From Loudness Hyperacusis to Pain Hyperacusis — No Enjoyment of Music or Sounds

[DaniAmi]

HI there. I am a 33-year-old guy from Sweden. I have, like many, a history of listening to loud music on earbuds since I was 14-15.

The first time

I first got my first case of hyperacusis (loudness) in May 2017 after falling asleep to a video playing sine waves on YouTube.

When I woke up the next morning, some frequencies of certain voices were distorted, I could not comprehend speech, especially lower male voices.

I got desperate and I also noticed that everything was much louder (the gain had increased), I could suddenly hear the neighbours dog above me much louder than ever before, refrigerators, cars etc. I was teaching civil engineering subjects at that time and I could not stay in a class room with people at all.

There was pain from loudness hyperacusis, but only when I heard children's high frequency voices or certain female voices. It felt like knives through my ears.

I searched online, and found out about the tap your neck trick, where you cover both your ears with your hands and tap with your fingers on your neck. It resolved all my issues for me.

The second time

I had changed my job to work as a structural engineer in an office designing prefab elements for buildings. We had a factory nearby, and 6 months into the new job, someone accidentally alarmed the entire building without knowing I was inside. I went down and the burglar alarm set off just next to my ears.

I immediately got hyperacusis back on the spot within seconds, I ran out of the building and left.

This time the tapping didn't work at all. So I started using pink noise in my ears for the next maybe 9 months everyday to work.

It helped, and sometime by 2019 my loudness and hyperacusis was gone. It was still not pain hyperacusis but loudness with pain from certain frequencies.

I noticed something though that I could not stand listening to something above 50% of volume on a laptop or other devices. I was okay with this and accepted it.

Fluttering in the ear has occured three times while being exposed to sounds. It was not painful, but annoying

The third time

It was May 2021, going out on a car drive with my cousins (who I barely know), I had informed them of my over sensitivity. They suddenly blasted the music on max in the car. I told them to stop and they stopped.

Since then I have had sharp pain, stabbing pain, dull pain, brning sensation, vertigo (couldn't drive) for many months. Went to an ENT waiting for months to get an appointment. They did a hearing test by an audiologist at the hospital. Hearing normal. No tinnitus. And they gave no comments on hyperacusis. Since then I have seen at least 4-5 doctors. And no one has a clue about things here.

What is different this time is that I can't enjoy music or any pleasant sounds. This is the most annoying thing because I had just started to learn singing, and I love music. The pain was constant 24/7, no pain killers worked.

ENTs didn't find anything, pink noise made things worse (can't tolerate it even at a low volume).

I was put on Cinnarizine for the vertigo or whatever. It resolved that part. The ear burning, the pain, and the sudden weird warm sensations in the ear persists. I had fullness for a while but it disappeared.

Fast forward to 2022, the stabbing pain has disappeared around February 2022.

My current symptoms now are:

- discomfort feeling, feeling that things aren't as clear as they were.
- dull aches that are mild, comes and goes for a few seconds.
- I cannot enjoy sounds, music, birds singing, or other nature sounds. It causes some pain in form of dull aches, they are not very painful like in 2021. But enough to make my day hell, and feel I can't live like a normal human being.
- feeling depression and anxiety due to my condition, knowing I'm not normal like others.

What do you guys think? What can be done? How should I proceed from here, tips and tricks? Can I recover to be normal again? What should I avoid? What should I do?

One doctor said that it can take up to 2 years for something like this to heal. How do they know this when they barely know anything about hyperacusis?

 

[Brian Newman]

So it definitely seems like, since your noise injuries aren't severe, your ears are slowly healing and calming down over time. 2 years sounds about right. It takes an incredibly long time for ears to calm down. I think you can get much better with more time and rest. I have catastrophic pain hyperacusis, been housebound for over a year, my pain is something I hope nobody else goes through. I have read every story, every article, every support group, every research page on the internet. It's very interesting how ears work. Before I got pain hyperacusis, I was like you, and had mild loudness hyperacusis and tinnitus. I had many things happen like what happened to you, and never got worse. Alarms would hurt my ears but I would get away and have to deal with spiked tinnitus for a few days. A car accident airbag deployment is what got me, then two weeks later my car break made a screeching sound, I had my window down and it felt the nerves being shredded in my left ear. Been dealing with pain hyperacusis ever since and it has not improved.

There's a few people on here who were in remission for pain hyperacusis, and got really bad from music from a store, I think he said it was 70 dB for a short time. This ear stuff is extremely unpredictable and very misunderstood. I think you got a good chance to heal again, you just need to be very careful. Obviously there's things you can't avoid and people say wearing hearing protection everywhere can make your ears more sensitive. When it comes to true pain hyperacusis, you can never be too careful. I've never heard of pain hyperacusis worsening from overprotection, only loudness hyperacusis which is reversible in those cases.

