Has anyone experienced internal vibrations?

Curious if any of you have explored the potential of Benign Fasciculation Syndrome. Found out more about that yesterday and it really checks almost every box for me. My one neuro didn’t know about this, and my other neuro disagreed, saying I don’t have fasciculations. I personally disagree with his comment. I feel my muscles twitching and firing all over, often.

Fasciculations (primary symptom)
Blepharospasms (eye spasms)
Generalized fatigue
Muscle pain (Or soreness)
Anxiety (which can also be a cause)
Exercise intolerance (Less Stamina)
Globus sensation
Paraesthesias
Muscle cramping or spasms
Other symptoms include:

Dyspnea
Hyperreflexia
Muscle stiffness
Tremors
Itching
Myoclonic jerks

I was diagnosed with BFS. That diagnosis came after i saw ENT for squealing tinnitus. Finally, I got the scariest symptom of all-the internal vibrations. I feel like my nervous system has gone crazy. No one has any answers (MRI of brain, several neurological tests, bloodwork, etc. all checked out.) Have your symptoms gotten better?

I too have had these vibrations/tremors for 2 years through my entire face since a heart ablation. 20-plus specialists. Hopkins/Mayo and conclusion FND. Very frustrating with no answers. Nothing they’ve suggested as eased the condition. I feel your pain! Some day, some how, and hope there is a cure.

I’m so glad that I found this group. My vibrations feel strong & electrical and frightening when they are in my head. I also have just a very steady vibration in my abdomen and chest. But my symptoms are very sporadic- maybe feeling them for a few nights in a row - then nothing for the next month. Once, after experiencing head vibrations, I had a brief period of blurry vision. I was told by a neurologist that it could be small mini-strokes or perhaps late onset (I was in my mid 50’s then) multiple sclerosis. I haven’t been to a neurologist in the last 10 yrs. I have heart stints and moderate carotid artery blockage. I wonder is it’s all connected.

@patheflin Hello Pat. You sure have given it your all with visiting 20-plus specialists. Two years is quite a while. I understand how frustrating it is running yourself ragged in search of answers only to find the answers are not what was hoped for, and that there is no cure. I have had internal vibrations, spasms, electrifying nerve pains and much more over the years that there is no cure for. If not for nothing, you are not alone my friend, neither are the other members who have been posting about vibrations/tremors.

Functional Neurological Disorder (FND), along with other disorders and syndromes, like fibromyalgia, neuropathy, migraine, CRPS, nonepileptic spells, chronic fatigue, POTS, post-COVID, etc... are treated at Mayo Clinic's Pain Rehabilitation Center. Here is some info:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
This is where I finally went to get a grip and find help with managing my conditions. It really was a life saver for me. Would you ever think about going to a program like this?

You bet and looked into it when I was at Mayo/Rochester. Was hoping they’d have online sessions as I’m immunocompromised and travel isn’t good for me (I returned from Rochester with a bacterial infection). If you have further suggestions, I’d like to hear about them. Thank you!!!!

Not being facetious at all, but what was a huge help to me, mentally, was realizing that I’m not dying from it and it isn’t taking my mobility degeneratively. Is it highly disturbing and disruptive and trying on the patience? Absolutely, but, at the end of the day it’s nothing that is genuinely nasty in most cases. Also there is hope that it will subside, lessen, or at least wax and wane (like in my case).

The insomnia is tough because you know it’s going to get worse when you lay down and your brain slows, so you don’t want to do it... that’s when it rears up, just as you enter sleep. Still, even though I am where I am mentally now, I don’t sleep until I’m basically going to keel over. Combination of my gabapentin and knowing that, at rest the vibrations amplify. It’s also counter productive since there is a solid informal link between adequate rest and lessening vibrations and fasciculations.

Just as a quick recap for those who don’t know or remember my prior posts, I’ve just passed the 1 year mark of a monthlong mystery illness that walloped me, followed by severe internal vibrations including vocal cords, neck, throat, head and chest in addition to the more common leg and arm areas. Had every test under the sun and all were fine, which led to two independent neuro provided BFS / CBFS diagnoses.

One year ago I was bed ridden, crying non stop, scared out of my mind, 2-3 doctors per week, and felt like I was dying of something. Even when I tried to get around my legs would cramp and shake and give out. My nights were a hell of vibrating and waking up screaming with my voice fluttering from the vocal cords fasciculating. My thighs would wake up my wife from vibrating. I tried to walk outside and would collapse from the thigh and leg pain.

Now, my legs buzz often, most of the time one muscle somewhere is going nuts (my left foot arch is bumping and popping as I type this), but my mind and body have improved enough that I got to the point where I’d walk 7 miles golfing 2-3 times a week all fall, and now I’ve been skiing 3 times this winter.

Hang in there. Follow up with your medical team and get any testing they suggest, which will likely put your mind more at ease and/or help you if something simple can be done like a vitamin or hormonal correction.

You sound like a totally different person now. I'm so excited to hear that you have improved dramatically since the beginning of this journey. I have googled BFS/CBFS and cannot find your reference. Do you mind sharing what diagnoses this is?