Hyperacusis and My (Success?) Story

Hello,

I am a 24-year-old male from Finland, and I have been suffering (not all the time) from some kind of hyperacusis since February 2018. I have been "lurking" on these forums since May this year (2021), but finally decided to register. I will go through and provide some details about all the traumas/setbacks AND good periods I have experienced through these years, I believe this will be a pretty lengthy post. Also, English is not my first language so expect some errors.

First of I would like to say that before the first noise trauma, I did NOT live a silent or peaceful life. I started going to parties at a early age of 15 years old (fairly common in my country) with very loud music. Me and my friends had or went to parties about 2 times a month. I also started driving moped as 15 years old, and motorcycle at 16. Both of these were loud but especially the 2-stroke motorcycle (125 cc) I drove as 16-18-year-old. Me and my friends were also very interested in anything motor related and most of us had our own cars (not registered) as 16 year olds, we drove mostly on frozen lakes at winter (without mufflers/silencers, because that was cool, right?). Also I have always been gaming and listening to music with headphones.

First trauma (February 2018)
Alright now to the first experience of my ear problems. I worked at a metal industry while we had a week off from school. I remember I had to modify a metal piece, and I did so using an angle grinder. The grinding was loud but as it only would take about 25 seconds to cut trough it I did not get my ear protection. I had been using an angle grinder before without any ear protection hundreds of times before and I did not think about it much at the time. I did not notice anything that day, not in work, not while home where it was silent. This was Monday.

Then came the day after. Immediately when I woke up I noticed something was wrong. Every sound that I heard had a extra sound to it (in my left ear). Everything from turning in the bed and the bed sheets making sound to loud things in the work had sound distortions. I really panicked and had no idea what I was experiencing. I kept on working Tuesday and Wednesday (with ear protection now). But I did not see any improvements so I booked an appointment to the ENT. Later that same week I also experienced the "Broken speaker" effect, to any sounds louder than a human voice.

Monday, one week after my trauma (6 days since symptoms) I did see the ENT doctor, and that's the first time I heard the word hyperacusis. He prescribed Prednisolone and told me to be very careful with my ears in the future. I should have listened...

I took my Prednisolone, for 2 weeks starting with 40 mg and tapering. I cannot say if time and silence or the Prednisolone helped me, but I did get better and about 5 weeks after the trauma I did not have any problems at all left. I had not read anything about hyperacusis at this time, and I did not think ANYTHING about it at all after I was better.

Second trauma (January 2019)
As previously said, I did not think about my ears much after my first trauma as they got better so fast, so I continued to live as usual. Me and my friends sat at a bar drinking and chatting. The bar had a live performance of some local DJ and we sat relatively close to the speakers. And suddenly I could feel my ear (left again) reacting to the music. I instantly knew what this was as it was almost exactly as the first trauma, only this time it started right away and not the day after. I left the bar as soon as I noticed the sound distortions and was a little panicked. I hoped that it would get better the next day, but it was worse.

This time I also contacted the same ENT doctor and I took Prednisolone again, for two weeks. While I did get a little better (do not know if from Prednisolone or time/silence) it was not good. I had sound distortions on and off about 9 months, the first 3 months were definitely worse. And while working in the summer (May to August) it was a little bumpy, as some days/weeks it was better and some a little worse. It was not until September when the schools started I really improved. This time I also noticed a little tinnitus for the first months (maybe 2 or 3). Oh and the ENT also prescribed BetaSerc after it did not get better (maybe 2 months after the January visit)

After this time I knew I had to be more careful and protect my ears and try to avoid really loud places. From September and onward I lived a normal life, I went to school, went to friends, did semi-loud things (with ear protection) e.g. being in the garage. I did not notice any sound distortions at all.

