Hi. This is, for me, a complex situation and I would really appreciate just knowing that someone else may be going through this. I'm not looking for a quick fix and am not intending to use this board to replace a medical diagnosis but I'm very scared and just would like to compare notes with at least one other person who is going through this.
I'm 51 years old and have, until last summer, always had very good hearing. I'm also blind and so I greatly depend on my hearing for just about everything. This past July, I began to feel a clogged feeling in my right ear, very similar to what it feels like when you're in an airplane and you feel the pressure changes we're all accustomed to. After around a week I went to a doctor who believed it was eustation tube dysfunction and put me on a round of steroids. At that time, the steroids seemed to fix the issue and my hearing quickly returned, sounding totally normal. A week and a half after I completed that round the feeling came back and I was put on a second round of steroids. This time, the meds helped somewhat but not totally and a third round did nothing at all. Eventually, this resulted in partial hearing loss in that ear, mainly with low frequencies. This hearing loss, while not desirable, was at least stable in its behavior for about a month. Then, on a Monday morning, I woke up to loud tinitus in that ear and realized, to my shock, that I was, to my estimate, about 80-85 percent deaf in that ear. This was a new change and we went to a see a hearing specialist, who honestly couldn't identify what was happening with me. He gave me a transtempanic injection and put me on another round of steroids. What eventually happened was that the ear would eventually open back up. I could always tell when it was about to unclog as the tinitus would, temporarily, get louder, which I eventually learned was my indication that my hearing would temporarily return. Once it would return, the tinitus would dissipate and I would have hearing which was fairly normal for about two days or so. Then, I would eventually feel it shifting downward and then it would go down again for about four hours, and then would cycle back up, with the tinitus getting louder to let me know it was opening. This cycling, while not desirable, was at least predictable. I eventually saw a top specialist in my state who believed it was cochlear Meniere's, a form of Meniere's without the vertigo. I was given a second injection and also was prescribed Flurinef, both of which did very little and the cycling continued. I'm already being treated for hypertension and the flurinef was spiking my blood pressure at levels that were freaking me out and so, with my specialist's permission, I stopped taking those meds, which he did warn me about, btw. Now, the cycling is no longer predictable. At times, I've had about a week of normal hearing and sometimes days where it goes down, then a bit upward but never normal. I temporarily went back on the Flurinef again and, this time, it seemed to help a great deal, but bp was higher than I liked and so I felt it was safer to stop it. During this time, I asked my specialist for recommendations on an amplifier and he recommended a Pockettalker. I ordered one and, even at my ear's low point, it really helped. However, tonight my hearing went so low that even the Pocketalker didn't help and this really freaked me out. It will, eventually, cycle back up and I can almost hear the tinitus changing to the point where I think it's about to shift upward again. I'd really like to hear from others in this situation to compare experiences. Were there other meds or techniques that worked for you? I'm actually willing to use a hearing aid if I can be fitted for one but I'm not sure if I can since the cycling is so unpredictable. Is there anything I can suggest to my specialist, even if it's crazy? I'm a little scared right now and was shocked that it got so bad that even the Pocketalker couldn't help. I'm sorry this message is so frenetic/I'm so grateful that this board exists and really want to get enough in this message to get this out tonight as I really feel that I need some support. Thanks for reading this.