Strange vibration sensations - what's causing it??

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I've found several forums where there have been posts from people experiencing this disconcerting feeling of an internal quivering or vibration but none of them are current, so I wanted to see if anyone else out there is having the same experience and can share an insight into what might be causing it.

I started to get this feeling of internal vibration when I was mainly lying in bed and then occasionally if I shifted position it might last for 30 seconds or so before disappearing. That was about 8 months ago. Now I feel it every night and during the day as well quite often. The other day after a short walk of a few hundred yards followed by a period of standing still it felt like the ground was vibrating  because it was in my feet. It seems to move around to different areas of the body - sometimes I feel it in my legs, an arm, torso - it's quite random but often felt when I've shifted position in bed. At first I thought it was circulatory but now I think it's probably neurological. I thought I was having palpitations but an ECG showed nothing abnormal. I've also had a full spine & brain MRI as I've been having other strange symptoms of occasional numbness and sensations of burning and cold areas of my arms/hands and legs/feet and a sore tongue which comes and goes and often feels like I've just cleaned my teeth with menthol toothpaste when I haven't. I thought I had all the signs of MS, but it hasn't been diagnosed. I've also had a number of blood tests for immune issues, evoked potentials and nerve conductivity tests. Nothing! The MRI does show a lot of wear to my cervical vertebrae and two anterior spondylolisthesis - one cervical, one lumbar, so I wonder if my spinal issues could be the cause. My neurologist was doubtful. He also couldn't explain the vibration sensation except to say that it can be caused by a migraine, which I certainly haven't had. 

I just don't know where to go with this now.  My GP isn't interested and puts everything down to stress which I AM under it's true to say, but I don't think she's right. I've had to pay for all my neuro investigations as a result because she won't refer me or do any more blood tests etc.  I'm trying homeopathy, osteopathy and acupuncture as I want to find something that will relieve these weird symptoms and prefer to avoid drugs if I can.

I'm 58, eat reasonably heathily, no alcohol, only 1 cup of coffee a day and my weight is normal. I broke my wrist badly at the end of August last year which is when my problems all seemed to start. i

I also wonder if the metal plate that was used to fix the fracture could be causing some kind of strange reaction.

If anyone else is having these symptoms please let me know if you've been able to identify the cause and how to deal with it.


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  • Edited

    Hi Sally

    I completely understand how you are feeling. I've been having all

    sorts of sensations all over my body. It all started May 2014 with

    a strange sensation in my left leg like there was something

    tight around it.This progress to all limbs and I'm not able to walk


    All the things you're experiencing and more and after seeing two

    Neuro consultants,two movement consultants,and many many test I

    had a nerve conduction test done by a technician but was called

    back to have another done by a consultant.Within a hour he

    diagnosed me with

    Severe small fibre sensory polyneuropathy diffuse and autonomic

    neuropathy. Once he explained what this was it all made sense and I

    knew I was going mad.

    This test should have been done in April 2015 but Neuro didn't

    do it. If it had been done it wouldn't be so severe.

    Please insist that the nerve conduction test is done again but by

    a consultant.



    • Edited

      Hi Mandy, thank you for sharing your experiences. I'm sorry to hear about the delayed diagnosis and what you're having to go through. I'm seeing my neuro tomorrow so I'll mention this condition and see what he says. I hope you've had appropriate treatment since diagnosis and things are beginning to improve for you. Presumably these are conditions you have to live with and just keep under control with meds? Best wishes to you.

    • Edited

      Thank you for your kind words. I was only diagnosed two weeks

      ago the report will be sent to my movement consultant.

      At this moment I'm not sure of the treatment but I would presume

      it would be to find out which Autoimmune disorder it is and treat

      that and stop further damage being caused.

      I've had to battle and push for every appointment/test so please as

      tomorrow. My damage is severe in many parts of my body,

      but if they had. done the nerve test over a year ago it would of

      not been so severe

    • Posted

      Hi Mandy, thanks for all the information that you shared.

