Vibrating, electric, buzzing feeling

[Haven]

I'm new to this discussion board, but I joined because when I searched for "vibrating, electric, buzzing" I found some old posts. I would like to hear from anyone who has this symptom. I have been experiencing it in gradually increasing frequency over the past four years. Until recently no medical person has taken me seriously. I've been told it is anxiety (though I have no conscious awareness of being anxious), I've been told it is "imaginary" (as if I don't really feel anything and am just seeking attention). I've had WED for over 25 years and have done fine on minimal medication. Now there is this new thing and I suspect it is related, but when no one believes me I don't know what to do.

[chuas2]

Hi Haven, welcome to my world. I STILL have trouble convincing people that it's not "imaginary" or "stress" or "anxiety manifesting as violent shocks and tingling sensations." I first had RLS has a child, then it went into remission to occurr periodically. I've heard, as we get older (again, welcome to my world the old world), symtoms MAY increase if you've been "just" experienced WED periodically. But yeah, the buzzing, electrical, almost shock like feeling in my left arm and side are not in my (or your) imagination.
There's a wealth of information here. I hope you find something that helps you! That's all any of us want for each other.

[Haven]

Thanks, chuas2, for confirming that I'm not crazy! I first noticed RLS when I was in my late 30s and for a long time had no idea what it was. I used to direct conferences and every time there was an opening banquet and then a speaker, I would find myself unable to sit still. I attributed it to the larger than normal meal, wine, and nervousness about my responsibilities. Then I happened to mention the strange symptom to my PCP and he referred me to a neurologist who diagnosed RLS and prescribed clonazepam at 0.5 mg to be taken symptomatically. I have done just fine on that for some 25 years, occasionally needed a second pill when I had a long plane flight or some other unusual trigger. But in the past four years the RLS has gotten gradually worse and this secondary symptom has gradually increased until it is more disturbing than the need to move. At the advice of my current neurologist, I now take the clonazepam as a preventive every evening instead of only when I have symptoms. It controls the RLS quite well but does nothing for the vibrating. So I have tried dopamine agonists with no success, then Oxtellar XR. The Oxtellar does seem to have some effect on the vibrating. But since it is very expensive, I am now taking oxcarbazepine 300 mg in single dose in the evening. I haven't been taking it long enough to say for sure, but I think it is having some effect. Have you tried that drug? My vibrating is in my legs but also extend up into my trunk, so that at first I thought I was having A-fib. My PCP agreed to let me have a heart monitor but when it showed nothing unusual, he went back to saying I was "imagining" things. Thank God I've found a neurologist who believes me and is willing to work on finding an effective treatment! Something you might find amusing: when the neurologist was doing his usual work-up he held a vibrating "tuning fork" against the top of my foot and told me to tell him when I stopped feeling the vibration. When I didn't say anything, he finally said "well, _I_ don't feel anything any more" and took it away. But that was when I realized that what I feel much of the time in my legs and trunk is almost exactly like what that "tuning fork" felt like.

[ViewsAskew]

WED/RLS can be electrical or buzzing. But, so can other things.

Do you think this is WED/RLS? Or are you thinking it is something else and they just figure it out?

[badnights]

Haven, I'm not sure from your description but what I think you've experienced is this: you had WED/RLS for years but it manifested mainly as an urge to move, without associated sensations. Then the last few years, you've had abnormal sensations (vibrations etc.) as well as the urge to move.

That is an unusual but not unheard of manifestation. Usually, the sensations and urge to move are simultaneous, so that people don't even realize they're separate issues. I myself had heard but not understood that they were separate, until I took a medication that stilled the urge to move but left the sensations intact. It dawned on me only then that those two aspects of the disease are physiologically separate.

I don't like that your doctor is (was?) giving you clonazepam for WED. Some people - very few that I have heard of, in fact only two on this board that I recall - have said that clonazepam actually helps the WED, but most people say it simply helps them sleep as long as the WED is not too bad. If the WED is strong, clonazepam becomes dangerous, because the WED will overpower it and you will be stumbling around trying to walk the WED off with a brain that's still asleep.

I also wonder why your neurologist has prescribed the particular anti-convulsants that he has (Oxellar and oxcarbazepine). Perhaps he has more experience with them, or there is something else about your condition that encourages him to use them? Be aware that there are other anticonvlusants that are more commonly used with WED (gabapentin/Neurontin, pregabalin/Lyrica) including one that is approved for WED treatment in the US (gabapentin encarbil /Horizant). You might want to ask him why he chose the ones he did. To see if you might want to try Horizant, search on this board and see what other people have said about it.

Opioids are cheaper than anti-convulsants and overall seem to be more effective for severe WED, as long as there are no side effects, but most doctors will try everything else under the sun beforehand, because of all the bad press opioids have had recently. You should know that opioids are an option, too.

