Better Late Than Never...

Dear all

After joining the forum last November and many posts since, I feel it's about time to introduce myself. And since it already been 10 months, it is quite a long introduction. I added titles so that it is easier to skip the parts that are not of interest.

About me
I am male and 30 years old. I love travelling, American cars and whisky. I am a big music fan and like high quality audio equipment (I own several pairs high-end headphones and speakers). I am friendly, open-minded, spontaneous and neither optimistic nor pessimistic; I would call myself a realist. Though, I believe that I have a tendency to overthink things.

Overall, life has been good to me. I had a happy childhood, got a good education and have a well paid job at a large company. I have had the chance to travel a lot and lived abroad in Asia, Australia and Scandinavia for extended periods of time. I have been without a girlfriend for some years, which bugs me little...but well. My health has been mixed. My back is not too stable, causing me lots of troubles from time to time. For the past years, I had some serious on-and-off issues with my stomach, which made my days very tough. But with regular exercise, I slowly got a hold on it last year. I have had a demanding job, and stress increased drastically over the past two years.

Having worked as a DJ in my younger years, I have always taken care very well of my ears. My dad hears crickets, but it does not bother him. I myself have regularly experienced temporary tinnitus after nights out, which, in my case, seemed primarily related to alcohol, not to loud environments. But it was always gone by the morning after.

The accident (mistake #1)
This was until last August. I was invited to a wedding of a friend in South America. After the ceremony, the party started and they played music on huge speakers at insane volumes. I knew that it was loud, but did not have ear protection (who brings ear plugs to a wedding??), so I tried to stay away from the speakers. But there was no escape from the noise and with the open bar, I clearly underestimated the danger at the time. Thus, the next morning I woke up to an inflamed feeling in my ears, severe ringing, sensitive hearing….hell! That morning introduced what I am now referring to as "the first day of the rest of my life".

Doctor visits
Long story short, I flew back to Europe, saw a specialist (48h after the incident) that gave me cortisone, told me to do lots of sports to increase oxygen levels in the blood and just "wait and see". Unsatisfied, I visited a second doctor at another clinic, but he could not help either. Later on I was prescribed Ginko pills.

My hearing was affected between 6 and 8 kHz in the beginning, but by now this has almost fully recovered, and according to a recent hearing test, my hearing is "significantly better than the average in my age". So, no hearing loss and no H (lucky there).

The openair festival (potential mistake #2)
At the first doctor, I mentioned that, because of my accident, I will sell the tickets that I got for a large 3-day open air the week after. The doctor, however, insisted that I go anyway, not overprotecting my ears and not make "any concession in favour of T". "Just protect your ears and you will be fine". I really did not want to go, but the second doctor confirmed her statement and added that, given that I do not expose myself to hazardous levels of noise, I could not damage my ears any further (!). This gave me a little confidence, and so, I went to a 3-day outdoor concert, mentally drained from the horrors of the past days and glad to take my mind of it at least for a while. Even though I stayed far away from the stage and did not experience any lasting worsening in T, I now think it would have been much smarter to miss out on the festival, and that it was a big mistake giving in. Maybe things would have come out differently...

Sports (potential mistake #3)
Aside from doing sports (running, cycling, etc.) on a daily basis as the doctor advised, I continued to play squash again very soon. Did not even think that far at the time, but squash can, depending on the court, be a very loud sport. Not realizing that the recovery of my ears may be affected by the repeated slam of the ball, I went playing 1x week. Here again, I am not sure if any additional damage was caused, but it was – at best – not a very smart move.

The trial (potential mistake #4)
Three months into T, I spent a long weekend all on my own in a remote cottage in the “silent” winter forests. It was then when I realized that I could not handle this situation. Back in the civilization, I spent hours and days doing online research and eventually found the recruitment add for AM-101. I got admitted and spent almost 6 weeks thinking whether to participate. Eventually, I decided to go for it and had my first set of injections in February. All went well. No significant spike and no side effects. After a slight initial improvement, things went back to baseline (probably I got the placebo). The second set of injections was due in May. This time I did not spend much time thinking about it. However, during the injections, something went wrong. One ear got physically damaged, spiked and got much worse for several weeks. Still today (7 weeks after), I feel that things are less stable in that ear. Additionally, I got a new, low hum in that ear 4 weeks after the injections, sometimes accompanied by physical vibrations. Not what I had hoped for at all.