      Im just checking in to see how your further examination went and are you on some form of treatment.... and has it improved your situation

  • Edited

    Hi Sally! I have had almost exactly what you are describing (no menthol on the tongue)! I too have been told it was a migraine aura, and it was left at that. I was just diagnosed with PoTS, and now I am going back to the doctor this Friday to talk about testing for underlying issues (MS has been brought up multiple times for me). I wouldn't put MS out just yet (I'm pretty sure it can be in your spine as well as your brain, but I could be wrong). And similarly, all of my issues started after a physical trauma as well... It just takes so long for that particular diagnosis, and finding the right doctor to find it and TREAT it is a real pain.

    • Edited

      Hi there, that's interesting what you've said about a migraine aura as that's what my neurologist said to me again today at my follow-up. It's even more interesting that you've been diagnosed with POTS. I have been experiencing palpitations for a while and a recent ECG showed as abnormal so I'm now waiting for further tests. It may be that these heart rhythm issues are connected to the strange vibrating sensations.  My neuro put me through checks for Parkinson's and said that I don't have any of the signs he would look for. I've had a full spinal MRI and on the cervical scan there was a 'subtle change' on one side of the spinal cord of an unknown nature, but my neuro wasn't really concerned about it. How long have you been experiencing your symptoms? Have you got any meds for your POTS? If so do they help Lessed the vibration sensations? The neuro said I could take beta blockers or Gabapentin if it was bothering me but I prefer not to take meds unless they're essential.  I agree that it's a nightmare to get help/diagnosed when these symptoms are common to many different conditions.  Hope you can get some answers soon - do keep me posted. 

    • Edited

      I have had a lot of things happening and going on. I had a hemorrhage back in October, which may or not be related to PoTS, as that seems to be the starting point. It left me with chronic migraine headaches that I absolutely must be medicated for. I take Topamax for and another medicine too. In April, things started to really progress, and the palpitations, fainting spells, vibrating sensations and such really started. On Friday, my EKG came back with an ST Depressjon, but this was only released after I left (one of those additional review findings). I've read that this is from lack of oxygen, and my doctor has explained that my tachycardia is not allowing enough oxygenated blood to flow whenever my heart beats too fast. A thought to keep in mind since you have palpitations as well. Since this doctor is my electrophysiologist, we decided to let my dysautonomia doctors take care of the extra testing for MS and such. I am currently on florinef and it seems to be helping a little for some of the symptoms of pots, But I really haven't experienced the tingling as much since they put me on verapamil. It's originally for my migraines and took the place of my nortriptyline, and it works well. Maybe it is something worth talking to your neuro about.

    • Edited

      Very interesting to hear your findings. I have no idea what a ST depression is but there may be some similarities as I've been found to have mild to moderate sleep apnoea - not enough to have a CPAP but I wonder if possibly lack of oxygenated blood from that or palpitations cause the vibration sensation. My neuro has signed me off and put my vibes down to migraine aura in the absence of other neuro tests coming up with anything definite. He said if it was bothering me I could try taking Gabapentin or beta blockers but I prefer to avoid meds unless essential. I'm now waiting for a 24 hour ECG and an echocardiogram to find out more. 

    • Edited

      Hi - I have had a diffuse small fibre polyneuopathy diagnosed by a neurologist about 19 months ago, despite nerve conduction tests proving normal. My brain showed some white matter at the same time but I've recently learned this hasn't progressed meaning that it indicates age appropriate small vessel disease. The only test that showed up something important but non specific was the lumbar puncture which was paired with serum in my blood - taken at the same time. This showed paired olligligloclonal bands - indicating that a systemic process was occurring.

      I have had a rheumatic disease, RA, for five years so they all blamed this but have been unable to acknowledge it formally as the culprit because I no longer have swelling or pain in my joints - just the vibrations, pins abs needles everywhere with loss of balance/ vertigo and muscle weakness. Then all my body thermostat started to break down and I now swing about from icy extremities to cold. All part of this idiopathic small fibre neuropathy they shrugged - can only offer me sticking plaster drugs not address a cause

      Finally I insisted on seeing a new rheumatologist when I moved to a new part of Scotland for the second time this year. The new chap took more blood and my immunology came back very positive at last so I had a lip biopsy which showed up equally positive for Sjogrens Syndrome. I see the neurologist again on Wednesday so will see if she's less dismissive this time but I'm

      told there are probably no treatments I'll ne offered. I think mine is becoming mononeuritis multiplex now as I feel I have several unrelated areas of nerve entrapment from inflamed tissue and tendons. Mine is bilateral.

