So, back in February of 2017 I got screaming tinnitus from acoustic trauma during a loud jam session at my own birthday party. And I mean it was screaming... nothing could mask it. I heard it in the shower, at the beach, over the loud blues band that I continued to play with (I was wearing ear plugs)... but basically I could hear it everywhere. In addition, I also had really intense hyperacusis and this combo was just brutal. I went through the tinnitus spiral that everyone who has it bad knows about. The anxiety and panic attacks. I remember stopping on the way home from work almost everyday so that I could cry for a half hour before I got home. I also remember the sort of dark thoughts that come with the feeling of being utterly trapped in a torture chamber for months on end with no hope of survival and only the prospect of endless amounts of brutal pain ahead. Yet, somehow despite this, I was able to keep my life together. I kept going to work and even did a pretty good job. I kept gigging with my blues band. In fact, hardly anyone other than perhaps my wife and brother even knew I was struggling because I did such a good job of hiding it.
Well, about 6 months after the onset, my wife and I decided to take a trip to Catalina Island. I didn't really feel like going but she insisted so I obliged. It was an amazing trip. Although my ears were still ringing very loudly, I must have started to habituate to at that point it because I finally experienced some peace from being in such a relaxing and beautiful place next to the healing sound of water. We spent a week there, camping, hiking and snorkeling and I knew as I waited for the boat to take us home that everything was going to be OK... Well, I was in for a surprise. We disembarked in Long Beach an hour later and I immediately knew something was not right. I felt as if I was still on the boat. I was rocking back and forth uncontrollably. It was disconcerting but I figured that a good nights sleep would reset my balance. Well, it didn't... I woke up the next morning rocking harder than the night before. In fact I felt sea sick for weeks and I also felt extremely disoriented and confused. I just couldn't think straight and had severe brain fog. This continued for the next few weeks and finally, as I found myself struggling at my job and life in general, I booked an appointment with an ENT. He was a very smart guy and he was able to diagnose the problem as a very rare neurological condition known as Mal De Debarquement Syndrome. This condition is similar to Multiple Sclerosis and Parkinson's in its ability to utterly disable its victims. So, at that point, I still had very loud tinnitus but in addition to this I couldn't stand up straight or think clearly. I realized one day that I was pretty severely disabled and that I was spending all of my energy trying to get my life as I had known it back. Then something interesting happened. I gave up trying to be normal. I somehow accepted that my former life as I had known it was over and I needed to carry on with whatever I had left. This was a hard pill to swallow but I was just tired of fighting it.
Over the next few months I noticed my ears ringing less and less and I honestly can't say if it was the continued habituation process or if they were actually improving at that point. I think my focus was on trying to deal with the balance issues and brain fog from the Mal De Debarquement. Around the time of my next birthday (one year after the tinnitus onset), my brother (an MD) discovered an experimental therapy for the Mal De Debarquement syndrome. We tried it and miraculously it was successful! I couldn't believe it, my brain was suddenly clear as bell again and my balance was back to normal. My ears were still ringing but they seemed much quieter and mild. In fact, I was pretty much totally habituated by this point and rarely thought about them. When I did, happen to notice them, they didn't bother me anymore. Slowly, my old life started to re-emerge. I soon forgot about the intense struggles that I had had with tinnitus and started to look at it as my old friend who was always there to keep me company.
Fast forward another year (2019) and everything was going great. My wife and I decided to take a trip to Costa Rica. Well, something truly amazing happened down there. I discovered cicadas! I had never heard these little bugs before but they actually sounded a lot like my tinnitus except that they were incredibly LOUD, so much so that I pretty much had to keep my ear plugs in at all times when we were around them. We spent 3 days hiking in Corcovado listening to these little guys in addition to the howler monkeys and the other amazing sounds of that park. Well, when we finally got back to civilization and I found myself alone in the bathroom of our hotel, I realized something was different but I couldn't put my finger on what it was right away. Then it dawned on me, my ears had stopped ringing. I couldn't believe it at first. I plugged my ears and tried my best to listen for it but it was absolutely silent not even a hiss...nothing! By this point, I was so used to my ears ringing, that the magnitude of this event was lost on me. I simply walked out of the bathroom and casually mentioned to my wife, "Hey, my ears finally stopped ringing." She replied, "Oh that's nice" and that was basically it. The horror story was over... or so I thought! I didn't think about my ears again until June 28th of 2021 when I suffered another acoustic trauma...
Seeing as this is a success story thread, and I find myself struggling once again, I feel compelled to continue with my current story in a different thread. I hope one day soon to be writing another success story though. I know how much we all need hope that we can heal and recover and resume a normal life. So I share this story as much to remind myself as I do to give those of you reading this hope that it is possible to tame and even conquer this brutal beast.
