The Whole Truth About My Tinnitus and How I Treated It

For certain reasons I have had doubts whether I should write about this or not, but I decided I will. I need this off my heart and I also want to tell you that there is hope, there are treatments that actually do work.

After my T has started in July, for reasons unknown, I have turned the internet upside down searching for a cure. I read everything on those forums, I became an active member, my first posts are really embarassing now that I read them today...

I cannot count how many meds or supplements I have tried. Finally, after few weeks, I found about AM-101 medical study. Luckily enough they were recruiting for phase II study in my country so I have decided to take a risk and joined it. Why was I reluctant to talk about this? They had strict inclusion criteria, tinnitus had to be caused either by noise trauma, otitis media or a sudden sensorineural hearing loss and be no longer than 3 months. My T was 1 month at the time, but the truth is I had no idea why did I get it. I did attend a loud concert before it has started but I still had a week of silence between the concert and T onset.

In the document I signed there was no clause that lying about my health is a punishable offense, so I will admit it - I have lied about my tinnitus cause to get accepted for those trials. You have right to blame me, judge me, I did it out of desperation. It was literally a matter of life and death to me.

There was 1/3 chance of getting a placebo and 2/3 chance to get a real drug. It was injected directly into the middle ear. I was extremally scared of it and almost gave up, but finally one person from these forums convinced me to try.

First injection was painless, also it did pretty much nothing, or so I thought. Thankfully I didn't have any problems with my hearing nor any side-effects.

Second injection was painful. Then the hell broke loose. Later that day my T became much, much louder to the point I had to go back to the hospital and had my ear checked out. The T went back to the acceptable volume after few days. I decided not to have a 3rd one.

Right after that I started using betahistine again (this is also against the study but my ears are more important to me) + spine exercises (I have confirmed mild lordosis).

Now the part you are probably waiting for - before, during and after the study I have had my T extensively measured with numerous tests repeated over and over again. I did get a bit better.

T in my left ear comes and goes, but most of the time I don't hear it. T in my right ear has permanently went down in volume. I did not see (hear) the difference until very recently. T is still there when I look for it, but it is no longer a problem to me and there have been few days now I have not even thought about T at all. I guess this is "habituation". The only situation I hear my T is when going to sleep but I use a white noise mp3 at minimum volume to cancel it out.

Those last 4 months was quite a ride, but I am glad I got better and I don't regret anything. I wish my T was gone completely of course, but this will do. Also, there is still few things I can try. We'll see what happens.

 

I don't think we have the right to judge you Fish.
How do we know whether we'd have lied too if we'd had the same chance as you did?

I was a vegan and a hunt sab between the ages of 17 & 21. Ardently against all animal testing of any kind & extremely active in so much as we used to go out at night, breaking into labs to rescue animals & also rescued beagles that had no more 'hunting days' in them & were about to be shot.

I was 27 when my first child was born and I knew immediately that I was a complete hypocrite because if he had been ill I would have sacrificed any animal to save him.

We just never know what we'd do in certain circumstances.

And as for those ear injections - I think you're incredibly brave.

 

I believe this website was not created to judge any one but to be supportive of this common nuisance we call T. Whatever anyone does to either try to combat it or remedy it should be commended no matter what. I'm still trying to find people who have T with no hearing loss, I believe Erik is one. Perhaps when certain groups of people put together with common symptoms, a solution may be found either professionally or perhaps on this site. We all want it to go away. For me, I'm still waiting for it to subside after a year in my right ear. I thought it was TMJ but who knows now, it probably started this way with jaw muscles and neck muscle issue but not sure now why it started.

 

i could never blame such a cute cat with mouse ears

but all kidding aside, i easily could have done the same thing...tinnitus puts out backs up against the wall

i think you have been found "not guilty" by a jury of your peers

best wishes
mt

 

That cat really is very cute.

 

Fish I completely understand and you have nothing to feel bad about in my opinion. I would have done the exact same thing in your position if I had just got my Tinnitus this year like you. It's different for me because I have had it so long but absolutely at the beginning I was very desperate and would have done almost anything to get rid of it.

Know that we are here to help and support you through all this. We are not here to judge.

Also I agree with Click and Mock Turtle I really love your Cat pic!!

 

Tinnitus is torture and anything you do to lower it is worth it.

 

Hi Fish, good to hear the trial worked for you! I wish they were running it in my country too. Maybe I should travel to Poland or something haha.

When you say T in your right ear decreased, how much did it go down? Was it a LOT, or just barely noticeable? I am nearly reaching the 3 month mark, maybe I should really consider travelling overseas to get an injection too if its a noticeable difference

 

Thank you everyone for your kind words. This is why tinnitustalk community really is the best.

I must admit I didn't see much improvement in the beginning of this treatment, but now I really do feel great. It is difficult to estimate but I would say the T in my right ear (only right was treated) has went down by ~50%. It is a large difference to me, I really forget about my T for most part of the day.

Patients who have joined those experimental trials are put under a great care. I had many tests done and my T will be measured again in about a month from now. I will try to obtain the precise values what was the volume of my T before, during and after the treatment.

While unlikely, I still cannot rule out the possibility I have gotten the placebo and it was something else that has helped me. As I have said, I take betahistine 2 times a day and I do exercise to reverse the spine lordosis. T in my left ear has also improved. Not that much as the right ear but it still did.

 

Hi Fish

What made you decide to take the betahistine even though it wasn't in the 'rules'?

Is it definitely doing something for you?

I'm asking because I still have a box of them - they were given to me right back at the beginning and I only took them in the first few days because I felt they were making me go weird.. but it could have been the stress that T gave me.

Do you have any side effects from betahistine?

Click

 

The way I interpret your T cause, you didn't lie. As far as you're medically able to tell, your T was from noise trauma. Who's to say how long it takes for the hairs to die (or whatever the hell happens) etc? I'm glad things are better for you.

 

Thank you DezDog, you might actually be right. I will probably never be 100% sure though.

Click - in Poland betahistine is somewhat a first line treatment for tinnitus, sudden hearing loss and related problems. It is considered to be a generally safe drug and if you have been prescribed it at some point, why not try?

The doctor who has prescribed betahistine to me said it is so far the best (and only) drug that helps some patients with tinnitus. To feel it's effect though you need to take it for at least 6-8 weeks. This doctor is prof. J. Olszewski, I think I mentioned him here before.

He and his two colleagues also research cochlear electrostimulation therapy. Here is a link to pdf file about their study with betahistine and electrostimulation in treating tinnitus. I am sorry but only abstract and test results are in english:

The comparison of betahistine therapy and electrostimulation in tinnitus treatment

Speaking of T, I really had a good day today and I hear no T right now. It is probably there but my humming computer is enough to cancel it out. I really hope it stays that way and doesn't get worse again. Best of luck to you all. We all will get better eventually!

 

Betahistine - could it be used to treat/lower the experince of T also for noise induced T?

EDIT: Loosk unlikely... drugbank.ca/drugs/DB06698

 

Betahistine? I have vertigo problems and lack control of my eyemoovements yet my doctor rejects saying I look young fine and healthy. Knowing this pisses me off T_T

 

Tried it. Did nothing for me .. Complete waste of time.
But it's basically not prescribed for tinnitus but for a hydrops cochlea which is a form of Ménière's disease and helps with the fluid exchange in the inner ear and takes away the vertigo. So if anybody of you has menieres it's worth a try for the dizziness/vertigo

 

I re-read my first post and I can tell it's poorly written. My apologies... Concepts of present perfect and past simple are abstract to me and I will never understand how to use them properly I can only hope it's understandable!