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British Tinnitus Association
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Middle Ear Myoclonus- any advice?

Hi there!

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!

33 Replies
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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 !

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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.

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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.

Keep in touch !

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Of course. I'll update with any progress.

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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.

MRI was negative for acoustic neuroma.

I go back in a month.

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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?

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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!

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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.

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Hello Jimmittus01

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.

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Hello Jimmittus01

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?

Thanks.

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Hi Peeweecat15,

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.

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Hello Jimmittus

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 !

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Hi Peeweecat15!

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

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Hi Jimmittus

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.

Anyway, keep in touch.

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Hey Guys,

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

Stay healthy

Sergej

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Hi Sergej,

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.

stay positive

Jimmitus

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Helli Sergrj and Jimmitus

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.

Keep in touch.

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PeeWeecat15,

How have you been lately?!

Jimmittus :0)

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Hi Jimmittus

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.

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Peeweecat15,

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.

Will update again soon!

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Hello Jimmittus 01

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.

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Hi Peeweecat

Always nice to hear from you.

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.

All the vesy best,

Jimmittus

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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!

Will looj on YouTube for videos you mention.

Good luck!

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Hi Peeweecat,

Hope all is going well for you.

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.

Let me know how you are getting on

Jimmittus

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Hi Jimmittus

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.

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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.

Best Wishes as always

Jimmittus

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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.

Good luck.

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Hi All,

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.

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CaroleRed,

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!

Keep me updated.

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Hi Jimmittus,

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.

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CaroleRed,

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

Jimmittus

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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!'

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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.

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