Hyperacusis/TTTS and Myringotomy Tubes Surgery for Ear Fullness

Hi,
I am new here.

I believe I have Tonic Tensor Tympani Syndrome after a recent acoustic shock incident with an earbud in a conference call (no more conf calls for me ...) I do not use earbuds at all but that was for the call.

Impact was on left ear. Hearing was tested few days after and was ok.

Had mild tinnitus & hyperacusis before but that seem to aggravate it, especially the H.

My understanding is that TTTS impacts Eustachian tubes (causing dysfunction) which are the ones actually causing the ear fullness ? ?

I do not have what people describe as "ear thumping" but what I do have since is a constant ear fullness and some mild ear pain and numbness. Music sounds distorted and also I have a feeling of kind of a cold wind inside the impacted ear. All common symptoms of TTTS from what I read.

Anyone had similar incident? Did the ear fullness got better?

Will improvement in hyperacusis improve this symptom?

Also, does anyone know if a Myringotomy tubes surgery (pressure equalization ear tubes) which is common for ETD issues not related to TTTS will help to relive the ear fullness issue at least temporarily (tubes are usually good for 12 months)?

I will be going to an ENT next week to discuss my options.

 

Tensor Tympani works to open ET...exactly, you have an hypertonic tensor tympani after acoustic shock, try to avoid new auditive problem or you will have acoustic shock disorder...there's a link with TMJD...some folks believe you can cure it with music in the ear to calm limbic system...it's a bit fantasy, best way is to find balance between TT/gasser ganglion/TMJ/etc

 

What type of frequency tinnitus do you have, and is it intermittent, constant, fluctuating, beeping, pulsatile etc. And if you don't have thumps with sound as your hyperacusis, but you do have distortion, exactly what type of hyperacusis do you have? How can distortion not have a thumpish quality to it, I mean I have distortion/thump, because all external sound gets accompanied by a low frequency startle-heavy vibration, in addition to my permanent reactive tinnituses of the high and low pitched variety.

http://www.dizziness-and-balance.com/disorders/hearing/hyperacusis.htm

Dunno.

But you can email Tim Hain from that webpage, read it, he's apparently trying out ventilation tubes for H. Or you can visit him in his office, if you do so, I have a detailed set of hyperacusis symptoms I'd like you to ask him to see exactly which markers of H are being cured by tubes. You can also ask him if he's seen your symptoms and types of H get better from tubes, or encourage him to ask his patients if your symptoms of acoustic shock are getting cured by his tubes.

In the forums we've seen a few comments of tubes not doing anything, but i think those comments were for thumps-type hyperacusis. On facebook I've talked to two on hyperacusis sufferers who had tubes and were worse off, iirc it was temporarily until they fell out. On vaincre hyperacousie facebook group we however have a positive experience with H, but he went awol when I tried to dig further info out of him about exactly what type of H he had.

Also whatever you decide to do, come back and report it here, as the dropoff rate is stunning and our documentation is pisspoor and we never hear from anyone again.

 

Impacted left ear has a high pitched, reactive, buzzing T (which I understand is the common type for TTTS).
Right ear has very mild T, barley heard.
Ventilation Tubes I have mentioned are not supposed to cure T or H, just to relieve TTTS related Ear Fullness which is a phenomena that might also be caused by many other reasons (ETD, etc).

 

ZZ, I have similar problems. My left ear has the very high pitch (reactive) tinnitus and H. Also, I have occasional ear pain and ear thumping. I went to House Clinic in LA, US. The ENT told me that surgery will make my ear even more sensitive. He told me to try the SSRI drug and that was the end of the consult. I hope that your ENT has more in-depth knowledge.

 

Buzzing? What is the frequency of this T of yours? Also, totally continuous and tetanic, or fluctuating and myoclonic?