Visiting the expert
In the beginning of this month, I finally got an appointment at another clinic. The doctor is one of the most renowned specialists for tinnitus in Europe and even though it was downright stupid, some little part of me had hoped that he would be able to help me effectively. He looked at everything, did a T match and found that physically, all was fine and hearing was good. However, based on tests he ran, I am considered a severe sufferer (not mild-moderate, as I had thought). Despite explaining him my concerns and fears in details, he did not really pick up on them individually and recommended me to look into psychological therapy instead, to get a grip on the negative feelings related to T. Here again; Not what I had hoped for.

The tinnitus
The unwanted companion that I have had for the past 10 months started as a high-pitched electric frequency sound in both ears, but perceived in the middle of my head. Initially quite loud, things settled a bit a few weeks after the accident. The T was not as intrusive as in the beginning, but still very noticeable. There were good and bad days, but what really affected me was (and is) that the T was much stronger in some locations (e.g. office) than in others (e.g. home). Until today I have not been able to figure out what causes the different perceptions. The fan of my computer boosts T and so does watching TV.

Typically, I was able to mask it with music at normal volume and mostly heard it when I was indoors. On bad days and in specific situations, I could sense it outdoors as well, but usually, times spent outside gave me a break. This setup remained pretty stable for the first 6 month.

Now, after 10 months and 2 rounds of injections, things have shifted. The left ear has gotten slightly better, the right one significantly worse. It is much more prone to random triggers and the T frequency has diversified, now with additional tones in the middle and low range. Especially the low frequency hum that I have only had for a few weeks, behaves totally different than what I am used to from earlier. What is worse is that the “outdoor effect” has gone. In fact, I perceive T stronger now when I leave the house. Even with birds and crickets around (I live in the countryside), it is always there. I hear it when I am out on the lake with the motor boat, on the train to work and when I am walking through the streets.

Furthermore I have felt a constant dizziness for the past couple of days, like if I were having a severe hangover (and no, I do not^^). This may or may not be related to T and the trial, but either way, it does not help the situation at all.

The current situation & my fears for the future
After 10 months on this rollercoaster, I can feel that I am more and more running out of energy to deal with it. Until two weeks ago, I was determined to close this chapter of my life for good once I am done with the AM-101 trial. Take the outcome (improvement or no improvement) as is and move on. I do not want to build my life all around tinnitus. Life is too precious for that. But with the new implications, the hum, the dizziness and the constant changes, it is impossible to let go (and letting go is one of my worst weaknesses). Everytime something changes, I am starting again from scratch. The panic, the focus on T, the sad moments alone.

I have many plans for the future. I recently quit my job (unrelated to T) and decided to go back to school for additional studies. This fall I will start executive studies abroad. I have been looking forward to this for a while, and it is a huge investment for me. But I have doubts how T will affect my well-being during that intense, upcoming period.

Recently, I visited a friend’s at his place, and after few minutes there, the volume of T tripled. I have experience this before randomly, e.g. during business trips in hotel rooms. But now this got me thinking. I just signed a 1-year lease for an apartment in the city that I am going to study in. What if the new place has a similar effect on my perception of T? It would drive me nuts within days, which would be a considerably bad start to "moving on".

The more I am failing to leaving this chapter behind, the more I get scared that this s**t will take over my life piece by piece (in fact, it already has to a large extend).

Well, thanks for reading. Advice is always appreciated, questions are welcome.

 

Thank you TC426 for your feedback.
Good luck I am in the same situation.
From my perception it is linked to AM101 which is ruining our life....
I thought that it was safe as my doctor said but it is therefore not the case.

 

I cannot imagine that we are only two or three to live this nightmare. What about all AM101 participants we had the same issue ? Does this side effect drop with much more time or not ? Thank you all for your feedback.

 

Did you ever ask him what made him an 'expert - specialist' in tinnitus?

 

Curious - what qualifies "mild", "moderate", and "severe" according to this expect?

 

I would say that severe Tinnitus is an intrusive tinnitus which is there everywhere , in every situation , all the day and unmaskable. Thank you AM101.

 

Well, to call him an expert is my personal opinion. He is a recognized specialist in this particular area and was recommended to my by both other doctors and fellow T sufferers. He has 20+ years experience, is the president of the country tinnitus association and a co-founder of the only "tinnitus clinic" here. From that I imply that he probably knows more on the topic than a "regular" ENT.

There are standardized forms (seen them at other doctors too). You have to answer about 20 questions, most of them indirectly related to tinnitus, and as a result you get a score: mild - moderate - severe - extreme. It is not related to how intense your T is, it is more about how strongly it affects you.


@Elgringo32; You will just have to wait and see (not satisfying, I know). I have had a significant increase for the past couple of days as well, volume and intensity in my right ear doubled. Hope for it too pass, that is the best plan I have for now.