Middle Ear Myoclonus: A Treatable Cause of Objective Tinnitus

An ear surgeon in Norway is going to operate on me, he has good knowledge of this. I am waiting for the operation now, and hopefully it will be in August or September.

 

Mine is continous, 24 hours a day. It is a sound, and I feel it is pulling my ear drum, have pain sometimes, and I also have a lot of pain while flying.

I am sensitive to sounds, especially running water, loud talking and etc. Hopefully the doctor wouldn't suggest cutting it if he thinks it's going to get worse

I just want the vibration to dissapear, it's very uncomfortable and annoying, and it's getting worse. I work full time, and hardly sleep, tired all the time...

I will get the operation soon, August or September I think, just waiting for a date now.

 

Can you ask the ear surgeon on our behalf what personal experiences he bases his diagnosis and solution on? What academic articles? What reasoning i.e., is the stapedius affecting the inner ear and that causes our rumbling tinnitus like in Menieres? And how did he find out it was your stapedius vibrating (or causing the inner ear/middle ear ossicles to vibrate)? Did he see it on a tympanogram/acoustic reflex testing and if he didn't what is the reason why tympanogram is useless?

I'm trying to learn and all I know are the experiences from chat-hyperacusis both positive and negative and a couple of articles from austrian doctors saying it cures menieres and the tinnitus of menieres. Can you tell us or pm me the name of this norweigan doc?

 

Btw, there are more positive than negative reports around. I suspect the negative reports were due to perilymph fistula from surgery.

 

I'll ask him when I go there for the operation

First he tested if it was the tensor tympani, but it wasn't. Then they took another test, maybe it was acoustic reflex testing, it was a test where I had ear plugs in my ear with loud noises, and they could see how the ear reacted to this. From the diagram they printed out, he could see it was the stapedius.

I'll pm you the name of the doctor.

 

Hi All. New forum member here. I stumbled across this forum from researching my condition. For the past few weeks I've had fluttering in my left ear. Saw an ENT specialist and he said I have myochlonus. I was then sent off for some hearing tests (brain stem) and it was all clear. I don't get it every day, but when I do get it it will be first then in the morning when I wake up. A few times now the fluttering has been so bad it has actually woken me up in the middle of the night during my sleep. I then find it really hard to get back to sleep, but have found that if I put my finger in my ear (close off my ear), the fluttering will stop. Assuming it is myochlonus, the ear spasm does not hurt but it's definitely audible and I can feel the vibration which is very annoying and distracting.

I have been drinking more alcohol and caffeine the past few months. Maybe that could contribute to it? I've never had this before. My next step might be to try anti-seizure medication (what the ENT suggested), but I've read there are several cases reported where this doesn't help. Has anyone had success with anti-seizure medication or a relaxant to try stop the muscle spasms?

I don't have any sensitivity to high pitched or loud sounds, so I don't think I have "H" or Tensor Tympani Syndrome. So I assume the muscle spasm is of the stapedial muscle? The ENT didn't say why the myochlonus is occurring, but that it could be viral? I doubt it though as I've had this for about a month now. I also don't believe I suffer from anxiety or depression, so I don't think that's a contributing factor.

From my reading, the last resort is cutting the stapedial muscle. My ENT has said he's performed this once before and it did help his patient (who had it in both ears). Anyone here had the operation done? I really don't want to do this as it's a last resort and like everyone want to avoid surgery if I can. Would just like some advice from fellow sufferers. It's good that these forums exist where we can find people with similar problems and relate and talk about the issue.

Hope to hear from someone...thanks!!!

EDIT: I should also point out that I suffer from the "high pitched sound" tinnitus. I've had this for several years now, but doesn't bother me nearly as much as I only get it every few weeks or so. It comes on randomly in any ear and usually lasts a few seconds. Occasionally I will hear a high pitched sound and then it slowly fade, but then not completely, to a soft high pitched sound. Sometimes that will last a few hours but then go away completely.