TTTS and H get perfectly mixed up because H is a shitass disorder hustled by slimeball audiologists and pyschologists. H is merely discomfort on a beep beep test in a cubicle. TTTS can amply fill its requirements for many folks. In fact, nobody even knows if TTTS exists and if it isn't just say, an enlarged cerebellum, an enlarged cochlea, or an ischemic post-hypoxic cochlea.

And so that's why Tim Hain has grommets aka ventilation tubes working for H, read him up.

Go the TTTS support group on facebook. Search for Roesems, he has a number of symptoms that were addressed by Boniain's solution and paper patching in Belgium.

 

@Z Z

Don’t do the surgery, it’s not for you.

“Ear fullness” gets better.


“My understanding is that TTTS impacts Eustachian tubes (causing dysfunction) which are the ones actually causing the ear fullness ? ?”

Where did you read or who told you this? As far as I know, the tensor tympani is not involved in opening the tube.

“Had mild tinnitus & hyperacusis before but that seem to aggravate it, especially the H.”

How was your H before your recent acoustic shock? What physical sensations did you have when hearing sudden/loud/bothersome sounds? Didn’t you hear music “distorted” as now?

“Music sounds distorted”

What do you mean exactly? You don’t perceive the dynamics as before, or you hear a piano as passing through a distortion guitar pedal?


If you answer my questions, I can give you more information.

 

Tensor tympani muscle is one of the four muscles associated with Eustachian tube functioning.
The fact is that I have never had ETD issues before, and that now my ears pop each time I swallow, tells me that the Tensor tympani muscle issue impact the ET. Ear Fullness is also associated with ETD (or the muscle that associated with it). Why do you think PE tubes will not help here ?
I do not remember hearing music distorted before.
Now some frequencies are replaced by kind of static noise, and higher frequencies have metallic sound to them.
Speech understanding is good and I do not have hearing loss (at least on the range of frequencies tested in a regular hearing test).
What other info do you have on this ?
Any idea if the tesnor surgery (long shot currently, but I may consider it) will resolve the issue ?
In my unimpacted right ear, the T is very quiet, actually almost gone. The left ear has a buzzing T which I 100% sure is due to spasamming Tensor muscle.

 

@Z Z

Well, you didn’t answer me how your H symptoms were before the acoustic shock. Why do you think it was H? I think this is important because you said H increased after the AS. First, define what is “H” for you, and then we could have a more or less serious conversation… For example, for Japongus, H is “a shitass disorder hustled by slimeball audiologists and psychologists”, “merely discomfort on a beep beep test in a cubicle”. What is it for you?

“Tensor tympani muscle is one of the four muscles associated with Eustachian tube functioning.“

This is not very specific. You are still not telling me how the tensor tympani opens the tube or could cause ETD. I am just asking you to give me the source of your information. Or is it a supposition of yours?

“The fact is that I have never had ETD issues before, and that now my ears pop each time I swallow, tells me that the Tensor tympani muscle issue impact the ET. Ear Fullness is also associated with ETD (or the muscle that associated with it). Why do you think PE tubes will not help here ? “

When you swallow, the supposed tensor tympani, the stapedius, or something around there could move and make a noise, this is common in what is usually called TTTS. It also could happen when someone with tensed TT system speaks. Why do you think this “pop” sound is a consequence of ETD? The fact is that there are a lot of noises… I have only heard a supposed stapedius recorded by Klochoff, a “click” sound. Great oldie, much better than most rock&pop music made nowadays. I don’t know if this man made more recordings like this.

I think that the “fullness” or “pressure” associated with sound intolerance is not the same as the one which we feel on an airplane, or when diving in a swimming pool. And people don’t have sound intolerance when the plane takes off. Inversely, a person with TTTS fullness can’t normalize the pressure just by chewing. TTTS pressure could just be “tension”, literal muscle tension, and it could be the tensor veli palatini which tenses up, or only the lower part of the TT, if that is possible. TTTS is hypothetically an increase in TT tonicity, but Klochoff wrote this and nobody cared to find out more physical details, because audiologists were sucking Vernon and/or Jastreboff’s balls, and regular ENTs were sending you to do the ECOG test, because when you pronounce the word “pressure” they are programmed to do so. But you tell me: is your fullness the same than when you are on a plane or diving? Also, I know that in ETD you could have muffled hearing, which is not your case.

