Hoping for some advice here. Last August I felt what can only be described as a trembling in my left ear.
As time as gone on this trembling because what can best be described as a spasm that I can feel and hear. Its like a continuous process of tension and relax within my ear canal with a bass like sound, similar to a car going past you with the bass turned up. I've had 3 occasions when its been appalling, like having a helicopter inside my head. Mainly it is a rumbling sound with a physical feeling, with a dull ache in my eardrum and a weird, slightly numb feeling in my left cheek.
Its so strange because if I shake my head it stops, if I plug my ear canal tightly with a finger it stops and then will slowly start to come back after maybe 10-15 seconds. And to make it even more bizarre it can go away for a week, or a few days and it will be like I have no problem at all.
So from a bit of research and a bit of gut instinct I think I have middle ear myoclonus, which is a treatable condition as I understand it. For whatever reason a muscle/tendon is making my eardrum vibrate. Now I'm currently going through ENT on the NHS and as personable they have been, I don't seem to be getting very far.
Has anybody out there suffered from this? I'm willing to seek out any avenues to get this sorted, private doctors, etc
Cheers Guys!
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Jimmittus01
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Yes I've had this for about a year...almost always at night. I had a half hour phone appointment with one if the consultants at the Tinnitus clinic in London. He said it would probably diminish and it has. I think I've realised that it's my anxiety about it that's the problem rather than the thing itself, although it's not pleasant. I had a similar experience with the NHS...not helpful..which is why I went to the Tinnitus clinic who do know about it. Good luck !
Thanks for your insight Peeweecat15! The ray of hope I have is that it randomly turns off for a week, so I know this is non-permanent but at the same time I think I may need some help to help make it disappear full stop. I'm going to try and get an appointment with an ENT/Neuro guy, maybe someone with some familiarity with this condition. Glad yours is improving.
Could you let me know who you see and whether it helps? Part of the problem is anticipating the next attack so I agree, it would be nice to know it wasn't coming back at all. I now have 3-4 weeks without it happening and then only lasting for about 20 mins...but there's always the fear it will get worse again.
Sounds just like me! It’s ruining me. It takes over the left side of my head. It’s like a low rumble. I hear it and FEEL it. When it’s bad I can’t hear so well, my ear feels full and pressure on the left side. It makes me feel weird, fuzzy in the head. If I go outside to a busy street, it amplifies it and my perception is out of whack, can’t tell where things are coming from. I get weeks of perfect normalcy then bam- weeks of this either mild, moderate or intense with some random normal days.
ENT isn’t sure yet. I do feel lightheaded sometimes.
Interestingly, I had a hearing test done during a bad episode and it showed low frequency hearing loss. However I also had a test when I did not have an episode and it was normal! I tried muscle relaxant flexeril and Robax, but they didn’t help. Clonazepam didn’t help.
Sorry to hear you are suffering with this and that medication has not worked out. Have any of the doctors you have spoken with mentioned middle ear myoclonus? The only medication I have received so far have been steroid nasal drops, to no effect. I have tried baclofen which didn't do anything either. My theory is that because the muscle is small perhaps the meds can't target it. Do you get a weird feeling in your cheek?
Yes the ENT that saw me for a whopping 15 minutes said she had a couple theories (Menieres or Tensor tympani syndrome-which I think might be the same as myoclonus? ) she said it would take time to diagnose. I sometimes get tingling a bit down from ear to bottom jaw and lip, not my cheek exactly.
This whole issue has been almost 24/7 for the last 2 weeks, which is pretty new for me. Usually I get more breaks. Does yours seem to be affected by weather? Summer ended and it’s been raining now for the last 2 weeks. Who knows!
I've had it 24/7 and then for no apparent reason it will stop. Sometimes the vibration has been so strong I can feel it in my lower jaw. I'm not at the stage yet where a doctor has given a theory other than to say I have eustachian tube dysfunction which I knew I had anyway. I have an ENT appointment in October but I know I'll probably have to see another doctor privately. If this condition can disappear for a week or a few days, it's treatable. I'll try medication and if that does not work, I'll try Botox. And the full stop for me will be surgery. Regarding weather that's an interesting point. In your case it could be that damp weather may cause inflammation in your eustachian tube, which then aggravates the muscle? Just an idea. Try steaming and see what happens. Please let me know your progress.
I was in conversation with you in September...just wondered how you're getting on ? Have you enquired about Botox?
Mine was a lot better until this week when I flew to Barcelona...not sure if it's the flight or what. Am very disappointed. It's so hard to get to the bottom of this.
Not sure if my post to you has been sent, so will try again. We spoke in September when mine was a lot better but has worsened this week after a flight to Barcelona. Not sure if it's the flight or what. Have you enquired about Botox? Do you know any ENT's who do this?
Good to hear from you but sorry to hear things have been not so good since your flight. Possible the pressure may have caused some problems?
I saw an ENT consultant about three weeks ago, the same one as last time on the NHS. Very professional and pleasant. I explained my symptoms again but also mentioned the feeling in my cheek. She seemed receptive to my idea that the problem could be nerve related. I have a CT scan on the left side of my face this week. I will see her again in February (which seems like a long way off). I've also got an appointment with a neurologist in Feb as an MRI revealed spots in my white matter!! Fun times.
Weird thing...every time I drink to excess the hum goes away and the left side of my face loosens. Went out last week I went out with friends and I had 2 cans of Red Stripe, one shot, one pint of John Smith's and then three pints of German Pilsners. Now I was boozed but not blitzed. I go to bed, wake up a bit muzzy headed but...silence. Now this effect lasted 3 days. My theory is the alcohol had a depressing effect on the muscles. Do I want to get boozed up to get silence all the time? Not really but yet again proves there is something going on here. And this happens every time after large alcohol consumption.
P.s Got the name of a guy in Harley Street who seems to have a good grounding in Middle Ear Myoclonus, happy to pass it one to you. I think he have may done the operation to sever the muscle, don't know if he does the botox. Any doctor with some experience in this will start with medication.
Sorry I didn't reply to this...I have only just received your reply to my last message. How are you? Who would have thought ears could be so troublesome.
My myoclonus hasn't settled since coming back from Spain..it was pounding away for 8 hours last night.
Yes, I would be grateful for the name of the guy in Harley St....finding people who know about this is difficult.
Let's hope that 2019 brings solutions for both of us !
Good to hear from you. Yes, this condition is a bit of a bastard, no doubt about it. The last few days mine has been appalling after a very good period. If I get a bit boozed it switches of for about a week if I'm lucky! For that period of time I'm normal and it's quite wonderful.
So the name of the guy is Gerald Brookes, he operates out of two clinics in Harley Street. From what I've read he has all the credentials and a bit of solid experience in this area. I've got two appointments coming up and if I draw a blank I'll be heading to Harley Street.
Does alcohol have any effect on your condition?
All the best for 2019. I'll keep you updated and please let me know how you get on. I think we can get this gone, it's just a matter of how
Thanks for your reply and I will google Gerald Brookes later...have you spoken to him or has your info come from the internet?
It's good to be in touch with someone who has this as it's so unusual that people just stare at me blankly when I talk about it.
I think I had the opposite effect with alcohol. I don't drink much but had a large glass of wine before Xmas and an hour later my ear started banging. May have been coincidence but I blamed the wine.
What I hate about this is the unpredictability and unanswered question's. It was so much better before I went to Barcelona but I don't want the fear of it to stop me travelling.
i join this chat forum because it seems to me ,you are affected by the similar symptoms like me and suffering from this rare condition (by the way i am from Germany). My symptoms as mentioned are very similar to yours , but i get this fluttering in my left ear only in the night whilst falling a sleep or shortly before waking up in the morning. So its a very annoying issue which disturbs and deters me from having a healthy sleep. Taking in consideration the fact that my job is very challenging , i am struggling with this "illness" without a clear idea how to win this battle without most radical method - a surgery of middle ear muscules. It all started 4 years ago and came from nowhere. First it was single knocking like every couple of seconds but then the noise transformed and currently sounds like machine gun shots continuing between 5-15 seconds and lasting for 15-20 Minutes until the body gets tired of and falls asleep somehow. What is also very frustrating is the noise sometimes appears middle in the night what causes sleepless nights in the end...I so far tried relaxants which didnt help. What seems to help is Carbamazepin so obviously its nerve issue and probably caused by anxiety. I indeed went through a very hard time before the symptoms appeared for the first time like divorce and getting my study finished. Jimmittus described the situation with alcohol what i partly can confirm but only up to a certain degree. Everytime i drink alcohol, my body falls asleep sooner so the fluttering does not have the chance to begin in the first place. Nevertherless what i could recognise is everytime i woke up fot the toilette or any other reason and went back to the bed, the fluttering immediatly was triggered on and got even worse.
Here are some findings regarding what keeps the fluttering away or makes it worse:
1) positive things
- high water consume in the evening
- listening to the music or another sounds (like waterfall) whilst falling asleep
2) negative things
- salt, sugar or spicy stuff in the evening
- tea or coffee
- fatty food like duck , pork or any other fat stuff containing a high percentage of fat in it
As there is only one definite thing to stop this fluttering which is a surgery, i started to take antiepileptika the one last time for a month to get this symptom calmed down. But the longterm and daily intake of this medication is not an option for me so if its going to start twitching after taking meds once again, the accomplishment of surgery seems unfortunately to become unavoidable.
Please keep us up to date and write here if there is something new you experienced or get done by the doctor
Great to hear from you. I really appreciate your experience and information- very helpful. The doctor I saw last suggested I may need Carbamazepine and seeing that your symptoms are almost identical to mine this gives me hope. I also wonder in my case whether tension in my jaw (TMJ) may play a part? Also on the subject of alcohol, I think for me just as important is the ambient noise in the bar. The chatter, etc seems to aid the calming effect. To wake up to silence is wonderful and something I will never tire of.
I see a Neurologist this Tuesday and I will mention all of this to them. Like you Segej, if surgery is the only way to truly end this condition I will do it, I'm tired of this bloody thing! I won't get on a plane with my ear like this, so at the moment international travel is off the table.
I will update on progress and please let me know how things are for you. Peeweecat15 is also having the same trouble.
Hi . I know this thread is old , but hopefully someone will read this , myoclonus does respond to alcohol, I have myoclonus dystonia and used to self medicate until I ended up in trouble with alcohol, anyway long story short I had DBS surgery 5 year ago, it helped the myoclonus but I suffer bad with MEM middle ear myconus and it's awful, I also have it in my soft pallet at the back and that clicks all night , so I have knocking in my ear and clicking in my throat and none of it is fun , also you do get ear pain with it
Will be interested to know how you get on with your consultation Jimmitus.
Sergej, you say that surgery is the only choice but have you considered botox?
Like you, mine is nearly always at night but I have taught myself to sleep through it by lying on the affected side and imagining I'm on a fast train. Daft,I know, but it works.
At the moment, mine has quietened down but like you Jimmittus, I don't want to go on a plane as it affected it before.
Sorry to hear that you haven't had much joy from your latest ENT appointment. Surely all ENT'S should know about middle ear myoclonus...it's rare but not that rare.
Mine has settled down a bit but not as much as before I went to Barcelona. I have it on average every 8 days, nearly always at night, sometimes lasting a few hours, sometimes only 20 mins. It's the unpredictability that I find difficult. What is your pattern?
Do let me know if you visit the guy in Harley St...I think with this we have to go to the top ...regional ENT'S don't seem to know as much about it.
I did find talking by phone to the consultant at the Tinnitus clinic in London helpful, Mark Williams I think he was called. He knew exactly what I was talking about and said botox was a possibility which reassured me.
Glad you've had a bit of relief here and there, it really helps. I seem to get this 24/7 for maybe 3 weeks and then get a week off. It will either turn itself off or a bit of alcohol will do the trick. I get this sinking feeling that the neurologist is not going to know what I'm talking about when I say a spasm is happening the other side of my ear drum. I said this to the guy before and he looked a bit blank and then said "probably a bit of eustachian tube dysfunction"...groan
I think you are absolutely right, you need to talk with someone who has at the very least heard about this condition. May consider this tinnitus clinic idea, thanks for that info. Plus liked your idea of imagining being on a high speed train, good technique, I'm using it.
Just wondered if you have had any joy with finding treatment?
I'm trying to work on the anxiety that I feel around it ...why does it make me anxious when it's not painful. Nevertheless, it would help to know that there's a definite treatment if I wanted it.
I've actually just contacted the PA for Dr.Brookes in Harley Street regarding the guide costs for a consultation and any treatment on the day (£250 consultation up to £700 for tests, etc). Its a hefty lump of money, but I've got to try this avenue. I'm waiting on some test results today from Neurology, once I have these I'll book my appointment. Last week was great because all my symptoms went away, of course they came back but it gave me a rest. When they do go away I think "that's it, I'm healed!" but alas no. But its a hopeful sign, if something can go away, even for a little while then its treatable I think.
re:anxiety I understand exactly how you feel. Something has invaded your body and your mind, so of course it will make you feel anxious. When this whole horrible episode started for me, it wrecked me. Looking back now I can see that some of the things going on, were to do with an underlying brain issue (but I didn't know that then). I would suggest having a watch of Julian Cowan Hill's videos on Youtube, these have been a great help to me. I've actually met him, a calm and kind individual who really put me at ease when I was feeling particularly low. He suffered with appalling tinnitus for a long time but was able to get rid of it via his own techniques. There are some very effective techniques in those videos that might help in the short term, certainly with your anxiety.
