Has anyone experienced internal vibrations?

Thank you for giving us all an update on your condition! And also for encouraging everyone to keep the dialog going here in the Connect forum. We’re all here to help each other out!

I’m glad to see you’re finally get some relief with your symptoms and only rare occurrences now. I went through the vibrations and electrical surges with inflammation on my spinal cord a couple years ago. If conditions are right, even though my MRIs show no more damage, I still get a few ‘electrified days’. Thankfully they’re much rarer these days too!

What do you feel has brought on the recovery? Time? The calcium/mag supplements? Gabapentin?

MY POINT WAS AFTER SEEKING INTIAL ASSISTANCE WITH ILLEMENTING MS AND PD WE ARE LEFT WITH NO ANSWERS. ONCE YOU REALIZE THAT THIS CONDITION (IN MY CASE) IS NOT GOING TO LEAD TO DEATH. THE ONLY APPROACH TO THIS IS TO PUT IT ON THE BACK BURNER. I HAVE BEEN VIBRATING HEAD TO TOE SINCE OCTOBER 2011 24/7. TO MY KNOWLEDGE I AM THE ONLY PERSON VIBRATING IN THE STATE OF VIRGINIA. I SHARE THIS LONGVIEW HOPING IT MIGHT HELP.

yes I have them all day every and cannot get diagnosed 2 neurologist same office say anxiety it is NOT anxiety no reslove I am miserable and have tinnitus too

Hello,

I am seeing @martinaston ’s messages fine. I am happy to chat via private message if it helps, but also encourage sharing experiences in this public forum in case it helps others down the line.

I will sent a return message shortly.

Just as a public update, I’m at the two year mark of the onset of symptoms now. Still using 300x3 gabapentin. Also still doing calcium and magnesium supplement. Neuro said that can’t hurt even though it might not help.

Nothing has gotten worse over the past 6-9 months and I would say overall slow improvement with sort of a plateau the last 3-4 months.

I still am able to do most anything, physically. I walked golfing most weeks and am planning on some skiing for the winter.

My legs and specifically calves and thighs still pop and buzz most of the time, sometimes visible Fasciculations and sometimes just internal buzz.

It is still often worse laying down at night after a day of exercise.

For no known reason, I have a few days every once in a while that are much worse, and then can have a week or two where I actually forget about it, because it’s so mild. I am thankful for those times!

Sleep is sometimes (~30% of nights) impaired by the condition, whether it is the buzzing itself or sweating caused by the nerves being off kilter.

I also still notice occasional Reneau’s in my fingers when it is under 40°, even with gloves. (That started only after I had BFS begin). Speaking with my docs, they say it makes sense because the nerves are getting wrong messages. Similar to the legs sweating. It is not a clinical circulation issue (circulation is just fine).

Globus has only returned a few times, knock on wood. It lasts for 3-5 days when it pops up, and then thankfully goes away.

Tinnitus has been improved notably.

Vocal/chest tremors in the night are also rare and milder now. 5-7 times in the past 6 months probably.

Nothing much else I can think of for now.

Hello. I have posted several times on the BFS thread, but never on this one. I have experienced the internal vibrations also, following a nasty viral illness I had over the summer. My GP performed a lot of bloodwork, which all came back negative, even for latent EBV. I still have some vibrations 6 months later, but not the almost constant ones I had initially. My legs also have the buzzing sensation sometimes. I have fasciculations/popping which started the same day I got sick. They have improved some with time, but I still have them, most noticeably when I am still. Primarily in my legs, although I do get them all over. I had Covid several weeks ago, which did make the fasciculations worse for a bit. There is no question in my mind that a viral illness triggered all these strange neurological symptoms. The neurologist I saw didn't seem to have much experience with this.

Well explained. Probably like others, I read this like I could be reading what I wrote, myself.

I’d love to get time with the right team of neuros and help them understand a link between BFS’s “damage” to nerves and a viral infection or severe illness.

Hope you continue to improve. For me, the legs and calves are the hardest hit and most frequent for buzzing and actual Fasciculations, as is the case for many.

Hello All,

Your comments are very helpful and I'm glad to have found this forum. I hope that my story will help you as yours have encouraged me. My internal vibrations are more like buzzing and began 13 years ago inside my inner right calf. Initially they were intermittent and not very often. Now they are 24/7, and are in my entire body, including my lips, which is unnerving, no pun intended. 😉 I don't experience that "relaxed" feeling any more and many autonomic problems have developed including electrical conduction problems that involve my heart (Midodrine was a game changer!). I can feel the physical toll this condition has caused my body and anxiety was ruled out through tests. Because of the timing of the onset of my symptoms in correlation with the city in which I live, first using insecticides and pesticides to control the mosquito population, I think there is a connection between organophosphate poisoning and my internal buzzing and autonomic dysfunctions. Spending years trying to figure out why this is happening and trying to eliminate the buzzing and return to a peaceful relaxed state of body, I started using select amino acids and neurotranmitter supplements. A neurologist suggested that I eat 3 eggs a day and when I asked why, she stated that "I needed the choline". Since eating 3 eggs a day wasn't realistic for me, I began using the supplements I mentioned and my journey for relief continued. Recently I was tested for acetylcholine receptor dysfunction because of the "choline" recommendation and I noticed that a couple of the meds I've been using affect the muscarinic receptors which are part of the cholinergic receptors system. To learn more about this important system, I appreciated Osmosis.org's explaination of Cholinergic receptors. I think there is a correlation between the Cholinergic system and our vibrating/buzzing sensations. My acetylcholine receptor antibody tests were negative for dysfunction and my Movement Disorder Neurologist prescribed Baclofen. Low and behold, Baclofen reduced my buzzing/vibrations YEA, but it exacerbated my autonomic dysfunctions and I had to discontinue it. To date, I've received the most relief from using the supplements L-Tryptophan and pure California Poppy tincture. A word of caution, all supplements are not created equally and can impact health and medications, so please check with your doctor before trying them. In closing, I suspect that genetic mutations may be a component of this physical experience. Have any of you been tested for the genetic COMT mutation? Having the genetic COMT mutation can affect how the body utilizes certain meds that some of you in this forum have mentioned using. I'm interested in hearing from you and may you receive answers and relief!

I am new to this forum and I’m not sure if you are still having the issue, I had a similar situation for two years and it was finally resolved. I realize your post is nine months old I’m just curious if you’re still having the same vibration issue.