Let's meet again (My tinnitus experience)

[kite26]

Hello folks. My name is Athanasios aka kite26. I am active on this forum since '12 and i have a good reason to create a thread here. What motivates me to write is my personal tinnitus experience.
I suffer from tinnitus since 30/5/2020. When i woke up, i realized that i was listening an odd hissing sound, similar to cicadas crickets. A broken television? Hell, no! Some minutes later, everything was ok, except for my head. The sound was produced inside my head! You can't imagine how shocking experience it was. I was feeling that i was unable to do anything to fix it. I went to doctors. Many doctors. They said there is no cure and i have to accept it.

To accept it?

Yes guys, i had to accept this terrible situation and familiarize it. How to accept a piercing sound inside your head around 9000 Hz?

I will not tell lies. If it happens to you, the road for familiarization is full of hurdles. At first, it seems to impossible to achieve it. But month after month, i really started to not take it seriously and continue my daily life. I feel like a winner now, as tinnitus has stopped to be the center of my life, but a small part instead.

Some good news
While there is no cure as i mentioned, many clinical trials are on progress. The biggest hope for cure is FX-322 therapy. You can read about it here. I asked on a tinnitus forum about its release date, it will be released at 2025 max. All tinnitus sufferers hope to have a therapy for this symptom. Because T is symptom, not a disease.
It can really destroy your life, causing you depression. I really hope FX-322 give a final solution for all of us.

To conclude, i wanted to share it with all of you because on this trip, i didn't quit my job, nor domaining. I am trying to stay strong and never lose my hope for the cure. Don't let all the difficulties to let you down. Keep trying my friends and stay near Jesus.

 

[kite26]

@kite26 thanks for sharing, feel for you - I have had it in a mild way for a few years now - 2 - 3 times on average a day the ringing happens (luckily) it is pretty quiet, annoying but manageable....sometimes it even throbs in time with my pulse which is slightly worrying.......

I used to go to a LOT of raves, concerts, underground music events and literally dance and stand right in front of these huge speakers every weekend between the age of 16 - 23 - I even used to put my ears up against the speakers

Hope you find a way to keep it manageable until (hopefully) some kind of cure comes along.......

Beware of headphones. Avoid to use them, or only if it is necessary and at low volume. Not only for you, for all!

 

[Save Breach]

Doctors are not the solution. They told me that i am very good. No solution=no problem for them.
Antidepressants are not something i want too.

I see

 

[kite26]

Update: Right after vaccination my T became 60-70% quieter! For first time (i can't remember any other) it is mild. Unbelievable!

The funny thing is that i have read that vaccines make T worse. I am so happy guys.

Disclaimer: This is my personal experience. I may be wrong or else. In any way, i don't recommend anything to anyone. So, don't let this post affect your decisions.

 

[Skyvisum]

Update: Right after vaccination my T became 60-70% quieter! For first time (i can't remember any other) it is mild. Unbelievable!

The funny thing is that i have read that vaccines make T worse. I am so happy guys.

Disclaimer: This is my personal experience. I may be wrong or else. In any way, i don't recommend anything to anyone. So, don't let this post affect your decisions.

Happy to hear that .

 

[LOLed]

How is your T now?

 

[kite26]

How is your T now?

The same, thank you for asking.

 

[Mister Funsky]

i have read that vaccines make T worse.

I am glad it is better for you and hope it stays that way.

In my case, the volume is about the same since getting the second shot but the frequency variations have become more noticeable in my left ear (the right generally keeps the same/consistent frequency).

 

[kite26]

I am glad it is better for you and hope it stays that way.

In my case, the volume is about the same since getting the second shot but the frequency variations have become more noticeable in my left ear (the right generally keeps the same/consistent frequency).

I suspect Repetitive Strain Injury (RSI) as a cause of my T. Sitting on PC and using mouse for so many hours is deadly.

 

[kite26]

After almost a year, i have good news. I habituated T and it no more make me feel sad.

 

[Skyvisum]

I have a close relative now suffering from this .She just wears an earplug .Its so uncomfortable as she told me and says if no self control can drive one crazy.

 

[kite26]

I have a close relative now suffering from this .She just wears an earplug .Its so uncomfortable as she told me and says if no self control can drive one crazy.

I am so sorry for happening this. Please give her some guidance:
1) Our brain is very adaptive.
2) Let her know that the first months after the onset are very difficult, because her brain has not familiarize this sound yet.
3) The big goal is to avoid this devil to destroy you psychologically and drive you crazy.
4) It's important to MANAGE your panic and then to ACCEPT that from now this sound is part of your body.
5) Let her know that she is not alone, as million of people are suffering from this. Including me.
6) A lot of different researches for treatment are on progress.
7) Panic and stress make T worse. Tell her to relax, do things to that make her happy, you know, good and healthy living.
8) For bad times she can try to listen this video to get a temporary relief:

9) And the most important, we are stronger as we believe. T is nothing more than another scar.It's a chance to re-evaluate life, and enjoy it more.

 

[Skyvisum]

I am so sorry for happening this. Please give her some guidance:
1) Our brain is very adaptive.
2) Let her know that the first months after the onset are very difficult, because her brain has not familiarize this sound yet.
3) The big goal is to avoid this devil to destroy you psychologically and drive you crazy.
4) It's important to MANAGE your panic and then to ACCEPT that from now this sound is part of your body.
5) Let her know that she is not alone, as million of people are suffering from this. Including me.
6) A lot of different researches for treatment are on progress.
7) Panic and stress make T worse. Tell her to relax, do things to that make her happy, you know, good and healthy living.
8) For bad times she can try to listen this video to get a temporary relief:

9) And the most important, we are stronger as we believe. T is nothing more than another scar.It's a chance to re-evaluate life, and enjoy it more.

Thank you so much.Just sent your message and video to her .Never knew this would hit close to home.

Really appreciate your words.

 

[kite26]

Thank you so much.Just sent your message and video to her .Never knew this would hit close to home.

Really appreciate your words.

My pleasure. That's the reason i created this thread. I hope for the best for her.

 

[DomainNature]

To me Tinnitus is my super power.
It amplifies when I comment in such forums and people give dislike, then I know you are talking bad about me.