Hyperacusis treatment-- what works?

I'm sorry you're dealing with all of that. Thank you for taking the time to write. Yes, continuing to find help is a must!

I literally just woke up with clogged Eustachian tubes an tintinitis 4 years ago. Hormone therapy got rid of it then came back. Got diagnosed with some hearing loss hearing aids helped some. Now it’s back bad. Anyone take supplements that work?

Here’s what I’ve read about hyperacusis but I don’t think there’s help out there for those of us who suffer from it: “The tensor tympani is a muscle within the middle ear, located in the bony canal above the bony part of the auditory tube, and connects to the malleus bone. Its role is to dampen loud sounds, such as those produced from chewing, shouting, or thunder. Because its reaction time is not fast enough, the muscle cannot protect against hearing damage caused by sudden loud sounds, like explosions or gunshots.”. When a big truck passes me by I only wish it sounds something like a jet taking off!

ooops, mistake! only wish it didn’t sound like a jet taking off!

I don’t think there is a complete cure for hyperacusis but a tolerable level of sound or noise can be achieved by gradually exposing the person to sound that is just a tiny bit louder than they feel comfortable with. Over time the sufferer builds up,a tolerance for sounds that today might seem to be above their tolerance level.
On a lighter note, we have a new toilet that is a super flusher but, OMG the noise it makes is enough to wake the dead. I have to keep ear muffs on the toilet tank top and clap them on my ears before flushing. Needless to say, it’s in the ensuite bathroom so it awakens my husband or me depending on which one of us is asleep. Why can’t manufacturers of devices find a way to insulate these things?

Do not give up hope!
I struggled for a lifetime, never being diagnosed and basically treated as an idiot or overly sensitive.
Due to current medical issues, I finally found diagnosises and help. And recognition: professionals saying "You must be a zen ninja warrior, able to function with hyperacousis & visual overdependency living in a city" .
Since only a few months, I have been receiving treatment for hyperacousis and it feels like a miracle!
Dr Boedts has developed a system where he places patches on the typhan to relax it. The day after my first patches, I passed a building side with heavy metal sounds.. And I could easily cope. My sleep got instantly better.
The patches dissolve after a few weeks and need to be replaced, until the nervous system comes out of hyperalert and rewires.
He combines it with trascutane electrostimulation of the brain (12 sessions in 5 weeks) and temporary medication (I decline that option, as can handle through meditation & yoga). If necessary, as in my case (severe TMJ problems due to an accident), the clinics orofacial therapist a.o. puts electrostimulation on the trigeminus nerve to relax it. She also showed me more efficient selfmassage techniques to release the masseter muscle.

Additionally, I got diagnosed with visual overdependency, which I feel is linked so doing treatment for this at the same time.
And working with a Feldenkrais & BMC practicioner.

Honestly, it is a miracle.
So I wish for you to find similar treatment near you ( I am based in Europe, Belgium). Or come over for a few months!

I wonder if we have such treatments in the US? Like others I have struggled with Eustachian tube dysfunction , hyperacusis, tinnitus and some hearing loss. It is a difficult balancing act to use hearing aids to help with hearing loss and tinnitus, BUT not make the hyperacusis too much worse. It is frankly impossible. I would travel for treatment but because of my ailments, I cannot fly.
Conundrum for sure.
So far I use the hearing aids on a fairly low setting, and periodically slip them out to give my ears a break.
My situation began six weeks after having Covid. That was two years ago. Like everybody I have seen all sorts of doctors and specialists.

I am intrigued as I have recently developed significant hyperacusis. What type of patch does Dr. Boedts use? I realize that we may not have the same treatments available in the US, but am very curious about the entire treatment regimen.
Thank you.

