Middle Ear Myoclonus- any advice? - British Tinnitus ...

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Middle Ear Myoclonus- any advice?

Jimmittus01 profile image
Jimmittus01

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!

92 Replies

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.

Keep in touch !

Of course. I'll update with any progress.

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.

Jimmittus01 profile image
Jimmittus01 in reply to Rpn1

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?

Rpn1 profile image
Rpn1 in reply to Jimmittus01

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!

Jimmittus01 profile image
Jimmittus01 in reply to Rpn1

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.

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.

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.

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.

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 !

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

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.

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

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

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

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.

PeeWeecat15,

How have you been lately?!

Jimmittus :0)

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.

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!

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.

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

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!

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

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.

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

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.

Hi Jimmittus

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!

Thanks.

Peeweecat

Hi Peeweecat,

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 :)

Jimmittus

Hi Peeweecat,

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.

Give me an update when you have the time ;-)

Jimmittus

Hi Jimmittus

Good to hear from you.

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.

Best wishes

Peeweecat!

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.

All the very best

Jimmittus

Thanks Jimmittus and good luck!

Hi Jimmittus

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.

BW

Peeweecat

Hi Peeweecat,

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.

As ever best wishes,

Jimmittus

That's amazing! Isn't it strange how we come across things that help by accident?

Keep me updated and I will too.

BW

Hello Jimmittus

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.

BW

Peeweecat

Hi Peeweecat,

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.

Best Wishes

Jimmittus

Hi Peeweecat,

Been a little while. How is your situation? Had nearly 13 weeks without an issue! Then the bast*rd thing comes back.

I think that amount of time is significant. Hopeful to get this beaten in 2020.

As ever, all the best

Jimmittus

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 .

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.

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.

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.

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

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

Hi Rocksan,

Sorry to hear you are having a hard time with this, I hope you find some of the information and experiences featured here useful.

Best of luck!

Jimmittus

Hi all,

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.

entandaudiologynews.com/fea...

Lets hope we can all find some relief or cure for this very annoying ailment.

Clickingears,

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!

best wishes

Jimmittus

Hi Jinmittus01,

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.

Best wishes,

Clcikingears

Thanks for all that info, very helpful.

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.

Best wishes,

Jimmittus

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??

Hi AnnaJ83,

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?

Keep in touch on here!

Best

Jimmittus x

Hi Jimmittus

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.

Peeweecat,

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!

Jimmittus

Hi Jimmittus

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!

Peeweecat, always a pleasure to hear from you.

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.

Let me know how you get on!

As ever, all the very best to you

Jimmy :-0)

Ingrid-p profile image
Ingrid-p in reply to Jimmittus01

Hi is phenergan available to buy over the counter still? I used to use it years ago to calm my children before long flights.

Thanks

Ingrid

Hi Ingrid,

It may be behind the counter and you have to ask for it. I bought mine online without any problems.

Thanks

James

Hi Jimmittus

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.

Keep in touch and good luck!

Hi Jimmittus

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.

Best wishes

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.

Take care

Jimmitus

Hello,

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?

Hi Ekorad,

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).

What supplements have you tried so far?

Have you got a bite guard?

Cheers

Jimmitus

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.

Jimmittus01 profile image
Jimmittus01 in reply to ekorad

Hi Ekorad,

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 hope this is of some help!

Very Best

Jimmitus

ekorad profile image
ekorad in reply to Jimmittus01

Hi Jimmitus,

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.

Wish you all the best.

Hi Ekorad,

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.

Cheers

James

Hi Jimmitus,

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.

Jimmittus01 profile image
Jimmittus01 in reply to ekorad

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.

Cheers

Jimmitus!

LJW1990 profile image
LJW1990 in reply to ekorad

Hi there, just wondered if you could update as to how you are getting on with the Carbamazepine?

ekorad profile image
ekorad in reply to LJW1990

Hello,

I have stopped taking Carbamazepine as it did not help at all.

At the moment, Lorazepanum seems to work to some extent regarding my anxiety and thus diminishing the effects.

Hi there,

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

Hi there,

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.

Always happy to answer any questions!

Cheers,

Jimmitus

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

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.

Cheers,

Jimmitus

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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!

Cheers,

Jimmitus

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

Hello again!

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.

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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!

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

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.

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

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.

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

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.

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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

LJW1990 profile image
LJW1990 in reply to Jimmittus01

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.

Jimmittus01 profile image
Jimmittus01 in reply to LJW1990

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.

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