      Hope this helps somewhat - if only to say hang in there and find answers as mine has done some permemant damage now. Neurotalk is an excellent forum too for peripheral neuropathy.

    • Edited

      Hi..I've been ill since May 2014.. initial started with strange

      sensation in left leg from knee downwards,weakness down left

      side of my body,slurred speech and tight feeling in left side of my

      face and head. 1st diagnosed as Hemeplegic Migraine,then stuck

      in the migraine.

      Sensations of this tight heavy feeling spread to all limbs, I couln't

      walk normally or at a normal. I started to have other symptoms

      balance affect,bowel problems,sleep problems,jerking movements,

      Internal vibrations (which drive you mad), can't regulate body

      temperature,pains which can be stabbing,burning,pricking,racing

      heart beat,digestive problems,breathing problems and so much


      I have had extensive tests, 2 Neuro consultants,movement

      specialists, NCS done by technian then by the consultant in

      Neurophysiology 3 weeks ago.

      He told me I had severe diffuse small fibre sensory polyneuro

      pathy and autonomic neuropathy. Finally it explained all the feeling

      I've had that only you can feel and suffer with, and that your not going

      mad. He also told me it was Neuro and Autoimmune.

      I had RA as a child . This has had a big impact on my life,I lost

      my job 18myths ago having worked 34 years,I'm a single mum too

      It's not just a physical illness,its mental and emotional.

      For yourself and anyone else who reads this , I completely

      understand what you're experiencing.

    • Edited

      Another interesting reply - thank you so much for sharing. I hope your medics can help with treatment to at least alleviate your symptoms. 

      I was in fact diagnosed with seronegative RA by an American specialist doctor who was linked with an IVF clinic I was using at the time about 15 years ago. I thought it might be a ruse to get me to use his expensive and unauthodox therapy to conceive so I went to my GP here in the UK to query these test findings as I didn't have symptoms. Tests my own GP requested showed negative so I've never been too sure whether I have or haven't got RA. My neuro recently tested for it but the result was again negative, but it sounds like you have very similar symptoms to me. I wonder if I should see a rheumatologist who would have a different angle than the neurologist and run other tests. My GP is very dismissive so in the end I went to a different GP and said I wanted to see a neuro privately so I've had to pay out for all my investigations and it's cost me a fortune, but peace of mind was more important.

      I notice that I can actually feel my chest vibrations if I put my hand in the middle of it so it appears to be muscle fasiculation and not something caused by my brain as the neuro seemed to think. My heartbeat is normal while this happens so it's not not fibrillation. I keep waking up with numbness in some of my fingers in one or other hand but that goes off as soon as I change position of my arm.  I feel sure that it's all somehow related. 

      I've also considered Sjogrens and other AI disorders myself and have read that they frequently both occur together. The one thing I haven't had is a lumbar puncture - I dread the idea as already have back problems and read some horror stories! My neuro deemed it not essential and did non-invasive evoked potentials and a brain & spinal MRI instead. There was this subtle change in one area of the spinal cord on one side but he didn't seem overly concerned by this and said it may have been like that for some time.

      He's said he can't find any underlying serious cause to my symptoms and has dismissed me, but you too have had negative tests just the same. The trouble is it's a case of waiting to see if symptoms worsen or new ones appear, by which time as you've experienced, there can be permanent damage. My palpitations are at least being investigated by my GP - but that's much more obvious.

      It's these tricky symptoms that cover a multitude of different neurological or auto immune conditions that GPs seem to pass off as being of no concern far too often because of the extensive testing required and inevitable cost to their practice. It's very frustrating.

    • Posted

      my inner tremor wasn't with other symptoms as I was 36 at the time. Now 54 and some of the symptoms you all are describing are symptoms I am having now in Perimenopause but did not have at 36 with the inner tremor.

