Long Term People, Anything You Wish You Had Been Told...

...at the very beginning of the whole thing? Sometimes it seems like the only useful thing to say is "it really does get better even if the sounds don't", but no one ever believes that (I didn't!). If you could go back to the first night of panic about tinnitus once the realization of permanence had begun to sink in, what would you tell yourself?

 

Turn the music down.

 

I would tell myself don't see a doctor, just relax and go to sleep. I never really had bad tinnitus until I went to the doctor and was put on meds. After the meds I lost half my hearing. I look back at my original tinnitus and I would have gotten over it in a few weeks and been back to life.

 

I guess mine would be "you may never learn to love your tinnitus, but over time you will discover many fascinating things about your own mind as a direct result of your tinnitus."

 

Tinnitus Talk feels like a friend talking to you, which is what this whole place is like. That is something I wish I had found first when I punched in "tinnitus" on the internet a couple years ago.

When I think back on tinnitus, I have a very specific memory of Dr. Hubbard (someone referred me to him in the real world before he even joined Tinnitus Talk), sitting me down (I was a sobbing mess, an adult in his office with my Mom) and telling me, "It will either go away or you will habituate, this happens for the majority of people." He told me about his own tinnitus story and gave me a little hope to get me to the next day. What he said was more meaningful to me in my suffering because he had been in my shoes and was now fine. For those of us who don't have Dr. Hubbards in town, Tinnitus Talk is is doing the same thing for many. People who are positive and living good lives and also "in our boat" giving a little hope and advice to newcomers so we don't feel as alone with a condition that is isolating by nature.

So, there's not much I wish I'd been told after I had just gotten tinnitus - maybe to try steroids or HBOT sooner, but not sure that would have done much either. I wish I hadn't read any other tinnitus forums on the internet - scary.

The above is what I'm glad and grateful I had. Yay Tinnitus Talk and Dr. Hubbard!

 

Same.

 

1 - Don't try to rationalise tinnitus or hyperacusis. Do not try to think logically about it. Just accept it and listen to your body.

2 - Doctors do not have a clue about severe hyperacusis, and know very little about tinnitus.

3 - Eat healthy, do exercise.

4 - Try to calm down even right after a noise offence. Stress adds up and does not help.

To me it was surreal that when my hyperacusis was very severe I could not open a jam jar without earmuffs. Think how crazy that is...

I needed earplugs to have a shower, to flush the toilet, to do the dishes etc etc.

Sound would cut through my body like a knife on butter even wearing double protection... I would get weeks of pain after a 10 second very loud sound... it was just horrible.

Over time all that changed, and was easier to do things... I got hearing loss and tinnitus in exchange for less hyperacusis. It has been quite a journey. I would not wish it on anybody.

 

I remember my parents constantly telling me they could hear my music so clearly when I was wearing headphones. I still didn’t listen boy do I wish I had.

 

I'd tell myself not to overuse medication - that's what caused mine. But once it started and I realized it was permanent, I'd just tell myself it really does get better. The sound doesn't, but it won't bother you nearly as much after about 6 months with it. I've only had it 6 months, but the amount it bothers me is so much less than when it first started.