You won't have this condition forever and try and visualise yourself in the future without it, that's what I focus on. I'll let you know the outcome of this appointment, I also might get some accupuncture in the next few weeks.
Thanks so much for your reply and I look forward to hearing the results of your consultation.
Mine is absent more than it's present so I ask myself...why the anxiety? I think it's fear of it getting worse because it's such an unpredictable little monster!
Just to say I had an appointment with Dr.Brookes just over two weeks ago. Really knowledgeable and personable guy. Incredibly thorough. I got a diagnosis of middle ear myoclonus. Great to finally get confirmation of something I've known for a while.
I've been given a prescription for amytriptaline. I'm going to give myself 2 months to see if this helps. I wouldn't hesitate to go back and see him. I want to pursue the medication route but would have the surgery for sure. Meanwhile I'm going to investigate TMJ massage as well as acupuncture. I think the condition is getting better as I'm getting a week here and there where I don't have a problem at all. I think I have triggers too, I recently got an underground train and I'm sure this aggravated my ear. I'm going to wear earplugs on the underground now.
Good to hear from you...I was wondering how you were getting on.
Did the consultant say what causes it and did he say that it often gradually stops happening? Did he mention anything about botox or the operation and does he perform these himself?
Mine has settled down a bit...recently had an 18 day break which was wonderful but disappointing when it then comes back.
Interesting about your underground trigger...I wonder if it has anything to do with pressure because flying made mine worse after it was getting so much better. Can't see myself flying in the forseeable future.
Sorry for all the questions and thanks for keeping in touch.
I'm always happy to answer your questions. Dr.Brookes suggested stress as a potential reason, jaw tension. He also noted my neurological situation as a possible cause. He did say that he performs the operation and it's fairly straightforward. He said he would do it as a "last resort". He didn't mention Botox, though I imagine there are clinics in the UK who do it.I would certainly have it done and surgery also. He also noted my intolerance for loud noise. I've never been able to deal with sirens, etc. When I had a pressure test done at the clinic, they played a tone in my left ear (problem ear) and the right ear did not like it at all! It started to tremor.
I'm going to wear earplugs on the underground for a while and will see if this helps. And until this condition is fixed I'm not getting on a plane. The thought alone is off putting to me.
Anyhow I'm feeling positive, getting somewhere at last. And my situation is much better than it was. My ear is being irritating today, but I know it will turn off in the next few days. Just think in your case if it can go for 2 weeks, chances are good that you can shift it permanently.
When I've undertaken some acupuncture and TMJ massage I'll update on the outcome. Keep me updated on your appointments and how you get on.
Thank you so much. It's good to know that there is a definite solution to this ..surgery...if all else fails. I'll be interested to know how the amatryptyline goes.
Just wondering how you're getting on with your various treatments.
I'm having a bad spell at the moment and feeling quite despondent. So fed up with the random nature of this and the whole roller coaster ride of it all.
I'll give it a bit longer to see if it improves and if not will probably follow you to Gerald Brookes!
Always great to hear from you, but I'm sad that you've been going through a tough time with it. I know exactly what you are saying! I had it appallingly for 3 weeks straight, no let up at all, day and night. For the last 3 days I haven't had it and it is paradise, it reminds me how living is without this condition.
Frustratingly I don't think Amitriptyline is working for me, certainly not in the 20mg dose. I'm going to see my GP week after next to see if I can get a higher dose, or a different medication. I'm now in the position that I know more about this condition than most of the doctors I see!
Also have a think about what vitamins and minerals you are taking in, have you had a blood test at all? Magnesium has been known to help with MEM, I'm a bit on the fence with that, but I've been taking it anyway. I'm probably physically the most healthy I've been and it took this whole depressing scenario to get that to happen. So have a think about supplementation. I've had acupuncture too which was weird and interesting, there is absolutely something in this manipulation of nerves. When the needles were placed in my face and jaw I could feel a vibration above my left eye! I have also had some TMJ massage, it certainly loosened by jaw but I also looked like I'd been in a fight as one side of my face was swollen.
I would absolutely go and see this guy in Harley Street, don't be sat there suffering for too long, its not good for your mind. Its expensive, but it is worth it. This is a stepping stone to get this fixed. When I have it bad, if you could book me in for the operation tomorrow, I'd have it done. I am determined to get this MEM fixed by the end of the year. It is encouraging that you get days of silence as do I. Focus on that! You will beat this, but it will just take some time. Let me know how you get on in the next few weeks right?!
As ever I wish you well and a nice bit of peace and quiet
How are you getting on? You had it bad when you last wrote. I had a week and a half of no symptoms and then it came back. It seems to do this. Amitriptyline is sadly not doing very much for me. Going to see if I can be prescribed Carbamazepine or a low dose of Clonazepam by the GP. If no joy back to Harley Street, I want this condition dealt with by the end of the year. The left side of my face feels like its been injected with something, very unpleasant. I guess on the plus side I have a week of normality...wish it would last.
Mine is still the worst it's been...am in the process of making an appointment with the consultant you saw, probably on 1st July. I might just have an initial consultation first of all because , and I know this sounds crazy, I'm afraid of the tests making it worse, especially the pressure test and the suction test...are they very invasive
? The reason I think this is because it only took one 2 hour flight to Barcelona to put these ear issues from almost gone to really bad so it's made me wary of intervention.
If yours were like mine, which is just happening at night time and at worst approximately every other night and at best 2-3 week gaps, would you bother with the treatment that you're considering?
I ask this because I often wonder if I 'm just being a wimp and should just get on with it... after all it doesn't hurt and I have taught myself to sleep through it. Would be interested in your thoughts. Hope all this makes sense. Do let me know how you get on with the other meds you're considering.
I'm sorry to hear that it's been so bad. But I'm glad to hear you've decided to have a consultation. And no I don't think you are crazy nor a wimp, far from it.
Before you have any test you will have an initial chat and I'd raise any concerns regarding the tests with him. I didn't find them too invasive, though my right ear (good ear) didn't particularly like one test and I had a bit of pain for a few seconds. It would appear I have cochlear recruitment in that ear.
You ask some very valid questions. Though I think I'd still want to get this fixed. We've both got something that has invaded our heads which we didn't ask for. And we've both obviously developed some good coping mechanisms. You may find that after a short course of medication it goes away! I'm hopeful it will for you. You may never get to the stage of anything more drastic.
Please let me know how you get on at your consultation. And I will update after I see the GP and hopefully try a different medication.
Just wondering how you're getting on and to give you an update on my situation.
I didn't go to see the consultant in the end...I decided to wait to see if it would settle down again and it has. I've had 4 weeks free of it which is the longest ever but I'm not complacent because I've had breaks before and it's always come back.
I don't know if this has anything to do with it but I've been taking a multi vitamin and mineral tablet (Centrum) for the past few weeks. Interestingly, I had also been getting leg cramps and they have stopped too so I'm wondering if I was short of some important vitamin/mineral which aids muscle function. It wouldn't be magnesium as I've tried that before with no success.
Anyway, I'll be interested to hear how you're getting on and whether different medication helped.
Always good to hear from you and even better to hear that you've had 4 weeks of relief. What a result! I hope it lasts. In any event, enjoy it.
I did go and see the GP but that was a waste of time. The two who I saw previously were helpful and rather interested in my case. This one was a bit obstructive and said she'd need to contact my specialist before she tried me on another medication. I guess they have rules but I did detect she didn't like the fact I knew more about MEM that she did!
Very interested to hear you may have got an improvement through supplementation. I'm on a manner of vits and I too have had little difference with magnesium.
Now I've tried something which sounds bizarre but it's actually making a difference. I noticed that whenever I go to a concert (wearing earplugs) I have a day or perhaps a week of normality. I speculated that perhaps the vibrations were pacifying the inner ear muscle. So I took this further. I have a sonicare toothbrush. I put a foam earplug on the end and started working the area around my ear and cheek. I used it for 5 minutes and then...silence. The effect lasted 2 hours. I then tried the technique again and got an hour of silence.
So I'm now doing this 3 times a day, for 5 minutes. The noise stops but it does return, but this is working. We shall see. I'm still going to head back to Harley Street to review my options and will let you know.
If I don't write you before, if you make it to 2 months will you let me know? I'll be double happy if this happens. People need positive outcomes.
Just wondered how you're doing and to give you an update on me.
I had nearly 8 weeks of silence before it came back ( why why why ?!) and then another nearly 3 week break. At the moment it's happening every night but I have to keep reminding myself that it will stop again because I never believe it at the time !
How are you? Have you been back to Harley St?
Have a feeling that this is something I have to learn to accept...been over 2 years now.
As ever good to hear from you! 8 weeks is a fantastic achievement and shows, that just maybe this condition is phasing itself out for you. I know its a heartbreaker when it comes back though But it will stop again, without a doubt.
Its puzzling as to what makes it re-appear. But I see this condition much like getting a twitch in your eye, you may get that through stress, lack of sleep or for NO apparent reason.
I've been very well Two weeks of silence which is a first since August 2017 and your guess as to why is as good as mine. It just seemed to happen. I'm prepared for it coming back though, I've learnt you have to be. Not being negative, just realistic. I've been enjoying this break though. Listening to music without interruption, being able to concentrate on films, tv. Normal life. I went out drinking with a good friend the other day, got horrendously drunk (which I never do). I was sick from about 3-5am, but as I was vomiting I thought "This is appalling, but at least I haven't got that awful noise in my head".
One thing I have been getting, very rapid drumming as I lay my head down. Lasts maybe two minutes then stops. Both ears do that (which is new). I will happily take this over bass noise for days on end. So I haven't been back to Harley Street yet, though I probably will realistically. The last time I saw him he wanted to rule out Cochlear Hydrops and prescribed a medication for that, which didn't do anything for me. I understood his position, wanting to be certain. Both times I've been there he's wanted to be able to hear my ear noise, but no one has ever heard it apart from me! I reckon though if you put a small mic in my ear, it would pick it up. A very helpful person sent a link to a paper on this condition in this chat. Written by a Dr. Bance based in Cambridge, looking like maybe the most knowledgeable expert on MEM in the UK. I did think about maybe a visit to him, but the whole thought of starting again, just put me off.
I have been under neurology on the NHS as well, I have damage to my white matter. I think this is down to a severe lack of B12 over maybe a year (2016-2017), though the professional I saw couldn't be certain. I spoke to him about middle ear myoclonus and that it is partly a neurological disorder, but he'd never heard of it. Its easy to get frustrated. I've been taking B12 since maybe early 2017 and have got my dose up to 5,000 mcg and I feel this has made a real impact and I wonder how much of this MEM has been caused by this neurological situation? Lots of questions Peeweecat and not that many answers.
Sorry, this has been an essay! But I'm so pleased to hear you've had extended periods of time with silence. You will have this again. I'm on a "wait and see" at the moment, will let you know what happens next.
Hello . I suffer from myoclonus dystonia , I had DBS surgery 5 year ago for the general myoclonus, but for around 3 years I have had this horrible MEM and also in my soft pallet at the back of my mouth , it clicks all the time ,
When I see my neurologist I'm going to have to ask about treatment because it does my head in .
Myoclonus always responds to alcohol but don't do like me and try self medicate because I ended up drinking far too much and in big trouble.
Just thought I would tell you that it is a bummer .
I go to the Walton centre in Liverpool they are great .
I've been struggling with middle ear myoclonus for the past 7 months too. It started a few days after a flight (may or may not be connected) and a day after a really stressful afternoon. I actually woke with hearing loss which returned after a couple of days. Since then I've had intermittent buzzing in my left ear, mainly after I vocalise or hear a loud noise. I also get what feels like electrically charged headaches and brief dizziness. I've had an MRI scan to rule out anything sinister and that was clear. This past couple of weeks the buzzing has been non stop so I'm off to see an ENT Consultant next week. Like you, Jimmitus, I won't be getting on a flight with this so we're off to Portugal by sea in April! (Just as well my husband likes road trips!). I've also made an appointment to try acupuncture as I've read this thing could be stress/anxiety related so anything to help the muscles relax. I'll let you know how I get on.
Good to hear from you but sorry to hear you are struggling with this unpleasant condition. I would be very interested to hear how you get on with the acupuncture, as I have also heard it has been used as a treatment for this. I've been getting a bit of vertigo sitting down lately, that's a new thing. How much does a acupuncture session cost?
I had a consultation with an NHS ENT consultant on Feb 1st, the one I had seen previously. The end result, we can't help you at the moment but as you are under Neurology, we are kicking the ball over to them to see if they can help. The ENT consultant did seem to agree with my assessment that I have some kind of spasm going on. I am having lots of tests with Neurology because I have lesions in my white matter, which can mean a few different things. I'm due to see a consultant in September, which is just too long, so I'm making an appointment to see a guy in Harley Street (who I have named in a previous post). I have BUPA but I think I'm going to have to pay, but I think I am beyond caring. The fact that this condition turns itself off every now and then gives me hope and I want my life back!
I also have Bupa and have been using it all along for consultations regarding this. I haven't had a problem at all, they've been quite happy to cover it. I saw an ENT Consultant in the beginning with a follow up appointment. Next I saw a Neurologist who referred me to a clinical scientist for vestibular tests which indicated I have 20% paralysis in the nerve of the troublesome ear as well as the myoclonus. This scientist has now referrred me back to an ENT Consultant but now armed with more information about what's going on inside my ear so hopefully I might get somewhere next week when I see him. If I'm no better after this, I'm also thinking of trying the Harley Street guy mentioned in previous posts so please let me know how you get on if you decide to see him.
