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Sally4Edgar Sally4Edgar

Strange vibration sensations - what's causing it??

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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  • LongJourney LongJourney Sally4Edgar

    Your post is interesting. Many random times, I experience a momentary all-over "flash" sensation that feels like a mixture of an electric shock and pins and needles, that last about a couple of seconds. It is very uncomfortable. It happens the first moment I awaken in the mornings and often as I'm falling asleep at night. I'm 56, and continue to struggle with significant blood pressure issues (highs and lows) for many years. I do not know what is causing the sudden flash sensation. Could it be the constant exposure to wifi and being near so many electronics, all the time? I do not know and strongly doubt manufactures will ever disclose such. Any thoughts?

    • Postalcanary Postalcanary LongJourney

      Hi there I see ur post is older but wonder how the vibrations are?  U might also consider MCS or MULTIPLE CHEMICAL SENSITIVITY.   It can happen to anyone.  Whether uve had an exposure to a toxic chemical or not. 

      For me , before I could notice a pattern and figure out what was wrong with me I'd get these weird symptoms. 

      Sometimes my thighs would feel weak and shaky. So weak then when I go to stand, my legs would collapse. Sometimes my face or inside of my mouth would burn.  

      Or I'd feel like I'd taken a drug. Which I hadn't.  Sometimes sleepy. Sometimes dizzy and spacey. REALLY SPACY.   Other times I'd just feel sick.  Unlike any kind of sick I'd ever had   

      I truly felt as though I'd been poisoned.   

      I finally started noticing patterns. 

      Sometimes I'd smell things. But it's not the smell, it was the chemicals used. Like in perfumes. Or cleaning products.   We ran a biz out of our home in AZ.   

      People would park in front of the house and leave their cars running.   The exhaust from the cars would make me sick.     One time I'd gone to bed feeling fine. Woke up with my whole body vibrating.  Turned out it was my husbands work clothes. They had paint thinner and automotive oil in them. I got them out side of the room in a bag and it went away. glade plug ins r so toxic to me.   

      All laundry soap and fabric softners make me sick and dizzy, when being next to someone that used them. 

      It took me 2-3 yrs to get diagnosed and another 3 yrs to actually believe it true! Lol.  

      With MCS it only takes vapors of vapors or vapors to make me react.  

      With MCS that's what so hard, is it only take a wife of something to make me feel dizzy.  I feel sick and stoned. Lol. It's not fun. 

      My friends tried to comply with my needs of NO LOTIONS OR PERFUMES, when we go somewhere together in a car. 

      But lotions and oils don't come out of clothing ever enough for me to be around them.  It becomes a very isolating illness.  My husband passed away and everyone came to pay condolences.  I hugged my son knowing he doesn't wear colognes. 

      About 5 mins after hugging him. I got this metal taste in my mouth. 

      I already new from experience that pesticides or stuff like OFF and other bug sprays make me Really SICK.   I tried not to show it. 

      But sat and thought, what is my son wearing that affected me so much. 

      I looked at his jacket and remembers it was his hunting jacket. I asked him if it was.  He said yes.  

      I then asked if used DEET or other bug repellent while wearing it. 

      He thought for a quick second and said yes.      

      All it takes is for someone to sit on my couch with fabric softener on and it will affect me for days. 

      It just takes such a small amount to affect someone with MCS.  It's really impossible to believe. 

      Look for patterns.    Now I rarely hug anyone. It's not worth it to me. I try not to shake hands.  

      I hope that's not what u have. But u should consider it. 

      Also EMF. Electro magnetic fields.  

      Tho I don't have that, it to is real. 

      I've only felt it one time. 

      I sat infront of a HUGE Apple computer screen at a friends house. 

      On her kitchen counter. All of a sudden I noticed this weird pulling sensation in my head and a vibration in my body.   I'm pretty sure that's what did it.  When I gotvup and walked away from it , it stopped.  So a little later I sat down again infront of the computer screen. It happened again.   It could have been some cleaner she used on the table, but if it was , I would have noticed it, no matter where I was in the room. Cleaning products laundry soaps and softners , perfumes,  pesticides and herbasides r just killer to people that have MCS.   