“Now some frequencies are replaced by kind of static noise, and higher frequencies have metallic sound to them.”

Jesus… Are you sure it is not your buzzing tinnitus mixing with the exterior sound signal and confusing you? Why do you think this only happens with music, when music is just waves traveling in the air, like every sound? You don’t have hearing loss, but you have hearing “replaced”, WTF is this?

“The left ear has a buzzing T which I 100% sure is due to spasamming Tensor muscle.”

So… does your left TT make rapid clonic spasms? Or do you mean a constant contraction? Before, you only said you have “fullness”, with no “thumps”.

 

People have reported mixed results (light improvement, no improvement, or worsening) after surgeries like the round oval window reinforcement and also the grommets you were talking about. Hearing issues take a long time to settle or be understood, and you said your H and T stem from a noise shock, so there seems to be a clear cause. Surgery is unlikely to be able to fix that.

 

As I previously mentioned, the grommets / PE tubes are to help with the ears fullness, not resolve the T + H.
Anyways, I am meeting soon with an ENT Prof, hopefully will get answers, including an option for the Tensor and Stapedius removal surgery. These two are the root cause for my buzzing T + H.
In the night when there is silence the new buzzing T is absent, no ear fullness, all I can hear is my previous pre-exisiting T which is very mild and does not bother me.

 

Ear fullness is a typical consequence of H, and may have nothing to do with the eustachian tube.

 

@Juan Do you know if any improvements in H (whether just due to time or through the use of WNGs) will also see a reduction in ear fullness?
My ear fullness has subsided somewhat in recent times, although I'm not sure if my H has reduced during that time, perhaps a little bit, but it's hard to tell.

 

White noise can help, but it is very important to avoid being exposed to very loud sounds; I do not know what is the rationale or physical mechanism behind it, but the longer you are without a noise incident (defined as a sound that is loud enough to give you pressure, or a sound that is loud by any standard) and at the same time doing sound therapy and trying to go out, exercise a bit, etc.. the more settled and balanced your hearing will feel, and pressure is likely to subside. In the periods when I have noticed improvement, it has been due to diet, exercise and absence of loud noise.

Sound therapy with white noise, music or nature sounds works to some extent but cannot offset the damage made by accidental exposures to very loud noise (bikes, car horns, construction machinery etc, which are common noises in urban areas). With this I mean that, for instance, going for a run along a busy road is not a good idea, as a loud motorbike will go by and it will deafen you, and then you will have pressure and more H, maybe T as well. The same exercise, along a forest track, or along the beach, will feel fantastic, as there is a very low risk of being exposed to very loud sounds.

This is not usually mentioned but is important: step one is feeling safe at a certain place, and relaxed. It is complicated to find suitable places to exercise (as gyms are usually very loud) or even go for a walk, but being in nature, walking through a forest, or along the seashore, without earplugs, feels great. Some people do not like the sound of waves, but for me the sound of the sea when it is calm or when there are little waves is soothing and more effective than white noise.

 

They've reported considerable improvement, some even a lot of improvement, slight improvement, no improvement, or worsening. If we had more stories of surgeons fiddling around the middle ear like Silverstein and less sadistic visits to philistines like Jastreboff and suicide stories, we'd know even more.

 

My H is signal sound, as opposed to noise sound, H. It consists of thump/vibration with every new sound. As such it's vastly different from other types of H. My type of H has a drastic impact on my life, all of my type of H get bullied by the Jastreboff fanboi club into submission so there are few stats about it. But unlike so many other people with H, I don't walk the streets with ear defenders. Unlike them however, the slightest sound wakes me up and makes me lose my concentration because vibration and thump happens. Does this happen to you @Z-Z

Also, I have high and low pitched T, and the T changes when there's wax on the eardrum. And someone in the facebook ttts group had their H alleviated with paper patching. Their H was very similar to mine and my issues with keyboards and light switching and sudden sounds. So the middle ear is obviously involved. So it could just be reactive T, H could just be a myth.