I've read that this type of muscle spasm/vibration is is more common (although still rare) in people who can voluntarily move their inner ear muscles i.e. By forcefully closing your eyes etc. I can do this. In fact, I can make mine spasm just by squeezing/flexing my ears so I'm not sure if I'm unusual in this and maybe this, along with anxiety, is why I'm having this problem.
The cost of acupuncture where I'm going is £35 per session. I'll let you know how I get on.
Thanks for that info. And how fascinating, because I can manipulate my ears in the same way, since I was a kid! Yes, let me know the outcome of the acupuncture
I had surgery on the NHS 2 weeks ago. They cut one muscle. It hasn't worked. It has reduced the severity, but I'm a bit disappointed that it hasn't stopped it completely. Back in to see the surgeon in two weeks. The earwig drummer has returned. 'Boo!'
Earwigdrummer! Sorry to hear that, what muscle did they section? Looks like one may still be active then. Didn't know you could get this operation done on the NHS, that's food for thought. Let me know the outcome of your next consultation.
yes, almost the same as I have ,even down to the type of noise, went to expensive dentist who says its caused by night grinding and I paid £160 for a gun shield which is so painful on my teeth that I cant use it also suggested mjd or some other mix of letters but your belief sounds like the right one as using a shield makes the fuzziness and ear pain worse, also this last month my other ear has blocked with pain and irritation so now both ears are affected I describe it as having a hangover even down to the intolerance of noise and dull headache
Have read all the posts with interest. Thought at one stage is was just me but glad to know others (unfortunately) suffer as I do and it's not all in my head.
I too suffer from near constant clicking, machine-gun like sounds in both ears. Seen an ENT specialist (Heart of England NHS) - they could hear the clicking from my ears even though they were sitting a metre from me and had various specialist ear tests.
So far they have said I have bilateral middle ear myoclonus. Also can feel myself breathe through my left eustation tube - a weird sensation. My hearing is not affected but this near constant clicking is more than annoying - drives me round the bend at times. Occassionally I get ringing in my ears for a short while, or pain.
Booked in for a brain scan to make sure it's still there
Came across this post from Cambridge University Hospital which may be of interest.
Thanks for posting and also for the very interesting article.
It would seem those who suffer from this condition have variations in their symptoms. Did yours come on all of a sudden or was it gradual? At least you are at the point of diagnosis now. Are you on any medication for the MEM?
I can absolutely understand your frustration! Psychologically is like carrying a weight, it just dominates my head when its bad. As you have a diagnosis what is the next move for you? I too have had an MRI of my brain which revealed white matter lesions, I think this was due to having a low level of B12 in my body for a long, long time. I have a follow up appointment with Neurology in September. People would seem to get MEM for a variety of reasons.
I am considering surgery for MEM which from all the material I have read and watched would appear to be fairly low risk and in most cases an end to the noise and other symptoms. I think if I go for this, its going to be both muscles being cut just to be sure.
This forum has been a great comfort and also a source of information for me. Currently I'm trying magnesium oil and DMSO around my ear and cheek, I've read some things on this helping calm and reducing inflammation in muscles and nerves. Worth a go!
I started having these problems in March 2018 following a very bad bout of bronchitis which I was almost hospitalised for. Of course they just thought it was symptoms left over from that. But they persisted and repeated visits to the GP followed.
I am not currently on any medication although nasel drops were tried before being referred to a community consultant, then the local hospital and then onto the main hospital within the group in Birmingham.
Saw another ENT consultant last week - the third in total. Having had all sorts of hearing/ear/pressure/camera up the nose tests, the diagnosis to date is bilateral middle ear myoclonus. The consultant offered surgery but as he said there was a risk of facial paralysis, that is not an option. He also mentioned Botox (short term fix) which I don't fancy. Then suggested hypnosis, yoga/mediation (basically relaxation techniques) and also acupuncture.
Mentioned to my GP some medications, 5-HTP (Holland & Barrett) as a serotoin enabler which may possibly help - who knows, and the prescription medicaton, carbamazepin thought might help as it is used to relax the nerves as in epilepsy but suggested I talk to the consultant about it. Worth a google for yourself in any case.
Then on thinking about it, I wonder if in fact it is a jaw problem at the root of the issue. I had my jaw dislocated as a teen for impacted wisdom teeth removal, and then in my mid twenties went suddenly deaf in my left ear! Seems it was caused by grinding my teeth at night and a dental guard fixed the problem.
I am now wondering if all the coughing from the bronchitis put my jaw out of alignment.
In the past I have had Bowen Therapy (fantastic therapy) and they have had me opening and shutting my mouth wide while holding my jawbone by the ear. Makes me think my jaw was being realigned. So now I wonder whether this is the problem?
Going to also look into TMJ therapy. You never know, it might help. Not one for operations if I can avoid and prefer natural therapies to medication.
I'll look into the supplements you mention, magnesium is known as the body's relaxor so that makes sense. Might be worth you taking it in tablet form as your body may be deficient in it. Know nothing about DMSO so will google it.
I had some TMJ massage a few months back and it certainly relieved tension, it did make my face swollen for a few days though. I think what I've learnt through this whole sorry situation is that MEM can be caused by a combination of factors and it's worth attacking all of them in the hope that it shifts this thing. Thanks for reminding me about 5-HTP, I've got some in a drawer. I worked with a guy who raved about this supplement, so will revisit it.
Do let me know how you get on with the brain scan, etc and also if you get any improvement. This thread is helpful in lots of ways and the information exchange is very valuable. This condition can be pretty dreadful but it can disappear on its own and it does seem to respond to treatment, both of these outcomes keep me positive.
Hi Jimmittus01 and all, I’m new to this forum. I have been diagnosed with MEM in my left ear a couple of months back after developing tinnitus in July. I can’t lie on my left ear or itch/put my finger down it without triggering the fluttering. It also happens randomly for half a second to a second at a time. It has slightly improved over the past 5/6 months but it has never gone away for even a day. I read somewhere that most cases go away in about a year. Just wondering how everyone is getting on? If mine hasn’t gone away I think I’ll get the surgery. Saw an ENT at the NHS and he said he thought the surgery could make me more sensitive to noise? This condition is stressful and strange!! Hope you all are doing well??
Good to hear from you and sorry to hear you are dealing with this unpleasant condition. I'm pleased at the very least you've had a diagnosis which puts you a step closer to getting rid of this. Mine started coming on in 2017.
I recently had a period of 13 weeks without ANY symptoms. But, alas it came back just before Xmas which was a bit of a downer. I really did start to think I'd been healed. But the takeaway here is that this condition can go into remission. What I've learnt is that MEM has one foot in neurology and one in ENT.
This year I started taking high levels of vitamin B12 and I feel this has made a difference. B12 is essential for proper nerve function and I've been taking 5,000 MCG per day. I've since had more periods of silence. In my case I think there is the possibility that the trigeminal nerve or a cranial nerve is dysfunctional for whatever reason, I think this is maybe why symptoms ease for a short while after a hot shower?
I'm at the point where I want it gone in 2020 and I will do whatever necessary. Going to get an NHS referral because if it comes to surgery I can't afford it privately, I'd have to go to Poland or Hungary. I've read people have had successful experiences having had it. I guess there could be some sound sensitivity but I think I'll take that over the awful staccato bass I get!
Give the B12 thing a go, you've got nothing to lose. Your body with just get rid of any excess, try maybe 1,000mcg per day and see how you go?
Have been wonderful how you've been getting on. So frustating for you to have it gone for so long and for it then to come back. At least you know it can go and will probably do so again. It would be wonderful to know what triggers it to start and then to stop. I have considered all sorts of things from caffeine, stress to weird things like wifi and phases of the moon!! None of the above have proved right, needless to say.
Mine is now in the pattern of about 14 nights off and then 1 on , which is the best it's been since I flew to Barcelona last year (the flight definitely disturbed it). If it stayed like that I'd be ok but it's such an unpredictable little devil that I don't trust it not to change to something worse.
Are you going to take further action?..seems the only way to get rid of it permanently is surgery.
Please keep in touch and I hope this will soon be something in the past for you.
What a strange cycle you have with it. I too wish I knew of a definitive trigger. Very pleased you get days of quiet.
Since this started I've read as much as I can on this topic and the only conclusion I've come to is that a facial or head nerve must play a role, in my case anyhow. I did get a Jubilee Line train about a month ago and my ear hated it! Noise and pressure. I got home and it was troubling me. Went to bed and woke absolutely fine. But any such travel I will wear earplugs. God only knows when I'll get on a plane again?! I just won't do it
Yes, surgery seems like the full stop. Going back to the GP, try another referral. Two or three more medications to try. B12 has definitely led to some improvement. Might be worth considering?
Please keep in touch. Wishing you a good 2020. Fingers crossed we get this sorted!
Just wondering how you are and whether there has been any improvement?
Mine is following the same pattern...there seems to be no trigger as far as I can tell. I do think that the line between it happening and not happening is a very thin one but I'd love to know what tips ot over the edge.
I'm less obsessed with it than I used to be because I do get long breaks but it's always an underlying fear that it will get worse.
For that reason, I can't see myself flying again which is sad but good for the environment I guess!
I'm much the same as I ever am, after a near 3 month rest. More and more though I think this condition for me is related to neurology and the nerves in my head and perhaps my body generally. I do wonder what was the kick starter and indeed why it comes and goes? I am a very twitchy person, as I'm writing this my eyes are twitching. I get twitches every day.
The ear was being particularly bad these last weeks so I went into the GP and explained the situation. She agreed that this is possibly a nerve condition, my left cheek often looks swollen and some people who know me well say I sometimes lisp (which I am not aware of). I am always theorising, could it be the nerve in my cheek, my jaw or maybe a cranial nerve? She's written to the neurology department to hurry up my appointment, though I'm not overly hopeful. When I do go though I'm going to lay it all out and I'm going to demand investigation and medication. When I have this condition bad, it really is torture. I looked ill a few weeks ago.
Now something absolutely helped me the other day, no question and its something I stumbled on. I've read enormous amounts on this subject and the kind of medication that can possibly help. I have only been prescribed Amitriptyline and Betahistine dihydrochloride privately, neither of which did a bloody thing! Now I've read how tranquilisers can calm this condition, not something you can just go out and buy. Phenergan however is an old antihistamine, which helps with insomnia and is a mild sedative. The other day I took 50mg, went to bed and woke up to SILENCE. The effect lasted for 48 hours. That is all the proof I need. So I'm going to tell the neurologist that. Would it work for you? You can but try and when you get desperate you'll try just about anything, because I know that feeling. God knows when I'll get on a plane again, I just will not do it. Its all UK breaks for me, which is no bad thing.
I'm glad you get days of peace and quiet, concentrate on that. Have a think about the Phenergan, its fairly safe. You could try 25mg before bed. It makes you a bit thirsty the next morning and slightly docile.
Thanks for your reply to my message which didn't come to my inbox so have only just found it.
Very interested anout the Phenergan....it would be wonderful to find something which works on as 'as needed' way...a bit like paracetamol with a headache. I hope it continues to work for you and that you find a permanent solution.
It's been so helpful to find other people with this, especially you.
It's a long time since we've been in touch and I hope you're well and have coped ok during lockdown.
I'm pleased to say that I haven't had any ear issues for 6 months now. Delighted, of course, but not counting my chickens as it stopped for 2 months last summer but then came back. Also, I can't imagine myself flying again.
I hope you also have had some success with the problem.
Incidentally, for the past 6 months I have been taking an enzyme called DLPA...can't even remember why...must have read about it somewhere. I don't know if it has contributed to my improvement or not, but might be worth a try if you need to.
Peeweecat! Always a pleasure to hear from you. Yes, I'm doing well in Covid Land. Who would have thought things would be so upside down?!
It's great to hear you have been doing so well. Excellent news. It's interesting when the noise is taken away your brain remembers how life was before and you just click into normality. I too would be very cautious about getting on a plane. Personally I would want to be well into over a year without it, until I even considered it. If I have a day without this condition and the sun is shining, a sit in the garden with a cold beer is enough for me right now.
Mine was bad after a really good period of 3 months without it last year. I went back to Harley Street last month to discuss options. Again, he's a great doctor who actually listens. I was given a prescription for Gabapentin, which I had to really consider taking, simply because I've heard people having unpleasant side effects. I decided at this time against it.
As you know I've done a lot of homework on this condition and I've always tried to take control of getting treatment and help. I'd read about Carbamazepine as a treatment so I decided to give it go. I was able to acquire this legally. I've been using this for about a month and the results are very promising. I take 400mg a day. I get up in the morning, when the ear is playing up, take the medication and the full effect usually takes an hour. So far so good!
I like the sound of the DPLA, maybe this is the key for you? I'm going to try some.
Can you check in again soon? I always like to know how you are getting on and I always think it's good for other people who check out this forum who maybe are suffering, to see that situations get better.
I've been struggling with a very similar condition for the past year.
My left eardrum starts to flutter when I hear specific sounds, when I chew, and most of the time, for no reason. I also suffer from hearing loss and high pitched tinnitus in the same ear.
I went to countless medics, got both a CT and MRI, took countless pills, got treated for ETD multiple times, but nothing has helped at all. The CT and MRI are perfectly fine. However, I could not get any of those medics to diagnose me with MEM, it's like they just didn't even want to hear about it.