 

I am experiencing constant clicking in my left ear. It is like a popping sound. I don't notice it much when I 'm up and about but it makes getting to sleep almost impossible. Is this the stapes knocking against the eardrum? I also occasionally get heavier thumping in both ears. Is this the tensor tympani hitting the eardrum? These annoy me much more than the tinnitus now?

 

Not sure if I can help. But years ago when I developed tinnitus I had all sorts of noises, each of those had different origin but a single cause, in my case. If it is a clear clicking/cracking noise, mostly when you swallow, it is related to eustachian tubes that may be closed/in tension. If it's more like random popping/tapping, a muffled sound that you mostly hear in silence it is likely ear muscle spasms (not sure which muscle, stapedius probably), as above one reason may be muscle tension (at least for me both symptoms were necause of muscle tension, as a result of emotional tension). Both of them went away with time and taking care of the primary cause.
Also, I'd like to give you my opinion, myoclonus is usually affected by cyclobenzaprine, which is a muscle relaxer, and it acts on the central nervous system not the muscles itself. Mainly by affecting the Gabaergic system, this way of acting resembles benzos inhibiting the CNS (working on gaba, which is THE inhibitor neurotrasmitter), so... myoclonus or not, my opinion is the same for all king of T, it is a kind of hyperexcitability of some brain areas, so before undergo any surgery try to train your mind and manage and fix all the stresses (physical and psychological, esogenous and endogenous).

 

Middle Ear Myoclonus are symptoms presumably caused by the dysfunctional movement of either of the two muscles that insert in the middle ear: tensor tympani and stapedius.

Objective Tinnitus From Middle Ear Myoclonus

 

I copied this from another board, you might want to look at it. It sounds like it describes your symptoms:

Idiopathic stapedial muscle spasm

This condition, in contrast to palatomyoclonus, tends to be a rough, rumbling, or crackling noise often accentuated or triggered by external noises such as voices, rattling of paper, or running water. The symptoms generally follow this exposure are brief and intermittent, and rarely become disruptive and prolonged. Diagnostic studies include variable-intensity tympanometry in an effort to stimulate the spasm and aid diagnosis, and acoustic reflex testing which may demonstrate a prolonged, continued increased impedance during and after the sound stimulus.5 Primary treatment consists of muscle relaxants, clonazepam or diazapam. Because the symptoms may last only 2 or 3 months and then disappear for long periods, the use of surgery to divide the stapedius tendon should be used very conservatively.

http://www.utmb.edu/otoref/grnds/Tinnitus-9901/tinnitus-9901.html

 

@nimx

Do you think muscle spasms can also cause a sort of vibration in both ears? I have this constant vibrating, kind of tickling feeling in my ears and both ears feel "full" too. This is accompanied by a pretty high-pitched (around 9,5 khz) whistling sound.. I think the initial cause for my T and the feeling in my ears was too loud music in a club and I am starting to think that some kind of tension serving as protection mechanism is involved too. My audio-grams don't show any hearing loss although I have not done an extended one. Would be great if you can help

 

I wrote the post you are referring to, but I still haven't had surgery. Has anyone tried these muscle relaxants? No doctor has even suggeted any medication for this, and I have had the vibration for a while now too.

If this medication helps for the vibration, what about the sound I have in my ear, will this get better too?

 

Just an update, still haven't had the surgery yet... The doctor who is going to operate on me, moved to another hospital, so I needed to do the testings yet again.

Anyway, I am still going to have the surgery, cutting my stapedius, and he found another thing from the CT scan which is called SSCD? Familiar to anyone?

 

Finally, I am cutting the stapedius muscle 3 May... Excited, and hopefully I won't get any side effects from this.

 

@japongus Tagging you in here. Above posts might be of interest for you.

 

I've asked a few questions to @Sueloe via the thread we have in pm so we can document this better. Will update this thread with the answers.

 

I have exactly this high and low pitched combination tinnitus. Tell me what sounds are uncomfortable to you and what they feel like, just to see if the H turned out the same as well, so we can link this type of tinnitus to this type of hyperacusis, and not just get thrown in with the morass of sufferers out there by the TRT philistines.

