How I Won Against Tinnitus

Hello! I go by nickname Fish, I'm from Poland and this, finally is the time to write my own "success story". I promised to do so a long, long time ago but I really couldn't bring myself to it... I don't really like going through those memories. I do however owe a lot to the kind people here so this is the least I can do.

The other reason I finally decided to write this is because I keep receiving PMs frequently - I no longer visit this forum like I used to and due to a lot of stuff going on in my life at the moment, I am unable to respond to everyone, unfortunately. I'm sorry! I hope that the story below answers all your questions and clears any doubts

My tinnitus began in july 2012, very suddenly and for no apparent reason. I remember sitting in a bathtub and it was the first time I noticed ringing in my ears. I knew immediately what it was because I heard it few times before (temporary tinnitus after loud parties or live gigs). Ironically enough, I usually took a good care of my hearing, wearing earplugs when necessary. I did not panic until the late evening when the noise in my ears made sleeping pretty much impossible. The real s*** went down next morning, when to my horror the noise was still there. I rushed to ER.

I had some hearing tests done, my head CT scanned and the doctors did not find anything wrong. I remember being specifically asked questions to rule out noise trauma and SSHL. I guess if I tried hard, they'd probably give me steroid injections but in the end it didn't happen. I came back home really depressed, and so began arguably the worst time of my life.

It was more or less a month of alcohol, antidepressants, suicidal thoughts, no food, no sleep, no social or family life. I felt that everyting I had, my whole life was now gone. I felt and looked really awful. I only stayed in my bed, cried, occasionally did internet research. That eventually brought me to prof. Jurek Olszewski, a very talented ENT doctor in my country. He researches some experimental therapies to treat tinnitus (electrostimulation). He took me to his hospital, did some more tests and offered me to take part in the next phase of electrostimulation trials. Also, it was him who prescribed me betahistine, a drug I started taking vigorously in the next months. I eventually turned down his offer though, I'm not really sure why.

At the same time I found out about Auris Medical. Luckily enough, they were recruting for phase II trials of their experimental drug called AM-101. It's based on esketamine and is injected directly in the middle ear. This therapy consisted of three injections and apparently was effective only up to 3 months since onset. The trials were to take place in my country, I decided not to pass on this chance. There is no cure for tinnitus, so this experimental therapy seemed like my best shot at the time. I remember it so well, taking a train at 3:00 AM to capital city, a mix of terror and hope in my head. Looking outside the window, first empty city, then dark landscapes, completely surreal feeling. After I made it to the hospital in capital city, prof. K. Morawski, head of the research, did an evaluation, ordered some tests and eventually accepted me to take part in the AM-101 trials. They explained to me how does the drug work, warned me of numerous side effects (including hearing loss, paralysis and death) and that there is a 1/3 chance of getting placebo.

Signing this contract was the most difficult decision in my life. I was mentally prepared that something really bad is going to happen that day. I listened to the "last song I will ever hear in my life"



and I went for the first injection... This kept on going for a while, going at 3:00 AM to another city, going to hospital, doing some tests, coming back home. I quit the trials after second injection caused a temporary increase in tinnitus loudness. I panicked and quit, something that was a bit silly to do now that I think of it.

Few months forward... I've gotten better. A lot better, in fact I got my life back, I started eating and sleeping properly, tinnitus, while bothersome, didn't control me completely anymore. I still visited this forum frequently, exchanged information with others, I kept using betahistine, also using masking white noise helped me a lot. I recommend this website, it's awesome:

http://mynoise.net/

Can I attribute my recovery to AM-101? I don't know, honestly. I broke some rules and I underwent few different treatments at the same time (including betahistine mentioned earlier and some physical excercise therapy). What mattered to me was the end result - I've gotten better. I didn't care why.

What was the cause of my tinnitus in the first place? - many people ask. I don't know this either. I suspected many things, but now that I think of it, most likely it was an ototoxic antibiotic called Ciprofloxacin a.k.a. Cipro (avoid at all costs! - very severe side effects, tinnitus among them, there are safer alternatives).

Some time around early 2013 I started hearing my heartbeat in the right ear (pulsatile tinnitus) but it was thankfully temporary and resolved completely within few weeks. The possible cause was that I took betahistine for way, way too long.

So, the ultimate question I'm being often asked - how am I doing now?