The fluttering/thumping/knocking/pounding happens 24/7. I have not had a single full hour during this year without this thing happening. I am seeing both a psychologist and a psychiatrist and am taking antidepressants and sleeping pills (otherwise I can't sleep). Also, I think anxiety also plays a major role.
I am planning to see a neurologist, as it's the only "MEM-related" medic I haven't seen.
Has anyone gotten any relief through medicine, BOTOX or surgery?
Sorry to hear you've been suffering from this maddening condition and haven't been getting relief so far. I can only really give you my take on what I've found useful, some of which I've grabbed from this forum.
I've tried a lot of things since this started and have travelled in a few directions to get this fixed. Anxiety certainly makes this worse and I explored if my jaw played a role in the ear problem. However I think mine is drawn from a neurological problem. For whatever reason I experienced a neurological change. My ears are sensitive anyway and I have good hearing. I have tried zinc, magnesium, bioflavonoids. What has made an impact for me is I think carbamazepine 400mg per day and DPLA as recommended by Peeweecat on the forum. I think there is something in it. I've noticed changes. I write this now without noise. I've been here before so I am still cautious. But days without noise are a blessing.
I've explored both Botox (haven't found a UK doctor who does this but I'm sure they are out there) and the surgery to have the muscles cut (at least 5 UK surgeons I'm aware of do this).
Hello Jimmitus, thank you for the reply, it really feels reassuring.
I have managed to get my psychiatrist to prescribe me some carbamazepine, but I was a bit too fearful and haven't tried it yet as I understood it is pretty strong.
Like you, I also suspect my problem is related to neurology.
As far as supplements and medicine go, I have tried countless, but I will try and name a few important ones: some sort of natural cortisone, "normal" cortisone, piracetam (only took one as it made me feel nauseous). There are many others, but I don't think names will give you any information as I am not from UK (hope this doesn't change anything). For sleep, I have been prescribed cinolazepam and trazodone. I have also been taking lorazepam, which did seem to help, but only regarding anxiety and not the problem itself.
I would also like to try out BOTOX and surgery, but neither of these is available here. Please do keep me posted regarding these two solutions, I might aswell travel to UK for this.
I have had dental braces for 3 years, and also wore bite guards, but seemingly not enough. I will get dental braces again as the bite problem is pretty obvious (whenever I chew slightly to the left, the jaw crackles pretty loud, although there's no pain).
Thank you again, I am really looking forward for your reply.
It sounds like you've tried similar supplements to me. I think with this condition you'll be willing to try just about anything. I agree Carbamazepine is strong and you may feel some side effects with it. I am a bit clumsy and off balance (I hope this is a size effect!) and I sometimes feel some short pulsing feelings in my feet. But out of everything I have tried so far, this would appear to make some difference. I take 400mg once a day and this has been for maybe 3 months. Weigh things up in your mind and see what works for you. I'm not a doctor, but speak with your psychiatrist. Maybe start on a lower dose? Do what feels right.I'm very interested in nootropics and I think that may be an area I will investigate further. When this condition started it was just awful, I went for days without sleep and lost weight. That was 2017, the improvements I have made are very encouraging. I had 3 months where the condition disappeared (this is without any medication) and as I write this...silence.
I think certain physical situations can either make this condition worse or make you more likely to suffer from it. I have been dealing with anxiety since I was 11, I've had a clicking jaw which has locked, when I swallow I hear clicking, I've suffered with eustachian tube dysfunction to a minor degree since childhood. But the major factor is neurology. In my case something is telling my ear muscles to move, does stress play a factor, probably. So, you can have a "perfect storm" of a situation.
Things that have helped me, that may help you: There is a guy on YouTube, Julian Cowan Hill who does great videos on managing tinnitus. There are some very practical techniques. Think about visualisation, if I can get a week of silence, its likely I can get a month and so on. When the humming got very bad, like Peeweecat on this forum suggested, I imagine I'm on a train or a plane, it helps manage it. Also the distraction of a fan in the room is helpful.
As to surgery, there is a doctor called Manohar Bance. I won't go into detail here, but a quick Google should bring up all the relevant information. This is a fixable condition.
I agree I would most certainly try anything to fix this issue, and I'm pretty sure you would too. So I must ask: are you planning on getting surgery?
I am glad you actually managed to get 1+ days of silence, let alone 3 months. It sounds incredible to me. I will most likely try out Carbamazepine, but I don't think I should be taking this for the rest of my life. This is why I am really taking BOTOX or even surgery into consideration.
I must also ask: have you been actually diagnosed with something specific? I imagine you've been prescribed Carbamazepine for a reason.
The idea of surgery is always in my mind and I quite agree, I wouldn't want to be taking Carbamazepine forever. After going round in a circle with doctors on the NHS, I decided to make a private appointment. I have read a lot about conditions of the ear since this whole awful scenario started and I seemed to fit the symptoms of middle ear myoclonus. Carbamazepine was the third prescribed medication and I think the most successful. Outside of that I take DLPA, B-12, Folic Acid and Biotin and Vitamin B-Compound Strong.
This DLPA, you may want to look at that. Recommended by Peeweecat on this forum, I think it is helping me. Its worth a gamble.
I'd like this condition to just disappear and not to have to rely on a medication, but if that isn't going to happen I'll have to have surgery. I think privately this will be out of my reach financially so that will require some thought.
Started with Carbamazepine today, pretty promising results, hope it's not just a coincidence. Also made an appointment at the so called "bite" doctor (gonna get dental braces again).
Let's keep in touch, maybe we can exchange helpful info.
Great news! Do let me know how you get on and what you are finding useful. The exchange of information on here can really make a difference to people who are suffering.
I know this post is a couple of months old but just wondering how you were getting on? My symptoms are almost identical to yours and I saw you mention the DLPA. Is there any particular brand or dosage you recommend?
I’m at my wits end with the constant humming and the thumping that seems to happen with low frequency sounds. After having an MRI and hearing test I’ve just been discharged from the ENT so no luck of getting an sort of prescription medication at this point so willing to try anything OTC that may help.
The brand of DLPA is Eco-Vits available on eBay. I take one tablet a day. I'm sorry to hear you struggling. It can be appalling, so you've got my total sympathy. I take a lot of other vits too, I can't recall the lot. If you want the full list let me know. B-12 is an essential one. If you are having trouble sleeping I'd recommend melatonin, again available online and as far as I can tell safe. That was a great help when I couldn't get to sleep.
With this condition you've got to be your own doctor somewhat, especially as you've been discharged. Read everything you possibly can on this condition and try everything which is within the bounds of what is legal and safe. If you have the resource to see a private doctor, then I'd do it. Many doctors within the NHS system don't know what to look for with this condition. Keep notes on what, if anything improves your symptoms. There is a lot of valuable information in this thread.
Many thanks for that! What dosage is it? Have you found it has helped you? I seem to only have one days respite every now and again from the humming before it returns and I’m about to hit the 4 month mark of it although I’ve had the thumping for around 2 years. I could actually cope with the thumping to be honest as it was random and never lasted long but it’s the continuous humming noise and vibrating sensation I’m struggling with. I sleep with a fan at night which drowns it out for the most part but obviously it’s getting colder now!
If you wouldn’t mind letting me know what other things you take or have tried I’d appreciate it! I take b12 and have injections of it 3 monthly.
So the dosage is 1000mg at one pill per day. These others I take as one per day; 5mg folic acid, vitamin B compound strong, high strength biotin, Magnesium Bisglycinate 100mg. I take 400mg Carbamazepine one per day on prescription. I take quite a lot as you can see, so sometimes it can be hard to determine what works. But this combination has improved the situation. Certainly Carbamazepine has made a real impact, but this effect was not instant. I can now go through 4 weeks without an episode, when it was constant for nearly 3 years! I think everyone has a slightly different body chemistry so what works for me might not work for someone else, but all these things are worth a try.
I've been exactly where you are. If I have a bad episode I'll still use a fan. I'd suggest you get some Ear Peace ear plugs. These are great and will help with the humming and vibration. This condition feeds on noise and anxiety.
That’s great thank you I really appreciate it. Who did you get to prescribe you the Carbamazepine? Your GP? I’m finding it impossible to get my GP to prescribe anything to me and like I said I’ve been discharged by the ENT with no offer of help.
That’s great to hear! How long do your episodes normally last now? Did you find anything made your humming worse? I’ve noticed whenever I’m in the car or use my hair dryer it seems to set it off even if I’m having a quiet day. It also always seems worse in the evenings for some reason.
Hi! My private doctor prescribed me Carbamazepine. This was after trying some other medication which didn't do anything. In most of the literature regarding this condition it would seem that Clonazepam does seem to help, but I can understand why doctors are reticent to prescribe it. There isn't a 100% conclusive test for this condition unless the doctor can see the eardrum move or can actually hear the noise (in some cases you can). No doctor has ever been able to hear my noise, though I reckon if you were to put a small microphone in the ear it would pick it up.
ENT did not help me, so you are not alone. Firstly they binned me off with "tinnitus therapy" and on a 2nd consultation they said because I was under neurology for another condition, that my problem sounded more neurological, so talk to neurology about it. Buck passing at its finest! The lesson here? You have to help yourself.
My episodes now will last 3 days or a week. I had a period last year where the condition stopped for 3 months then came back full force, that was depressing. I would say that being in a car, yes that will antagonise the ear as will the London Underground (Jubilee Line) especially. If I'm required to travel on the Underground I will wear earplugs (Ear Peace).
If you haven't already, read as much as you can on this condition. Think about some of the supplements that may help you, such as Magnesium Bisglycinate. Put some money aside to see a private doctor. Your first appointment will be expensive because they'll do hearing tests and so on. This is a horrible condition and I'm not cured but it is getting very much better. If you have a quiet day your winning, if you get a week then you are really winning!
Many thanks for that. It’s such a shame that we have to be an advocate for ourselves because doctors are so clueless when it comes to these sorts of things. I’ve woken up to both ears vibrating/thumping to any sort of noise and my whole head feels buzzy. I’ve not had the thumping this bad for a while where I’ve had to put ear plugs in. I could feel it brewing the past couple of days though.
I’ve been taking lemon bioflavonoids to see if that helps with the humming “tinnitus” that I’ve had for the past 3 months although I’m not convinced it is tinnitus as I can feel the sensation as well and can stop it if I plug my ears with my finger or when I talk it cuts in and out. I’ve also been taking magnesium citrate as I find it helps me sleep sometimes but I’ll look into the other form you’ve mentioned and the DLPA. This is what I’m struggling with the most as the thumping/sensitive hearing episodes would only happen every now and again so I could cope with that but this constant humming sound/sensations 24/7 is new and it’s terrifying and exhausting.
The cutting in and out when talking and suppression of it with a finger in the ear is exactly what I have. I'm no doctor but I'd say that you have middle ear myoclonus and that perhaps both muscles in your ear are dysfunctional.
At the very start of all of this I tried bioflavonoids and sadly I didn't notice any difference. I have tried just about everything. What did/has made a difference is promethazine hydrochloride, also known as Phenergan. This is an antihistamine with a mildly sedative quality. You should find this available online and perhaps behind the counter at a chemist. It has some relaxing effect on the muscles. It does make you drowsy so I'd take it before bed. But as with all medicines, proceed with caution. Also what kind of pillow do you have? I've got a pocket sprung one taking pressure off my neck and jaw.
I know exactly how you feel with all of this. It's depressing, frustrating and exhausting. But please know it will get better and you'll have days without this. I can't tell you when, but it will happen.
I have a pillow with a memory foam bit in the middle. But I sleep quite elevated as I thought this was helping initially but now I’m not sure.
I’ll look into the Phenergan thank you. To be honest if it helps me sleep I’ll be happy! How often are you able to take it? I’m also going to order the DLPA.
Can I ask when you have your breaks between episodes does the humming you have go away as well? It is it just the thumping that you get the breaks from? I notice that when I have a thumping episode I usually get a bit of relief from the humming for a day or so but then it slowly creeps back in again until the next thumping episode if that makes sense. I don’t get the thumping every single day, some days I’ll have it a bit, mostly first thing in the morning and then others I’ll have a full episode where I have to put ear plugs in as it’s so reactive to sounds.
Another thing I’ve noticed is the humming kicks in in silence/quiet situations whereas the thumping reacts to sound. So either way I have no break!
With the phenergan one thing I will say, you may well feel a bit "sedated" in the morning. This will last for about an hour, maybe a bit longer.
The humming and shall I say the movement feeling I get in the ear goes at the same time. The ear muscles will engage when I lie down with my left ear on the pillow, that's ok as long as I don't have any humming. It will be a drumming in short bursts. As I preface, I'm no expert but I do think you may have both the tonic tensor tympani and the stapedial muscles engaged. I had that at the very beginning and I think one muscle has stopped. I know this sounds a bit "new age" but I think this condition feeds on energy. So anxiety is energy, sound at a basic level is energy. This condition is constantly being fed. Its hard to get away from it, you hear the noise and the anxiety jumps up and keeps it going. Its a tough one! I'm in a good place lately but I take it a day at the time. Having the surgery is always an idea that is floating in my head. But I'd have to go back into the NHS system and that is going to be a longer road.
With humming in a quiet room, I get that. My take is the muscle is dysfunctional, so it is just reacting, you aren't consciously telling it to. Why? Its like getting a twitch in your eye when you are getting enough sleep and feeling fine. There is a guy on YouTube, Julian Cowan Hill. He has some great techniques for tinnitus generally. Worth your time looking, if you haven't already. The key is, if we can calm the body, we calm the muscle, the situation gets better. Hopefully.
