To follow up on this. I had an extremely large dose of steroids shot into my ear today. I have always tolerated it quite well but today was extreme. I was in excruciating pain for four or five hours after the injections this time. Seems like it did literally nothing.
Were the injections successful in reversing the hearing loss or make your hearing better?
The first set of four I had done after the hearing loss reversed some of the loss. However all of those frequencies which had returned to near normal have now gotten way worse than even the initial loss. I could hear 12 kHz one month after the loss. Now I can barely hear 8 kHz. I had a hearing test yesterday and at 6 kHz and 8 kHz I was originally at a 40 dB of hearing loss. This recovered to 20 dB and is now at 70 dB of hearing loss. I have only had this a year. At this rate I'll be deaf next Christmas. The steroids for me have personally done nothing after the first batch, but even the doctor agrees I have something else wrong. They have no clue why I'm going deaf.
It seems a very unusual pattern of recovery that then turned to more hearing loss. I had never heard of this before. Have you already undergone extensive testing to rule out other issues?
I've been to four different ENT docs, three that were neurotologists. I've had one MRI and one ECoG test during all this time. I still to this day have pain in my face constantly and deep burning pain deep in the ear. On New Year's Day, one day after the injections I could barely stand up when trying to get out of bed and felt nauseous and so disoriented. Tinnitus and fullness nearly disappeared at 5pm and it was low this morning when I woke up. Now at 10pm, it's screaming loud 10/10 again and all the fullness is back. Still zero rotational vertigo. I have never been so frustrated in my life.
I'm sure the doctors have looked at medication you are/have been taking and infections. You might consider a strict Autoimmune Protocol (AIP) diet. I started the day they had to stop my medication because of possible hearing loss/tinnitus. It is a very strict paleo diet, the first 30 days were very tough. I felt like I was dying, but it has helped my inflammation. Autoimmune conditions can affect hearing, as well as, metabolic disorders. There are two very good online communities, The Meyers Way and The Paleo Mom. One is an MD and the other an a scientist. I thought if inflammation is in the ear, it can't hurt to lower inflammation. I cannot take steroids because of severe side effects, so the diet/lifestyle changes were the way to go for me.
I'll have to look into that. I have been on low sodium, no caffeine, no alcohol for nearly a year and I've found zero relief. The steroids I just had injected lowered the noise for roughly 12 hours.
I have an inflammatory condition and I've had to do it to help bring down the inflammation. I started eating a little regular food here and there over the holidays and I've noticed some symptoms. Let me know if you decide to try it. Many people in the community have seen lowering of inflammation in 3-6 months to a year, some much sooner.
https://clinicaltrials.gov/ct2/show/NCT04677972
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