      I hope ur doing better and figured out what was affecting u. 

      Take care

    • Sally4Edgar Sally4Edgar Postalcanary

      Gosh, what a nightmare for you!  I don't know how your condition is diagnosed but I'm sure you had a long road to finding a cause for your symptoms. I suppose I could also have a sensitivity that has been activated by stress or lack of rest.i haven't noticed a pattern though. I did wonder if mould in my car that might be causing a reaction.  

      You don't say whether there's any treatment that would de-sensitise you and lessen your reactions. There's chemicals in just about everything so life can't be easy for you,

      Thank you for telling me your story and I wish you best of luck in avoiding these chemical irritants. 

       

  • vicky89033 vicky89033 Sally4Edgar

    hi sally, i may not have the answer but its worth looking into lymes disease ive had the feeling your discribing and numbness,pins and needles along with loads more weird sensations progressing over a 3 year period. i went to 4 nuerologist all said migrain but i then tested positive for lymes which is now chronic. nothing ever showed up on other blood test MRI and CAT scans or nerve conduction test. i thought i had alsorts- MS,autoimmune diseases,candidia overgrowth,toxic mold syndrome and my GPs had me believing it was stress -dont give up looking for the reason and change your doctor if they arnt willing to reffer or do further test -good luck

    • Sally4Edgar Sally4Edgar vicky89033

      Thanks you for replying to my post Vicky. I've looked on other boards for my symptoms and Lymes has come up quite often in other peoples' comments. The thing is that as far as I'm aware I've never had a tick bite in my life! I saw an integrated medical Dr today and he drew a blank on it but is trying anti toxicity homeopathic treatments. It would be good to know what is actually happening in my body when I feel this. trembling/quivering - is it muscular, vascular or neurological? I would really like someone to stick some electrodes on me for a night and record what's happening. Did you arrange yourself to be tested for Lymes or through a GP? I'm in the UK and I my doctor is reluctant to do any testing. Are you in the US? I have all the same fears as you about what my symptoms are - MS, Parkinson's, autoimmune, thyroid and a whole host more. Are meds controlling or reducing your symptoms now you've been diagnosed? I do hope so. Best wished.

    • vicky89033 vicky89033 Sally4Edgar

      hi sally sorry for the delay in replying to you. im in the UK my GP finaly did the blood test for lymes but there were problems with that-the test can only be properly tested at 1 lab at porton down my GP should have printed off a form from public health england( it gives your GP boxes to include symptoms) and sent the blood to my local lab with this form to be forwarded but they just sent it to my local lab on a standard blood form they didnt write on "please test for co-infections" which was advised then my local lab tested it (incorrectly) then when contacted did send "stored blood" that got lost on route finaly more stored blood was sent and finaly tested 3 mths after 1st blood taken. ive since been told if you are taking antbiotics it affects the test. My basic test came back negative (this seems to be common) but possitive for co infections. Ive not had any luck since as my GP doesnt want to concentrate on lymes! im still fighting this and wont give up. it fits every symptom of lymes, everything else has been ruled out and obviously have had a possitve result and no treatment. if your GP agrees with testing you im happy to offer advice. PS I cant remember being bitten by a tick but was a regular walker in woods and meadows and stayed on farms were i was bitten by " insects"

    • Sally4Edgar Sally4Edgar vicky89033

      Thanks Vicky. I know my GP will pooh pooh the Lymes route but will mention it to my Neuro. I tried to find a way to get a private test done through a Consultant who used to have a clinic where I live but he's no longer doing it so I think it's going to be hard to sort that. I was given the Porton Down contact details but I'm sure they won't do anything unless it's through a GP. Tricky one as it is difficult to diagnose by all accounts. 

