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