Approaching Two Years, Still No Better — A Strange Case of Hyperacusis and Mild Tinnitus

[Shizune]

Hi all,

I joined Tinnitus Talk a bit ago when I was in a very bad place mentally and had to step away for a year. I have a strange case of hyperacusis brought on through non-typical means and it's only gotten worse and worse. My tinnitus is still thankfully mild but new tones get added at what seems to be the drop of a hat. As with many, my case gets worse with every single noise exposure, every attempt at desensitization. Supplements will work but then will stop working/make it worse without warning. I can't even take magnesium anymore. Protection barely does a thing either now.

Currently I'm going through the motions of seeing doctors just to get some documentation for applying for disability. Definitely brings me back to a bad place when this all began. Though doctors can now recognize my severity, it's still encouraged to be solely a mental health issue and they still will not acknowledge the event that brought this on. People considered the top doctors in the country are saying this. It's astounding.

I might have to bite the bullet and try tricyclical antidepressants, as the last ENT said hyperacusis starts in the same area of the brain as depression (I don't even know if this is true), and I might try TRT. I'm not thrilled and I'm not convinced, especially since the audiologist's advice to not use any hearing protection only made me worse. But any documentation or proof that I've tried is worth something right now. It is just a shame that I have to go through so many setbacks just to get it. I had another major worsening because of a recent trip to the city just for a useless appointment. SSA probably will not approve it anyway in the end, either. Also, my family will not let me back because they do not want to deal with my hyperacusis. So now I've been couch surfing. Though I try to ignore it, I sometimes stop and think just how ridiculous this way of life is and it's hard to grasp that this is actually happening.

Tinnitus and hyperacusis are soul crushing. So much can be taken from you in an instant. I know I'm preaching to the choir here when I say this. I hope everyone can hang in there and hopefully one day we can get some answers to all this.

 

[MindOverMatter]

Also, my family will not let me back because they do not want to deal with my hyperacusis. So now I've been couch surfing. Though I try to ignore it, I sometimes stop and think just how ridiculous this way of life is and it's hard to grasp that this is actually happening.

Sorry to hear you're struggling with this. I know the feeling, but even though you are 2 years in, there is still hope of getting better.

You need stability around you with this condition, and it makes me sad hearing that your own family seem to have abandoned you? In fact, it's very upsetting to hear when this is when you really need your family. In normal circumstances.

Stay strong!

 

[Shizune]

Sorry to hear you're struggling with this. I know the feeling, but even though you are 2 years in, there is still hope of getting better.

You need stability around you with this condition, and it makes me sad hearing that your own family seem to have abandoned you? In fact, it's very upsetting to hear when this is when you really need your family. In normal circumstances.

Stay strong!

Thank you. It's hard thinking about those who have struggled with hyperacusis for over a decade and not think that I will end up like them. But I hope something can change, even just getting back to my early hyperacusis days would be good enough for me.

And yes, it's a long story but it really broke my heart. I am glad I have caring friends but I can't help but feel guilt that I have to invade their life like this and get passed along to person after person, because I agree that family should be the ones who are there. I still think they don't understand it either.

Thank you for your kind words!

 

[UKBloke]

the last ENT said hyperacusis starts in the same area of the brain as depression

I'd be inclined to grill the ENT for the research papers that back up that statement, especially if they're now punting tricyclical antidepressants. Sorry to hear you're struggling. It can be a bit of a crazy road we navigate, three steps forward, two steps back.

 

[nogg]

I am not aware of any scientific proof of the exact mechanisms for either tinnitus or hyperacusis. There are theories, and some are good, but that is different from actually knowing. But if nothing else has worked, you might need to try ADs.

What have you done for desensitization? For severe cases, it must be done very carefully and slowly, usually with wearable sound generators set to minimal levels, or with no sound at all to start. TRT (which is education and sound therapy) is mostly concerned with tinnitus. Hyperacusis does fall within the TRT umbrella, though it is mostly the use of sound generators for desensitization. My experience with a TRT audiologist was not very good, so finding one who really does have experience and success is important.

Hyperacusis has been a long-time demon for me. Fortunately, I have always been able to work, though it was a constant challenge. It is certainly worth pursuing health providers that have experience, and that mostly doesn't seem to be ENTs, at least in my experience. This is one group that I found on YouTube that seems to have experience with hyperacusis and is something you might look into. I have no firsthand experience with them, but I would suggest taking the time to go through their videos.

 

[Wrfortiscue]

I'd be inclined to grill the ENT for the research papers that back up that statement, especially if they're now punting tricyclical antidepressants. Sorry to hear you're struggling. It can be a bit of a crazy road we navigate, three steps forward, two steps back.

Yeah, they truly don't know. That's why.

 

[Wrfortiscue]

Sorry to hear you're struggling with this. I know the feeling, but even though you are 2 years in, there is still hope of getting better.

You need stability around you with this condition, and it makes me sad hearing that your own family seem to have abandoned you? In fact, it's very upsetting to hear when this is when you really need your family. In normal circumstances.

Stay strong!

Weren't you in a similar place with hyperacusis? I think you were extremely severe and recovered somewhat?

 

[Michael Leigh]

Hi @Shizune,

You have been suffering for quite some time with your symptoms and not getting any relief, despite seeing many doctors.

Hyperacusis is usually (but not always) associated with exposure to loud noise with the person often developing tinnitus. It can improve by itself over time or using self-help. Depending on its severity, professional help may also be required, which will involve being under the care of an audiologist. The regular wearing of white noise generators will help to treat tinnitus and hyperacusis by desensitizing the auditory system's oversensitivity to sound. Counselling with the audiologist is recommended.