I would like to end this post by sharing the phrase that helped me survive this period. This was something that my childhood friend's father (a well respected cardiovascular surgeon who also had tinnitus) said to my at my lowest point in 2017.
"Just keep putting one foot in front of the next."
I adopted this phrase as my mantra and I think that I am still here today because at my weakest moments when I couldn't imagine going on, I did exactly what he said to do and focused all of my effort on taking my next step. As I said before I hope this helps you as much I hope it helps me once again as I embark on this journey all over again...
Well, about 6 months after the onset, my wife and I decided to take a trip to Catalina Island. I didn't really feel like going but she insisted so I obliged. It was an amazing trip. Although my ears were still ringing very loudly, I must have started to habituate to at that point it because I finally experienced some peace from being in such a relaxing and beautiful place next to the healing sound of water. We spent a week there, camping, hiking and snorkeling and I knew as I waited for the boat to take us home that everything was going to be OK... Well, I was in for a surprise. We disembarked in Long Beach an hour later and I immediately knew something was not right. I felt as if I was still on the boat. I was rocking back and forth uncontrollably. It was disconcerting but I figured that a good nights sleep would reset my balance. Well, it didn't... I woke up the next morning rocking harder than the night before. In fact I felt sea sick for weeks and I also felt extremely disoriented and confused. I just couldn't think straight and had severe brain fog. This continued for the next few weeks and finally, as I found myself struggling at my job and life in general, I booked an appointment with an ENT. He was a very smart guy and he was able to diagnose the problem as a very rare neurological condition known as Mal De Debarquement Syndrome. This condition is similar to Multiple Sclerosis and Parkinson's in its ability to utterly disable its victims. So, at that point, I still had very loud tinnitus but in addition to this I couldn't stand up straight or think clearly. I realized one day that I was pretty severely disabled and that I was spending all of my energy trying to get my life as I had known it back. Then something interesting happened. I gave up trying to be normal. I somehow accepted that my former life as I had known it was over and I needed to carry on with whatever I had left. This was a hard pill to swallow but I was just tired of fighting it.
Over the next few months I noticed my ears ringing less and less and I honestly can't say if it was the continued habituation process or if they were actually improving at that point. I think my focus was on trying to deal with the balance issues and brain fog from the Mal De Debarquement. Around the time of my next birthday (one year after the tinnitus onset), my brother (an MD) discovered an experimental therapy for the Mal De Debarquement syndrome. We tried it and miraculously it was successful! I couldn't believe it, my brain was suddenly clear as bell again and my balance was back to normal. My ears were still ringing but they seemed much quieter and mild. In fact, I was pretty much totally habituated by this point and rarely thought about them. When I did, happen to notice them, they didn't bother me anymore. Slowly, my old life started to re-emerge. I soon forgot about the intense struggles that I had had with tinnitus and started to look at it as my old friend who was always there to keep me company.
Fast forward another year (2019) and everything was going great. My wife and I decided to take a trip to Costa Rica. Well, something truly amazing happened down there. I discovered cicadas! I had never heard these little bugs before but they actually sounded a lot like my tinnitus except that they were incredibly LOUD, so much so that I pretty much had to keep my ear plugs in at all times when we were around them. We spent 3 days hiking in Corcovado listening to these little guys in addition to the howler monkeys and the other amazing sounds of that park. Well, when we finally got back to civilization and I found myself alone in the bathroom of our hotel, I realized something was different but I couldn't put my finger on what it was right away. Then it dawned on me, my ears had stopped ringing. I couldn't believe it at first. I plugged my ears and tried my best to listen for it but it was absolutely silent not even a hiss...nothing! By this point, I was so used to my ears ringing, that the magnitude of this event was lost on me. I simply walked out of the bathroom and casually mentioned to my wife, "Hey, my ears finally stopped ringing." She replied, "Oh that's nice" and that was basically it. The horror story was over... or so I thought! I didn't think about my ears again until June 28th of 2021 when I suffered another acoustic trauma...
Seeing as this is a success story thread, and I find myself struggling once again, I feel compelled to continue with my current story in a different thread. I hope one day soon to be writing another success story though. I know how much we all need hope that we can heal and recover and resume a normal life. So I share this story as much to remind myself as I do to give those of you reading this hope that it is possible to tame and even conquer this brutal beast.
I would like to end this post by sharing the phrase that helped me survive this period. This was something that my childhood friend's father (a well respected cardiovascular surgeon who also had tinnitus) said to my at my lowest point in 2017.
"Just keep putting one foot in front of the next."
I adopted this phrase as my mantra and I think that I am still here today because at my weakest moments when I couldn't imagine going on, I did exactly what he said to do and focused all of my effort on taking my next step. As I said before I hope this helps you as much I hope it helps me once again as I embark on this journey all over again...
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