    • vicky89033 vicky89033 Sally4Edgar

      hi sally, yes porton down will only test bloods from a GP or possibly your consultant. if you tell your GP you had a tick on you and ask for a lymes test ( make sure its on the public health england blood form and your GP writes to inc. co infection testing ) your GP cant refuse this test. if you look at public health englands website you will find the form for GPs there is also a GP helpline. i realy would push this as youve seen a tick

  • mandy77480 mandy77480 Sally4Edgar

    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

    normally.

    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.

    Regard

    Mandy

    • Sally4Edgar Sally4Edgar mandy77480

      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.

    • mandy77480 mandy77480 Sally4Edgar

      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

  • bpaigeh bpaigeh Sally4Edgar

    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.

    • Sally4Edgar Sally4Edgar bpaigeh

      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. 

    • bpaigeh bpaigeh Sally4Edgar

      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.

    • Sally4Edgar Sally4Edgar bpaigeh

      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. 

    • Tumtum1963 Tumtum1963 bpaigeh

      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.

    • mandy77480 mandy77480 Tumtum1963

      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

      more.

      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.

    • Sally4Edgar Sally4Edgar Tumtum1963

      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.

  • elaine33371 elaine33371 Sally4Edgar

    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!! 

    • Sally4Edgar Sally4Edgar elaine33371

      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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  • ankit00802 ankit00802 Sally4Edgar

    The same happens to me and the occurence is almost regular. The heaviness of body happens whenever my body is resting or during sleep time. It becomes painful to sleep at night due to body pain and vibrations of body parts. Even my heart beats faster i can feel palpatations all over body parts including my head. I am taking depression pills from last one year by consulting a psychologist and even do body relaxation exercise..but even the problem persists

  • nicholas89897 nicholas89897 Sally4Edgar

    Thank God I am not alone. I have an identical story. Literally done all the tests and nothing. Doctors stumped and have given up. But every single day I have vibrations in my legs, torsoe and head. They only come on when I am relaxed or falling asleep. Sometimes I can actually feel them and other times they are internal. I have also had cramps and pain in the same areas that tremor. I suspect from exhaustion. I am at a loss. It's been 6 months. I am 44 years old and male. I do have stess but nothing abnormal. 

    • Sally4Edgar Sally4Edgar nicholas89897

      Interesting that in most cases doctors seem to have no idea what causes these vibrations. Mine are certainly real as often I can press my hand on my skin and feel vibration under the surface. Any part of my body can be involved as well - usually when lying down in bed at night or in the morning before I get up. If I move around in bed the part of me that I moved will vibrate for maybe a minute or less and then it will fade away. I've also had it happen a couple of times during the day in my feet. It was bizarre - like the floor I stood on was vibrating, but it was me!  I do wonder whether I have this small fibre neuropathy condition. Areas of my toes are numb and the end of one of my fingers has lost some sense of touch in a small area so it has some similarities. My GP has run blood tests to see if it's a B12 or diabetes or thyroid problem but all tests normal except high cholesterol. I will mention SFN to see if she will test further. Something is causing our muscles to quiver involuntarily - an oven-production of some hormone or chemical in the bloodstream or a neurological problem. It's been happening to me for over a year now.  I know I don't get enough sleep and I have mild/moderate sleep apnoea as well as a lot of atrial ectopic palpitations (PACs). 

  • nicholas89897 nicholas89897 Sally4Edgar

    Ugh. I am so frustrated. Been to doctors and I'm pretty sure they think I'm nuts. It's as you say. Just before I fall asleep and when I wake up. And I have pain from it! My muscles shake so much and for so long that I get cramps and fatigue. And I can feel the shaking too. If I put my fingers on the muscles I can feel them vibrating too. It's scary and I worry it's something serious. Have your symptoms changed or improved?  

    • nicholas89897 nicholas89897 Sally4Edgar

      Last night was awful for me too. Woke up at  1:30am with my right hand and forearm as well as my right foot completely numb. I was on my back so it wasn’t from sleeping in a strange position. The one sidedness if it scares me. Sounds like MS/ALS. I have been referred to Strong Memorial neuro Clinic in Rochester NY. Then of to the Cleveland Clinic if they can’t sort me out. My son is 6 and I am absolutely terrified I am going to leave him at such a young age. I really hate not knowing. 