In your case it would appear the hyperacusis may not have been caused by exposure to loud noise even though you have tinnitus which is mild. The hyperacusis could be related to an underlying medical condition that hasn't been picked up by your doctors, or caused by the chemical exposure (toxic aerosol) that you refer to in your first post back in August 2020.

I believe it is important to know what originally caused tinnitus or hyperacusis, then if possible an appropriate treatment can be sought.

If no underlying medical problem is causing your symptoms, it's probably a good idea to try and find an audiologist that specialises in TRT or CBT as this is probably the best way forward for you. I have had TRT twice with good results. Understandably you are under some stress so medication in the form of an antidepressant maybe required, since tinnitus and hyperacusis can affect a person's mental and emotional wellbeing a lot.

Hope you are able to find some help soon.

All the best,
Michael

 

[Shizune]

@nogg and @Micheal Leigh, I apologize for the long-winded explanation:

While I want to believe that TRT can help for some cases of loudness hyperacusis (which I still primarily have, though it's extremely severe with occasional pain), there is a lot of conflicting advice with it it seems. I've seen people whose audiologists told them to protect from loud noise at first but otherwise desensitize as time goes by. Mine? Did nothing like that. And oh how I wish she did...

She said noise can't hurt you, don't use protection, go ahead and listen to music using headphones, your ears aren't damaged, don't believe what's said online. I immediately got worse after being exposed to motorcycles, car horns and the like, over the course of a week. I messaged her recently but I am very skeptical to go back to her. Also the kicker, she said in our appointment notes that my worsening was BECAUSE of overprotection, even though I wasn't even using hearing protection at all at the time! I've also tried to do the thing where I ignore noise and tell myself it's fine and can't hurt me. I still get worse regardless.

I have a very multi-faceted issue as Michael said. It's been a shame too because it seems it hasn't been acknowledged with most doctors and most don't care to explore it when I give them information about it. I attribute my issue to a combination of brain and ear damage. Of course, go to a neurologist, they know nothing about the ears and don't care about that part. Go to an ENT, they only care about the ears, don't have much to offer about the brain. Very frustrating.

I used pink noise with earbuds and, though relaxing, I was very sensitive after the fact. When using protection, I never have that same sensitivity afterwards. My sensitivity increases only through noise exposure. I also tried to do exposure through natural rain sounds, fan with a white noise setting, and it sadly spiked me too. I also got one of those sound machines you see at therapist offices and I nearly lost my balance when I turned it on. Could not handle it.

I have to partially attribute my worsenings to the occlusion effect though. I got a pair of custom earplugs made back in October 2020 that barely reached into my ear canals. I found myself more sensitive and kept getting worse and worse while using them, then stayed at a baseline after I stopped, but then of course was so sensitive at this point that noises at 40 dB could do harm to me.

Medical conditions are still a big mystery. I took a bunch of Lyme disease tests with mixed results. The timeline of when I may have gotten Lyme and my symptoms of hyperacusis don't match up. And I have no other Lyme symptoms. I was skeptical to try antibiotics since Lyme wasn't certain, but surprisingly enough, my hyperacusis felt a bit better after. Who knows what that means. Progress was soon wiped out with noise anyway though. I visited a rheumatologist for blood tests today but I can't imagine much will come of it without other symptoms.

The balance of exposure and protection is going to be very hard to do at this point at my severity levels so I'm a bit at a loss of how to go about it, and the house I'm living has a lot of surprise noises. To give an idea of my severity, I cannot even tolerate my own voice. I also hear that pink noise is less harsh than white, which is why people opt for it. But do pink noise generators even exist? And of course I fear that the audiologist will not acknowledge my worsening because of her advice. Or if I do end up on the ADs and worsen, same thing. I'm very sensitive to most medications and supplements and it seems they only give me the bad side effects and few of the benefits. Or start off good and then do a complete 180.

I used to be a very depressed person before getting hyperacusis. Even though it sucks to have it, I've become more positive (in some ways) and I feel more at ease staying inside a house anyway. I try to ignore things and go about my business, but even if feeling happy or sad, my hyperacusis and tinnitus stay the same. That's why it's frustrating to hear the ENTs say I have "untreated depression and anxiety and that's why I have it" when I've had it most of my life and never had these issues until that one incident, and even if better off mentally, they still don't believe it.

I hope that sums things up well enough. I want to believe there is a way out of this but I fear a long road ahead without much progress...

 

[Exit]

I've heard good things about tricyclical ADs but also about a lot of side effects.

On my list.

 

[nogg]

Unfortunately, there is no treatment that is 100% successful, and you must consider the possibility that you are one of the untreatable cases. But, I wouldn't give up yet.

My only suggestion would be to try sound therapy using wearable sound generators and use good earmuffs over them. The earmuffs would protect from unexpected environmental noises and the sound generators would work towards desensitization. I suggest using the earmuffs with sound generators while turned off for maybe a few days or a week. That would give you a baseline for any changes. Then turn on the sound generators but only loud enough that you could just barely perceive them. Use them for 10 minutes the first day, then add 5 minutes each day if things go ok. If after a while you can tolerate that, then increase the time increments: maybe an additional 30 minutes each day. If things continue to do well then work up to wearing them all day. If you find you can use them for, let's say, 30 minutes a day but longer periods cause problems, then just stick with 30 minutes a day for perhaps a few months before trying more. It seems that you have a difficult case so progress could be very slow.