 

Well, I hope it went well for @Sueloe op on 3rd of May. She said the doctor actually saw it with a machine, I'm totally confused at what she might have meant by this.

 

It's been a month since my surgery, but symtpoms are still there unfortunately.

There are 3 things that is wrong with my ear: Vibration, ear drum is thin and I also have a hole in the temple (not sure if this is the correct word). I also suffer from dizziness, and it is worse now.

The doctor cut the stapedius tendon, but something is still vibrating in there. The eardrum is better, doesn't hurt that much when I fly.

Sorry, but I can't really sum up what the doctor has done, or what the name of the tests are, because it's hard to understand what all the terms he uses and etc.

He will follow me up after the summer.

Sorry about the late reply too, but I don't get any notification on mail when I get messages or other alerts... Please advise how I can get it

 

Hi Sueloe,

I am so sorry to hear the surgery did not fix your problem. I also suffer from the ear spasms and I have this in both ears. Surgery has been discussed but he wants to do tests to make sure it is the muscles that are in spasm. How does your ear feel after surgery ? Has there been any major side effects ? I am on a group on facebook called tonic tensor tympani syndrome... you should join our page because we support each other and try and share knowledge of this awful condition. I am so sorry the surgery did not go to plan and I hope you doctor has some alternative suggestions xx

 

I'm very sorry it didn't work for you. The part where you complain about vibration sounds very familiar, but when you said the doctor had seen it on a test, I took it for granted it would work and that it was a classical obvious case. Then I re-read you and realized there were some things that were similar, so it's a pity it didn't work. Maybe the tendon re-grew back into place... maybe the doctor didn't have that much experience after all, who knows right now.

You can get email notifications by going to Contact Details in the submenu under your name at the top right, and tick on the boxes at the bottom ''Receive email when a new conversation message is received'' and/or ''Receive email when name is mentioned''.

I also fully agree with Stephanie about our facebook group on TTTS. It's a very useful group as it's allowing us to document the condition better, to try to differentiate who was what and what works for who. It's a very tough but wide spectrum of symptoms and hard to guarantee we'll eventually improve our knowledge, but someone in that group had paper patching and bonian's solution and reported progress.

If by temple, you mean tympanum, then that could mean that as the hole heals you could improve your symptoms no? That could be a positive.

 

Any updates of how everyone is doing?

 

I'd like to know how @Sueloe did you get both the stale food and the tymphany cut? How are you currently. And has anyone gotten better please share

 

Stumbled on this page after finding the medical term for what I'm experiencing and while this all is very unfortunate, it is nice to know I am not alone!

First time posting here, tinnitus for many years coinciding hearing loss, but the objective tinnitus (MEM) has only been going on for two months. I am taking muscle relaxers/benzodiazepines that did seem to help but unfortunately, I think I need a higher dose. If I follow directions exactly (and not take less than rx) then it does seem to quiet down and calm down but not go away completely. I was taking half the dose and the clicking sounds came back like they did when they started. This whole thing is a mystery to me.

I am a candidate for surgery but I hope I have better results than you did you poor thing! Any updates?

 

@dieslgrl ivebeen following people who have gotten the surgery and do far all of them have found relief from it. It’s impossible not too if it’s caused by either the stapedius or tensor. So I’d make sure you find a doctor who has gone the procedure before. A friend of mine here in Dubai had gone two months ago to uk to see a doctor who has done the operation 10 times. She says apparently everyone including her are back to normal ears his name is dr. Manohar Bance. I really hope this information helps I know how annoying this is. Luckily I only get a few random thumps a day, and some days nothing. I am lucky but if it turns to a dire situation I know where to go. My situation is weird in that I think it’s relstef to fatigue and how sleep I get them thump! It happens around sleepy moments. Very best to you !!

