In the late 90's I realized I was not hearing speech very well anymore. I was beginning to misunderstand what people were saying. This is not a good thing for a person who is a teacher in a maximum security juvenile detention center and is only 40 years old.
A sullen boy, looking down, and mumbling is not easily understood in the best of conditions and I was noticing that even when they were looking at me and did not have any sort of accent or attitude, I was misunderstanding frequently. I had a roomful of these boys as my students and something had to change. I had seen an audiologist in the 80's for the same thing, and I was basically told it was all in my head. I left teaching that year to be a stay home mom for a few years and so it seemed the problem went away. Probably, in reality, it was being out of the classroom environment where I was being bombarded with the need to understand several people speaking at once that made the difference.
In 2001 I realized there was a problem and started noticing a horrible fatigue about noon each working day. I did not realize that these 2 things were connected. When I saw an audiologist, he saw there was something going on, but could not figure it out. I tried several small, in the ear hearing aides and really found no relief. He sent me to a doctor who told me that I was losing hearing, but basically told me to just accept it. Because I was now losing hearing rapidly and my "good ear" was also having worsening fatigue, I decided to see a specialist about 50 miles away. He wanted to rule out auto-immune diseases and wanted to put me on very high dose steroids for a month to see if that helped. After reading the information on the steroids I decided that I needed a better answer than to just experiment.
It was at this point where my general physician agreed to refer me to a University of WA Medical Center Otolaryngologist who very quickly diagnosed me with very aggressive, early onset (I was only 45 in 2001) otosclerosis. When he checked my history and found out that I had had a very severe case of a certain strain of measles going around in 1960 when I was 4 years old, he said that it matched an ongoing study showing that the early onset and aggressive form might be related to those measles decades before.
He suggested I have a stapedectomy, which would be an easy outpatient procedure that had a 99% chance of fixing the problem. He joked with me when I asked about the 1% risk and he told me I was the picture of health and much younger than his average oto patient and that I would not be the 1%. I had the surgery and now AM part of the 1%. I came out of surgery with the worst dizziness anyone could ever imagine and very little hearing. I had the surgery repeated less than 30 days later and got back some hearing, but less than I had even had before the surgery. A hearing aide would not help, so I coped.
Eighteen months later I woke up at 4 AM with a strange feeling in my head and my body and realized that it felt like my surgical ear was "dying" and sure enough, as the minutes passed I lost all perceptible hearing in that ear and it was replaced by a sound, known as tinnitus, which for me sounded like the loudest buzz saw imaginable. It was beyond torture. My husband got up and called the dr. who ordered us to get in the car and drive the 5 hour trip to Seattle without even stopping for a shower. I got there and he decided that we must try high dose steroids immediately and within a few days my hearing got a little better. Unfortunately, as soon as we tried to even minimally reduce the steroids, my hearing loss got worse. The dosage was not a dosage I could live on and so we let the hearing go. The tinnitus remained at such a level that I felt I would become suicidal. I felt I had no hope.
My hearing loss was one thing but the tinnitus was pure hell. I could not sleep, read, or do anything. I called my dr. more than once, sobbing and he said if he had an answer he would be the richest dr. on earth and that I would have to live with it. Despair became my closest friend. In addition to worrying about losing my job, my social life, I also worried about losing my mind. I got a hearing aide for the other ear and within a few months I got a BAHA (bone attached hearing aide) on the deaf side, and coped much better with being able to hear, but it did not lessen the tinnitus at all.
I read everything I could find, began to chart when the sound was better or worse, and tried to "study" what was going on. I quickly learned that if I was tired, not feeling well, pre-menstrual, or stressed, it would get worse. I learned that when I was experiencing something joyful, that I was immersed in, that it would be less IF I were not over excited at the time. I felt I was onto something. I practiced my own form of biofeedback. I learned to slow my breathing, slow my pulse, sit very still, and it helped a little, but I still felt overwhelmed.
In reading about the 5-10% of people who learned to manage tinnitus, I found a commonality. They all had quit actively fighting it and instead were working on acceptance and beyond acceptance to actually welcome it. There is a technique when dealing with anxiety that requires not fighting it but actually welcoming it and even trying to make it worse by concentrating on actively trying to become more anxious and increase the physical symptoms by breathing harder and concentrating on increasing heart rate. I experimented with trying to hear the sound and all the intricacies of the sound in my ear. I tried to hear every nuance. I concentrated for 10-15 minutes at a time, and sure enough, it got a bit less.
For some reason, I decided to make the sound positive, as crazy as that sounds. I decided to imagine the most peaceful setting I could. For me it was in a hammock in the sunlight filtering through the trees in the woods, next to a lovely yellow old farmhouse. In my mind I decorated the porch with items, designed an old fashioned screen door and imagined almost every detail I could. Once I had created the picture and let myself close my eyes and relax into it, I made the tinnitus the soundtrack that went with it. Within a few weeks I was noticing the tinnitus 50% less if I did this several times a day for 10-15 minutes a time. I even got to the point at work where I took 3 minute restroom breaks and did it for 3 minute slots throughout my busy day. I made myself feel happy about the visual setting and made myself accept and even try to like my friend, the soundtrack, that went with it. Over a period of several months I learned to manage the tinnitus to the point that now I can actually go a week without noticing it. No, it has not lessened. The minute I think about it and focus on it, I am completely aware that it is still there. But instead of fighting it emotionally or physically, I make it my soundtrack of peace. Not always easy, but because I can now count on it, I can attain that level of awareness in my mind within a few seconds rather than needing 10-15 minutes at a time. Because I know it works, I can patiently work with it, knowing for sure that it will come back under control.
There are times when stress or pre-menstrually (yes, at the age of 58 I am still regular--which is another tale of being in the 1% yet again) or getting sick, when it gets hard enough to deal with the tinnitus that I have to go back to my 10 minute sessions. I often do this when I cannot sleep at night and find doing it when the tinnitus is not really bad, seems to actually be preventive.
Remember the tiredness? It was from trying to hear and decipher. When I had the BAHA surgery and learned to manage the tinnitus, it went mostly away.
I was able to continue to work and am now in my 17th year as a "juvie jail teacher", which I totally love. Unfortunately, only a few months after my BAHA surgery my husband was diagnosed at age 49 with early onset Parkinson's and 5 years later had DBS surgery for that, my oldest son became life threateningly ill, my MIL died, my father died, and several other things happened all at once. Due to those life issues I sometimes had to do my visualization with my inner "soundtrack" up to 4 or 5 times a day. Life is much better for all of us now, but I have learned to use my technique for all sorts of things in my life. Some would say it is a form of yoga or meditation and I would probably agree with that. In any case, tinnitus is now my friend and we have called a truce.
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