Has anyone experienced internal vibrations?

I started having that internal vibrations periodically a few years ago seemed like the first time was after I was on a plane and the first night in bed after a long plane trip I would have it like the bed of internal vibrations and I somehow feel it's coming from the back of my head
I have not ever told the doctor about this, but it seemed to me like you had something to do with my vestibular system plane and the plane is shaking, sometimes get them without having been in any situation where my head was shaking and surprising that other people have had this I assume no one had this so good to know

I started having that internal vibrations periodically a few years ago seemed like the first time was after I was on a plane and the first night in bed after a long plane trip I would have it like the bed of internal vibrations and I somehow feel it's coming from the back of my head
I have not ever told the doctor about this, but it seemed to me like you had something to do with my vestibular system plane and the plane is shaking, sometimes get them without having been in any situation where my head was shaking and surprising that other people have had this I assume no one had this so good to know

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.

@novajeff Hi I seemed to have stumbled upon your comment and it seems so similar to what I am experiencing. I recently started having widespread vacillations and muscle cramps across my whole body and muscle soreness in calves and quads. Soon after I started having internal vibrations and numbness in hands and feet as soon as I started trying to sleep. It basically forces me to stay awake. I randomly stumbled about gabapentin to try for neurological issues and it instantly stopped it for me at the time. I’m following up with neurologists with EMGs as well but I feel like it will come back normal. I feel a little lost and wanted to see if you had any updates because I’ve recently just started getting them back again despite being on 2X300mg gabapentin. Should I try to up the dose? Thanks!