Dear Ellen,
Dr Boedts has developped these patches himself, with other researchers at Gent Uni & Hospital I suppose). I only know they are made out of material that dissolves naturally in the body, which is why the process (5 minutes) needs to be repeated. Normally he combines this with A. temporary medication (0,5 benzo and 0,5 antidepressant, I forgot the name but it is a new kind which has effect within a week), B. Transcutane electrostimulation of the brain, C. Orofacial therapist who also uses a form of electrocurrent to release trigeminus D. Psychotherapy.
He also works with a clinic Brai3n.com for severe cases.
My own experience is limited to the patches and electrostimulation.
From what I read online, there are many different types of electrostimulation available and it seems the USA is ahead of Europe. Which is also the case for visual therapy, such as I take for the visual overdependency.
Personally, I am also supported by my meditation practice and lots of workshops, trainings on yoga, nervous system,... However, I am now working in person with a therapist who combines Feldenkrais with BMC (Body mind Centering) and that is an amazing process: I feel more grounded and learn how to open up spaces in my head... Which is lowering symptoms and the "alertness" in a dramatic way. I believe this type of therapy is also morw widely available in the US than here.
I did a lot of online Feldenkrais classes with a US-platform movementandcreativity. Com. Possibly my body reacts so fully to this in person treatment with touch because of this basis. Maybe MovementandCreativity can direct you towards a practicioner?
Or maybe your doctor could contact Dr Boedts, Luisterkliniek Gent?
Truly hopes this helps you too

Dear DLoos,
I really feel for you.

Dr Boedts vision on tinitus etc is that there is often a physical starter (in your case the virus, in my case the mandibular condyles being trashed) which leads to "over-alertness".
Our hearing system incl the muscles around the mandibula are never "off". Even when we sleep, part of our nervous system remains alert for potential danger.
And with an extra physical issue and/or stress ad/or sensitivity due to unsafe childhood or other factors, the system goes in overdrive and cannot get back to homeostasis, a relaxed state.
This is why he combines working on the symptoms (patches on overtense tympan, fisio) with brain and nerve stimulation to truly reconnect the neurotransmitters (sorry, can't explain, it is something about repairing brain connections and cells and relax).

From the research I did, many "treatments" are more readily available in the US than in Europe (where they are not re-imbursed btw).

* Only the patches: Dr Boedts, Luisterkliniek Gent has developped these patches himself. I only know they are made out of material that dissolves naturally in the body, which is why the process (5 minutes) needs to be repeated.
Normally he combines this with A. temporary medication (0,5 benzo and 0,5 antidepressant, I forgot the name but it is a new kind which has effect within a week), B. Transcutane electrostimulation of the brain, C. Orofacial therapist who also uses a form of electrocurrent to release trigeminus D. Psychotherapy.
He also works with a clinic Brai3n.com for severe cases.
My own experience is limited to the patches and electrostimulation.
From what I read online, there are many different types of electrostimulation available and it seems the USA is ahead of Europe.

Which is also the case for visual therapy, such as I take for the visual overdependency.

Personally, I am also supported by my meditation practice and lots of workshops, trainings on yoga, nervous system,...
And recently face yoga, with someone really good, explaining uscle groups, not a shouty twenty something talking about wrinkles. She teaches online, in Spanish, if that would help.

But mostly, I am now working in person with a therapist who combines Feldenkrais with BMC (Body mind Centering) and that is an amazing process: I feel more grounded and learn how to open up spaces in my head... Which is lowering symptoms and the "alertness" in a dramatic way. I believe this type of therapy is also more widely available in the US than EU.
I did a lot of online Feldenkrais classes with a US-platform movementandcreativity. Com. Possibly my body reacts so fully to this in person treatment with touch because of this basis.
Maybe MovementandCreativity can direct you towards a practicioner?
When I was totally down and out in 2023 and could not cook or do yoga (vertigo), I did hours of their online classes, just to get back into my body, and move slowly and stop worrying.

Oh, I also recently got a plastic thing (opbeetplaat, gouttière in my languages) to put on my lower teeth at night, at home. I do not have bruxism, but it does seem to reduce tension in the jaws, which in turn reduces tension in the ear, migraine etc

Truly hopes this helps you too