Third trauma (July 2020)
This time I really thought I had learned to protect my ears, but apparently not good enough. I were driving one of my friends car, that had a better sound system (including a bass) installed. And as I drove them to a bar for a 15 minute ride, they blasted music through this sound system, they asked me if it was too loud but I said "Naah I got my earplugs in" as I did not want to be a "partypooper". Well, it was too loud... I guess it was the bass that was way too loud as earplugs does not really reduce low bass sounds. The day after I noticed tinnitus, loudest I had ever experienced but still not loud at all (had to be in a silent room to hear it clearly). And the day after that the sound distortions began again. These distortions are the worst I've had so far I thing, I reacted to everything, and just the wind made it worse and unbearable. This time I did not take any Prednisolone as the ENT was on vacation and I did not bother going to any other doctor to get the prescription renewed.

I took 2 weeks of the summer work off to rest my ears after this trauma, and that did help a lot I think. My ears healed relatively quickly but about 2.5 months after the (3rd) trauma it got a little worse again, but this time in both ears, and a little bit of very mild pain in the worse ear (left). This only lasted about 2 weeks. After these 2 "extra" weeks of problems, I was again much better, no pain, no distortions and no tinnitus. So good that I again did not think about my ears.

Fourth trauma (April 2021)
The fourth trauma is a little bit odd, so far all the times I could easily tell what caused the ear problems. This time I think it was multiple factors that contributed to my ears getting bad again (is it a trauma?)

Those were:
a semi-loud car I sat in + A semi-loud home party (with earplugs) + A wood splitter that me and my dad used for 2 weekends (both earplugs and earmuffs). Similar to the other times, I got the symptoms a day or two after the last of these happenings. This time the tinnitus was louder, like a really low rumble. The sound distortions was very similar to the other times. I did the same things as usual, Prednisolone for 2 weeks and tried to rest my ears.

I was getting better but I got a "setback" about 1.5 months after (mid May) where I got tinnitus for the first time in my "good ear" and sound distortions back to bad. The following weeks I also got pain in my left (bad) ear. This pain was mostly the "burning pain" but I also had some of the "direct pain", as in the pain came at the same time as the sound came, while the burning pain came a time after. The pain lasted for maybe 4 weeks, then disappeared.

The whole summer of 2021 was pretty bad, in summary: April, May and June was bad, July was kinda 50/50, I started to do alot more things with friends again, swimming, watching movies (not high volume) and so on. August and September were good, as in I did not think about the problems everyday, I still was very protective and avoided louder happenings, but I again lived pretty normal.

Then I got another (my latest) setback or trauma again last month (beginning of October.) Probably from a Rally event in my village + a party with around 50 people at my girlfriends work ("Open house" with drinking at night), I used earplugs and earmuffs at the rally event and earplugs at the party. I'm again at a pretty bad state with pain and sound distortions.

That's pretty much my story, this can be seen as an introduction and at the same time maybe a "success" story if you can call it that. Because I have multiple times gotten bad, but always (so far and hopefully also in the future) been getting better. In the months between these traumas/setbacks I have lived a (in my opinion) normal life with no symptoms at all. And that is what I see as a success! So don't give up hope!

TL;DR:
I am a person with some kind of hyperacusis (mostly sound distortions, and some pain). I have had many bad times, but also healed in between these bad times. Healed so much that I would say I have lived a normal life.

The things I have done to speed up the healing process is:

• Taken the Prednisolone course of 2 weeks when I have had traumas.
• Been taking the BetaSerc almost all time since 2nd trauma.
• Rested my ears, especially right after a trauma/setback, wearing earplugs when driving and being at loud places (I think every person needs to find their own "comfort zone", I have not been wearing earplugs at home but that may be different for everyone I think).
• Neck massages.
• Talking to parents/girlfriend/friends about the problems.
• Try to relax, I know this is hard, but I think if you panic all the time it only worsens the symptoms.

I do not really know what has helped me with healing, it could just be time, it could be any of the medication or it could be a mixture of things.