[Haven]

Hi, badnights. Thanks for all your input. Here is my Rx history:

I began taking clonazepam many years ago when RLS was first diagnosed. Back then I took it only after RLS symptoms had begun and I still had to function for the evening (e.g. hosting a conference or moderating a panel discussion at the university). When I found that flying for two or more hours would bring on RLS I began taking the clonazepam before flying so that it would prevent RLS. It worked quite well in both situations without making me sleepy or unsteady. (It's a very small dose 0.5mg). Before the most recent onset of the vibrating symptom, and because my new PCP was very anti-clonazepam because of its addictive property, I tried taking a dopamine agonist, Requip's generic I think, but it was not effective and I went back to the tried and true.

Some 10 years ago I took Lyrica for chronic ideopathic neuropathy (pain in my back and legs that did not have any identifiable cause and was not considered to be connected with RLS). I had to keep increasing the dose and even at a ridiculously high dosage, it was only partially effective. It was at a time when I was particularly busy so I was not weighing myself as regularly as I usually do, but I know that I was eating less than normal because of how busy I was and I was doing a lot of walking around. Nevertheless, I gained almost 20 lb before I realized what had happened. So Lyrica is ruled out for me! And, I might add, I am disturbed by how it is being promoted for diabetic neuropathy, given what it did to my metabolism! The manufacturers now acknowledge that weight gain is a known but rare side-effect, something they did not admit back then.

I began seeing a neurologist when I moved here just a few years ago and the vibrating was becoming regular and gradually worse. Prior to going on oxcarbazepine, my neurologist tried me on gabapentin and rotigotine, neither of which were effective for the vibrating and were not as effective for my RLS either. So, back to clonazepam again. Finally, I used a sample package of Oxtellar XR and was amazed to be free of vibration all day and night, but the side effects (grogginess, brain fog, mild depression) were not acceptable. So now I am taking it only in the evening and getting a good night's sleep, waking without vibration, and feeling more or less normal in the day time. But I am thinking of stopping the clonazepam and taking only the oxcarbazepam (with my doctor's approval, of course).

My neurologist is a member of the Willis-Ekbom Disease Foundation, so I do trust his judgment and appreciate his willingness to try the less conventional drugs for my unconventional body And there is a slight incidence of seizure disorders in my family (brother as a young child and son as an adolescent) so I would not be surprised to learn that my vibrating is in some way connected with abnormal brain electricity. But I will keep in mind that opiods are an alternative. I have no personal objection to them. I have insisted on real codeine after surgery instead of hydrocodone (which does not relieve pain for me and only makes me very crabby!). I have never had a problem with addiction.

Thank you again for your feedback!

[Haven]

OK, not sure I'm doing this right, but I mean to reply to ViewsAskew, so I hope you can see this.

It is only recently that I connected the vibrating with RLS in my desperation to find some explanation and treatment. My PCP first simply ignored me when I brought it up, then told me it was anxiety but refused to recommend treatment of any kind, then when I insisted, tested my TSH (because the vibrating when it is in my chest feels like shivering so I thought maybe my body temperature was falling too low) but the TSH was normal. Then he agreed to monitor my heart (because the vibrating in my chest seemed to me like it could be my heart - though my pulse was normal) but that also was normal. Finally he referred me to a DO psychiatrist, who said she did not see indications of anxiety but who recommended taking melatonin (to sleep better and because clonazepam was "addictive"). She clearly had little understanding of RLS. I've combed, no raked and hoed! the internet seeking some reputable medical explanation for the vibrating/shivering. RLS is the best I've found. So I contacted a neurologist who is not too far from where I live and who is a member of the Willis Ekbom Foundation.

However, I am still open to the possibility that what I am feeling is two different things (besides the common RLS feeling of needing to move). I think there is this clearly "electrical" vibration that is most often in my legs and is most likely related to RLS. But I think that I am also shivering internally, because I have begun taking my temperature whenever I feel that distinctively shivering internal sensation in my chest, with or without the legs vibrating, and my temperature at those times is always under 97, and often under 96. (My usual daytime temp is a normal 98.6) But I do not know how to follow up on this since my PCP insists that my thyroid is normal and will not refer me to an endocrinologist. Perhaps my neurologist would make that referral if the shivering continues when the vibrating stops?

I noticed another member of the discussion board said (she?) had vibrating from generalize anxiety, but did not mention what treatment (she?) was getting. Can one have anxiety without any feelings or consciousness of it? I've had anxiety in the past, including one genuine panic attack, but at those times I was quite aware of being anxious, frightened, or depressed.

