately did x-rays and confirmed my c-spine and thoracic spine have lost all curvature. So now I'm working in an intensive program to help restore the curve in my c-spine and t-spine. It helps my symptoms so I'm feeling hopeful.
I want to note that the neurologists I've seen don't think that my straight spine syndrome has anything to do with my symptoms of paresthesia which seems bizarre to me. My lower spine has not been scanned as of yet. I'm going to continue with the chiropractic care and home exercises despite the neurologists not thinking it matters or that it will help. It has already helped.

Has the chiropractor helped? Any updates on your condition?

Yes, I posted here: https://connect.mayoclinic.org/discussion/body-vibrations/?pg=28#comment-861870

The outcome for me was that I have Benign Fasciculation Syndrome (I get twitchy when I'm tired, stressed, or sleep-deprived), and I'm prone to Sleep Paralysis, as are others in my family.

I also did get tested for C9ORF72 via Genome Medical bc I was terrified that it could have been early stages of ALS. I think a lot of folks share this fear and I really recommend getting tested if you have any family history of that disease. It helped so much to learn that I don't have a pathogenic # of expansions on that gene, which means my kids cannot inherit it either. (A very unkind former family member suggested it, and I developed crippling health anxiety for over a year until I finally got tested.)

Bottom line: Find a good neurologist if you're really worried, and consider testing if that might apply to you. Wishing everyone long & healthy lives.