Brain quiver/ brain shake : Does anyone else have... - Headway

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Brain quiver/ brain shake

Elenor3 profile image
42 Replies

Does anyone else have brain quiver or brain shake? I constantly get this feeling - some times when I'm trying to think, sometimes when I'm tired, sometimes for nonapparent reason at all. It often starts with a feeling of tickling up the middle of my forehead, before a full sensation of (my brain is quivering like a jelly) shaking oR quivering inside my skull starts. Sometimes my eyes are affected, and sometimes not, sometimes it starts when I'm sitting still trying to have s quiet minute, an sometimes just when I'm out and about , but usually I'd say it's a due to lack of sleep. Either way is very disturbing :(

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Elenor3 profile image
Elenor3
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42 Replies
RogerCMerriman profile image
RogerCMerriman

No can't say I do, I twitch on simular reasons ie tired. And I can sometimes feel it coming other times It just does its thing.

Elenor3 profile image
Elenor3 in reply toRogerCMerriman

It sometimes feels like a twitching sensation - it's hard to know. No one has ever mentioned it at health checks - they look at me in an odd way when I talk about things that aren't on ther list of 'things' :)

angelite profile image
angelite

Hi Eleanor ,

Rest assured you are far from alone in this !

google.co.uk/webhp?sourceid...

After reading a few different stories, the theories are anxiety, paresthesia ( strange but harmless sensations caused by nerve signal disruption - often experienced by MS patients, not that I'm suggesting you have this as can be caused by any type of brain dysfunction ) side effects of anti depressants or withdrawing from them and mild partial seizures.

Okay, so the Queen of weird vibrations ( moi ! ) has had this at times : )

The most common kind for me is what I have fondly named ' Incredible wobbling internal organ syndrome' ! This happens frequently during going to sleep/waking up. My chest/stomach and contents feel like they are vibrating rapidly inside me and my eyes shift rapidly from side to side so I cannot focus. Only lasts a few seconds ( thank God ! ) Darned unpleasant and disconcerting, can keep waking me while dozing off sometimes but appears to do me no real harm !

What is it that your eyes do when having an 'episode' of this ? x

Elenor3 profile image
Elenor3 in reply toangelite

Hi :) thank you for your reply. It definitely sounds like you have this too. It differs from time to time. Generally it sets off a feeling of being about to burst into tears, or what I affectionately call 'the laugh-cries'. So that feels like - imagine someone's just told you some upsetting news and at the same time the unfortunate news is funny - like a you've been framed video.....so my forehead starts feeling tingly and then the quivering / shaking brain sensation quickly follows. It's very unsettling. There's no definite time period for how long it might last.....it's not usually very long but it van go in for several minutes up to half an hour. It's very isolating - family look at me like 'oh yes' and then carry on with everything and I sit there wondering if somethings happening inside my head. It's just weird. Sometimes my eyes have blurred vision and sometimes not, mostly they feel like tears are coming, but I'm good at stopping the tears now so often they just water. Thank you for the link, I'll have a read :)

Elenor3 profile image
Elenor3 in reply toangelite

Goodness me.....I followed the link and read the various pages where it's mentione by many people. The M.S. site / epilepsy site / neuro issues etc all seem to feature answers from people who suffer from it. Interestingly one person mentioned a symptom which I also sometimes get - not a lot, but on and off, where it sounds like someone has just slammed a door loudly right next to you/made a really loud clap or bang (but there's no sound). I just assumed that thisis related to the Tinnitus - and not to do with the brain quiver. The various buzzes and hums and whines etc. all seem unrelated to the brain shake feeling. I think any time when they occur together is a co-incidence. Someone also mentions it being heart rate related. I just can't face going to see another doctor , an definutely not another hospital .........not in this lifetime anyway :) I think I'll put up with it for a while unless it becomes too troublesome. Thank you for all the replies. :) Have a good week everyone.

Bessyh profile image
Bessyh in reply toElenor3

Elenor3

Bessyh profile image
Bessyh in reply toBessyh

I get this too have you had any answers from Dr's? Ive had this for as long as i can remember but now it is alot worse and its happening for longer. An episode might go every couple of minutes for an hours or more at a time and frequently throughoug the day. I have also had major head surgery 3 weeks ago with nerve pain and wondering if this might have triggered its frequency and severity?

Colej profile image
Colej in reply toElenor3

Hello! Not sure if this is helpful or too late, but I actually started looking into brain “zaps” after reading about something called exploding head syndrome, AKA Episodic cranial sensory shock. Apparently it is not harmful, but can be very unpleasant!

cat3 profile image
cat3

Hi Elenor. I do have all manner of weird sensations but that isn't one of them. I'm wondering if it could be more of an eye than a brain problem ; have you seen your optician/opthamologist or your GP about it ?