[Rustsmith]

Your description of a shivering feeling in your chest is very similar to the sensations that I was experiencing in my chest muscles prior to my diagnosis. At the time I wrote it off as either being cold or nervousness. I did not feel nervous, but the shaking sensation was what I would have expected from "nerves". It was a few days after my diagnosis and being up on pramipexole that I realized that the sensations in my chest and arms had disappeared. This was not a "benefit" than I had been expecting. The "nervous" sensations had only recently begun but I had experienced issues in my legs for MANY years and in my abdomen for about 6 years prior to that. So, I guess that was just my form of progression of the disease.

[ViewsAskew]

I am glad Steve found it similar!

The best I can relate it to is that when the WED/RLS is out of control (my meds aren't working), I feel as if I've this strange anxiety inside my body. It makes me crazy-feeling. It is sort of diffused for me - not anywhere but everywhere.

[badnights]

I've never experienced it in my chest. And I wouldn't describe my sensations as shivering, or physical vibrations - the likening to vibration is more like an electrical vibration - what do I mean by that? - the vibration "movements" are microscopic, tiny, super-rapid (very high-frequency, short-wavelength) as opposed to macro shivering.

But I am interested in your body-temperature experiments (and yes, your neurologist can refer you if he thinks it's necessary - mine referred me to a sleep doc with a psychiatry background who knew more about WED than the neuro). I get CHILLS that are dreadful, I either have to get in a hot bath or add layers of socks and slippers, leg warmers, arm warmers, sweaters, hat, scarf. IF I do that, the chill dissipates in an hour or less and I start to get hot. If I don't, the chill goes on and on and gets worse. I never thought to take my temperature. I also have had normal thyroid tests but I can't remember when.

[ViewsAskew]

I've never experienced it in my chest. And I wouldn't describe my sensations as shivering, or physical vibrations - the likening to vibration is more like an electrical vibration - what do I mean by that? - the vibration "movements" are microscopic, tiny, super-rapid (very high-frequency, short-wavelength) as opposed to macro shivering.

But I am interested in your body-temperature experiments (and yes, your neurologist can refer you if he thinks it's necessary - mine referred me to a sleep doc with a psychiatry background who knew more about WED than the neuro). I get CHILLS that are dreadful, I either have to get in a hot bath or add layers of socks and slippers, leg warmers, arm warmers, sweaters, hat, scarf. IF I do that, the chill dissipates in an hour or less and I start to get hot. If I don't, the chill goes on and on and gets worse. I never thought to take my temperature. I also have had normal thyroid tests but I can't remember when.

OK, that is JUST too strange, Beth. I get the SAME chills. I sometimes go to sleep just fine. I awaken and am FREEZING. I sometimes have 6 or 7 comforters on the bed, socks, gloves, etc. And, as with you, it takes forever to resolve if I am not very proactive.

I have taken my temperature. It's always around 96 when this happens. Whenever I awaken, it's always in the 95-96 range, though. During the day, when I'm active, it's the the low 97s. Sitting here right now - I've been slow this afternoon, reading or sitting - it's 96.4. So, it's not really any lower when I am so cold.

Alternately, when I get hot, I stay HOT for a long time. It's as if once my temp is outside of normal, it cannot regulate itself.

[ViewsAskew]

OK, not sure I'm doing this right, but I mean to reply to ViewsAskew, so I hope you can see this.

It is only recently that I connected the vibrating with RLS in my desperation to find some explanation and treatment. My PCP first simply ignored me when I brought it up, then told me it was anxiety but refused to recommend treatment of any kind, then when I insisted, tested my TSH (because the vibrating when it is in my chest feels like shivering so I thought maybe my body temperature was falling too low) but the TSH was normal. Then he agreed to monitor my heart (because the vibrating in my chest seemed to me like it could be my heart - though my pulse was normal) but that also was normal. Finally he referred me to a DO psychiatrist, who said she did not see indications of anxiety but who recommended taking melatonin (to sleep better and because clonazepam was "addictive"). She clearly had little understanding of RLS. I've combed, no raked and hoed! the internet seeking some reputable medical explanation for the vibrating/shivering. RLS is the best I've found. So I contacted a neurologist who is not too far from where I live and who is a member of the Willis Ekbom Foundation.

However, I am still open to the possibility that what I am feeling is two different things (besides the common RLS feeling of needing to move). I think there is this clearly "electrical" vibration that is most often in my legs and is most likely related to RLS. But I think that I am also shivering internally, because I have begun taking my temperature whenever I feel that distinctively shivering internal sensation in my chest, with or without the legs vibrating, and my temperature at those times is always under 97, and often under 96. (My usual daytime temp is a normal 98.6) But I do not know how to follow up on this since my PCP insists that my thyroid is normal and will not refer me to an endocrinologist. Perhaps my neurologist would make that referral if the shivering continues when the vibrating stops?

