One Year Anniversary: Got My Life Back

Hello there,

Yesterday (25th Sept 2015) was my first anniversary of the dumbest thing i've done in my life. Went to a rock concert in an indoor venue, exposed myself to a so-called music ( that i do not like ) which was extremely loud for more than 2 hours and voila, ringing in my ears. I was not concerned at all in the beginning as this is what you have after concerts right? And it was not the first one, just the most loud one, no biggie, right?

The second night it was still there, buzzing in my mind and that particular night, 26th Sept 2015, i had panic attacks first time in my life. The whole night i trembled out of control, cried, could not stop myself after learning from internet that Tinnitus is something real and there was no cure.

Next night, still had the ringing, but was able to sleep with some white noises as they were able to mask my ringing. In the morning, the loudness had went to half of what i had the first day, which made me much calmer and started to believe it'd go away. One week from that date, gradually the T went away. Everything was fine, forgot about it.

2 weeks after the T went away, one morning i woke up with a different T, only in my right, lower freq than before. Got an appointment from an ENT and a audiologist for a week later. The day before the audiology exam, the ringing was gone again, so went to the test, even in the silent room i had no T. Got a perfect score up to 8K. That night i assembled some IKEA furnitures, had some noise and the other day i woke up with an electrical buzz in my both ears. Almost like the sound the cheap adapters/chargers make. I thought my phone charger went bad, searched for it or like half a minute then i realized T came back. And that day, ~1 month after my onset, the T became permanent in my life. Was so sad and hoping that it'd go away again but deep in my thought i knew that this much fluctuation was not good and it was there for good.

The doc did not help, gave some advises for me to get used to it. I was devastated and the next month was disaster for me. I was obsessed with getting more knowledge as it was unbelievable for me for a disease like this being left untreated. Was mad about the science industry, docs, everything. Yelling at my kids, my wife, reflecting the hell i was going through to them. My worst time during the day was the nights though. To be able to sleep, i was listening to white noises every night, for hours.

One night, after some minutes of listening to white noise with my earbuds, i realized that the loudness of my T had increased. I turned up the volume and it was able to mask my T again. Again after some minutes, T came back crawling over the wall i built. In one second i threw the earbuds, and panicked. There was no escaping from T. And with all that, the next day Hyperacousis started. This pushed me multiple levels deep in the abyss. The H was even worse than T, as i could not tolerate even the moderate sounds, i was having very hard time driving my car, listening to my kids' conversations (mostly shouting though). So the solution to H was to get to a quiet place where the T would torture me. No escape. This is important things #1 in my healing; as i cannot get away from T and/or H, i stopped running away.

This way i reached to second month. I was still looking for any kind relief, pills, laser, pressure chambers, laser therapy, whatever. Found the AM101, enrolled to it. The day of injections was the last day of the allowed duration, 1 day off 3 month mark. Went there for an inspection, they've rejected me after me saying that my T was fluctuating. I was so angry of their decision that i fought back and made my way into the studies by busting the doors (figure of speech of course). I had my first injections 3 months after the onset and the T/H went up like crazy after injections. In addition the pain from the injections i had was made me scream during the night. Unbearable. 3 weeks after that, the T went back to baseline and i was soo much comfortable with the original levels after experiencing this shit. This is important things #2 in my healing; for the first time i appreciated the level of T i had.

I had 2 more sets of injections over the course of AM101 and with each step i was better as i felt like i was doing the best i can to cope with T/H. This is #3 in my healing; no regrets, i did my best to get a relief from a source that could lower the volume permanently.

During the injections, i realized that going after pills or noise machines etc would make me dependent on these external sources of temporary healing. Especially i could get addicted to anti anxiety drugs. I remember being so desperate in the early days that i prescribed a Xanax from an ENT. Got it from drug store but never used it. This is #4 in my healing; temporary relief is not acceptable. When you use the pills, you get better, temporarily. But you have to endure the rebound effect. I figured, a cycle like this, good/bad/good/bad would be a worse thing for my mental health (like a split personality problem, happy and unhappy moods alternating), i stayed away from ANY solution that'd give me temporary relief and would make me dependent to them. It's still in the cabinet and i have no desire to use it.

In about the 4th month, my work life was almost back to normal, i was not distracted by the T anymore. But it was loud. During my flights to LA for AM101 injections, i was always able to hear the ringing over the jet engine sounds. It was that loud. I had already given up any masking efforts and slowly getting used to it. But i was using some earmuffs to protect myself from loud sounds as the T became reactive and the loudness of my T was increasing with the increasing ambient sound level. And the H was still there.

