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Has anyone experienced internal vibrations?

Brain & Nervous System | Last Active: 6 days ago | Replies (914)

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@novajeff

It’s important to add BFS/CBFS to the conditions that cause the vibrations, since it is far less detrimental than some of the ones you listed. While those that you list do/can cause fasciculating, BFS is more likely than most.

For those new here that don’t feel like searching my history, the elevator speech of what I’m going through is: started internally vibrating when falling asleep in Jan 2020 after feeling very ill for 2 weeks. After two months or so, the sleep-only vibrations started happening while awake and attacking my calves the worst. After that the sleeping vibrations minimized and moved almost full time to vibrations and muscle twitches all over while awake. Cramping then began and walking was not easy.

In those next months, I saw about 20 doctors including two of the country’s strongest Neuro teams (Jefferson in Philly and Hopkins in Baltimore) and had every possible test except COVID interrupted the planned skin punch biopsy to look for SFN, and a lumbar puncture to look for rare diseases. Ended up receiving three diagnoses of BFS.

Since then, the symptoms come and go in intensity and presentation, but the cramping is much more mild, and I am able to go about life for the most part. I am back to being able to walk 3-7 miles a day to golf, or go ski, etc. It’s certainly not as easy as it was before thus, but it doesn’t stop me. Generally, the worst vibrating and fasciculations now occur when I’m at rest (but awake), particularly after exercise. Basically 75% of the time, some muscle somewhere on my body is fasciculating an vibrating. Just while writing that sentence it hit my right scapula and my left thigh.

I’ve been on 3x300mg gabapentin for nearly year to calm the erroneous signals after trying and failing Cymbalta and some other stronger Rx’s with nasty side effects. Not sure how much the neurontin helps but no side effects for me at all, so I have no plans to stop.

It will always stick in my mind, what the Hopkins neuro told me. She said “we know so very little about BFS that it could easily be another 20 years before we really understand it. All we know is sort of how to try and deal with it through some Rx’s and appropriate exercise.” This is one of the reasons I tell everyone doctor I meet my whole story in hopes that it sparks something to happen sooner to help those of us suffering. I’d gladly toss myself into some research pool if one ever became available.

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Replies to "It’s important to add BFS/CBFS to the conditions that cause the vibrations, since it is far..."

Am not sure if on correct group... but just had teleconference with neurologist... have had p.n. since 2016 and last few months strong shaking inside not visibile outside. He said Essential Tremors. Found out yesterday low on Vit.D and he said a bit low on B.12. I am not on meds for p.n. as have so many other issues going on and reactions to meds.... so now will be searching for how to cope with this shaking inside... it doesnt hurt but it sure is horrible and getting longer and stronger each day... am reading your comments, but cant take it all in at once, thanks for sharing.....j.