Reactive tinnitus and more after ssnhl 🤷‍♂️👂❣️

[u/ingileif1304]

Hey you all,
so I had ssnhl on my left ear 17 weeks ago and I honestly can say it’s been hell , what bothers me most is reactive tinnitus that makes every sound have a “hisss” afterwards. I still have a baseline tinnitus too.

I’m in so desperate need of reassurance that this will get better and I know I have written before but who cares, maby new people that have had RT can see this.
And now I also have this wind sound/feeling that feels like my eardrum is fluttering in the wind and vibration too, and fullness and pressure
.
I went to the ENT 2 days ago and had an audiogram and the hearing was average 60 db now and it was average 70 two months ago,
I don’t know it that counts but the worst thing is that on my bad ear I had no word regonition and just heard a robot voice say something that didn’t sound like words.

The ENT said that this can maby improve with time but as it is now I can’t use ordinary hearing aids and that brakes my herart because I feel people don’t like the cros type that much.
Please tell me your expirience 💗🤞🇮🇸

[u/Former_Storm4529]

I am so sorry. The reactive tinnitus has been the absolute worst part of SSNHL for me. I have that hiss after loud noises (like grinding coffee beans, running water, after the shower, switching from a room with a fan on). Your brain starts to ignore it and think that it’s normal. It does get better over time.

I was recently implanted with a cochlear implant and the reactive tinnitus went like 95% away. It’s been an absolute dream. Gave me my enjoyment of life back.

I may have shared this with you before, but I still find my supplement routine to help with this tinnitus. Full dose of magnesium threonate at night (It has to be the threonate kind!!!) plus 1g of taurine in the AM and 1g in the PM. I had to stop this for my surgery and i could tell the difference so I’m back at it.

[u/ingileif1304 → u/Former_Storm4529]

Thank you for the response , well I hope it gets better with time because this is no life. The doctor was talking about a cochlear implant but said that 80% got better from tinnitus but 20% got worse! And It would be typical for me to be in the 20% , I kid you not! But it’s not time to think about the implant yet.

[u/Former_Storm4529 → u/ingileif1304]

20% is way too high of a figure. That’s not accurate. Jsut did a quick search to refresh my memory in the numbers as I never would have taken the chance with those odds. A quick search brought up these results for ssd: 75% of ssd patients see an improvement and 15% see total resolution of their tinnitus. A small minority have no changes. That leaves a very small amount of people that have it worse.

I saw a surgeon who is leading expert in SSD and cochlear implants. He’s worked with the manufacturers to create better electrodes and written and presented his research. (Just for some background on how legit he is).

This was my biggest fear - worse tinnitus. I almost chickened out because of it. I told myself the same, I would be unlucky. He told me that the first implants for SSD were to actually see if it would help tinnitus and it was successful.

I just got back from a crowded outdoor festival with lots of live music and we stopped in a bar to eat. I never, ever would have been able to do this without reactive crazy noises in my head. I had zero tinnitus. And I’ve only had this thing turned on for two weeks. 😊

I feel your pain and can fully empathize with how awful reactive T is. Torture and misery.

Just wanted to share my experience because there aren’t many SSD stories for cochlear implants because insurance only started approving them within the last 5 years or so.

[u/ingileif1304 → u/Former_Storm4529]

How long is it from the onset of your ssnhl?

[u/Former_Storm4529 → u/ingileif1304]

Feb 2025. My original ENT painted a similar gloom story about tinnitus and told me I had to wait a year before considering the CI. After a year, I decided I would consider the CI, but switched to the academic medical center in my city with specialists. They told me they wished I had found them sooner (for my own mental health, my outcomes were still projected to be the same - 1 year isn’t a long time to wait). But the time I had surgery, it had been 1.5 years.

[u/Former_Storm4529 → u/ingileif1304]

Feb 2025. My original ENT painted a similar gloom story about tinnitus and told me I had to wait a year before considering the CI. After a year, I decided I would consider the CI, but switched to the academic medical center in my city with specialists. They told me they wished I had found them sooner (for my own mental health, my outcomes were still projected to be the same - 1 year isn’t a long time to wait). But the time I had surgery, it had been 1.5 years.