Two Years In with Hyperacusis — Progressively Gotten Worse, Not Sure What to Do

Hi folks,

After developing hyperacusis 2 years ago, it has progressively gotten worse and worse.

My timeline is as follows:

• April 2020 - Develop minor loudness hyperacusis with little to no implications on everyday life.
• April 2021 - Loudness hyperacusis gets slightly worse but still has no huge implications on everyday life.
• December 2021 - Loudness hyperacusis gets more severe (around 55 dB in the left ear, a bit more in the right ear) and very mild noxacusis develops.
• May 2022 - Loudness hyperacusis is the same, that sunburn feeling from noxacusis is more easily triggered.

Looking back, I can't help but feel angry at the general medical advice on hyperacusis. When I first developed hyperacusis, I didn't know about these forums and found some websites which basically say you should just live as if it isn't there. I know for a fact that my hyperacusis was caused by listening to loud music on powerful headphones and I should have taken a year of auditory rest or so when first developing symptoms. Even when visiting an ENT at my current stage, they suggest using headphones to listen to music if places are noisy. It's like they just don't get it at all.

One thing I've noticed from frequenting these forums is that I don't really get the temporary setbacks that some people talk about. When I get a setback, it's usually a huge setback that doesn't seem to reverse rather than something that lasts a few weeks. Annoyingly, the past few weeks I thought it was all uphill from where I am and got myself into a good mental state. I thought I had learned what to do and what not to do and it would eventually get better. Then, after getting into a mindset of optimism which was very difficult, my latest setback came last week, and now it's hard not to get depressed. Annoyingly, I know what caused my hyperacusis and my first setback. I can't say the same about my last 2 setbacks which makes it difficult to pinpoint what I'm doing wrong.

Anyway, to be honest I'm not really sure of what the point of me writing this out is. I suppose sometimes it just feels good to write things out and have a bit of a rant. If anyone has any advice which might help me then that would be appreciated. I'm not yet at the point where I can't go outside or talk to people, so perhaps there is still some hope but I'm just not sure what to do to get better.

 

Hi there, I'm in the exact same boat, and our timelines are very similar. Made the mistake of following audiologist's advice, didn't know what to do at all with all the conflicting info. Like you, I was told wearing headphones to listen to music was ok and that I need to form 'positive associations with sound'. What a joke. I've only gotten worse and all my setbacks seem to be permanent. No amount of calmness or positive thinking has been able to reverse this.

I wish I had more advice on what to do but I'm stuck there with you. I'm going to try TRT soon and tricyclic antidepressants but I have little faith, because clearly there's a lot more going on with us. I'd say since we both have loudness hyperacusis we might have a better shot at recovery but there's no guarantees really. This is such a weird condition for just about everyone and no two cases are alike it seems. Not only is it hard to navigate living through it, it's also hard to navigate the medical system with it. Finding a doctor who believes in hyperacusis is hard as is... Finding a doctor who believes in hyperacusis, is up to date with research, and open to thinking that it's an auditory problem and not a psychological one, they seem to be unicorns.

I am curious if you have hearing distortions with electronic audio and what your tinnitus is like. Also what your day to day life is and if you use protection at all times or not, etc.

 

Regarding my tinnitus, it's not so noticeable. It does seem to be reactive though which is worrying. If the noise that is causing my tinnitus to spike is also making my hyperacusis worse, then I'm probably not really in such a good position for recovery.

Regarding distortion, I don't experience any so I cannot make any comments on that.

Before my last setback last week, I didn't really wear noise protection except being in a bar that was really blasting music. I truly believed I was starting to get better as there were fewer social situations bothering me and I didn't need earplugs for public transport etc. With my latest setback, it seems the number of decibels that I can handle has not dropped noticeably. But from typing on my keyboard, I get almost a numbness feeling down the right-hand side of my face... I believe this is more related to pain hyperacusis or noxacusis than loudness hyperacusis.