    • Sally4Edgar Sally4Edgar nicholas89897

      I know how you feel. I tend to think the worst when it comes to my health which isn't really a good thing, but I prefer to prepare myself. I also have frequent numbness in my fingers on both hands, always at night, but the doctor thought it was just the way I sleep somehow squashing a nerve. Never used to happen. Also my toes are becoming numb in places. This has been coming on for a few years. Initially it was just a small area of my left big toe but that's now extending to my other toes and right foot. My doctor just checked for easy stuff that can be sorted out like B12 deficiency which was fine. She said often the reason for peripheral neuropathy isn't found, so that's the end of it from my GP. There are more tests but I may have to go back to see my neurologist and pay for them.  I hope you soon get some answers from the specialists.

    • pam67066 pam67066 Sally4Edgar

      Hello Sally, I've just been reading your posts for the past year. So sorry you've had to go through so much and to still not be 100% sure of what is going on. I, too, have had internal vibrations for a number of years. I recently accepted that it must be me and not the environment but I still harbor a version, a story that may have some influence on this vibration issue. EMF's cause a great deal of harm and we do not have the ability to pinpoint this issue as a verifiable cause. I've thought for years that the vibs were being caused by pulsing TV's either below or next to my apartment (I live in a 3-story building with approx. 50 people). I left a previous apartment 6 months ago because the night noise was so bad I did think it was the neighbors having TV and lots of movement late at night. For about 2-3 months in this new apartment I had a reprieve...no vibs. But they started up again and continue to bother me....but it is  not constant...8 - 10 days at a time and then 2 days(?) I went to a naturopathic doctor and he did muscle testing etc but could not dtermine anything. He did think I should stop taking synthroid and suggested calcium lactate. I do not see any other doctors....yet. Nor will I take chemical drugs. I've very sensitive; and I am quite perceptive and psychic. So please indulge me. I've read that the vibrations of the earth are shifting. The Schuman Resonance is changing rapidly, from 7.8hz to sometimes up to 70 and 90hz. I often wonder how much I'm being affected by this change. Don't know. There is a disease called Morgellans which is not found in medical journals. I won't take the time to discuss this with you, but I also think I may have been infected with that "virus" in 2012. It cannot be diagnosed because is seems to be different with each body. I suggest you read up on this "disease." One thing I must include here is this: without sounding Polyanna-like, you know how important our thoughts, attitudes, beliefs can get in the way of healing. I have explored my false beliefs, gone into my childhood traumas, and pretty much explored my shadow (a term created by Carl Jung). When I'm in bed and cannot sleep due to the internal vibs, I sing the OM sound until I'm moved into another state of mind, more relaxed and I fall into sleep. I usually find music (turned up or with headphones) and dance or movement help me to feel better. I wish sincerely that I had a cure for you, as I'm always looking for clues to determine what the H..L is going on. I'm of sound and stable mind but I could sound very "mad" if I discussed this issue with people who have closed minds. Your journey has helped me to hang in here and continue to touch into the very big love of life I feel when I connect to the earth herself with my feet on the ground, rain or sun; I'm outdoors every day. Many thanks and hugs, Sally. Pam

  • Fergs Fergs Sally4Edgar

    Sounds like Multiple Chemical Sensitivity,I get internal tremors,vibrations,metal taste in my mouth that can last up to  4/5 months from chemical exposures,medications,  fragrances,dishwashing liquids etc,the anxiety of wondering if they will go away can be pretty scary.Its a pretty hard condition to have as it makes it so hard to work. I’m in Australia and supposedly Lyme doesn’t exist in Australia so I’m guessing that’s not it in my case,Ive just started seeing an integrative medicine doctor who has me on supplements but they seem to be making it worse.