So do you get the humming in a quiet room all the time or does it come and go with your other symptoms when you’re having a flare up?
Yes I believe before I may have just had one muscle dysfunction as I used to just get the thumping which usually lasted a couple hours then would go. I had that on and off probably a handful of times for about two years and then at the end of July this year it started happening every other day for about two weeks and then the humming started. It probably sounds stupid but I could cope with the thumping to an extent as it always ended but this humming sensation and sound is honestly awful. It consumes me completely as soon as I hear it. I’m better than I was and I try so hard to distract myself and keep myself busy to avoid it but it’s always there. I think since beginning of August I’ve had 5 or 6 days without it but it’s always come back, usually in the evenings. The evenings are always the worst with it.
I only get the humming when I'm having a flare up. Before I was having this constantly for nearly 3 years. I would come home from work to a quiet house and then within 30 mins it would start. I could feel it at first, a slight movement from inside my ear, then a subtle noise. Then this noise would grow louder and louder. The zenith of this was December 2017 when I flew to Germany for New Year. A big mistake! I stayed at a friends house and my head was just consumed with the noise. I couldn't sleep. It was appalling. I haven't been on a plane since and my last trip was by train in December 2018 to the Netherlands. Honestly I don't know when I will fly again.
The humming sound is consuming because it fills up your head. You can't really run away from it. It has made me very depressed. But what I do know and I'm proof, is that it will and can turn off.
I don't want to get too personal but did you have a particularly stressful period in your life, illness or injury? I think mine was kickstarted by being low in certain compounds in my body, B12, folates. I'm a vegetarian and I've been so since about the age of 13. Always been fit, but I think there was a dip in taking supplements for about 8 months. I do not think it was coincidence.
Yes that’s what usually happens with my humming too. As soon as I walk into my house it’s there. Yes I agree it completely fills my head and I can feel and hear it too which I hate more than anything.
I 100% believe the cause of mine was a complication from a spinal anaesthetic when I had my son. I developed a spinal headache and within 24 hours my ear problems started. This stopped within about 2 weeks and then like I said I’ve had probably a handful of flare ups in the time between then and July this year. I have no clue what caused this particular flare up though as I was actually relatively relaxed despite the lock down. I was enjoying time with my family, my husband and I (very luckily) were fully paid throughout. It really did come out of the blue. I do have b12 injections every 3 months and I had to miss one due to lockdown so potentially it could be linked to that? Although I’ve had 2 since then.
It will calm down, I just can't say when. Do you know how many units of b12 they give you in your injection? When mine came on I had some stress but not major, I've had far worse. I allowed myself to go down that rabbit hole at first. I don't want to slag GP's and the health system but my experience has not been great. I trust myself and my instincts, they're usually right. If you think there is a link to that anaesthesia then I reckon you've a good chance of being right. Have you had any blood tests recently? I know with the financial pressure of having a family plus this Covid, but if you are able to I'd engage a private doctor in the new year. For me it was extremely helpful to have someone listen to me and not be rushed.
No I’m not sure how much my injection is to be honest I’ve never thought to ask - I’ll try to remember to next time. Yes I’ve had blood tests and all normal apparently. I agree I feel really let down by the GPs and ENT I have seen. I’ll never understand how they can just expect us to “deal with it” or think they know our bodies more than we do. Don’t get me wrong most doctors etc are amazing but we know when something isn’t right don’t we.
Yes I may look into a private GP in the new year - not something I can do right now due to the costs involved with moving house!
The humming is kicking back in again after a couple days break. Also feel like it’s going into my other ear now too whereas before the humming was only in my left just feeling really defeated as the relief is never long lasting
I’ve been taking the DLPA and it seems to have made the vibration/humming worse?? This is the worst week I’ve had with it in a long time. Not sure if I should continue using it or not? I saw you mentioned other medication you had been prescribed to rule out Hydrops, what was that? Hydrops has come across my mind too but I think MEM is more consistent with my symptoms but like you I want to rule things out.
I'm really sorry to hear you are struggling at the moment. If the situation has gotten worse and your gut is telling you that the DLPA may have caused it, I'd just stop taking it. You can always resume at another time. The medication I took re-Hydrops was betahistine which improves blood circulation within the ear. Sadly this didn't do anything for me. If you did have hydrops then a special diet can really help, there is a lot of information about that online. I think MEM is extra tough because the muscles are so reactive, to both sound and anxiety. If you have stress in your jaw, that too.
I only get the humming when I'm having a flare up. Before I was having this constantly for nearly 3 years. I would come home from work to a quiet house and then within 30 mins it would start. I could feel it at first, a slight movement from inside my ear, then a subtle noise. Then this noise would grow louder and louder. The zenith of this was December 2017 when I flew to Germany for New Year. A big mistake! I stayed at a friends house and my head was just consumed with the noise. I couldn't sleep. It was appalling. I haven't been on a plane since and my last trip was by train in December 2018 to the Netherlands. Honestly I don't know when I will fly again.
The humming sound is consuming because it fills up your head. You can't really run away from it. It has made me very depressed. But what I do know and I'm proof, is that it will and can turn off.
I don't want to get too personal but did you have a particularly stressful period in your life, illness or injury? I think mine was kickstarted by being low in certain compounds in my body, B12, folates. I'm a vegetarian and I've been so since about the age of 13. Always been fit, but I think there was a dip in taking supplements for about 8 months. I do not think it was coincidence.
I'm so glad I came across this thread, as after reading it, I now know I have MEM with 100% certainty and the relief of finally being understood will surely have a positive impact already. I read this thread last night, and before 09:00 this morning I had made an appointment with Dr. Brookes at Harley Street. I'm seeing him tomorrow at 12:00.
My symptoms started in April, I did not even think it could be tinnitus first, as indeed, the buzzing/vibrating sensations makes you feel like something is spasming inside your ear - and apparently it is! I unfortunately also developed soft ringing in the right ear which has been constant for 2 weeks now, whereas the MEM comes and goes, which seems very common. The first episode lasted 10 days - I was terrified and given sleeping pills. Then it went away for 2 weeks and I thought everything was fine - then it came back. And now, just like many people in this thread, it creeps up in the evenings and stays for a 2-3 days. The only way I can sleep with this rumbling sound and sensation of movement is with brown noise in my airpods.
I don't think the ringing tinnitus on my right ear will go away soon, but it's encouraging to know the MEM can, eventually. Initially, no one in the hospital could help, GP mentioned ear infection and I got eardrops for that (I did have inflammation and some bleeding in that left ear), and my first ENT consultant last month arranged a hearing test and MRI scan. They could see slight weakness in the affected ear in terms of reflex. The ear should show nice curves of muscle contractions, but my left ear was just flat. I had Bell's Palsy 10y ago on the left side of my face (a temporary facial paralysis), so MEM seems like an unfortunate outcome of some weakened face nerves. I also relate very much to being overly sensitive to loud noises, I'm always the person who's body trembles when I hear sirens, crying babies, loud laughing, helicopters. I also always used to sleep with ear plugs no matter what, that's how much I love silence. It has been quite distressing to not be able to do that anymore.
If anyone is still reading this thread, I would love to know how you are all coping? Are you suffering/less more? Have any medications worked for you? I went and bought 5-HTP today to see if that might help. I'm also considering both botox and surgery and was wondering if anyone knows more about any potential risks for that? What do you think "last resort" would mean for a Dr to proceed with that, as having this condition, even for a few days, is quite maddening, so why would they wait?
Good to hear from you but sorry to hear you are suffering from this unpleasant condition.
I think the approach you've taken is the right one because this is a mysterious condition in some ways and many doctors just don't know what to look for nor really grasp what you are trying to tell them. I've found Dr.Brookes to be a gentleman, so I'm sure you will have a similar experience.
My symptoms went away for 3 months in 2019 and for 4 months in 2020. What the trigger is for it to come back I have no idea. I think if this muscle is dysfunctional it is more likely to stay that way, that is to say there is always a chance that it might come back. I have tried a lot of supplements (I still am currently) 5-HTP, various forms of Magnesium, Phenibut, CBD, my list is quite long haha. The medication that has worked to stop the problem mostly is Promethazine. This makes me very drowsy the next day and I only use it as a last resort. Also Carbamazepine has yielded results.
I'm in the process of getting back into the NHS system to see a specialist, with a view to having the surgery on my ear. The condition has eaten into 4 years of my life and I really don't want to do another 4. When I have a good period, there is the fear that it will turn back on again. I savour a good day and I'm fortunate in that I do get them. In terms of surgery, from the data I've seen the procedure seems largely successful. There is however a risk in everything and any operation requires serious consideration.
You may find your symptoms disappear with minimal intervention, as for a lot of people it does. But the good thing (in this bad situation) is that this is a treatable condition.
Please let me know how you get on
All the best
Jimmittus
Hi Jimmitus01,
I promised to come back to you. I’m still due some last hearing tests (ABR and EcoG) but the Dr was not convinced I had MEM because 1) it should be objective, ie others can hear it 2) the sound should be rather clicking. But from what I read on this thread it is definitely now just a clicking sound. We ran a few hearing tests and although I had been assured my hearing was “normal” by a previous consultant, Brookes did not think so and he could see clear signs of my ears having low and high frequency sensitivity, ie the hairs don’t pick up on these certain sounds from the extreme spectrums. This made me of course even more worried - am I now going deaf? He’s indeed a gentleman and wouldn’t be the person to tell it as it is so bluntly but we need to proceed with 2 lasts tests for him to diagnose me. Feeling worse than when I arrived there.
He prescribed clonazepam to calm my nerves, a cousin to Valium.
I thought I would join this thread to offer my own experience of MEM. I was diagnosed last July. My left ear started to flutter. Firstly it was just for a few seconds then I had an episode which lasted hours. This is where my journey started. After the long episode my ear started to make a knocking, thumping sound on and off all day and night. Then the random fluttering episodes started. They could last seconds,minutes or hours at random. After a few months the clicking started and that was 24/ 7 small tics to clicks. Audible by my husband when he put his ear to mine. I was prescribed carbamazepine with no success. Diazepam helped to calm.the anxiety associated with it. I finally paid privately to see a consultant and I had ear surgery in June this year. Both my stapedius and tympani muscles were sectioned using a laser. I also had to have a canaloplasty to widen the ear canal for access to the ear as it was narrow. For 8 weeks I was symptom free. Sadly my symptoms have returned. Clicking and thumping. I am due back for a follow up next month. I do not regret the surgery however, I am disappointed it has not been a long term fix. Stress in my own experience plays a huge factor rather than it being triggered by noise. Sadly I suffered mild hearing loss after surgery which I am hoping is conductive and returns. Any questions please ask.
I have stumbled across this site tonight after spending hours looking up my symptoms. I am in the very early stages on what I believe to be MEM. I have had ear issues for 6 weeks now starting with various symptoms and being diagnosed with etd which didn’t clear up so I’ve paid to see a private consultant who at first said yes it was classic etd. I ended up rushing back to him this week after experiencing a noise that made me think my head was about to explode. He diagnosed tinnitus and I am currently on a strong course of steroids which have helped with the ringing but I have this vibrating sensation in my left ear which I described as being like a twitchy eye but on the other side of my eardrum. I just wanted to thank you for your knowledge and positive vibes. I am being referred to the nhs as my private consultant works there so I want to save money where I can. I have had probably the most stressful 2 months of my life and this seems to be a huge factor. I’ve recently had full blood tests so hoping they will show up any issues as well. Anyway apologies for rambling but you’ve given me hope that I might one day get a little bit of relief even if only for a few days. One question, I have read about the operation and it seems positive when both muscles are cut, so why do you think medically it is a last resort?
Ringmybell! Sorry to hear you've been suffering from this appalling condition, but it sounds like you are approaching the situation in a proactive way. I'm glad you've found the information here useful and supportive. I have no doubt you will get days of quiet and you may even find that your situation resolves itself without further intervention. I know the stress that this condition can give you, when I first had it I looked quite ill. Good you are having blood tests also. On the sectioning of the ear muscles I think it is deemed a last resort because it is invasive. Its a simple operation but there are risks, potential damage to a facial nerve, potential taste problems with the tongue (though this often resolves itself fairly quickly so I have read), so I can understand so called conservative measures being used first. I myself have been put forward on the NHS for this surgery. I have suffered from this for 5 years next February and that is just too long. I had a good period in 2019 for 3 months when my symptoms just disappeared. I get days now where I'll be normal and it is such a relief.
Thank you so much for taking the time to reply - I am so determined to start looking after myself more now I fully understand the debilitating affects stress can have on my health. I am hopeful that maybe this may resolve itself as it is still early days compared to many that have written and like you I figure if it can stop for a while then it must be curable. I wish you the best of luck with your operation and please do keep me updated as I am very interested in your story. Do you know when your operation is likely to be? I hope it is soon for you. Thank you for helping me find my positive mindset all the best
Sometime next year, I might have to wait a while but I'm on the list. Please keep me informed on your progress. As you see there is a lot of knowledge on this page, there may be something here which could be helpful to you. And my opinion is if something is safe and does not cost you too much, it's worth a go!The one good thing to come out of all this unpleasant condition is a greater understanding of the body and how it works. I thought I was taking care of myself, but probably wasn't.