So here I am.... No idea what is the next best step. It seems that going on with life has only made my symptoms worse to the point where going on with life might not be an option.

 

If a few hundred people dealing with this have to suffer to the point of jumping off the planet, it makes very little difference to ENTs and audiologists. They can keep selling their hearing aids and giving bad advice to people like us. People recovering from hyperacusis makes them no money in the end, so why would they bother taking it seriously?

 

It makes me wonder if tinnitus specialists frown on treatments as it will reduce their patient list... sucks lol.

 

They might take this approach for the tinnitus population which includes millions of people but not hyperacusis which may have less than 10,000 people in the entire country.

 

They must all exist on this forum then haha.

 

Same for me, my tinnitus is reactive. I'm wondering too if you get "imprints" of sound on your tinnitus. Like say you hear a vacuum or a very annoying alarm sound, will the sound of that become part of your tinnitus tones temporarily? I get that along with reactivity, not sure if that's a hyperacusis thing or what.

And yeah the numbness of the nerves sounds related too. Of course, good luck trying to get a doctor to believe that... even if it should be obvious.

I'm surprised you were able to get out to a bar with hyperacusis. It really is awful being punished for enjoying life. Have you tried any supplements so far?

 

I have tried many supplements but none really seem to help.

I'm taking B12, Ginger, Turmeric, Lion's Mane, Ginkgo biloba and have tried others in the past.

I always wondered if supplements were BS, to be honest, but now I think it might just be me. Even before hyperacusis, I never noticed any effects of taking supplements. I'm wondering how much the effect of supplements is reliant on placebo.

 

Yeah most supplements don’t do anything. They are only really good if you are deficient, and maybe have some long term effects.

 

What do you guys think about this article:

Causes and treatment of hyperacusis

I can see the GP defending the healthcare professionals, and I do kind of sympathise with that to a degree. At the same time though, my own experience with the NHS here in the UK has not been brilliant. So there are definitely two sides to this.

One of the main problems I've had this past couple of years has been to get an accurate diagnosis of this condition that means certain low intensity sounds can make me wince.

I see that hyperacusis (as stated in this article) is thought of as a sensitivity to all sounds. I don't have this. But I do have sensitivity to things like bedsheets whisping over me, or crinkling of plastic packages for example. It can be very disconcerting as you all know.

In this article he's saying this kind of reaction is misophonia or soft sound sensitivity. But is this still hyperacusis? All very confusing.

 

Hyperacusis and misophonia are very different.

My understanding is that misophonia is an emotional response to certain sounds e.g., people chewing, chalk on the blackboard etc. It can invoke quite a strong feeling of disgust, anger or other emotion.

Hyperacusis is an intolerance to loud or high frequency sounds. For instance, my left ear can only handle around 55 dB which is not much at all. Hyperacusis can also lead to lingering pain like sunburn or someone stabbing you deep in the ear.

 

You mentioned numbness down the side of your face. Do you ever experience an achy jaw at all from sound? If so, it's possible you may have a middle ear pathology involving the tonic tensor tympani muscle and the trigeminal nerve.

On another note, quit Lion's mane - it's high histamine and histamine is not conducive to middle ear healing (if implicated). Also, try ionic liquid magnesium if you haven't already. If you see any relief or benefit it may partially indicate some kind of middle pathology (albeit no benefit doesn't exclude the possibility).

 

Yes, an achy jaw is one of my primary symptoms. Also tingling in my ears and the side of my head. Every now and again a stabbing feeling coming from deep in my ear as well.

 

If you don't mind me asking, what is the link between liquid Magnesium and potential issues with the middle ear? Also, what is the recommended dosage? I have nothing to lose so may as well try it at this point.

Also, after looking some more into 'tonic tensor tympani muscle and the trigeminal nerve' as you suggested, I am finding my symptoms to match rather well with these. I am definitely going to visit my doctor and look into this further. Many thanks for pointing this out.

