The “Agoraphobia” of Ménière’s Disease

A year ago today, I was in the hospital because of severe vertigo and hearing loss. My Ménière’s Disease had gone from unilateral (one side only) to bilateral (both sides).

An episode of Call the Midwife included a character suffering from agoraphobia because, as the fictional doctor explained, she had Ménière’s Disease. The character took the view that it was a normal effect.

I’ve never heard of agoraphobia being associated with Ménière’s Disease in any other context. But I can see why it could be.

One of the effects of Ménière’s Disease is fluctuating hearing loss and tinnitus, which the (non-fictional) doctors tell me will probably stabilize into permanent hearing loss and tinnitus of some degree. That already happened to my right ear several years ago, leaving it mostly useless. My left ear is the fluctuating one now, with effects anywhere from mild to severe hearing loss and tinnitus on that side. However bad they are now, they could turn better or worse in a few hours or a few days.

At my best times, a one-on-one conversation in a quiet place isn’t much of a problem, but a noisy space is a lot harder to hear in than you might imagine. At my best times, then, it’s Ménière’s-induced introversion. I’d much rather talk to one or a few people in a quiet place, and I find it very taxing to be out in a crowded, noisy place. (I score roughly halfway between extroversion and introversion on the MBTI, so Ménière’s is making me more introverted than I’d normally be.)

At my worst times, even a one-on-one conversation in a quiet place is difficult, and the hearing aids don’t help. Turning up the volume doesn’t turn up the clarity.

Another effect of Ménière’s Disease is intermittent vertigo. Just like the hearing loss and tinnitus, whatever state it’s in now could last for a few hours or a few days, and then it’ll change unpredictably. At the best times, I have no vertigo (woo-hoo!). When it’s relatively mild, I can walk about, but sudden head turns or direction changes can make things worse. Reading up close can make things worse. I don’t drive in this state. I minimize computer usage in this state. When the vertigo is more severe, walking becomes difficult. The room swims. Reading becomes all but impossible, because my eyes can’t lock onto one spot. I don’t dare drive like that. All I can do is lie down until it passes. After it passes, I’m usually wiped out, and I need to sleep. Fortunately, the doctors predict that the vertigo will probably taper off, eventually.

As a result of these effects, all my plans are tentative, because I won’t know until a few hours ahead of time whether I’ll be able to walk, drive, or hear. It makes me reluctant to go far from home. I might need to cancel plans at the last minute, or leave early if I do show up.

Agoraphobia? No, not quite that. But going out into the world is a bigger challenge than it used to be.

One other effect of Ménière’s is that it can play havoc with your stress levels and attitude. It seems that the research hasn’t pinned down how much of this is a direct physiological effect and how much of it is the constant uncertainty about what each day will be like.

For me, the best cure for stress and attitude is spending time with people I like. Because of the hearing issues, it needs to be in a quiet place with no more than a few people. We can talk about whatever we’d normally talk about and do whatever we’d normally do (as long as I’m still able to do it). Being in the company of people I like works wonders in draining off the stress.

There’s the unfortunate irony, though. Ménière’s gives me a greater need to spend time with people I like, while also making it more difficult to do just that.

That episode of Call the Midwife had an unspecified magic pill that made the Ménière’s patient’s problems go away quickly. No such luck in the real world, but at least I’m not agoraphobic.

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Filed under Hearing Loss, Ménière's Disease

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