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My Cochlear Implant - a journal

Hearing Loss | Last Active: Jul 22, 2023 | Replies (159)

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@joyces

In response to mbower, about a very recent hearing loss and getting a CI:
I've had Meniere's for most of my life, was unilateral (one side only affected) until May 24, 2019 at 6:45 p.m. At that moment, Nancy Pelosi quit speaking in mid-sentence. The deafness descended that quickly. I had gone bilateral, and my "good" ear that had age-related hearing loss (I'm 78) was as useless as my bad ear had been for nearly 40 years. I could hear a little, but was unable to understand anything via phone or conversations unless I knew a lot about the subject and was totally alert, able to guess correctly for all the missing words. By Jan. of 2020, I was at the hearing center two hours away that does CIs. Because no one (not the audis or the surgeon) had had any experience with a CI for someone with Meniere's, I didn't decide on a CI. By that time, I was also having problems with balance, and V&V (vertigo and vomiting) became part of every day for hours. That's no way to live, so I finally found a local doc willing to prescribe hormones in large doses. Two weeks into HRT, not only had the V&V gone away, but my hearing returned to the level where it had been before I had gone bilateral. Big laugh, as I had thought that I was badly impaired at that level, but it was thrilling to have that amount of hearing back!

Now, there's only been one study of women with Meniere's who've tried hormone replacement therapy (HRT), a small one done in China. However, after moderating a Meniere's Discussion Group for decades, I can report that it's pretty common for women in their 40s or older to lose hearing and/or balance due to low hormone levels. If you're in that age bracket, you might think about trying to find a doc who will prescribe large doses of HRT--if it works, it will be pretty quickly. There are lots of horror stories about cancer, mostly due to the fact that for a couple of decades docs prescribed estrogen with either no progesterone or very little. We now know that the correct balance, which is 2.5mg progesterone for 1mg estrogen, does not seem to increase cancer risk; I've taken higher doses in the past and last May, even at my age. Further, if HRT does help hearing (and probably balance in the bargain), it can be tapered down to a much, much lower amount once hearing is better. For example, I took 5mg progesterone and 2mg estrogen every day for a month, then half that amount every third day, then every second day, then every day, tapering down gradually. I can tell when I've tapered too quickly if the tinnitus increases. So, over seven months I've cut the daily dosage in half and will try cutting that in half again, first every other day for at least a couple of months.

If you also have any imbalance or are now fearful of heights (more than normal) or of falling, HRT is really worth a try. I can add that I only began to have real problems with hearing/balance when I quit taking birth control pills in my early 40s. Prior to that, I had a couple of classic Meniere's crises when I had stopped taking birth control pills for some reason (to get pregnant in my 20s, because I was getting older in my late 30s). As soon as my hearing was far better and the V&V had stopped, I went to the big Vestibular Clinic two hours away in Portland, Oregon to learn the latest in vestibular rehab. in order to add new stuff to what I've done every day for nearly 40 years. As a result, I can hear (well, not everything, but enough to get by with an aid in my good ear) and do really active things like instream surveys for fish & game. A good VRT specialist will do an evaluation to determine what doesn't work as it should. I was surprised to learn that, although I've worked on proprioception (the information your feet give you) for decades, I've lost lots of feeling in my lower legs, so have to work harder on paying attention to what my stupid feet have to tell me! Basically, once again I can move around with confidence, even wade difficult rivers without fear. Well, okay, there's always fear when crossing a river with big boulders and fast current, but that's fear that make good sense!

I am extremely glad that I did not opt for a CI but did the work to regain my previous level of hearing. For a couple of months, I bored everyone around me by saying, "Did you hear that?" Shoot...of course they did, as all norms would! The first time I heard a bird sing was a real thrill. I'm still happy that I can hear appliances or the car engine running! While I was deaf, I'd turn on the water to fill a pot, cross the kitchen to do something, and, because I couldn't hear the water running, would be totally surprised to turn around and see that the pot had overflowed! Sheesh! I don't need to feel the dishwasher or washer to see if they're running...doesn't seem like much, but is a really big deal. It's great to be back in the world again!

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Replies to "In response to mbower, about a very recent hearing loss and getting a CI: I've had..."

Wow, thank you for sharing your story with me. May I ask how soon after you lost your hearing did you start the HRT? I lost my hearing earlier this year when I was 27 so it was not believed that this therapy would have worked for me (though this and many other therapies were discussed but decided against). I tried oral steroids and steroidal injections which did not help. Because I was ill the week prior to the onset of my hearing loss, it is believed that the deafness was caused by a virus, and an autoimmune component was ruled out. I am lucky to have a very good ENT and audiologist working with me and am lucky to have the many options I have but also feel a little overwhelmed because the science and technology aspect of a CI are like a foreign language to me so it is nice to have this forum to discuss with people who arent just trying to push their product on me.