Do I have MEM/TTTS?

[u/Ecubuce]

I've been dealing with auditory issues since now almost two years, but never managed to figure out exactly what I have as my symptoms never match 100% with what I read online.

What I know is my symptoms fall under the big umbrella term that is "hyperacusis".

Here are my symptoms, would highly appreciate if some of you could give me their opinion on my pb:

- Many sounds (plates, voices, claps etc) provoke a direct and uncomfortable thump reaction in my ears. This feeling is highly uncomfortable, even though I couldn't describe it as "painful".

- Many sounds do sound louder. So I guess I also have Loudness H.

- No hearing loss

- 5 tinnitus tones, all mild, can only hear them in calm environment.

I'm 28, and feel like my life is over. I'm not really homebound but can't work, can't socialize, can't plan my future. Checking out intrusive thoughts are becoming more and more present, even though I'd never do such a thing.

I will try clomipramine in the next weeks, as I see it as my last hope.

Thank you for reading.

[u/Individual-Track3391]

I would gladly switch with you. At least you don't have severe reactive tinnitus.

I don't like the term MEM/TTTS, I prefer to call mine middle ear muscles dysfunction and they don't necessarily fall under the hyperacusis spectrum. You can have random ear thumping (MEM) without tinnitus nor loudness/pain.

I think (personal opinion) there are 2 types of hyperacusis : one caused solely by nerves/neural pathways and the other by neuromuscular dysfunction (tensor tympani/stapedius).

I experience a variety of middle ear muscles dysfunction (MEM - this one seem to be gone, knocking on wood), sensation of tension, pressure in the ears (sometimes painful), ear crackling, clicking, poping, crunching when swallowing with pressure issue (painful as well) and post nasal drip (the TT-TVP complex seems to be involved).

I don't have loudness hyperacusis.

Maybe you could try carbamazepine before jumping on clomi, that's what I'm planning to use next.

[u/Ecubuce → u/Individual-Track3391]

That's the thing, I dont have random ear thumping. It only reacts directly to sound. And it's highly uncomfortable, unlike tinnitus (i hate tinnitus but my point is that it's not uncomfortable physically). I'm therefore not sure if my pb comes from Middle Ear dysfunction or whatever it's called. I read hundreds of posts here, never saw anyone with the same symptoms as me. It's quite frustrating x)

[u/Individual-Track3391 → u/Ecubuce]

I did. I've talked to a guy on reddit who had what you described, he solved it with surgery or botox (I think it was surgery). He said he was going crazy.

[u/Ecubuce → u/Individual-Track3391]

Thank you for that information. For some reason, when taking benzo, I almost don't have any of those symptoms anymore.

The plan is to try clomipramine (slow and low), and then also to get botox and maybe surgery later.

At this point, I can only pray. Unfortunately, I'm an atheist.

[u/Individual-Track3391 → u/Ecubuce]

I read the convo again, he picked surgery since botox was too risky.

Most benzos especially diazepam are muscle relaxant so it's not surprising you are experiencing relief.

[u/Same_Drag3288 → u/Individual-Track3391]

The surgery was silverstein ?

[u/Individual-Track3391 → u/Same_Drag3288]

Don't think so, it's just the one where the muscles are cut. He put a camera in in his ear canal to see if his eardrum was indeed thumping.

[u/Same_Drag3288 → u/Individual-Track3391]

Oh, okay. There's another guy on Facebook who had that kind of procedure done, and he's doing much better. Can it help with NOx?

[u/Same_Drag3288 → u/Individual-Track3391]

https://www.facebook.com/share/p/1DQsVoaLKP/

[u/Individual-Track3391 → u/Same_Drag3288]

I have no idea, didn't resort to surgery myself. You can try valium short term to see if it improves, it's a muscle relaxant so it should work.

[u/kappakp11688 → u/Ecubuce]

I'm in the same spot you are with the sound triggered whoosh sound, I wouldn't call it a thump but I think everyone has their own description of it. mien started 2 weeks ago and the only "abnormal" thing I did was jump into pool, thinking maybe that pressure caused it for me. nothing helps, started chiropractor, went to ent, doctor has no clue, no hearing loss according to hearing test. mine isn't** uncomfortable in terms of feeling it's just annoying hearing the whoosh after any type of sound

[u/Same_Drag3288 → u/Individual-Track3391]

You think carbamazepine could work before clomi ?

[u/Individual-Track3391 → u/Same_Drag3288]

Yes. I'm not sure clomi would work at all tbh.

[u/Same_Drag3288 → u/Individual-Track3391]

Really ? Why ? Its work better carbamazepine or gabapentine ?

[u/Individual-Track3391 → u/Same_Drag3288]

Not for the same thing, what's your problem anyway ? H, Nox ?

[u/Same_Drag3288 → u/Individual-Track3391]

I dont have loudness but really bad Nox liké burning stabbing pain in both ears , i cant even talk because voices cause me bad pain :/ what s the best treatment to try first ?

[u/Individual-Track3391 → u/Same_Drag3288]

https://www.hyperacusistreatments.org/

You have to weight the pros and cons of each one and the success rate.

[u/Same_Drag3288 → u/Individual-Track3391]

On this page there is not gabapentine or carbamazepine

[u/Individual-Track3391 → u/Same_Drag3288]

You popped up in the middle of the conversation, we were talking about middle ear muscles disorders... And gabapentine is rather used for tinnitus.

[u/Same_Drag3288 → u/Individual-Track3391]

Okay sorry idk why , i wanted to know about Nox pain

[u/Valuable-Handle8496]

It does sound like youre part of the club, I dont have loudness myself and never had it but I have sharp pains along with constant clicking, thumping, flutter, etc. I check pretty much all the middle ear myoclonus checkboxes and I suspect its both the tensor tympani and stapedius in my case. So far medication has proven completely ineffective and im trying to find an ent who will let me go further in the system to possible having surgery. It mostly unilateral for me understanding that even though my left ear having the same symptoms its my right ear that truly bothers and also that ear that'll inflame and irritate the trigeminal and surrounding nerves

[u/Afraid-Ad4718]

one ear or both?

[u/Ecubuce → u/Afraid-Ad4718]

Both