    I’m about to have a metals toxicity test to see if I have mercury poisoning.

    Really need to get it to a stage so I can function.

    • Postalcanary Postalcanary Fergs

      Hi fergs. 

      I also multiple chemical sensitivity-MCS.  

      One of my symptoms was feeling a vibration running thru my body. My whole body.  All of it at the same time.  Almost like a really fast internal tremor.   For me the metallic taste, I've been able to associate with pesticide.  Even old pesticide.  Like in a place that was sprayed a year ago.  Sometimes I'm able to acclimate to it and the vibrating and metallic taste will go away.  Sometimes I have to be the one that leaves the environment. The learning curve of MCS is a hard one.  MCS is different for each person.  

      I ordered some socks that I love thru the mail. I've been wearing them for 20 yrs. they r being discontinued ☹️  I have neuropathy in my feet.  These make my feet feel better. 

      Anyway after waiting 3 weeks, they arrived. I opened the package sbdcat first didn't notice the very slight smell of camphor.  Or ben gay or something.  About 10 mins after opening the package,I realized my face and mouth r starting to burn.  Turns out it's the socks.  Well in the interim , I have handled my phone, the remote, my wallet , my coffee cup, even tho I've washed them all as best as I can, when I touch those things the reaction starts again.   MCS is a cruel joke. Drs don't believe in it. Family members believe what drs say. 

      Sadly u we r left to figure it out on our own and try to servive in a toxic world.  I think a lot of people that have been diagnosed with anxiety may have MCS and just havnt connected the dots yet. 

      I've only had it for 6 yrs.   but I'm not looking forward to living the rest of my life isolating in my safe place.  I get to sick from so many things. Car exhaust, laundry products hair products, not in myself, but on other people. Its all over powering. 

  • Rener Rener Sally4Edgar

    I found my use of gabapentin causes this to happen to Me. The nerves in My pelvic mostly were going crazy with a hard vibrating feeling. As I've been withdrawing off gabapentin the lower My dose is going the less my vibrating feeling.  

    • gail69256 gail69256 Rener

      Interesting... I accidentally forgot to get new prescription for gabapentin, so I went off it cold turkey after being on it for a few years...had bad muscle quivers I associated with neck or sciatica. I have both neck and lower back problems with allot of muscle spasms.. I wonder if the drug is , or lack of drug is messing with me too...

  • mc19 mc19 Sally4Edgar

    Sally - I just came upon your post and I see it was over a year ago so perhaps you've received some insights... I wanted to suggest you see a rheumatologist to see about Sjogren's syndrome.  I believe small fiber neuropathy can manifest as you are experiencing, and SFN can sometimes happen in Sjogren's... also, I would trust your instinct that there's a relationship with your spine in some way... I have more I can say on this as it related to my own experience, but I just wanted to say this briefly now.  I experience buzzing/vibrations that have become more frequent and in more body parts (first it was just one specific spot)... I also have issues with my spine, cervical and lumbar, but the cervical issues are more long-term and more serious... I know there is some relationship of my spine to the symptoms.... investigations continue.  wish you much healing and insight on your journey. 

    • Sally4Edgar Sally4Edgar mc19

      Hi, thanks for replying to my post. I have also thought about Sjogren's syndrome as you've suggested. A visit to a rheumatologist would probably be my next step.  I recently discussed my vibrations with my GP and she ordered a battery of bloods tests, all of which came back normal, so I don't know if she'll be willing to refer me but I can try based on my neuropathy. I would be interested to hear the outcome of your investigations as your spinal issues are in the same locations as mine. I hope you get some answers. Best wishes to you.

