After 18 Months I Had My First Real "Break" — (Tinnitus & Hyperacusis)

Hey everyone,

This is what tinnitus and -my form- of hyperacusis was for me the last years. This is a personal experience, but it can tell you that time heals quite a lot.

Mind you, my tinnitus was mild overall, but I believe that even sufferers from a heavier tinnitus can have a success story.

Also a huge part is about fear and overprotecting which gave me "a form of hyperacusis".

How it started:
I had some form of tinnitus since 25/12/2016, I was doing my job as a camera operator and made a mistake so my headphones made an terrible noise. I threw them off but I instantly got scared, thought about coworkers with tinnitus and so on. Somehow I feel this made everything worse for me. Fact that I caused it myself, and my fear for tinnitus. And the next day I had it. Very mild tinnitus.

I had trouble accepting even this very very mild version, and thought I was imaging it...
Fast forward a couple of days: New Year's Eve party. I went in with earplugs (for the first time) and once I went home my ears were making a terrible noise. Which I would have never had at such parties, even without earplugs!

The next day the tinnitus went down again, but was still much louder than my first very very mild version. That first month was quite dark and I wasn't doing good at all.

How I reacted:
This was my real start of this path that took around 18 months to end. My increase of tinnitus because of the party told me that I can't be save anywhere, and I started doing everything possible to fix it.

• I bought three pairs of premolds in less than 18 months. (I wasn't taking any chances.)
• I went to a couple of ENTs and enlisted for an experimental trial which was not possible after all (because both ears were affected.)
• I read as much, and learned as much about tinnitus as I could, and sound was virtually my enemy.
• I started measuring dB levels everywhere.
• I invested in a wide array of supplements.
• I bought something to cope with the noise, a pillow speaker and so on.
• I cancelled and didn't take certain jobs out of fear.
• I followed a few interdisciplinary courses, which included CBT and TRT.

On my worst I feared my own voice, and started wearing premolds -everywhere-.
I had a clear "fear-factor", but I didn't take any chances with my ears, nothing was worth getting worse tinnitus, is what I thought.

After a few months things went better, and then worse, and better and worse. It was like that for much of the first year. I had to push myself over some boundaries and accept that noise was part of life, and that the likelihood of new damage was small.

A part of me knew this, but the uncertainty always won. And everything felt "too loud" when you overprotect.

And once my tinnitus started "peaking" I always fell in the same state. Fear and promising myself to be even more "safe".

It took a while to see that those "peaks" were mostly caused by other reasons, and that my fear wasn't helping.

After a while tinnitus didn't bother me 'that' much anymore, but my biggest problem was how loud everything sounded and the fear of making my tinnitus worse.

This took quite some counseling and at a certain point I tried TRT, to change the levels of sound that were acceptable to me, I quickly decided that that form of therapy didn't work as much as the counseling did. (Because quite a bit was fear based, this may differ to a lot of people.)

I still had the problem that everything was loud, and still wore my earplugs in my car. After +- 1 year.

What changed?:
So how did I overcome this? I like to believe I was trying it for quite a while to get out of my negative loop. But there was no reason to push myself over any edge, which I needed.

So this job offer comes along, to film the world championship in Russia, part of my got excited. Another part extremely scared for the loud stadium noise.

So I had been in debate with myself and almost everyone I knew about this. "Should I or shouldn't I go" After all, I accepted and I was scared for months, every day I was thinking "I should cancel".

Long story short: I went, took -all- the precautions I could take and I had the luxury that I had a very understanding client which supported me.

This changed everything. All the fear I had build up in the months leading to this fell from my shoulders once I noticed that everything was fine. Sure, I was still doing some form of "overprotecting" but I made huge progress. Which continued once I got home.

This was my 18 month mark.

Around the same time I started caring less about tinnitus as well. For the first time I heard it, and I didn't care. I just did not.

Also I feel that the overall loudness of my decreased, but it's hard to be objective.

This again was a form of a positive feedback loop, instead of the negative feedback loop that made everything worse.

We are now 2.5 years later and I finally made this post. I didn't make one initially because I had times and times of false hope, but now it's different. Days go by when I don't think about tinnitus. I stopped using my sound pillow, and the mild tinnitus I do hear I accept.

I do use a little bit of background noise for sleeping.

But more importantly I don't refuse jobs or social gatherings anymore.

I play save, and advocate earplug use all the time. And almost always have them with me. But the unhealthy part of my fear left together with the sadness and anger I had whenever I heard my tinnitus.

 

I think this goes to show that sometimes people’s hyperacusis is more linked to phonophobia. This also shows that over protections can lead to issues like hyperacusis.

Let me reiterate for everyone who is going to jump at my throat. This is not going to be the case for everyone, BUT there are some people, especially on here, who over protect and develop hyperacusis and who mistake phonophobia for hyperacusis.

@JurgenG I am happy you are doing better. I am also happy you posted this story because it shows how much fear can play into things like tinnitus and hyperacusis.

 

Certainly, everyone their story is different! And for me conquering my fear somehow made my tinnitus more tolerable and perhaps even quieter... My constant focus and fear of making it worse made it impossible to deal with it.

 

But your tinnitus volume actually went down, right? Not just your perception of it?

 

The volume is not measurable by any objective standards, I believe it went down. I don't know for sure though. My mindset was completely different.
The part that is not gone doesn't bother me at all.

 

Just a little bump so more people see it. Good read.

 

@JurgenG, good work! What supplements do you think worked the best?