Also another thing to consider is that what I consider as loud or silent, another person might not. For example I live in a small village where I can go for walks in the forest, and I would consider that relatively silent here. But as someone in for example NYC I cannot understand how they would ever get any "silence" in their apartment. And that might be a factor to when and where to wear ear protection.

Side note: I do also grind my teeth a little bit, and also got some neck problems. I do not know if these have made my ear problems worse or not. Should maybe look more into these.

If anyone got more tips, please tell me and I might try them! I am also happy to answer any questions, I would never call myself an expert but I have experienced this for some years now on and off.

// Daystar

 

Holy crap, you healed so many times after so much noise exposure! I wish I was this lucky. Never had any warning signs, just instant catastrophic tinnitus and hyperacusis :/

 

Yes, I have been quite lucky! I do not actually believe I can ever recover 100%, more like 99%. For example, I would never go to a concert or begin to play drums, while these activities might be possible after a long time of healing and using earplugs, I would not risk it.

But when I say I've healed I mean more like i am able to live a "normal" life, without the loudest events. Examples of that is, I can watch movies, listen to music, work, be social and so on.

My heart goes out to all those who still suffer greatly from hyperacusis and tinnitus! Some may have permanent damage, but I have read so many long time sufferers also getting better, so do not give up hope!

I myself is (as stated above) currently in a bad period again, and I would lie if I were to say I'm fine. It has been a rough journey... But I believe I will once again be better!

How are you doing today? Any improvements at all? Even if small.

 

Unfortunately no improvement, only constant worsening. It's a sad, sad life.

 

Some symptoms I forgot to mention in the original post are:

• Ear fullness, same as others have described it. Feeling of fullness/swollen and warmth.
• Ear popping, everyone can experience ear popping but I mean to a higher degree than normal.
• Ears stopped producing much wax. I used to clean my ears weekly before the first (or second) trauma. Now I barely produce any wax at all.

From all or these symptoms I find the earwax problem the weirdest. Would like to know if anyone has any ideas of that one.

//Daystar

 

I think you can consider yourself lucky to recover so many times from burning pain. Try to protect your ears as much as possible.

 

I'll give a short update from November 2021 until today.

So in late November 2021 my ear pain shifted to a cold/numbness feeling in (ear canal) and around the ear. The "numbness" feeling could stretch to the eye of the same side, and also to the cheek. This was something new for me, and I were pretty scared although the symptom in itself was not too bad or "life changing". I had this feeling for about two or two and a half weeks.

The rest of December was okay/good with minimal symptoms, only some mild distortions.

January was a better month, with only some mild distortions every now and then.

In early February I got moderate (or heavy) distortions again for some unknown reason. All I can think of was helping a friend renovate a house for two weekends, not really loud events at all (but I used Peltor earmuffs most of the time anyway). The times we had to use power tools I went to another room and used double ear protection.

Anyhow, my ears were bad again. Distortions, kinda bad tinnitus and some numbness. I was at work for one week but only got worse so I had to call in sick the next week, and worked from home the week after.

In March I still had some symptoms but not as bad. They eventually faded to okay levels in early/mid March. The rest of the month was okay/good. Oh, and I experienced my very first real breakup (5.5 year relationship) at the end of the month, I were pretty sad/depressed, but luckily it did not affect my ears.

April continued as March ended, ears okay/good but still sad (of course) about the breakup. In mid April I got so confident that I actually visited a bar (calm place) with my friends. All went well. The next weekend we went again but this time there were a lot more people. I experienced a little more (moderate) distortions again but this faded quickly, in about a week.

May esd relatively good, but I got fever/a cold so my tinnitus was a bit louder but I considered that normal during a cold. Also visited the bar (calm) twice without problem, one time on the outside! First month where it gets a little bit warmer here in Finland.

In early June I again got a little too confident and managed to get louder distortions again after a louder evening (graduation weekend for school people, so way more people than usual). These distortions faded relatively quickly, in about 1-2 weeks and they were not too bad. Also I participated in a lot of happenings this month, like swimming weekly, playing volleyball (relatively close to a highway, gets semi-loud), grilling and drinking beer with friends etc...