Hi there, I wondered how you and everyone are doing now with this monstrosity?! I really hope you’re all recovered or in remission at least. I have had this vibrating sound and feeling in my mainly left ear but now right also, for about 15 years… it used to come and go, mainly after a car ride, but now it’s pretty much 24/7. It is at times unbearable and my saviour at night is a fan, some frequencies counteract it, strangely, as well as shaking my head side to side and plugging it. I’ve never officially been diagnosed with MEM, somebody on a group suggested it wasn’t this and in fact a type of tinnitus (which would be worse as at least with MEM there is a last resort, as in surgery).
hello. I know this post is old but i stumbled upon it today because i too have middle ear myclonus and have no idea what my next step could be to getting it taken care of for good. It really wreaks havoc on life as you all know and would love to hear what has worked for you all… botox? Surgery? Acupuncture? I tried muscle relaxers with no luck so im desperate to get my happy self back that doesn’t worry about the next attack 😭
Sorry to hear you have been suffering Livehappy22, this is a really unpleasant condition. I am currently awaiting surgery, so getting relief has been a long road. I can only speak from my own experience but both Carbamazepine and Promethazine Hydrochloride have given me relief. Promethazine Hydrochloride I discovered by happy accident when my condition started, I couldn't sleep and was recommended the antihistamine Phenergan to help getting to sleep. Well it did, but it also made the noise in my ear stop for a short while. The downside to this medication is it made me feel a bit "stoned" the next morning and I knew this couldn't be a long term option.
Carbamazepine has been more long term and beneficial for me. A dose of 400mg will make my ear muscle stop its jerking and noise. Normally takes about 2-3hrs to take full effect.
Ultimately though I have elected to have surgical intervention, I don't think my problem will just suddenly fix itself. I sometimes get a week where my ear will be fine, to then wake up and find its back. This used to make me very depressed but now much further along, I know this is inevitable but I'll have a quiet period again soon. The good news is in most cases, this is an ear problem that can be resolved. And some people find their MEM just resolves itself (oh you lucky people!)
I'd like to start by thanking Jimmittus01 for this thread. It's been a real help.
My Background
Over the past couple of years I noticed that my ear would flutter when I heard certain sounds (specifically, certain notes on the piano when listening to soundtracks). It wasn't painful, but it certainly caused me some discomfort, and I would avoid listening to certain tracks as a result. It's worth noting that the fluttering stopped when the sound stopped.
Earlier this year the fluttering started (seemingly) all on it's own. However, I would describe it more like thumping today. It was intermittent at first, lasting upwards of around 4 days. However, my current episode has been going on for over 8 days now, with the last 3 days being non-stop. It currently takes around 30 minutes for it to get started after I wake up.
I have a very low tolerance for conditions like this. Therefore, seeking a diagnosis quickly became a priority for me. Fortunately I discovered this thread and Professor Manohar Bance. As a result, I was diagnosed with Middle Ear Myoclonus (MEM) a few months ago. Unfortunately the long time-base tympanometry test didn't reveal anything because I wasn't having an episode at that time, and trying to trigger it with sound didn't work as the test equipment effectively plugs the ear and plays a continuous tone. Therefore, the diagnosis was based on ruling out other causes.
Theories
High stress events, underlying (untreated) anxiety, diet / nutrient deficiencies, and cabin fever (home working for 3 years now) are my favoured theories. There seems to be some overlap with others on this thread.
Management
I have found that pressing my finger into the ear or hard on the tragus does give me some relief, at the cost of having a plugged ear. I haven't found an ear plug capable of this so far (tried standard foam and EarPeace as suggested), but if I do find one I'll report back. At least that would allow me to concentrate whilst working!
Otherwise, getting outside into louder environments really does help me. It doesn't stop it, but not hearing it for a sustained period of time without having to hold your finger to your ear does make you feel normal again.
What Am I Going To Do?
I'm starting a new job soon (more stress and anxiety), so hopefully that will get me out the house a lot more. Hopefully I'll be able to combine this with more physical exercise. I'll also try to improve my diet a bit while I'm at it. All the basic stuff.
With regards to supplements, I think I will probably cut everything out for a while and see what happens. I currently take 1000mg of vitamin C and 4000iu of vitamin D daily. If it makes no difference then I will reintroduce them over time. I have no strong suspicions on this (if anything, I'm probably deficient in both), but I just want to see what natural looks like. Otherwise, at some point I will try DLPA and magnesium (as discussed here and in some of my reading). Standard disclaimer: I'm not suggesting anybody else do this - speak to a doctor before trying this stuff.
Surgery will be the next (and hopefully final) step if the above doesn't work. That carries it's own concerns, but if it gets to that point I'll have no other option.
I'm very glad you've found this thread helpful. And it seems to me you are approaching this condition with an analytical mindset which I think will be useful.
A lot of helping this condition is trying stuff and eliminating what works and what does not. From all of the supplements and medications I have tried, Carbamazepine would seem to me to have been the most successful. So at this point down the line I think my potential cause is a nerve/or nerves in the left side of my face. This may in part explain why my condition went for nearly 4 months in 2019 and then suddenly started again. And how it stops and starts generally. I am a perfect storm of potential triggers. Sound sensitive, TMJ, GERD and a person who gets badly effected by stress. Plus it would seem to me that in some individuals that their nerves and muscles seem more shall we say "excitable". I have really tried to address all of these issues and have been successful I think to a point.
Re- ear plugs you may benefit from a custom made silicon one which would cover the ear canal. I have been thinking about getting one myself. May I ask do you get relief from being in a loud environment and the following day or so your ear being normal?
I did undergo surgery on the affected ear, which I quickly recovered from with no negative side effects to my hearing or sense of taste. The whole process of admission and surgical care was first class. For about 8-11 hours my ear was absolutely fine. It was when I got back to where I was staying that it started to spring to life, as it always seemingly does. I think the cessation of my problem for those hours was because I had been and was recovering from sedation. Just a gut feeling. I was bitterly disappointed. But I'm stubborn or bloody minded and I know that if Carbmazepine has previously turned it off, then medication is the avenue I will take going forward. I had wanted to avoid long term medication, but if that is how it has to be so be it.
Please update on how you are getting on and what supplements or medication are beneficial to you. All this information helps!
I'm really sorry to hear that the surgery wasn't successful. I can't imagine what that must have been like. I'm glad that Carbamazepine is working for you though. Anything that gives you some respite is very much welcome.
I've been thinking about getting custom made ear plugs for years (I go to lots of concerts where I wear generic acoustic stuff), but must admit it didn't occur to me that they might help with this condition. Thanks for the suggestion!
Being in louder environments certainly helps as it masks the thumping. This reduces my anxiety and allows me to concentrate on other things. It's difficult to say whether it helps the next day. I went to a concert last night and whilst I've had a few hours of silence this morning, the thumping has returned whilst typing this message. That said, the last few days have been markedly better than the day when I posted my first message and I've been to a few loud events. So yes, I think it does give me some relief, but it isn't a panacea. How about yourself?
You do seem to have the kitchen sink of triggers there. I'm glad that addressing some of those helped too.
Will post updates as the situation develops. I'm hoping once I'm in my new job everything will just calm down a bit and it goes of it's own accord. Wishful thinking I think.
Dear all. Newcomer to this site, latecomer to this thread. I have suffered with middle ear myoclonus since around May/June 2001 - 22 years and counting (now nearly 50). It basically came on for no reason. The typical symptom is a deep thumping/clicking sound around 10-15 times per minute. This can last only a few minutes (praise be) or hours on end. For example, I suffered very badly with it that first year, my longest attack without relief lasted around 40 hours.
The ENT specialists I was referred to around that time didn't know much about MEM and were not very helpful. It is always present in my life, but can have long dormant periods. Then I seem to have terrible flare ups every so often when it's really bad. For example I had a flare up in 2015, which is when I first saw a specialist mentioned earlier in this thread on Harley Street. He was the first person I'd seen who seemed to really understand how people suffer with this condition. He put a grommet in my right ear to aid Eustachian Tube Dysfunction and that seemed to provide relief. I was also diagnosed with bilateral endolymphatic cochlear hydrops - an issue with fluid pressure in the ears, that makes them pop and flutter in particular around certain sounds - such as water flowing or water hitting water - odd! For that I was prescribed Serc-16 medication.
However since August this year after a long dormant period I had another of my very bad flare ups that seem to happen every few years. Sometimes the MEM comes on with no warning at all, but with this particular flare up burping or yawning is the main cause - an extravagant yawn or food repeating on me triggers it off. So I am trying to stifle every yawn and burp - as you can imagine, a wearing and tiring process, and not always possible. So one is living constantly on edge.
I did return to the same expert to try a grommet in the left ear, but this time it went badly wrong and in addition to not making any impact on the MEM (which is getting worse), it also affected the hearing in my left ear and has given me loud ringing tinnitus. So I'm in hell basically. I have been prescribed Clonazepam privately as a tinnitus suppressant which has helped a bit with sleep - I find sleep is utterly impossible with MEM, unless you have a full strength sleeping pill like zopiclone or temazepam - my old GP used to prescribe these to me but he retired in 2017 and newer, younger GPs are loathe to hand these out anymore. You simply can't develop a relationship with a GP when they change so often and you can never get consistent appointments with the same one. However, the longer I have been on Clonazepam the earlier in the night I seem to wake up - and after an hour's sleep, you forget about yawning or burping and that can set it off! As is happening tonight.
I have considered the muscle sectioning surgery which I know some specialists can offer as a last resort, but after my current procedure going wrong that has affected my confidence. Also, I have seen another specialist and when I mentioned the muscle sectioning operation offered by some surgeons, he was very sceptical and said it doesn't necessarily work - people can somehow still experience the deep clicking sounds despite the muscles having been cut?! So unfortunately there really is a lot of mystery around this condition - which only affects 1.5% of all new tinnitus sufferers. So we really are a rare breed.
I'd be interested to know if anyone on this thread has achieved any kind of permanent solution or has any further advice/recommendations.
That all sounds awful. Have you had any tests for Palatal Myclonus ( I hope I've spelt that correctly). Wherein clicking is induced my a spasm of the upper palate? Have you ever been prescribed something like Gabapentin or Carbamazepine?
Has anyone ever assessed whether a cranial nerve is in spasm? If not it could be worthwhile looking at those avenues. I'm sure you've thought of this before but when you have flare ups are there any triggers you could be a causal factor? Diet, environment ?
Jimmittus - many thanks for your reply. I haven't had any tests for palatal myoclonus nor any assessment in relation to a/the cranial nerve. I am getting a second opinion from a non-Harley Street ENT specialist on 18 October so I will relay these questions to him - many thanks for raising these possibilities.
As for the medications you mention, I have not been tried on either of those, but am currently on Clonazepam 1mg for a month. Thus far it does help to slightly suppress the loud ringing tinnitus caused by the incompetently inserted grommet, but it doesn't prevent attacks of middle ear myoclonus - though who knows, maybe the current attacks would be even worse without it?
As for diet and environment, basically my diet and environment are extremely consistent, so that's unlikely to be a factor. One outlandish theory could be that in May 2000 I had my first ever general anaesthetic operation, and the MEM started just under a year later. This year I had another operation in July, and a month later, MEM returned for the first time with real severity since 2015. Could be coincidence as I also had major surgery in 2020 with no ill effects on the ears.
All the best to you and other MEM sufferers on here.
I’ve been reading through the responses, and it’s been interesting to see the variations in how this issue affects different people.
Mine started when I had a hemifacial spasm on my cheek sometime 2 years ago, which made that part of my cheek tight for some time and also made the muscles in that side of my ear more sensitive, and that’s when I’ve had a few episodes of MEM.
I guess I’m one of the less unfortunate ones since mine only shows up occasionally, but it’s still incredibly stressful when it happens (I just had an episode today for several minutes).
I was hoping it wouldn’t happen again since I hadn’t had it for about a year, but unfortunately it did.
How are you doing with yours so far, Jimmittus01? How long do you have now before it comes back again?
My question is, do I still try the medication (like vitamin B12 or carbamazepine) if mine only happens sometimes? Or should I just leave it alone and hope it doesn’t come back?
Sorry to hear you've had this condition but good to note you are having brief episodes though I know how unpleasant that is.
I've had this condition for 7 years this February. And despite surgery to sever both the stapedius and tensor muscles I still have it. Episodes can be two to four weeks with 3 days remission. I've just had two weeks of being totally normal without a problem, to having it come back full force. Carbamazepine is a roulette of success for me, today it's working. Much like you I believe my problem is the left side of my face, the trigeminal nerve is my bet. This is why it comes and goes, reacts to loud noise and also tension in my face. Being sedated has worked and Carbamazepine works (sort of). I've had ENT speculate my problem comes from my upper palate, I don't see that at all. How truly relaxed are you? How fully stressed are you? These questions are a factor.
Approach the medication based on how you feel. B12 is safe and water soluble, so you'll pee out what your body doesn't need. With Carbamazepine you may just be fine with a low dose. I'm on 400mg which works for me, less than this may be the sweet spot for you. Get advice of course. You can take a wait and see approach which is sensible. You'll know when you've had enough of it as I did.
I'd also recommend an evaluation of your blood and generally how your body works. I've spent a lot of time picking my situation apart. Why can I be fine and then not? What's turning the problem on and off? To this end I'm taking an Epigenetics test to drill down into how my body functions.
Having this condition has given me a fresh and proactive view of my health, that's one positive. You've got to doctor yourself a bit. It shouldn't be this way but that's just how it is.
Thank you so much for replying, I know this is an old thread but it’s so nice that you still answer questions from us.