Alternatively, I did have a scary shaking vision problem years ago when starting on new medication. It ceased within hours of stopping the drug. Can you attach the onset of the symptom to starting any new meds ?

Brain and vision are closely related aren't they, and a process of elimination might just get to the root of the problem.

What do you think m'dear ?? xx

angelite profile image
angelite in reply tocat3

Cat, was the new med an anti depressant, that caused the eye probs ? x

cat3 profile image
cat3 in reply toangelite

Yes Angela, it was an antidepressant named Reboxetin !

Rotten business which I had to endure for a month whilst my GP convinced herself I'd stuck it for long enough !

Totally housebound 'til my daughter took the day off work, got me into a taxi and demanded an appointment at my GPs reception desk !

Got them discontinued with no argument. xx

angelite profile image
angelite in reply tocat3

Unfortunately it seems to be standard practice that AD's are given a month to see if side effects will settle. Makes life v. hard for those on the 'trial' period ! I assume your balance was affected if your eyes were misbehaving ? x

cat3 profile image
cat3 in reply toangelite

Oh yes, I literally couldn't sense which way was 'up'. It was a bad period 'cause I tried 8 different SSRIs all told, so basically eight months of my life written off !!

All good in the end though when the GP agreed to prescribe the one's I'd asked for in the beginning, which had no side effects and which I've taken ever since. :o xx

loglegmomma profile image
loglegmomma in reply tocat3

Are you willing to share what is working for you?

cat3 profile image
cat3 in reply tologlegmomma

Yes of course ; it's Seroxat (Paroxetine). I started on 30mg & later reduced to 20. Then I started halving the dose about 10 years ago so now I only have 10mg once each morning.

Are you struggling with depression m'dear ? x

loglegmomma profile image
loglegmomma in reply tocat3

Thank you! No depression, which is why it's frustrating all the meds they offer up are anti-depressants.

I've had a couple doctors try to blame anxiety, but I'm fine until the strange feelings kick in.

Elenor3 profile image
Elenor3 in reply tocat3

Hi :) it does seem to be a definute inside the skull feeling. Just as if the brain was slightly jiggling......really odd feeling. Generally when I'm sitting but not always. Sometimes when I'm trying hard to think (doing a puzzle or something) and off it goes :) just plain weird. I won't worry about it so much if other people are having it too :) I'd live to know what it is though. :) It's not mentioned on any brain recovery sites I've searched, but angelite has sent me a link I'm just about to read. :) x

Elenor3 profile image
Elenor3 in reply tocat3

I've had eyes looked at recently by ophthalmist - no sign of anything unusual amiss, but told to go straight to A&E if the 'funny' eye things I have should cause a loss or partial loss of vision. I think that's related more closely to the potential for detached retina more than anything else. My vision has retirned to normal now credit that I frequently get momentary blurring which comes & goes. It's just how it is now it seems .

Yes I get this too unfortunately- not pleasant and makes me panic for a bit until l remember to take deep breaths. Love Fiona x ps found it helps to put ice pack at bottom of skull top of neck to 'numb' sensations and distract me from pain.

Elenor3 profile image
Elenor3 in reply to

I'm such a wimp, I do seem to get it when I'm more tired than normal, and then it makes me have the beginnings of a crying episode (but I've got that so much more under control now.......it rarely develops into weeping thank goodness), nonetheless it causes upset. I'll definitely look up the link above to see what information ther is about it. It feels crinkly......it's very weird.

loglegmomma profile image
loglegmomma in reply to

That's exactly what I do too! Sometimes I use heat, but usually ice is more effective.

loglegmomma profile image
loglegmomma

I have tried to describe this to my doctors & I get looks like I'm crazy.

Sometimes I call it a "woo-woo" spell because it's such an odd sensation that makes me feel so loopy.

Have you had any relief?

Elenor3 profile image
Elenor3 in reply tologlegmomma

No it seems to come and go randomly - nothing specific seems to cause it. It goes as quickly as it comes. It's just another thing I'm getting used to these days x

loglegmomma profile image
loglegmomma in reply toElenor3

The "new normal" is how I label it 😕

Elenor3 profile image
Elenor3

:) I can relate to that :)

vincentchia profile image
vincentchia

Some Suggestions : Relax (for example : good restful sleep, sitting meditation, moving meditation like yoga or tai chi). Rejuvenate with healthy nutrition (for example : Organic raw wheat grass juice). Detox (for example : from toxic metal cleanse, to liver cleanse, to colon cleanse and etc). These help me and I hope these will help you too.