 

The uni prof probably won't know anything. Ear tubes have indeed been linked to H resolution by this doctor http://www.dizziness-and-balance.com/disorders/hearing/hyperacusis.htm

 

I do not have vibrations or thumping at all.
My main issue is ears fullness which in the onset I thought is due to ETD issues (which I never had before) - hence thinking about ear tubes, but found out it is due to H - sound filling the ear . Quiet room - no ear fullness.
This actually got just little better in the last two weeks when I stopped avoiding relatively loud places like malls, and started to use the car radio again. To my surprise after few such days my ears fullness is little better.
The price to pay for the increased sound tolerance is increase in my annoying buzzing T in the left ear. Not sure why my brain can't accommodate to this one like to my initial T which subdued and almost gone within 3 weeks.
BTW, in our meeting, hospital ENT Professor claimed I have "anxiety issues" and offered to prescribe Antidepressant. He did say a surgery is an option - he did some before - but said he needs to verify my "anxiety" is under control first.
As someone who barely takes Tylenol I do not plan to get addicted to these drugs.

 

That's because he's a moron. In H this isn't Galileo fallacy at all, H'ers have no identity politics.

Fullness has also been addressed with tubes, but for another reason, for fistulas apparently. Anyway, glad it's better for you.

 

It is true that there is lack of reliable data on the outcomes of surgeries aimed at fixing H or making it less troublesome. But surgeries related to eustachian tube troubles, or grommet surgery, have been common for decades, so I dont really see why there arent more papers published on it, connecting it to H. Maybe those surgeries are mainly used in connection with wax or conductive problems, basically to drain out wax or fluid that gets stuck on the ear tube.

 

There are though, that's what's so scandalous. Tubes have been linked to both fistula and PET, and finally recently finally to H by the Chicago doctor. But it's worse. If you look into surgeries for other conditions like PET or fistula or fullness, you find H pop up every now and then, a small percentage of people every time. The thing about H is none of these doctors test for it, they didn't even test it in tinnitus clinics 20 years ago, back when tinnitus clinics thought hyperacusis didn't exist and they had something like 2 H patients for every 10000 tinnitus patients, so why would they test for it elsewhere. I'm convinced H isn't a threat response or any of that nonsense, I'm convinced it's part of ear conditions, both known and unknown, both easy to diagnose and hard to diagnose, that are already being treated.

 

Discussing with the ENT doc, I was referring to the spasming muscles surgery, not PE tubes, which looks to be root cause at least for me, for my H and increased T. I did not have H until my acoustic incident.
As I wrote he said it is an option but only after trying drugs / AD treatment.
japongus - did you consider the muscles cut surgery ?
Anyone hear with TTTS like syndromes got cured, or at least better, by eliminating their H ?
I read some posts of people getting rid of their H. However, H is only a symptom of a specific underlying condition. How can you get rid of H without treating the underlying condition ?

 

By "muscles cut surgery" I understand you are referring to an stapedectomy. Why would that make sense to treat H, if the stapedius muscle is precisely the muscle that dampens sound delivered to the inner ear?

 

I considered it and still think about it. There were debates about it last decade at chat-h. Astrid had a bad experience, Trashboat had a weird experience, while lib, joem, vasilia and others had good results. Others had no results, maybe slightly bad results. I didn't go forward with it because I live in silence these days and for now don't want to risk it. H did indeed come up in some of these patients, purely because H is merely defined as discomfort on an LDL test, and if so many of these patients felt vibrations in their ears when switching a light off and on, or when typing a keyboard, it boggles the mind how they could ever get high LDLs on an LDL test. And for all the talk of billionaire research into H, the proof that the H community riddled as it is with non-surgeon audiologists and ''cognitive'' shrinktards, is a munchass piece of shit is it's never gotten these post-tenotomy patients in a room together like Silverstein did with round window procedure, to discuss what symptoms are curable by tenotomy and which ones aren't. Instead these stories constantly get gaslighted because they go against Jastreboff dogma.