I’m really sorry your surgery didn’t work. I wish there could be a definitive cure for this condition, but there doesn’t seem to be. All we can do is find what works for us individually and manage.
I’m on antidepressants and anti-anxiety medication since I have severe anxiety, which probably doesn’t help when MEM is apparently influenced by anxiety. But it’s hard not to get anxious when worrying about the next possible attack.
I might try the B12 and see how that helps. I’m a bit hesitant on the carbamazepine, it might be too much at the moment.
I’m mostly curious on if mine has to do with nerve issues, since it started from having facial spasms? Is yours related to the nerves, or the other results from your previous MRIs?
Hopefully you get the relief you need from it, and maybe it could even go away.
I think anxiety plays a role in this condition without question. If you are tense, anxious and are prone to MEM, then you may be more likely to suffer with it. I think more and more that my nerves are hyper excitable and this is compounded by stress or stressful situations. If I have a good ear day, part of me is worrying how long this is going to last, which causes me to tense up, raising the possibility of an ear attack.
I also think at the very beginning of me getting this condition I thought I was terrifically healthy, but maybe I wasn't. You don't get deep white matter lesions on your brain for no reason, so something must have been occurring. But on balance, the nerves in the left hand side of my face are just not right. I think everyone who suffers from this, for whatever reason has to be a bit of a detective and reverse engineer how we got here. It's a lot of fumbling in the dark.
B12 shouldn't do you any harm but do the reading before you take it. My opinion is it's the most fundamental vitamin, maybe the most important for your body. I take a very high dose, because that works for me.
If you haven't spoken to your doctor, do mention that you are having MEM attacks. Get that ball rolling. And say you've spoken with people who have the same symptoms. A lot of doctors don't know about this condition because it's simply not in their immediate knowledge.
I hope your MEM decides to stop and this does happen with paroxysmal disorders. The fact you get remission is a good sign. Keep a log of when you have attacks and when you don't, potential triggers, etc.
Thanks Jimmittus01, your responses have been reassuring. I do think my anxiety has been making my recent episodes more frequent recently.
I wish anxiety didn’t play such a big role in this issue, because it’s creating a feedback loop that’s hard to escape.
I do wonder if my poor health is also a contributing factor. I’ve never really been all that healthy, and worrying about this isn’t helping.
I have spoken to an ENT about this, who agreed that it might be MEM, but she couldn’t do anything about it. It sucks that most professionals can’t help us with this problem.
Again, thanks. I hope our MEM ends eventually and we can have a normal life again.
Finding this forum has really helped me today on a normal Tuesday in miserable January. I first discovered this thumping in my ear early December 2021 - sounds like a heartbeat and if I scratch my head it triggers it until I stop scratching. After a few days it went away and it didn't come back until December 2023! It happens to me at night which is always the worst time because you feel so isolated and alone. The thumping doesn't last for long but i'm terrified that it's getting worse each time i have an episode.
I'm supposed to be flying to Croatia in May and I'm worried that my problem will be exacerbated judging by how others have been affected on flights. I don't seek any treatment at the moment but i am worried that this will get progressively worse until the point where i will need help.
I guess you can say that i have anxiety about the situation which really doesn't help. always on the lookout for it after recovering from an episode. I am keen to know about how others are affected by MEM - i have read in places that it sounds like a clicking or buzzing noise depending on what muscle is twitching inside the middle ear. There will be a cure one day i am absolutely certain.
Sorry you are suffering from this unpleasant condition, but I'm glad you've found this forum. There is a lot of information here, which I hope you will find useful.
Where are you scratching on your head to create the reaction of noise? Is the sound rapid and does it increase or decrease?
Do you sleep on your back or on your side? Have you had any weird sensations in your face? How stressed are you?
These are questions you should think over. I'm not a doctor but from what you are saying there is the possibility that it could be an overactive nerve in your face. Or maybe a compressed blood vessel pressing on a nerve. Could even be muscles getting tight as a reaction to stress. I know the anxiety of being fine and having the worry that it will come back. But always keep in mind that the noise will go again, it's not permanent. I do think the brain and it's stress response plays a role, could some people just have more reactive muscles via brain wiring?
With your flight I would wear decent ear protection. Be as relaxed as possible. If your ears get blocked don't unpop them via the valsalva method, just yawn. Or steam when you get back to your hotel.
Keep in touch on here. If you find it goes away for a long period, check in and let us know. People need to know the noise does go away. Equally if you find something that helps make a note of it.
I just wanted to ask some questions as I am currently going through this ! It’s only been a couple of weeks but it’s driving me mad! Does none else here have TMJ and clench and grind their teeth ? My gut is telling me this is related ! I am currently trying a nose steroid as a walk in doctor has suggested it might be a blocked eustachian tube after a cold but have little hope . I am currently taking magnesium and turmeric for inflammation and muscle spasms but it doesn’t seem to help . I would love to see a list of everyone trial and errors because maybe we could togeather find a common link !
I've had some success in relieving inner ear flutter after 6 months (4-5 thumps per minute, 12 hour episodes, 4 episodes week). I think it was a bit of a "can't see the wood for the trees" thing.
I noticed that all the triggers that people describe on this forum are also known triggers for migraine. Migraines can be "silent". This means you have symptoms such as sensitivity to light, to sound, to smell, personality changes, nausea etc but WITHOUT pain. Indeed, ear fullness, ear pain, and ear flutter are all symptoms of migraine (that can occur with or without associated head pain).
It was interesting that people on the forum described improved MEM symptoms when making lifestyle changes that people with migraine would likewise be advised to (lower stress, magnesium, avoid caffeine and alcohol). Indeed, some forum posts mentioned neck massage as providing relief which again overlaps with migraine.
Anyway, I found that Sumatriptan 50mg (a migraine medication acquired via GP) can stop the fluttering episodes dead in their tracks. It doesn't prevent them from starting, and I need to be wary of triggers/lifestyle factors, but it does stop the thumping within 30 minutes of taking the medication. It also helps knowing I have a medication that can bring almost immediate relief.
I can't say this will apply to everyone and I don't want to bring false hope but this is a horrible condition and if one person benefits then it's worth it.
AndyPete, this is very interesting and something to consider. I think my MEM is linked to my trigeminal nerve. Can be two weeks free and suddenly I'll wake up with it. And I can feel it coming on in the day and sometimes suddenly stop. Curious parallels with migraine.Thanks for putting this across, the more people who leave this kind of information may provide a bit of help to someone. Different things work for different people. My success has been with Carbamazepine (Tegretol) though annoyingly it's efficacy begins to wane, I have to taper off and then go back on it.
To know there is a medication at hand that helps alleviates worry.
I got Middle Ear Myoclonus by being poisoned by Tobramycin eye drops. I had it for 11 months and it was absolutely driving me crazy. I went to a Functional Medicine Doctor who gave me sublingual Quicksilver brand Liposomal Glutathione, four pumps twice a day. It was gone in four days and stayed gone for 3 weeks. A MIRACLE! I did have one vodka martini last night and it came back lightly for about two hours. (I had suspected alcohol made it worse. I’ll prob never drink again.) Anyway, the glutathione is worth a try!
Here is an update: The glutathione is till working after over 2 months. It’s an absolute miracle! (But I am 99% sure my tinnitus was caused by toxicity.)
Like everyone else on this thread I am in the same situation, this has been very helpful and thanks to Jimmitus for keeping everyone updated.
The difference I have versus everyone else is that for the last 2 years I can hear my left eye ball move in my ear, weird I know. Got checked out for all the nasties and was fine but no real explanation as to why. My thumping started last November (although have had tinnitus ringing for 10+ years), saw ENT, NHS, all the Harley Street docs mentioned in this thread and didn’t really get far. That was until I had a few brain scans and was told I had severe TMJ.
I was recommended a mouth guard which I use every night because I’ve grinding my jaw - I had no idea. I was also referred to a London TMJ specialist who suggested I take a vitamin called Dolovent, which you can buy on Amazon but has been medically proven to help with headaches.
I’ve visited the specialist for 5 months now and have seen real improvements, never goes away 100% but I have gone months without anything. I still have episodes which last minutes/hours. The sessions involve deep heating jaw muscles and dry needling in the face and neck - takes a bit of getting use too but I see a real difference.
I guess like everyone else it’s not a cure and I’m still disheartened when the thumping comes back but I think managing a stress free and healthy lifestyle is important.
Oh also, whenever I have a bad episode the next day I eat soft foods like soup only - this usually stops it immediately.
Your situation sounds familiar and also intriguing. Like most of us the legwork is on you to find something that helps and it certainly seems you've been doing that.
For me carbamazepine seems to be the most helpful medication that I've tried but it is not perfect and I seem to have to cycle off and then back on for it to have an effect. I feel that the trigeminal nerve gets irritated but another factor, a third party factor. Could it be the jaw... interesting
Could you possibly give me a hint as to the therapist either here or privately? I had a good response to acupuncture and this sounds like a novel way to treat the TMJ. I think this condition we have is multi-causal. And a lot of us have above average hearing too. Lots of stuff in the mix.
Keep doing what you are doing. As I always say, if you are having a good day you are winning and if it's a week you are REALLY winning.
I'd totally agree with this hypothesis. You will see in my earlier post that I had success treating this disorder with Sumatriptan. That is a powerful drug and so I tried to find a good day-to-day alternative. I found that NSAIDS (specifically, I used 500mg Naproxen) stopped the twitching completely (and with more success than Sumatriptan). After ten days, I dropped to 250mg Naproxen, then ten days later, I stopped all medication. The twitch has never come back.
I think that inflammation is a big part of this (... and that inflammation can come from injury, stress, tmj etc.) I wonder if MEM is so persistent because the jaw is always in use (e.g. drinking, yawning, talking) and so the inflammation never resolves (?unless helped by NSAIDS). Just a theory.
Alongside medication, I also tried to become more conscious of my face and jaw. I realised that when intensely exercising or speaking with others, I was unconsciously screwing up one side of my face (the side with MEM). When I noticed I was doing this, I moved my tongue back behind my front teeth and relaxed my face. It was hard at first but gradually I have made this an unconcius habit. This has also helped.
The TMJ Specialist is called Krina Panchal and she was recommended to me by a Neurologist that studied my brain and jaw. They did a video MRI scan of me biting and could see the degenerative condition - since then I have learnt how much TMJ can impact the head and cause all kind of noises and sensations (like the involuntary thumping).
I am almost 99% certain most people with this condition have it because they have issues with the jaw. I've learnt that the muscles around the side of your face and head become inflamed, this happens more at night because of eating hard foods then brushing teeth and in the mornings because people don't realise they grind /clamp their teeth while asleep. Because the muscles are so close to the ear it can really impact what you hear.
Nearly everyone on here has noted increased difficulties at night before bed - this would give you the reason why.
The dry needling is not really acupuncture, it is a different therapy but sounds similar. I really recommend investigating more because there are experts out there who will give you a combination therapy of heat, needles, vitamins, massage and exercises to make life more bearable.
