Do any of you have Meniere's disease?

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Hi again.

I went back to my ENT on January 30. The audiologist performed one additional test because, as she put it, my subjective experience of hearing loss does not completely match what the regular tests show. Conclusion: broken inner ear cila, in addition to the Meniere's. She told me that condition is usually caused by viral infections.

I have felt "off-balance" (as described earlier in this thread) for as long as I can remember. My first really bad flu was at 11 months old...I think you can figure out the rest.

Now, I'm questioning everything I thought I knew regarding having AS. Social difficulties could have arisen from not hearing people correctly. Balance problems/clumsiness from the vestibular cilia not functioning correctly. There is also a phenomenon called "recruitment" which "involves some hearing loss with sensitivity to loud noises" (http://www.healthguideinfo.com/ear-nose-throat/p68012/). Yep.

I should feel relieved, but for some reason I feel cheated. If all of my problems were due to my ears, and I was treated like a weirdo who was "making things up" for most of my life...WTF?!

Of course (and this is the other part), I could still have AS also. Now I'm just really confused....

I'm not sure what to do next. Any thoughts?

I am aware of how hearing issues can and do cause social issues that could be confused with AS. One of the common problems people with hearing issues is communication in large groups, caused by a lack of the "cocktail party affect," or the ability to focus on one conversation. People on the spectrum simply lack this ability to focus, people with hearing issues, can't hear well enough to separate the conversations. Either way, if you have problems with conversations, you withdraw and start avoiding conversations, which in turn means that you are avoiding people in general.

I understand the let down you have with the hearing diagnoses. When I was originally diagnosed with Meniere's I started basing my whole life around it. Then I was told I didn't have it by a second doctor, and felt like I had wasted a couple years of my life. Then a few years later, a third doctor told me that I did in fact have Meniere's and again felt let down. I've been through the doc's and keep getting different diagnoses, different treatment plans, none of them really working. Being told one thing by one doc, a different thing by another doc, and something different by yet another doc. Not quiet the same scenario you experienced, but enough parallels there that I can say that I understand the frustration you're experiencing.

Thanks, FDM.

I still wonder if at least part of it is AS--I've considered trying for a "real" diagnosis over the last few months, up to the point where I found out about this latest development with my hearing/balance issues. However, I may not be able to separate the problems I have due to my hearing/balance from anything that is *actually* caused by AS...aagh.

The doctor told me that, in cases of broken cilia, the only course of action is a hearing aid. All that's stopping me there is the potential expense, but paying it off would probably be an option. However, the balance issues really bother me--the vertigo is nearly constant now, at a low level (feels like "floating"), and I'm getting motion sickness when I take the bus, which hasn't happened to me since I was 10.

*Sigh* I should be making an action plan to deal with everything--don't know why I just feel kind of defeated right now.