      Now I have had ocular migraines, no pain but my eyesight was temporarily distorted, and my EKG showed as abnormal recently while in Peri but it was completely normal at age 36 when I had inner tremor.

      my inner tremor was 18 years ago and so far no MS or Parkinsons diagnoses or symptoms.

    • Posted

      Hi, you may have already found the answers you need but your story sounds very familiar to me. Have you researched EDS or MCAS? they are common comorbidities with POTS and could provide an explanation for many of the things.

    • Posted

      i was on topomax and possibly discontinued it too quickly i now have muscle spasms and vibrations in both legs

      since it caused tingling, paresthesia, it makes sense to me that nerve misfiring could also cause other nerve-related issues such as vibrations

      im umping in to suggest topomax may be a contributing cause to your vibration issues - and definitely the tingling!

  • Posted

    Hi sally

    I am 56, and was recently diagnosed with vagusvasil syncope, it is a form of dysautonomia, and comes with other conditions, it is causing in me, Chronic Fatigue Syndrome, Slow Digestion, and Eratic Sugar Levels, i have to drink plenty of water but no more than 2 half litres per day, and be liberal with salt to help balance my electrolytes, as, due to all the weeing you do with this condition you lose blood volume, which, causes a lot of your symptoms.

    Along with the dysautonomia, Chronic fatigue syndrome also, causes pins and needles, numbness, and electric shock symptoms, both conditions cause neurological symptoms.

    The electric shock symptoms and pins and needles, etc is all down to fatigue and how it is affecting the brain, if you wake with these symptoms in the morning, or, go to bed with them, it is normally a sign, of either not getting enough sleep, fatigue!! or, too much sleep which is called deconditioning. With CFS you get up early in the morning, rest, and pace, and gradually work up to what you would normally do, then go to bed at the same time, drink during the night when you wake, and drink at least a large glassfull of water upon waking int he morning to help blood pressure, don't oversleep, if you do, you will find it very difficult to wake up, as though you have just taken a sleeping pill and can't wake eventhough you have just had 8 hours, which, makes you think you need more sleep, you don't, so when you finally get up, you should feel better, but because your body clock is now out due to too  much sleep, you can then get all these neurological symptoms.

    I also suffer with migraines, however, to have migraines, you don't always get the pain, the brain sends signals to other parts of the body, you can lose balance, you can kick out all of a sudden even while you are walking, it can cause sudden thuds inside your head, you may also lose the sight in one eye, when you lose the sight you tend to get a grey vision, a clear sign that, that is a migraine, you may also feel paraylised for split second down one side, so may drop things out of your hands, normally which ever side of the head is affected, then so is the body, so if your having problems on the left side, then you will have probs with your limbs on that side also, when it first happened i thought i was having a stroke, but it lasts for around 3 mins total, and i dont get a headache at all.

    If your familiar with any of these symptoms, then try and get a tilt table test done, by either, a cardiologist or, a neurologist, but dysautonomia comes with hundreds of symptoms, beause it is a malfunctioning nervous system, so it affects so many systems around the body, so, and causes other condtions as a result, and this is why you get many, many symptoms.  But what you have to be careful of is, there are many illness that come with the same symptoms as one another, and what your dr looks for are, signs, not symptoms, because they know, a lot of illnesses come with the same symptoms, but if you have a dysautonomia a tilt table test, is a good place to start, but, if you have a nervous system problem, it would definately affect your blood pressure, and your heart, as these are the main systems affected.................hope some of this helps you!! 

    • Posted

      Thank you for your interesting reply Elaine - very helpful.

      In my case I would say for sure that I have had sleep deficit for years! I find it hard to switch off and go to bed but I don't think I can have chronic fatigue syndrome as I don't suffer a lot of tiredness even on 5 or 6 hours sleep a night. I also have mild to moderate sleep apnoea, but not considered bad enough for a CPAP machine thankfully. I seldom get to sleep before 1am and often later so maybe I have caused my body to be overworked and fatigued even though the tiredness is not obvious in some way and the symptoms are resulting from that. I should try to be in bed before midnight but never seem to manage it. I have a 24 hour ECG next week so will see what the findings are from that and take it from there.

      As you rightly say, there are many of these symptoms common to a number of different illnesses. Did it it take a long time to get a diagnosis for your condition?

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