Tinnitus Talk Support Forum

@tomytl, I understand you because, even though I turn on fan noise, white noise, etc., at night to sleep, the sound is still incredibly loud for me. I haven't experienced the calibration thing yet, but I'm telling you, my tinnitus is truly one of the worst in the world. I'll be starting a thread on this soon.

What loudness has your T? I guess such things measured by an audiologist with a tailored sound therapy might bring some relief.
My T is above I can hear, so I can't mask is directly.
I guess it's an advantage, that your audiogramm don't show hearing loss. I know about hidden hearing loss, but that's maybe also early to say in your case, maybe the unclearity comes from hyperacusis

@tomytl, I haven't taken a test to measure my tinnitus level, but it's extremely, extremely loud. And that's not the only issue. Along with it, I experience a sense of imbalance every day, fullness and pain in my ear, an inability to perceive sounds as I used to, and even my vision feels strange. I really don't know what's going to happen. I'm suffering every second, and I'm also afraid of the future.

I completely understand, looking to the future can be frustrating, especially when it feels like things won't change. It's hard to believe otherwise, but it's proven that pushing through is worth it. Be sure to tell your doctor about the dizziness and visual issues. For vestibular problems, there may be medications to try. You could possibly have endolymphatic hydrops.

@tomytl, yes I'm hoping , at least, some of my symptoms will improve by the doctors help but at the same time knowing that Iive in the UK and the fucking NHS bullshit makes me more pessimistic tbh. How was your day, how is it going with you?

But as far as I know, there are some medications for the vestibular part. I personally take Betaserc to increase blood circulation in the inner ear, although its effectiveness is debated. However, it is approved for vestibular disorders in the ear. Whether it really helps or not, I can't say. But at least it doesn't have any significant side effects.

I don't know much about the healthcare system in England. Ours is good, but when it comes to inner ear diseases, there aren't any miracles here either. Germany does more, with specialized clinics for tinnitus. There are very few here, and they tend to seem more psychiatric. It would be great if something truly effective could be developed and brought to the market.

I have high hopes that RINRI Therapeutics will achieve good results with their clinical trials next year, or that Sound Pharmaceuticals will finally bring something to market soon. I've been following them for 20 years now... unbelievable. I know this is about the future, but hope has always helped me endure this hell, and I believe that something will finally come to market in the next few years.

I finally slept well without a pill, a full 10 hours, and it makes a big difference compared to being overtired and having to talk to clients. Your mental state really affects perception, and I think you might be in a self-reinforcing loop. That's why it's important to find a way to switch gears and regain some control. (Sorry if it sounds silly, but I'm just saying how it feels for me.)

@tomytl, No, it doesn't sound silly. I generally prefer to speak openly. So, you can tell me whatever's on your mind. I will share my concerns when I go to my doctor's appointment, but my fear is that since my issue is physiological and inner ear diseases can't be cured, they will mistakenly treat it as psychological and refer me to a psych clinic.

@tomytl, Because we've seen people gaslit by doctors before, left dependent on benzos and antidepressants. Unfortunately, I can't get through most of my day without masking sounds or ACRN. How are we going to get through this, Tom? I'm only 27, and I've endured more than enough suffering already.

@tomytl, At this age, I should be working, partying, traveling, and living life to the fullest like I used to. But right now, I feel like an 80-year-old. I can't work, and I can barely manage my daily needs.

The problem with all of this is that there isn't a single medication or therapy that addresses the root cause. A purely medical approach leaves doctors just as clueless as patients. That's why some doctors offer certain advice, while others are more straightforward and say there's nothing that can be done.

Still, there are things that can provide relief, like masking or retraining the ear to hear. Benzos don't solve the hearing issue, but controlled and targeted use might at least give the mind some relief and help break a cycle. I found it very helpful.

@tomytl, Steroid treatment is started in most countries for sound trauma, but not in this fucking UK. I don't think I even managed to fully convince these fucking doctors that it started after using earbuds, because they wasted my time with MRIs and such. I hope those bastards burn in hell.

@tomytl, Some people I know from local groups have been using Xanax and other benzos for years. Some take it every day, others twice a week, etc. I guess at some point I'll be forced to try these things just to avoid going crazy. If those bastards had given me a steroid pill, maybe I wouldn't be in this situation today.

No one should ever be subjected to such nonsense, but especially not at your age. Just today, I looked through a lot of photos from after 2003—it's crazy how time flies. Despite all the miserable circumstances, I've done and experienced so much.

In 2003 and in 2014 I got Stereoids, first time an injection, in 2014 with pills.
I had no real effect and while another setback they didn't gave me stereoids.

I don't speak about taking benzos for weeks. I just say maybe to break a circle it might help for taking a few times.
I guess, tinnitus in it's new and loud form overlays normal hearing and maybe this also forces the ear to regulate other processes different. But every situation is so different and the perception too. I know a guy, he got some tumor on the left side and after operation, he was deaf on the left ear.

He told me, that a T as hell was torture him. Then he read a book how to cope and now he doesn't care anymore.
Imagine, loud T and absolutely no hearing on one side, I think it's a horrible condition. I would going crazy, but he did it without any problem... so different are all people.