Hi everyone come across this thread whilst trying to find out what's wrong with my ear as nobody can tell me and makes me think I'm going mad. Starting to affect my mental health really badly. Can I chat to you all? 😩😢
It started 6 weeks ago when I had microsuction on my left ear. The practitioner checked for wax in both ears, right was clear and the left had a small amount there. She told me after that i had a retracted eardrum but it was nothing to worry about. After I got home I started to feel quite ill, lightheaded and dizzy. And i started noticing when i finished a sentence i would get a reaction in my left ear like a spasm noise a short drum noise. Also this happened after certain sounds like other people talking, door opening, drawers closing, the worst being cutlery and plates. Like an involuntary reaction i couldnt control. I couldnt cope with even being in the kitchen. The following week I woke up at 3am with vertigo and my eyes were spinning to the left and I couldn't see straight. I couldnt stand either. I went back to a microsuction clinic with the same company but just a different location. The man I saw said I had some earwax on my eardrum which was causing the symptoms. He removed this with microsuction again. And told me to do the valsalva maneuver to try and inflate the eardrum back. That day I was really quite unwell so dizzy and lethargic. I was hoping that was it but it wasn't. When I got home I still had the spasms. 2 weeks later I was getting really scared and it was mentally affecting me. I went to a walk in centre and the nurse who checked my ear said they couldnt see anything wrong and to just take ibruprofen. The following week I saw an audiologist in an Opticians and he done some tests said there wasn't any pressure behind my ear and on the hearing tests only thing that come up was a low tolerance to loud sounds. He was quite concerned that I had vertigo and done some balance tests and called the GP himself as I had already been waiting 4 days and hadn't heard back from them. I saw a GP the following day and he gave me otomize which didn't help and on the 5th day of using it I started to get a really bad shooting pain in my ear and down my neck about a few seconds after using it. This happened on each use so the following day I stopped using it and contacted the GP again. A different GP gave me earcalm. On first use it was still hurting so I left it for few days and tried again. It was still painful and wasn't working so stopped using it. Few days after that my ear blocked and I had started hearing my jaw moving in my ear when chewing. the spasm reactions were there when I woke up but by the time I had got home from work they were alot less. Maybe as the ear was blocked I couldn't hear the spasm? This happened for the next few days and I thought oh great it's getting better. But with this I found my tinnitus which I have always had was so much louder in that ear to the point I couldn't watch tv without it affecting my hearing. 3 days ago i had a follow up with the microsuction clinic and he checked my ear said he didn't know what the problem was. Said the drum and tube was working fine. It was so hard to describe my symptoms. But as it had seemed to be getting better I was hopeful. 2 days ago I contacted the GP again and requested I have some anxiety medication as this was really starting to get to me. I was in a bad way last night and this morning and felt suicidal like I just wanted to end it all. The thought of living with this makes me want to die. My partner got so scared he took me to an a and e. But again they couldn't see anything in the outer ear so I am having another audio test done. Was there 10 hours. I had to speak to the mental health team because I was so bad. I just want to know what this is and what I can do about it. And why it has happened I'm in a really bad state right now
I’m so sorry Sian to hear about your troubles 😔 trust me I’ve been there. Have you seen an ENT or someone that’s more qualified. Not trying to be rude but Gps and Nurses are not experts. At least ENT would give more specialist advice?? I would leave your ear all alone and no more intervention and may heal in time. I’ve found too much intervention can make things worse?? just from my own experience. What about steroid nasal sprays or something to equalise pressure behind your eardrum?? Do you think it’s linked to this?? xx
An ent on call yesterday came down and saw me and had a look, couldnt see anything. And that was only because the mental health team said its urgent I need to be seens as it's affecting me so bad. He said I could have a ct scan but it might not show anything. I was desperate for an answer to what it is. He said it may be a muscle thats attached to the eardrum stretching. After I had got home he called and said he had spoken to his senior who said I would have to have an audio appointment first so wasn't going to book in a scan. Said I should get a call today. I tried nasel decongestants for around 4 weeks which didn't help. The last review I had with the microsuction clinic checked my drum whilst doing the valsalva maneuver and I swallowed. He said the drum was moving in and out like it should so the tube was fine. He didn't have an answer for me. The anxiety medication I was put on 4 days ago is sertraline. Could this have worsened the tinnitus? Friday and sat night I was beside myself with the noise. Previous to this I had only ever had one issue with my ear which was intermittent and didn't cause me any stress. I used to get a blocked ear in the cold sometimes which stopped if I pressed my fingers into my neck under my ear and lowered my head. But after I had my first microsuction this stopped straight away. It was only about 2 months ago I started noticing it again which was why I booked in to check for wax. Never had the problem I'm getting now. It's so debilitating. I'm not eating. Haven't eaten for 3 days as its too loud to be in my kitchen with the doors and cutlery. I haven't even showered for 2 days. Being at home where it's silent is worse that being at work. It's noisy at work but I find if there is background noise I don't notice the spasm as much? I really can't live with this. Appreciate all the help xx
Sian, I'm so sorry to hear that you are in a bad way. Many (or most) people on this thread have been exactly where you are.GPs don't really get how debilitating conditions of the ear can be. When my situation started I was trying to work and was sleeping one day on, one day off because the noise was so bad. Like a never ending nightclub in my head. A car idling that never stopped. Well now I have days and most recently a week where I was fine. Situations do change. And my reaction to a bad ear day is much calmer.
All the points that Steve1978 has made are superb. Tinnitus in whatever form thrives on anxiety. Very easy to say "relax" but when the anxiety comes down a bit you may find the situation improves a little bit. I have been exactly where you are.
Try a means of distraction as Steve says, as this really does work. There is a tremendous amount of information on this thread, take some comfort from it. Out of all people we understand.
Hello Sian, that is a huge amount to deal with - all your feeling are totally justifiable under these circumstances. I agree with Elane8701 above that an ENT would be the best place to go, via a GP referral for example. As Elane also says a nasal spray like Vix Sinex could be worth a shout as that one is quite strong, quick and easy to use over the counter and I think it can be used for up to 5 days.
You have gone through a huge amount over the last few weeks and it is difficult to unpack everything you've said above to say with accuracy exactly what you have, an ENT would be better placed because you've mentioned elements of vertigo, dizziness, jaw, ear pain, ear spasms and retracted eardrum. In many people's experience GPs are not well placed to understand ear conditions.
Although I can't be 100% certain around your situation, in the meantime I can give you a little part of my story which might help you as I can relate to some of what you say.
On 01 Jun this year I started getting ear spasms in my right ear out of the blue. I went to the DR - they had no idea, maybe estuation tube dysfunction. I went to ENT who said I'll take ear wax out (inc off your eardrum) and you'll be fine. I was for a few days but the ear spams came back. In the July it was essentially clear I had Middle Ear Myoclonus (MEM) or Tensor Tympani Syndrome (TTS) - both I think are practically the same. Went back to ENT who agreed.
For six weeks my anxiety went through the roof as the spasms increased and were at times every 5-10 seconds all day everyday. I couldn't sleep, had no idea what to do and it was the lowest point of my life. I couldn't work was off sick for six weeks (I've never had more than 2 days off in a row in my life until this summer). I would get some relief where they dropped to perhaps every 10 minutes but for six weeks I was in living hell, I also thought there is no way I can live with this.
Then around late Aug the symptoms started easing off and as one good day became two and then a week - I started to calm down. I then think my calmness helped relax the middle ear spasming muscles, essentially the Stapedius muscle and the Tensor Tympani muscle. I have MEM (or TTS) and MEM thrives on anxiety. I've learned through all my research the more anxious you get the worse the symptoms also get - it is a vicious cycle. I'm not the most relaxed person, I have had to learn to relax including meditation and deep breathing - never thought I would say that.
Whether the relaxing and calming myself down has worked I don't know but for the last six weeks I've seen an 80% improvement. Yes I still have it. Yes I get a handful of ear spams a day, but I have not had them set in constantly every few mins or seconds. Sometimes when plates clink or doors close I get like a flinch from the ear muscles but not always and I'm finding if there are other sounds and I divert my attention to those either they don't react as much or my brain is just not focused on them. I also took Magnesium Taurate (Viridian brand on amazon) everyday as it is said to be good for the ears and at relaxing muscles generally, also good for the nervous system, might be helping or maybe a coincidence - I don't know and don't care - as long as I am improving I'll be taking it.
Sian - back to you. You may like many of us on this thread have MEM/TTS - you may not. It's not clear in your case and perhaps a good ENT can work out what you have because it could be something else.
If you do have MEM/TTS I want to say the following to you from my research over the last few months:
1. This can go away for days, for weeks, for months and even for years - maybe forever. People who have this (or had it) have said this.
2. This can subside to a very low level, very manageable and people get on with their everyday life.
3. While a rare condition there is some medication (and natural remedies) that can help some people. Some people take anti-anxiety medication.
4. Relaxation, CBT, meditation and deep breathing - many people with this have said this helps.
5. This thread going back over 5 years is very informative with people who have MEM. Jimmitus who posts regularly here is a true hero and has helped me more than anyone on this condition (inc Doctors).
6. Although it is rare there are people with this condition. There are two Facebook Groups which I am on and have almost 2,000 people in each one from around the world who have this condition and have lots of advise going back 5+ years on how to cope.
7. If all else fails there is surgery which can be done by ENT to cut the muscle tendons. Around 70 people across two Facebook groups have had the surgery and the success rate is around 70%.
Sian - in the meantime during my six weeks of hell two things did help me plus one I should have done;
1. I had a desk fan blowing air towards my right ear. As a result I/my brain could not work out whether my ear was spasming or it was the air from the fan. It tricked my brain and I thought well I don't now know if it is spasming - at that point I just needed something anything to make me think it was stopping. I would read, watch TV, listen to podcasts with the fan blowing in my ear and I was able to take my mind off it.
2. I put a foam ear plug into my right ear. Again as I you mentioned above when your ear was blocked you think you couldn't hear the spams. In my case the ear plug in meant I could barely hear the spasm, much lighter softer sound. I also sleep every night with an ear plug as I can't tell if the ear is spasming which in turn helps me mentally and to fall asleep. I think ok maybe I'm getting them or maybe it is the foam plug expanding and making a noise in my ear - again kind of tricking my brain (and me) in turn helping to calm me down and relax.
3. Everyone told me to relax, do meditation, do yoga, do proper deep breathing. I couldn't because I was in living hell. But I SHOULD HAVE as that may have got it under control quicker. It is easier said than done when you are in the storm and can't go on. I didn't know but the mind and body are linked (yes I'm a fool). Calm the mind and you calm the body.
Sian - you may not have MEM/TTS it might be something else, you've mentioned a few different symptoms therefore not clear cut in your case - ENT should help. But take support from us until things become clearer. Ask us any questions and we will help you because many of us know how you feel....I do because I felt the same.
Some quick remarks about how GABA, omega-3 and saffron helped with my MEM, since I did not see anyone mention it here or anywhere online.
My MEM symptoms started a year ago after working through a night and going to bed 8:30am. A stressful event like that, and "not being a relaxed person in general" are typical ingredients for MEM. The issue stayed for 12 days on and off and became worse, then sounding like salves of 15-20 fast clicks every few seconds, for hours to a few days on end. Compared with others here, these were rather light to moderate MEM symptoms.
Then, just because of its inhibitory effect in the nervous system, I tried GABA. This is not Gabapentin, just regular gamma-aminobutyric acid available as a food supplement. I took 2250 mg distributed over 24 hours, and 12 hours after the last dose the MEM symptoms became less, ceasing altogether 24 hours after the last dose.
I had several MEM flare-ups after that, and GABA helped every time. Just the amount needed was different depending on the severity. Sometimes 700 mg GABA was enough, sometimes 3200 mg GABA was needed, distributed over three doses within a 24 hour period. (You should split GABA doses >1000 mg, or whatever your personal tolerance is, to avoid a so-called GABA flash. This is a temporary tingling sensation in hands and feet, sometimes together with light difficulty breathing for up to a few minutes. In addition, not taking GABA on empty stomach also helps to avoid a GABA flash. And slowly increasing the single doses to know your personal tolerance level.)
By now I am free from MEM for about 5 months, and hoping this is permanent. I can only speculate what helped me longer-term. Either it was spontaneous remission as it happens at times, or:
Pehaps, it was taking GABA not just until the MEM symptoms of an episode stop, but for about 3-5 days afterwards, in the same daily dose, split into two single doses before bedtime and after waking up. I hypothesize that this keeps the ear nerves calm and helps the associated neurons learn that new state as their intended default or ground state, preventing a reoccurrence of myoclonus incidents at least for some time.
Alternatively or in addition, it might be due to me taking a combined supplementation with saffron extract (30 mg per day) and omega-3 fatty acids from fish oil or algae oil (2 g per day for DHA and EPA constituents together). Both are rather powerful natural antidepressants with no side effects in that dosage. (The only caveats: Exercise caution when taking it together with other antidepressants as it can make the effect too strong. It can also cause a manic phase in bipolar disorder.) After about 2-4 weeks of this supplementation, subjectively it feels like my whole nervous system became stronger: more resilient, much less likely to an anger outbreak or other meltdown in stressful situations. This calming effect makes me think it could be playing a role in preventing MEM flare-ups in my case, given that MEM seems connected to hyper-excitability of ear muscle nerves.
(Just food for thought and experimentation. As always, use with caution, and please do your own research before taking these supplements.)
Thanks escuchame, very intriguing. I have Picamilon which is GABA and Niacin. Might try straight up GABA. Like your theory on strengthening the nervous system. Being a high stress person I think this condition is more likely to occur. Same with jaw tension and issues with Trigeminal nerve.
Thanks escuchame for posting your success. Generally not enough people take the time to come back and go through in detail what they feel worked for them. Great to hear you are 5 months in the clear.
I'm part of the MEM Facebook Group with over 1,700 members at time of writing and just generally for anyone reading this do consider joining as for this rare condition it can be difficult to find people who have this and are still actively posting on line. In that group there are posts everyday.
Gaba however, is not mentioned much in the group, one person did post on Gaba in 2023 suggested they had success with it. Another takes it more for stress, otherwise not much. A few posts on gabapentin which people in the US often call "Gaba" - like you say not to be confused with. Your post escuchame is really interesting and certainly gets me thinking.
I got this in June this year, thumps all throughout the day, then end of August I started taking Magnesium Taurate which coincided with an 80% improvement. Not 100% confidence it was the reason but I carry on taking it.
The problem for me is while thankfully it no longer "sets in", it now does react to certain sounds instead. Sometimes people's voices, sometimes plates, cutlery, paper crackling - getting a little worse recently. I'm starting to consider if there is anything else I can do to settle the muscle down to calm it and not react to these sounds.
Since your post I've looked into Gaba - not easy to find in the UK, though there are a couple of on line places which import from the US (iherbs being one option).
I may try it later this month, thanks again for all your detail.
I just wanted to provide some information to anyone reading this thread. Note I've taken this from someone who posted in another group, but could be useful to anyone with this condition.
Botox Treatment for MEM
Professor Bance (Cambridge UK) started using Botox for his patients in early 2024.
So far as at Nov 2024, he has treated 16 patients, with 60-70% experiencing relief.
The procedure itself takes about 30 minutes:
1. A freezing agent is applied to the eardrum.
2. A small hole is made in the eardrum, and Botox is dripped in.
No major side effects have been observed, and you can resume normal activities immediately after.
In 1% of cases, an infection may occur, but it’s easily treated with antibiotic eardrops.
Once again just to note I have taken this from another group, don't have any other information and note I have not had Botox, can't answer any questions on it.
Feel free to research Professor Bance for contact details. Professor Bance is considered the lead for MEM/TTTS in the UK. If anyone reading has any experience of Botox for this condition perhaps they could share?
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
But it will stop again, without a doubt.
Ear infection 
New here, could use some advice
Can’t mask T to sleep 
change in tinnitus any advice?
Looking for advice, NHS were useless