  • gail69256 gail69256 Sally4Edgar

    I'm 64. I do have autoimmune disease. I've also had surgery to my neck with titanium plate. I have numbness and tingling in all 4 extremities. I also have spondylosis in my spine. I also have bone spurs on spinal column. I have bladder pacemaker. In the pass month or so, I have had similar sensations you are describing. Usually I'm on my back in bed, or turning from side to back. Sometimes then I get dizzy, sometimes I don't. Frequently it happens while I'm waking up. The vibration last about 15- 30 seconds...but sometimes it feels like a"pulsing surge", like a switch being turned on and off, sometimes it feels like maybe just the head, other times it feels like my whole body. Only when accompanied by dizziness do I get nauseous....but not bad nauseous. I just happen to be looking for reasons this might happen, and when I think about it, and think about telling someone, it sounds crazy. Only other symptoms sounding only vaguely familiar to mine, were being described as sleeping anolmolies,, and upon awakenings with tremors. This is really not at all like tremors...so I thought I would type in my sensations to see if anyone else has similar sensations, and your blog came up. After reading yours, I realize that it is possible we are feeling quite the same thing . I was thinking it also was neurological or electrical, because of sometimes of the surging, I feel like I "buzz". Not painful..just wierld. I have felt it once or twice standing, but usually with dizziness and have had to sit down. Then it would leave after a minute or less. It is most frequently while I'm in lying position. I do have another disc in my neck, above the last fusion. I wonder if it has to do with these. Back of my neck up the back of my skull is always sore and very tender. A few months ago, while cutting limbs out of a tree, a fairly heavy one dropped on my head also. Did you have any trauma to head recently?

    • Sally4Edgar Sally4Edgar gail69256

      Thanks for sharing your experience. I haven't had any trauma to my head either recently or in the past, but from other posts here there does seem to be some common issues with this vibrating feeling and problems with the cervical spine. Like you my vibrations are normally when I'm lying down in bed, but of course it's always going to be more noticeable at night when all is still. Mine can suddenly start even when I'm lying totally still and may last about 15 or 20 seconds and then stop. Most of the time I feel it in my chest and can press and feel it with my hands, so not just a sense of vibration but actual physical vibration. Other times it can be set off with movement. I don't get dizzy or nauseous but I do have poor balance. It does sound like there's a spinal issue with a number of people here who are getting this sensation.

    • mc19 mc19 Sally4Edgar

      wishing you all the best, sally! bodies are so unique.  conventional medial knowledge doesn't have all the answers... but, sometimes with a good team or a great practitioner who is really interested, genuinely wants to help, a lot can happen... my prayers are with you for clarity about what's going on and relief.

  • judy92864 judy92864 Sally4Edgar

    Please make this vibration stop I'm going to lose my mind no one else feels anything I moved it came with me now it is to the point I don't want to move my head open my mouth talk ANYTHING I turned the heater off and it eased a feel done lil I alone they just don't understand

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  • rita74837 rita74837 Sally4Edgar

    I have been told that it could be medications. I think they may be right. I am doing some research on it at home. You didn't say if you take any medications but like me you might consider that.

  • Jim2k8 Jim2k8 Sally4Edgar

    Hi Salley,

    I googled terms of a problem I have had for about over a year and found your thread, title, and list of posts.

    Not having a medical background my problem was hard to state in terminology. "Vibration" of the nerves down my legs (and more recently including down my spine) seemed to be representitive of the sensation.

    I have read the many posts of this thread and feel for you and the many other posters with this and additional medical problems.

    It appears a few posters have found at least two broad-domain medical reasons that may be the underlying reasons for the "spinal nerve vibrations" we have experienced.

    We are definitely on the steep learning phase of what medically is happening - the underlying medical reasons and physiological and psychological details that explains what may be happening.

  • Sally4Edgar Sally4Edgar

    Update ... I’m now taking a low dose beta blocker (Bisoprolol) for cardiac arrhythmia so will have to see whether this improves the vibrations over the course of time. I haven’t noticed any immediate effect so far but it’s only been a few days since I started taking it. 

  • maggie98748 maggie98748 Sally4Edgar

    I have been taking a calcium channel blocker, verapamil, for the past ten years for arrhythmia which has done nothing for the vibration sensation or the feeling of a painful electrical current travelling through my body on waking. I hope you have better success with the beta blocker.

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