I've gotten much better at learning to protect my ears. At my severity double hearing protection barely does anything and sounds cut right through and worsen me.

Are you homebound? Or can you go out to quiet places? I think wearing earplugs the moment you walk out the door is the safe way to go and take the earplugs out in environments you can control and get a little noise stimulation. My pain is definitely in the top 1% of worst cases I have ever read, but I still have a little tolerance to certain noises.

I'm in another setback but for a while I could talk again low volume, could drive with double protection and not worsen, and listen to my fridge all day with no worsening or pain. My noxacusis was set in from higher frequency, for I could be doing well, hear one high pitch noise through earplugs, then be in severe pain for weeks. Everybody with this is different, so first I definitely recommend avoid all things that cause pain. I noticed if I feel pain, sometimes I won't get worse but if the pain starts to ramp up I have to stop right away or it's permanent worsening.

We gotta be positive. Check out the Research News section here, lots of possible treatments and drugs in trials. We won't have this forever. Just need to manage it best we can.

 

[Michael Leigh]

What do you guys think? What can be done? How should I proceed from here, tips and tricks? Can I recover to be normal again? What should I avoid? What should I do?

Hi DaniAmi,

The only way your oversensitivity to sound (hyperacusis) will improve is with treatment because you have had this for quite some time and it hasn't improved. While resting the ears can certainly help, unfortunately, this only provides temporary relief and won't address the underlying problem. The moment you are exposed to a sudden burst of sound it sets off the hyperacusis. This can lead to increased stress and anxiety and eventually to be fearful of sound which is something you don't want.

To have any quality of life living this way can be difficult, so my advice is to see an audiologist that specialises in hyperacusis treatment and management. It is sound therapy you need to help desensitise your auditory system so it becomes less sensitive to sound. White noise generators with counselling I believe is the best way to treat your condition.

I don't think it's necessary for you to see any more ENT doctors because they don't usually treat tinnitus or hyperacusis, as this is not their area of expertise. They treat underlying medical problems within the auditory system that cause tinnitus and there are many but they don't treat the condition. I don't know how your health system operates in Sweden, so I will only comment on what happens in the UK.

Once a tinnitus patient has been examined at ENT and had hearing tests, MRI scan etc, if there is no underlying medical problem within the auditory system that is causing the tinnitus or hyperacusis, as in noise induced tinnitus, the patient is usually referred to Audiology. Here they will see either a hearing therapist or audiologist that specialises in tinnitus and hyperacusis treatment. The usual treatment for hyperacusis (oversensitivity to sound) is to be prescribed white noise generators and preferably have counselling.

This treatment can take up to 18 months, sometimes longer and therefore is not a quick fix. Please click on the links below and read my post: Hyperacusis, As I See It and The Complexities of Tinnitus and Hyperacusis.

Overusing hearing protection and keeping away from normal everyday sounds is not the answer. It is treatment that is required.

I wish you well,
Michael

Hyperacusis, As I See It | Tinnitus Talk Support Forum
The Complexities of Tinnitus and Hyperacusis | Tinnitus Talk Support Forum

 

[dan]

White noise generators with counselling I believe is the best way to treat your condition.

Counselling

 

[Sevv]

As @Brian Newman has suggested, I'd wait it out since you are improving very slowly. Pain hyperacusis usually does not respond to sound therapy (unlike loudness hyperacusis), in fact it can make it worse (as you've experienced yourself with pink noise), especially if you push through the pain. You should use hearing protection whenever you are in situations when you can't control your environment, which is essentially always you leave the house, since loud vehicles could pass by. Setback prevention is much more important than any attempt at desensitation, even if it means "overprotecting" when loud sounds are just a probability.

Counselling as has been suggested can be useful to deal with the difficult emotions. I'm doing it myself lest I get slowly crushed by my thoughts. But it's obviously no cure.

 

[DaniAmi]

Update:

Things are pretty much the same. Occasionally, I experience pain in my SCM muscle, with the ache radiating there. Now and then, I feel slight pain in my forehead, which sometimes radiates down my jaw through my teeth. This happens less often but still occurs once in a while. I would say I am less depressed, but I am constantly trying to see other doctors.

Has anyone here ever experienced an inability to enjoy music?

Could it be nerve pain? Could it be something else no one has considered? Are doctors just incompetent? What is the best country for medical treatment?

I also want to add that this happens 24/7, even in silence. Loud noises do not always trigger it, but certain frequencies make the symptoms more pronounced.

Every day, I wake up just waiting to go back to sleep, but sometimes, even sleep doesn't help.