It is rumored some practicing doctors might know more, I mention them in the next post, so if you go see them contact me so we can go over key issues. I visited one in Greece last year, the one that'd done vasilia and lib, and wasn't concise enough in my questions to clear up the doubts I have about this surgery.

 

Whether the middle ear is in fact H is subject to debate.
http://hyperacusisfocus.org/middle-ear/ --- it's possible.
Recently had conversation with Marsha Johnson and she denied the link with H.
But if you download this study https://www.ncbi.nlm.nih.gov/pubmed/23918695 from libgen, you'll see half of the patients claim to have ''subjective hyperacusis''. Are the phoney-ass London conferences on H that cost 500 quid a pop bothering to look into this? No of course not.
This study http://scielo.isciii.es/pdf/medicorpa/v12n2/03.pdf claims the tensor tympani presses on the inner ear.
This one https://www.researchgate.net/public...tion_of_the_intralabyrinthine_pressure_theory claims middle ear muscles exert pressure instead of protect the inner ear.
Practicing doctors right now that might know more are Harold Kim and Christopher Chang. Kim is mentioned elsewhere in this forum, reportedly he made a few claims, but we don't know how detailed his experience is. Chang wrote this article http://www.fauquierent.net/earclicking.htm which seems to cover many of the doubts and bases I've been stuck on for a couple of years, he says there's no way to definitively find out, his clicks become vibrations, they can be solely provoked by sound, they can be permanent etc. The issue with doctors like this is to find out whether cutting those muscles is safe, and whether it does apply to H, and if so whether it applies to spasms that only come up with external sound instead of say, spasms that are both the same in silence as they are with external sound, whether they apply to cases where there's a permanent vibration going on and a thump with every new syllable, or whether that is another type of damage etc.
There is also a patient in the ttts facebook group who just applied paper patches to his eardrum and had the same ''sensitivity'' and ''intolerance'' to external repetitive sounds like light switches and keyboards that I have, and the patches reduced the issue a lot.

 

Anyways, you don't have thumps. I do so I've focused on that. You can always go over the links I gave you and the debates at chat-h and healthboards from the usernames I gave you, to see if ear fullness is covered or not. I'm not sure if I have fullness or if it's just a permanent vibration, and anyways it's not my main concern which are the thumps. Tell me, if your H does not consist of thumps what does it consist of?

As for fullness, look up the different uses ventilation tubes have been used for. They've gone both for the tubes and for meniere's disease, and now for H. If you scratch the surface you find out all the doctors come up with weird theories for every little thing. Look up whether fullness is part of these symptoms and papers. In one of them, fullness was reported to be due to homeostatic issues in the inner ear, and the tubes supposedly helped that. What does that mean fuck knows.

 

My H consists of huge uncomfortably with what seem to be every day noises, specially in higher freq.
And, of course, the constant ear fullness, ears popping, plus buzzing annoying T.
I will give it some more time, but I do not see my condition improve consistently apart of day or two, then relapse. I am trying pink noise now, does not seem to help and just bothers me more, even in low vol.
Thanks for the links.

 

Are you able to do daily activities without using hearing protection (earplugs or earmuffs)? Things like shopping, driving around, cooking, etc

 

Yes, I have normal life, trying not to avoid places that have relatively loud but not dangerous sound levels like malls etc. I do carry ear plugs for any surprises. My H does looks to be little better as time passes.

 

Then you are on the right track. Do not worry about surgeries if you can carry on with daily activities without major problems.