First weekend in July me and some friends went for a roadtrip to a bigger city (from my perspective lol) which took about 3 hours, this is my longest trip since last the beginning of this "journal" (April 2021). I think all went well because I did not notice anything unusual at first. But now I got some mild ear pain and some distortions these last 2 days. Might be related to the trip, might not, hard to say. Hopefully it fades fast.

This post became a bit longer than I expected but hopefully someone got through it. I kinda like having a "journal" for both me and others to see progress in hyperacusis and tinnitus.

Best regards,
Daystar

 

Fellow tinnitus and hyperacusis sufferers, I am back with another update from July until today to add to my journal. I do not know if this is still considered my "introduction" or not, but if not, admins may move this thread to a more appropriate topic.

So after the trip in early July, I had some (mild) ear pain and moderate distortions for about one and a half week. It faded relatively quickly to almost no symptoms. I'm not sure but I guess this minor setback was from the trip. The rest of July was good. My annual paid leave (one huge benefit of Finland!) from work started 18th of July and during this time I did participate in plenty of activities like minigolf, drinking beer, going to a restaurant and hanging out with a lot of friends! All without any problems with my ears.

My paid leave continued until August 15th and during these weeks I got a little bored and actually confident enough (with my ears) to enter the dating scene again. So I downloaded Tinder for the very first time in my life I also started going to the local gym which is very affordable and a nice change from my daily walking which I have been doing since January! I do tend to go pretty late to the gym though, this is to avoid rush hours when it can get pretty loud at the gym.

I would say that the whole month of August was very good. I also continued to hang out with friends and family on the weekends, also managing to visit the bars almost every weekend.

September was another good month. My ears got a little exhausted after the first bar weekend in the month, with a little more distortions again. This faded in just some days (2-3). The rest of the month were very good!

October was also another very good month. With little to no problems with my ears. I had a cold/fever for a week which (for me) always affects my ears, so a little more tinnitus during this week but that's even normal for a person without ear problems I would say.

Since and during my paid leave I would consider my ears to have been very good, actually the best they have been since the start of this journal, with only some very minor setbacks with mild symptoms. I have been going to the gym 3 times a week, listening to music through speakers many hours per day on normal volume, visiting bars and hanging out with family and friends basically every week these last months.

During my worst periods I would never have thought that my ears could get this healthy again. I would not actually recommend anyone with hyperacusis to visit the bar as often as I do though and I am aware that I am risking my ears health by doing louder activities as visiting bars, but I would still consider me relatively young and I can't just give up on all fun activities. I do still avoid live music and nightclubs and other activities that are as loud!

Also both normal foam earplugs and my custom earplugs (with 15 dB filters) have always been with me and I use them accordingly when people get loud and/or when I feel I need them. The custom earplugs (molded in my ears) have been very well worth the 200€ I paid for them in the spring as I use them almost daily!

Thanks to those who read this. I am happy to answer any questions, I know how cruel this condition can be. But never give up, ears can get better!

Best regards,
Daystar

 

Seriously man, you could be pushing your luck.

 

Oh I do agree and I am aware. Still one does start to push his limits when feeling better, which is probably not a good thing, especially with this condition!

The human brain is weird for doing this...

 

@Daystar, very happy to read that you're doing so well these days. Wishing you stability and happiness going forward.

 

After each of these traumas, was there ever a point where you had to live in silence and struggled with basic household stuff like showering or cooking?

 

Hello @volterra. Yes unfortunately after most, if not all, traumas. I have had more problems with cooking (in pan) than showering, not sure why exactly. Also all sounds that come from phones, TVs etc...

Usually I have taken 1 or 2 weeks off of my work and then 1 or 2 weeks of remote working following the worse traumas. I am lucky to have a very understanding boss at work.