Has anyone experienced internal vibrations?

Hi @martinaston It looks like you’re having a series of unusual symptoms and internal tremors similar to members in this group. It’s comforting to find other people experiencing the same things, being able to make a connection and often helps to know we’re not alone! So I’m happy you found Mayo Connect.

I see you’re trying to send a private message to @novajeff and it’s not able to go through. Try sending a shorter message. I’ve had that happen as well if my message was too long. It’s not a technical issue with Mayo Connect.

I hope you’re able to make a connection with @novajeff but remember that the Mayo Connect forum is all about members sharing their experiences, suggestions, and encouragement to help each other. So it would be great if you have ideas or suggestions which might contribute to anyone who is in a similar situation.

You’ve been dealing with this for a year or more? Have you had virus panels run to check for EBV, CMV or Lyme’s disease? Did you have Covid 19? Other members have discussed magnesium deficiencies as a basis for their vibrations. Have you had your magnesium and potassium levels checked?

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.

I have never had covid (unless it was asymptomatic) and my lyme test came back negative. I have not had the EBV and CMV tests done, but I will. Thank you.

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.

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.