I noticed another member of the discussion board said (she?) had vibrating from generalize anxiety, but did not mention what treatment (she?) was getting. Can one have anxiety without any feelings or consciousness of it? I've had anxiety in the past, including one genuine panic attack, but at those times I was quite aware of being anxious, frightened, or depressed.

Hi Haven, yes, I can see your response. You do not have to do this, but if you ever want to reply as I did, look to the top right of the post for the button labeled Quote and click on it. It will quote the original post as I just did with yours.

Interesting on the shivering. I just replied to Badnights that I get VERY cold and absolutely shiver, but my temp is always the same. It's just always very low.

I'd definitely keep trying to solve it. Some of these things are just so difficult for our doctors to figure out. If we do not keep pushing them, they get to the end of their knowledge and sort of give up on us.

Per the anxiety - I do get an internal anxiety from the WED at times....but I always know that's what it is. To me, anxiety is both felt in the body and the mind. I wouldn't think you could have it without "feeling" anxious in your brain as well as your body. But, I am no expert!!!

[badnights]

OK, that is JUST too strange, Beth. I get the SAME chills. I sometimes go to sleep just fine. I awaken and am FREEZING. I sometimes have 6 or 7 comforters on the bed, socks, gloves, etc. And, as with you, it takes forever to resolve if I am not very proactive.

too much. We're WED twins.

Can one have anxiety without any feelings or consciousness of it?

I'm no expert but I would guess not.

[Haven]

I am very interested in the fact that others have also experienced "shivering" and feeling cold when sleeping even with good room temperature and plenty of blankets, etc. And that the only thing that really relieves the shivering cold is to apply heat from an outside source or to move around very vigorously (essentially to wake yourself up completely!) For me adding socks or more clothing or blankets has no effect. It's as if my body is simply not producing enough heat and the shivering is its attempt to warm up. I'm interested that you've also tested normal for thyroid. That suggests that there is something else that is failing to regulate our body temp when we sleep. Since RLS is mostly associated with sleep states, I wonder if there isn't something in the brain that regulates the autonomic nervous system when we sleep that is malfunctioning in us? Maybe not chemical but physical, only on a very subtle level so that it does not show up in most kinds of tests? That might account for why I get some relief from anti-convulsants (even when taken at doses that do not make me fall asleep). It really was quite remarkable when I took the sustained release version of oxcarbazipine - I realized on the third day that there was no more vibration! I was so used to it always being there just at a lower or higher level, and then it was gone! Also, when the vibrating became constant, I developed a vibrato when I sang - I'd never had that before - and sometimes when I would breath in it would also vibrate.

To badnights: It's hard to come up with the right words to describe these sensations. I've called it "shivering" when it is relieved by physically warming my body with a bath or vigorous movement - but it isn't the normal kind of shivering. It is more like the vibrating - microscopic, invisible, internal, high-frequency - yeah, all of that. I have sometimes described the vibrating as being like what you would feel if you were standing on the floor of a boat or car or airplane with the engines running. In that case, the vibration would be coming from the machine you're standing on. But here I am sitting at my desk and my legs are vibrating just as if I were riding in a car or plane (though not feeling chilled - probably because I am fully awake and my temp is a nice 98.6). Which brings up the fact that the vibrating is always worse when I actually have been riding in a car or airplane.

It is also reassuring to me that no one thinks this could be anxiety without some kind of feeling of anxiety - I don't even have that vague and diffused feeling ViewsAskew describes. And I've had serious anxiety and depression in the past, so I KNOW this feels different and does not feel psychological.

A "sleep doc with a psychiatry background" sounds good. Wish I knew one here. But as I said, my neuro is particularly interest in WED. I have to travel some 150 miles to see him, but the local neuro has not idea about WED.

Whatever the cause, this is clearly electricity running through our nerves in such a way that we are aware of it as a physical sensation.

[badnights]

It is also reassuring to me that no one thinks this could be anxiety without some kind of feeling of anxiety -

It's always nice to realize that our gut feeling about something was right.

I appreciate that you have taken the trouble to describe your sensations. Definitely messed-up signalling of some sort! And we all experience them a little differently.

One difference between our chills is that mine are almost always when I'm up and awake. I do remember years ago lying in bed half awake and bone cold, unable to wake up and do anything about it, but unable to fall into a deep sleep because I was so cold. I haven't had that in years. I only have those chills when I'm awake, which may be why I can stop them with layers of clothing - because I am generating heat from being awake and moving around, a benefit that's absent when you're asleep.

I would drive 150 miles to see a good doctor as often as I had to, if that's what it cost to get my life back, but it sucks that you have to. I wish we could force training on our physicians.