 

Typewriter tinnitus: An investigative comparison with middle ear myoclonic tinnitus and its long-term therapeutic response to carbamazepine

Abstract
Objectives
Due to its rarity and similar sound, typewriter tinnitus (TT) can be misdiagnosed as middle ear myoclonic tinnitus (MEMT). We aim to clarify the characteristics of TT compared to MEMT, and the long-term therapeutic response to carbamazepine.

Methods
Fourteen patients with TT and 28 patients with MEMT were enrolled.

Results
TT patients were older than MEMT patients, and their tinnitus symptoms were mostly unilateral. Tinnitus symptoms, which is associated with dizziness, facial spasm, and head motion, were more common in TT, whereas MEMT were more related to noise. Acoustic reflex decay perturbation and low loudness discomfort level were diagnostic signs in MEMT patients, while decreased level of wave II in ABR was the most reliable sign in TT patients. All TT patients exhibited partial or complete response to carbamazepine, but there was a relapse rate after withdrawal of the drug was 60%. Increase in age and longer duration of symptoms were the risk factors of relapse of TT.

Conclusion
The different characteristics observed in this study will be helpful to diagnose TT and MENT. Duration of tinnitus was the most important long-term prognostic factor of the carbamazepine trial, which indicates the importance of its earlier diagnosis.

Keywords
Typewriter tinnitus
Middle ear myoclonic tinnitus
Carbamazepine

Source: https://www.sciencedirect.com/science/article/abs/pii/S0385814620300250

 

Diagnosis of Stapedial Myoclonus Using Endoscopic Visualization

Abstract
Background:
Stapedial myoclonus is an uncommon condition involving the rhythmic contraction of the stapedial tendon that may result in a host of symptoms, including tinnitus (1–3). There is a dearth of robust diagnostic modalities to diagnose stapedial myoclonus(4–7), and most patients are treated without definitive diagnosis(8-12). Herein, we hypothesize that stapedial myoclonus can be readily diagnosed by awake otoendoscopy.

Case Report:
A 21-year-old healthy male professional singer presented with a rhythmic “thumping sound” heard in both ears for 5 years. Symptoms were triggered by singing and were worse on the right side. Work-up, including otologic exam, audiologic testing, and high resolution imaging, was unrevealing. Given symptomatology, stapedial tendon myoclonus was suspected.

While awake in the operating room, an inferior myringotomy was made, and both 1.9 mm 0 and 30 degree 3-CCD Hopkins rod endoscopes were used to visualize the middle ear space using a transcanal approach. There was robust movement of the tendon with patient vocalization that corresponded precisely with the timing of tinnitus. The patient subsequently underwent transection of the right stapedial tendon under general anesthesia using otoendoscopic visualization. The pyramidal eminence was also removed to avoid future regeneration. The patient underwent an identical procedure on the contralateral ear 3 months later with complete resolution of symptoms bilaterally.

Conclusion:
Stapedial myoclonus was diagnosed by transtympanic otoendoscopy in an awake patient. This approach may be readily applied in awake patients suspected of having stapedial myoclonus. Transection of the stapedial tendon in these patients resolves tinnitus.

Source: https://journals.lww.com/otology-ne...apedial_Myoclonus_Using_Endoscopic.96108.aspx

 

Interesting even if it is a case study.

Tinnitus Concomitant With Eye Closure Treated by Tensor Tympani Tendon Resection and Cartilage Block Insertion

Middle ear myoclonus (MEM) is a rare idiopathic clicking-type tinnitus attributed to abnormal contractions of the stapedius and/or tensor tympani muscles.1 Most cases of MEM can be managed with medication, behavioral therapy, and avoidance of trigger factors.2 In patients with intractable MEM, middle ear tendon resection (METR) is a treatment of choice with a high success rate.3 However, reattachment of the resected tendon can occur in the healing process.3 Herein, we present the first report of an MEM concomitant with eye blinking treated by resection of the tensor tympani tendon and the cartilage block insertion, which can prevent a recurrence.

Full article: https://journals.sagepub.com/doi/full/10.1177/0145561320942067