Elenor3 profile image
Elenor3 in reply tovincentchia

Thank you so much for your kind suggestions. I have serious sleep problems since my injury so I'm aware that this and fatigue almost certainly cause a lot of the symptoms I have, and I've therefor been coping with it through using mindfulness techniyews. I feel it, pay attention to it and acknowledge it,mind then try to carry on doing whatever I'm doing at the time. I'm not so troubled by it now that I've grown used to it. At first I found it quite terrifying. I wondered if I was about to have a seizure or worse. I now understand what it is, and although it can be disconcerting, it doesn't do any harm. It is more of a distraction now than anything else. Also, at first it was quite remarkable in intensity. Now it's a basic sensation which I try to treat as I would a headache or something else that's bothersome. It's an odd thing to experience all the same. If it's particularly bad and I mention it ( if I need to stop in the middle of a conversation for instance) , I think it's more worrying for the other person present. I'm no longer alamed by it. I tell them it's normal and not to worry, and resume the chat when Im able to. I haven't done any detoxing, but I follow a ps healthy a lifestyle and diet as possible. I hope it will continue to subside but I'm not sure if it will. It's a very strange thing to have, I've never felt anything quite like it. I have lots of strange things which are now 'normal for me' and I consider myself to be very lucky with my recovery although I have worked hard at it - I keep going. I will look into the juice you mention. I believe everything is worth a try thank yiu

Lncarnold profile image
Lncarnold

I have had these 'brain quivers' lately too! I thought I was dreaming but it woke me up. It started after I began to feel like my brain was filling up with foam and my eyes hurt, then dizzy (during the day) but then night comes and it feels like a muscle twitch right in the middle of my head...wakes me up. Very weird and in reading what people are writing, I am happy to know I am not alone! It does help in dealing with it a bit more. I also know it does no good to go to a doctor. They really don't know very much. I have had to diagnose something myself a few years ago (suffered for 21 years and then told THEM what it was.."Oh yeah! That's sound right" they said.. I had Superior Canal Dehiscence- a small hole in the superior canal of the ear which made me...get this,...able to hear the inside of my body, ie. eyes move, heartbeat, neck bones moving, jaw moving etc....drove me crazy and finally had surgery -now I have hyperacusis and tinnitus! .) I should not have to pay them for that diagnosis, btw! Anyway, thanks for the post(s) and some day doctors will care enough! They won't listen if there is nothing on an MRI to see!

Elenor3 profile image
Elenor3

I was interested to read your post - this frightening symptom appears not to be able to be diagnosed as a medical condition, but so many people seem to suffer from it following brain trauma. I'm better now at 'ignoring' it., which is what I've been told to do by the neurologist, so I have much less anxiety about it as the years pass. It still stops me in my tracks sometimes, and I'll stop mid sentence to 'pay attention to it and move on' as I've been told to do. The best reassurance I've found is from lovely people here on the forum who have kindly written about their experience of it. Knowing you're not alone feeling like you're losing the plot is ironically comforting.

I also have hyperacusis and tinnitus - I'm used it now. Getting over the ininitsl shock of how life is different now and that it's going to stay that way is the hard part. Thank you for sharing your experience.

Phoebelawlor profile image
Phoebelawlor

Elenor3 do you feel it/hear it in your ears? I’m not sure if I have the same thing but it happens when I’m tired. When I shut my eyes, I get this like, “feeling” (I’m not sure how else to describe it) and it rushes through my head and into my ears.

Elenor3 profile image
Elenor3 in reply toPhoebelawlor

Hi, I’m so sorry for how long I’ve taken to reply. I’ve been having a rubbish few weeks. Yes it feels sometimes like my tinnitus is affected by it or happening at the same time and sometimes it helps to close my eyes while I let it pass. It is a very distracting sensation. It’s not painful at all, just very noticeable and hard to ignore. There are some articles on the internet about it with various suggestions as to what it is but I don’t think anyone knows. My brain shake isn’t half as bad now as it was following the accident. But it comes and goes unpredictability and is always surprising no matter wher or when it happens. I’m used to it now and I’ve been told it’s not harmful so I try to (on the Neuropsychologist’s advice) ‘listen to the sensation and then move straight on to something else’. It also doesn’t seem to last as long as it did at first - but that might be because I only pay attention to it for a minute and ten busy myself with something to take my mind off it. It’s just another weird part of being brain injured. The more people I hear about who have it, the less I worry. At first I knew only one of two people - but over the years I’ve come across many more so it’s obviously fine to have it if a lot of us have got it. I was told to help distract myself that I should either suck on a strong tasting mint or have a strong tasting drink like a fruit tea. Mints used to work at first - but now I manage with the ‘Pay it attention for a moment and then move on’ strategy. I hope you’re not too troubled by it. xx

Sammi01 profile image
Sammi01

Hi my son is 11 qnd is complaing of his brain shaking he's been sleeping a lot but was awake late veing a wwek end playing xbox

Elenor3 profile image
Elenor3 in reply toSammi01

Hi

As your son is only 11 I thibk I’d get this checked out with your G.P. I have a range of other head sensations but after extensive tests (MRI etc ), i know it’s definitely caused by a serious head injury. There’s a wide range of opinion about the effects of computer games on children’s brains, and various studies linking all sorts of medical issues. In the absence of a head injury I would take him to the doctor for professional advice. Computer gaming has been listed as a contributing factor in some cases of epilepsy and other illnesses so it’s just worth getting him checked over. The neurologist has offered me medication and advidrd me not to become over tired as it’s often worse on bad fatigue days. I’m sure the GP won’t mind even if it’s nothibg at all, it’s worth a visit just for reassurance if nothing else.