 

Magnesium is a natural muscle relaxant. If the tonic tensor is in spasm or overworked, it can help to relax it and calm it down. Many of us have seen benefit from it, some marginal, others more so. As for it being ionic liquid form, that's because that's the most absorbable form you can get it in, as not all Magnesium supplements are equal. In fact, many are rubbish. The difference between the first and second Magnesium supplements I tried were night and day.

As for the relationship between the tonic tensor tympani and the trigeminal nerve in the context of hyperacusis, see this paper.

 

Thank you so much for this information. Regarding histamines, would taking anti-histamines potentially help?

 

Some people anecdotally have tried anti-histamines with little to no benefit, but there has been the occasional story of something like Benadryl (not recommended long term as it crosses brain-blood-barrier) helping noticeably. The problem with anti-histamines is that they are usually selective for specific receptors. What this means in practice is that although you are blocking one receptor (say H1), you will inadvertently make more histamine available for another receptor (say H2, H3 or H4). So if a tissue in rich in more than one receptor, a selective antihistamine isn't likely to do anything.

The only real avenue for reducing histamine in the body is something like a low histamine diet, as it reduces histamine globally as opposed to selectively, and there have been two people in the community who saw complete remission of their hyperacusis on a strict, low histamine diet - both were able to come off it and return to normal eating after about 3 to 6 months. It's really hard though. @Marin also saw benefit on a fresh meat carnivore diet, which is effectively a low histamine diet as well.

 

Your first setback was due to those trauma. Your later setbacks are just due to your hyperacusis, to having "hyperacusic" ears. You have a hearing injury that cannot be fixed, like I do. Your story resembles mine.

Follow a healthy diet and do exercise. Do not eat junk food. Go to the physiotherapist.

Stay away from useless medication.

Stay away from loud sound from now on.

 

I am just curious. What would a physiotherapist do for a person with these conditions?

 

They treat the physical symptoms. Irradiated pain in temples, neck, shoulders, back. They address the trigger points connected to the ear, the jaw.

They cannot fix the physical cochlear injury caused by noise trauma, the incident that triggers hyperacusis, and they cannot cure it either.

 

I might have a twinge of pain for a few seconds in my ears every few weeks, but I have generally not experienced pain as a result of the hyperacusis. I do experience various sounds (especially at certain frequencies like running water and squeaky wooden floors, etc.) as uncomfortable and annoying.

 

I did have lingering pain for weeks and, sometimes, months.

 

@KDMG, same here, 1 year and got worse, without no apparent reason. I am mostly homebound.

What helps: SNRI and cyclic antidepressants. Some days I almost feel normal, but the side effects are not easy to tolerate at all (I won't go into details, sorry, please google them).

I cannot speak, my voice hurts me and I don't see any progress at all. 6-8 months ago I could do a lot more things than now (go to parks, quiet restaurants).

 

Did that get better as you experienced more hearing loss? I recall that your hyperacusis may have receded, but in exchange you had more hearing loss.

 

Pain is not as extreme... evolved towards "dull" pain, headaches... and in the last 2 weeks tinnitus is behaving badly.

But the long-term trend is a hearing deterioration, which worries me.

 

How long have you had the tinnitus and hyperacusis? Are you having hearing tests that confirm this hearing loss or are you just noticing it on your own?

 

I have had it for a long long time... many years.

Hearing loss shows on hearing tests. I get audiometric tests (routine ENT visits) at least 3 times per year.

 

Do they do a loudness tolerance test? I have informed several ENTs that I am not able to tolerate that test. I have an appointment with a new ENT on Thursday who apparently successfully treated a psychiatrist who had hyperacusis and tinnitus. They want to do a hearing test because the last one is over six months old. It will be my fourth hearing test since September of 2020.

 

They did. It was more or less ok, a bit of pain with some beeps... My hyperacusis was at 50 dB in most frequencies, pretty bad.