Autumnly

Really trying to get over my hyperacusis but a five-minute phone call still causes pretty bad ear pain and a spike for 2-3 hours... But I'm grateful it's better compared to August 2017!

Please don't regard my experiences as those of the 'average t patient', most people will only have to make small adjustments to their life once they develop t (from what I've read and heard). And I'm not pro-overprotection.

I feel like I’m the bad tinnitus role model. The type of tinnitus patient you don’t want to end up as. ‘Don’t read those horror stories’ - well, thanks, that’s my life.

Tinnitus can be annoying but with severe hyperacusis you lose all sense of control over it. Can’t even go for a walk without a spike. Who knows, maybe it’ll all be better in a few years...

And I’m pretty sure I didn’t underprotect either. Was still going to my college classes Monday to Friday, so had enough everyday noises but over the course of ~6months my hyperacusis still went from moderate to severe.

https://www.frontiersin.org/articles/10.3389/fnins.2018.00146/full?utm_source=S-TWT&utm_medium=SNET&utm_campaign=ECO_FNINS_XXXXXXXX_auto-dlvrit

"Directly after ES, there was improvement in 21 ears (75%), no change in five ears (18%), and worsening in two ears (7%). In 10 out of 46 ears (22%), tinnitus disappeared."

„phase I will be completed after 2 years, phase II will go on for another 2-3 years and then we hope that the molecule will be available for everyone“ yes, hi, hello there, I’m all for it, start phase I nowwwww

Article: https://www.di.se/pressreleaser/2018/3/28/sensori-har-presenterat-abstract-och-kliniska-studier-vid-tri-tinnet-i-regensburg/

"As a result of Sensori's participation at TRI / TINNET, the Antinitus studies have been internationally acclaimed in medical expertise. [...] Antinitus and the positive results in our studies created quite a lot of interest among international actors and distributors in place." (google translate) - what amazing progress for tinnitus research -.-

"He was not part of the scientific programme of the conference. Instead, he submitted a poster (one of 100s!)" - thank you to @Haz_G for clearing things up so quickly!

It's like getting fleeting tinnitus on top of your usual tinnitus except that your usual tinnitus disappears for those few seconds

My brain is so rude. How in the world do you go from 3-4 different tones in my left ear to just one tone and then back to 3-4? Just cancel out that last tone as well!

Really hoping that those upcoming five years are going to be different (and actually make a difference) compared to those 5-year phases we had before.

I feel like you’re not allowed to say ‘I’ve habituated but life is not that great anymore’.

I’ll never be able to just do things again without having to worry about my tinnitus getting worse.

And the whole ‘whose tinnitus is worse / who has more health issues’ thing - being sick is not a competition. Just say it if you think everyone can habituate and live a good life despite tinnitus. Let’s just stop saying ‘the majority can habituate’.

And then this monotonous tone fades away and at the same time my other usual tones come back.

And yes, I'm trying to live my life in the meantime. Wished I was also already retired and didn't have to worry about work / financially supporting myself on top of tinnitus but such is life.

Bonus points: people with mild t telling me that my suffering is a choice / purely psychological - I hope you never get to experience severe tinnitus without a quiet day + severe hyperacusis for years

And as always: habituation is possible for the vast majority but don't look down on the people who are part of the minority, listen to them, believe them.

Maybe if I had developed tinnitus in my 70s, already comfortably retired, I would think 'who cares' and just 'live my life'. But I didn't even get to build the foundation of my life. If I just keep living my life normally I'll end up with deafening tinnitus in a decade.

It's great if people with severe tinnitus can live fulfilling, productive lives but if it boils down to "I can do it, everyone can do it / the choice is yours" it really hurts. If not even people with severe tinnitus see it as debilitating, then who will? "Don't waste your life waiting for a cure" - I don't want to, t + h are stopping me from 'living my life'.

Yum.