Eleanor, I just read your story.. because I was searching for a name that would describe the exact or more like similar sensation you are enduring. . and it brought me to you.. your story seems more similar to mine.. I talked it over with a neurologist .. and look at me like it was made up.. I get the brain shake on my sleep.. when I'm most vulnerable. .. and I try to brace myself if I'm aware enough by facing down on my pillow until it goes away . .. then I get nauseous afterwards. I hope you got answers that may have solved your situation.. I can't seem to find one..

Elenor3 profile image
Elenor3

Hi,

I'm sorry to hear you're suffering with this. I have found it lessens with time but am still surprised when it happens. It's very odd and can be distressing. I'm no longer so distressed becusse I understand that it's just a 'thing' that I have and that it isn't going to do any harms. At first I thought it was a seizure starting or a minor stroke. I get different sensations around bedtime and duing the night, but the brain shake is nowhere near as bad as it was at first. It was just very alarming, especially when the neurologist couldn't really explain what it was to me. He just says 'oh yes some people get that, don't worry about it'. If you have any concerns you should go to your G.P. And seek advice, but it sounds like you have vestibular problems as well if you're feeling nauseous with it. Maybe go back to your G.P. And ask to see a vestibular specialist? Wishing you good luck with your recovery. x

RachelleM2017 profile image
RachelleM2017

Glad to know I'm not alone. I noticed it happens when my husband & I are arguing, just stressed out. I wish they would just go away

Flowerintherain profile image
Flowerintherain

Yes. It’s the worse. Last night it happened and was followed by crippling naseua and dizziness for about two hours. Could barely stand and laid in bed for two hours until it went away. Has anyone experienced this?

Elenor3 profile image
Elenor3 in reply toFlowerintherain

I’m lucky I don’t have other symptoms with it. Just a very very odd sensation of brain shaking. It’s very alarming. I’m now a another few months on and it seems to happen less frequently but more noticeably. It’s impossible to think when it’s happening- so I just stop and pay attention to it and wait for it to pass. I’m so sorry you have other things going on as well :/

It’s not easy for you I imagine. Take care and be sure to go to your GP if you have any other symptoms to get them checked out.

Latanyasmith92 profile image
Latanyasmith92

Yes this just started happening to me off of Zoloft Trying to find home remedies to get rid of it it happens every five minutes when my brain is shaking twitching or jumping

Elenor3 profile image
Elenor3

I’m sorry to hear that , that’s a lot to cope with. I haven’t heard of any remedies that I could suggest. The therapist told me to ‘acknowledge’ it and pay attention to when it starts, but to try and ignore it. Of course it’s difficult to ignore as it’s such so intense. I hope you’re successful in finding help.

Lizstem profile image
Lizstem

Not sure if anyone is reply to these anymore - but this happens to me. Feels like a bunch of little fingers flicking around in my head - a quiver or shutter feeling - and I have to hang on to something - but I can still focus on items but just feels like a tornado in my brain and super uncomfortable and scary and then it goes after like 10 seconds. Sort of like that feeling when you stretch in the morning and your body shakes but it is completely in my brain and I don’t want to move. If I am standing I have to sit immediately - it can happen at any time and doesn’t matter at all what I am doing .

Elenor3 profile image
Elenor3 in reply toLizstem

Hi

Always best to get unexplained symptoms checked out by your GP but if this is the same as what I have , I still have it five years on and nothing else has happened as a result of having it . It was so severe when I first had it - I thought I was having some kind of seizure (I’ve never been checked for seizures but took anti seizure medication following the initial accident/injury) . No neurologist (and I’ve seen several ) has been able to offer any diagnosis other than ‘nerve damage’. Basically I put up with it, don’t know what it is, and although it sometimes stops me in my tracks, I’m resigned to having it . I’m reassured through seeing posts here on headway that other people experience it as well. The sensations I have are more like physical skull shaking / a feeling of quivering inside the skull. Im sometimes alarmed by it , but my partner says there is no visible external sign of it happening, so I try not to get too upset when it happens in public places. The number of attacks have decreased over time but there seems no way to predict how many times in a day it will happen. I’d suggest you get it properly checked out, be sure it isn’t something different to what everyone in this thread is suffering from 🙂 . Wishing you good luck in finding some answers.

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