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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!

17 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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