• Tinnitus does NOT bother me at all
• it does NOT affect my sleep
  
• I forget about tinnitus completely for days
• My tinnitus is completely gone in left ear and greatly reduced in right ear
  
• I do NOT hear my tinnitus at the moment - I only hear it sometimes when putting my ear against a pillow. Even then it's very quiet and easy to ignore. I'm fully habituated.

I guess I am very lucky... I got the best treatment available. I met excellent doctors who didn't tell me that "I have to learn to live with it", they genuinely tried to help me. I was very determined to recover and this also helped me to do so.

I consider this difficult chapter of my life to be over. Tinnitus has done a lot of damage to me, but it also made me stronger in a way. I reached the bottom and miraclously went all the way back up. I hope I won't have to go through it ever again.

I guess this is a goodbye I don't visit this forum anymore. Like Jim, I wish to forget about tinnitus completely. I would really like to thank all the people here - for support, advice, sharing your stories that helped me in this difficult time. Markku, Karen, Louise, Erik, Dezdog, Karl, Click, Meecat, Hudson, Gary and everyone - thank you! I hope you are doing well.

Special shout out to mr. Makoto Deguchi, an excellent jazz artist whom I met here

"GO STRAIGHT" by Makoto...

Please never give up hope. The cure is on it's way - we will all be tinnitus free one day!

 

Dear Fish: I remember you very well (who could forget tht avatar?) You developed your tinnitus almost a year ahead of me, so I was a newbie when you were posting. I was in so much emotional pain in those early days and drew much hope from you and others. Soon, I will be one year with tinnitus and hope to post my own success story. Thanks for helping me get there.
Powodzenia ( hope I got this right!)

 

Hey @Fish, I know you don't know me - probably virtually or otherwise, but I got tinnitus in April 2013 and while it took me a long time to get up the emotional strength to do more than stalk TinnitusTalk, everything you and the little group you mentioned (Markku, Karen, Louise, Erik, Dezdog, Karl, Click, Meecat, Hudson, Gary) helped me a great deal. You were all heavy posters when I was really at my worst and I remember spending difficult days reading about all of your experiences. So I guess I'm a little bit in the same boat as @LadyDi

Thank you for sharing them, and for sharing this post - the best news of all! I'm so glad you're well, good luck to you with everything!

 

Hey @Fish. I haven't spoken to you before, but I did go back through some posts and read some of yours. I am honoured to have a chance to talk to you. Your story... I can't explain it, but it has touched me. My biggest fear is that my T will not go, even though common sense is telling me it will (my T has been caused by congested and fluid stuck in the ear, and though it might take a while, my symptoms - headaches, ear ache, sinus pain - have gotten a lot better, and I can't believe that my ears will stay congested forever). Some days are very hard, and I struggle some days (recently I broke down and sobbed to my mother "it's not fair"). But I am glad to read your story, to know that even with T you have a life that is not impacted by it. I hope that if my T does not go, I can get to where you are.

Thank you for writing your story. You have been very brave, probably braver than I am. I hope that one day I will get to where you are. Good luck and I hope things keep getting even better for you.

 

I just started taking Serrapeptase for my tinnitus and it is helping. Has anybody tried this?

 

Fish buddy, go swim in the ocean of peace and bliss - so happy for you! I was wondering where you went and this is the best news we can get .. vaya con dios amigo!

 

Nice to see success story
And I really wish you well.
CJ

 

Wishing you all the best fish. Before joining the forum I use to read your posts, you were
Very active and compassionate person. Best wishes for the future. You are an inspiration.

 

My T started a couple of months before yours Fish and I remember so well when you were anxious and frightened.

Cannot express how pleased I am for you and that your courage to have that treatment paid off.

I hope that you never have to return to T Talk x

 

Congrats man. Glad to hear yours went away. Make sure to avoid loud noise in the future

 

Wishing you all the best! So happy to read your success story and you will be missed around here x

 

Grataluje ci ryba! Cheers from a Polish American who's very happy to see your success story! No go drink some zubrowka!

 

Hi I was just wondering if you can tell me some more about Serrapeptase I've had T for about 12months now and have try'd a few different thing but non of the really work. I would appreciate any info you can give me on this product as I know allot of the stuff out there is snake oil.

 

I am not certain what it is but I did google it and found it online for purchase and I myself have tried about everything out there homeopathic with no results thus far after 5 months. Let me know if you know anyone having success with this Serrapeptase. Thanks!

 

"...very suddenly and for no apparent reason."

? I was turned down for am101 trial for this reason.