During that time i discovered that there was a therapy group in my city. I started participating to these sessions. Talking about T made me feel much better as you cannot talk about your condition to someone that does not have T that easily. Primary reason is that it's not easy for anyone to understand this condition. Secondly there are some reports that just by thinking about and concentrating on hearing any sound people were able to get T. I was so scared about this possibility that i absolutely stopped talking about my T to anyone that does not have T. I haven't talked to my wife, friends, my family about it for 6 months. But you're a human and need to talk. So these sessions were very good to decrease the mental pressure. But the important thing is, i've met people who were suffering from T for decades. For 45 years, for 20 years. Unbelievable endurance, especially when there were absolutely no knowledge of T back then. When i met with these people i felt like i had no right to complain as the likelihood of having a cure soon (in decades) is very likely. I felt ashamed, and this accelerated my acceptance. This is #5 in my healing; getting to know other people with T and learning from their coping strategies.

In the 6th month, the reactivity of T and H started to diminish, very slowly. I continued to protect my ears at all costs. The reason for my obsession for protection was, i slowly got an idea for the whole T/H thing, how it happens really. The H/T are not the root cause, they are the symptom. The problem is that i had some hair cells in the cochlea and/or nerve endings that were malfunctioning. They were either dead or damaged. The brain was detecting the loss of information that's supposed to come from ears and with the absence of the info, it was trying to post-process the signals to recover the lost information. One part of this post-processing was lowering the hearing threshold over the whole frequency range (increasing the gain). This lead to H as i became much less tolerant to external sound. This actually became apparent with the LDL measurement in the audiologist visit. LDL is Loudness Discomfort Level and normal humans should bear 90+ db. I was stuck at around 85db and this was a clear indication of a downwards threshold shift i was having. Interestingly, this is #6 in my healing; the more i knew about my condition, the calmer i became. I was not sad or depressed anymore as i was feeling like i was discovering the truth, no matter what how ugly it was. As i knew that the real damage was in ears, i did my best not to damage it any further.

8th month and Hyperacousis and reactive T was almost gone. My days were already very OK, the nights were still problematic. I decided to push this acceptance to a little bit further, and i started to listen to my T. I putting the earphones at work for hours, which would make my ringing the primary sound i hear. My work requires my absolute concentration and as days passed like this i realized that i was aware of my T less and less every day. One day, in the evening i realized that i hadn't heard my T during the whole day. That was awesome. The T was not bothering me anymore. With that my nights became less problematic too as my brain was not treating this sound as an alien sound anymore. This is #7 and final piece in my healing; making peace with T. This is a fight we cannot win, so make peace. Making peace with T is the best course of action we can make as of now.

10th month and my life was back. Bought a motorcycle at last and i'm riding it every sunny day, of course protecting my ears. I do not get obsessed about my level of T, i do not gauge it, i cannot even compare it with how it was in the past, i forgot. I get to sleep without too much effort. If i cannot, i get up, do something for half an hour, get tired and try again. But this happens rarely if i'm too stressed about something, had a fight with someone or sad for some reason. Having a lovely life with my family, enjoying my kids screams even

So, back to normal.

I do not come to this site so often anymore, maybe once a month to get the latest news about the research. I'm definitely sure that there'll be some cure in the next 10 years, even for the chronic sufferers. Pills reducing the hyperactivity in the brain, or stem cell therapy, or some technique that regenerates the damaged cells in the ear shall reduce the T/H. It'll come, but i do not track it. In the meantime i have a life to live.

I'd never imagined in the first months of hell i was in that i'd write a success story here. Even though there were a lot constructive people in this forum telling me so it was just unbelievable that time. But here i am telling the same things. I feel like this is my obligation to pass my experience to especially newbies. Even though the ringing is probably as loud as before and i'm not cured, and have some occasionally bad days/spikes, i've adapted and have 99% of my life back. You'll have your life back as well.

Cheers.

Umut

 

@liquefact Thanks so much for this thoughtful, detailed post. You just helped some people you'll never meet, now and in the future. And glad you're doing so well!

 

Really nice to hear someone with positive stories on here. Am living the hell on earth that is the big T at the moment so nice to hear there is potentially some light at the end of the ear tunnel

 

Thank you for your encouraging words..

 

Thank you for sharing!

 

Thanks @liquefact for sharing your story. So glad to see you are back on track after one year of T issues! I remember exchanging mails in the beginning phase about our am101 experiences (and Marty Friedman haha). I never knew you suffered so badly from H and reactiveness during the first months. Good that things turned out well for you, take care mate!

 

Glad to hear that you found the road to peacefulness with T. -- I bailed on the AM-101 and really appreciate you trying it and updating us all. -- I never heard any earth-shattering results from that study..

I am at 15 months and still go up and down. -- I do relax and forget that I have it when I see a couple of my friends who have some real ailments effecting their quality of life.

My biggest hurdle is eating healthy. -- I was eating great in month 2 (to get T out of my body) and felt great but, lately, I am falling back into bad eating habits which spikes my T. -- I still sleep fine but would love to really put it in the back of my mind like you have.

I had to laugh about the report saying that T can be contagious. -- Is there really a report saying that?

 

Wonderful story @liquefact and I'm glad you came back to share with us. Hope you are still doing well, it's nice to see people find that there is more to life than the ringing. Truly inspiring.