Category Archives: Hearing Loss

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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Invisible afflictions

A Facebook status that sometimes makes the rounds tries to make people aware of invisible afflictions.

Here’s my invisible challenge: My hearing is mostly gone in my right ear, as of a couple of years ago. My right ear also has a constant, maddening 24×7 hum.

Most of the time, my hearing friends and colleagues wouldn’t notice the difference. My left ear hears just fine (“for someone your age,” as one specialist put it). As long as my left ear can hear you, all is well.

However…

If you’re speaking quietly on my right side, I probably won’t hear you.

If you’re speaking normally on my right side, but there’s noise to my left, I might not hear you. You might not even notice the other noise, tuning it out automatically. For me, even a smallish noise to the left can start canceling out what you’re saying on my right. Have you ever been on a conference call, calling into a room where people were gathered around a speakerphone? It’s like that. If someone shuffles papers near the speakerphone, people in the room barely notice, but you have trouble hearing whoever’s talking because those little noises drown out the rest.

One weird effect of unilateral hearing loss is that all sounds come from one direction – my left side, the hearing side. In other words, I don’t know which way a sound is coming from, unless there’s some visual hint. In the car, when I hear a siren or a horn, I have to look all around because I don’t know where it is. If I hear someone say my name, I have to look all around if I don’t already know where you are.

If a cell phone or wireless handset rings and I don’t know where it is, I can’t follow the sound. I can experimentally move in a random direction to see if the next ring seems closer or farther, but that takes longer than instantly knowing which way to look.

Stereo and surround sound don’t do me any good.

Noisy rooms are very challenging. With all sounds coming from one direction, a noisy room becomes a large, undifferentiated cacophony of sound. I have a terrible time trying to focus on any one person talking, and I might have to lean my left ear closer to the speaker’s face. I become desperate to get to a quiet space.

Here’s another weird thing. If you talk to me when I can’t see you, I might not realize you’re talking to me. Apparently, normal bilateral hearing helps one come to that realization quickly. Without it, I keep failing to realize that someone is talking to me. I hear the sounds of someone talking, but it doesn’t sink in that it’s aimed at me. While that could happen to anyone with normal hearing, I find it happens to me a lot more often since my hearing loss. It takes longer for me to realize that the words are intended for me; in effect, I’m ignoring you, but it’s unintentional. People wind up looking at me funny, wondering why I didn’t respond sooner or why I don’t know what they were saying. Even though I try to be alert to this because I know it can happen, it keeps on happening. It’s a weird and frustrating effect. So here’s a tip: If I can’t see you, say my name to get my attention, or I might not realize you’re talking to me.

Sounds are sometimes harder for me to identify. For those of you with normal hearing, you know which way a sound came from; you look that way and see a likely candidate for making that sound, so you quickly figure out “That book fell over” or whatever. In my case, I don’t know which way to look, so there may be a lot more candidates that could have made the sound, which makes it harder to figure out which one it was.

Anyway, there’s one silver lining. If there’s noise while I’m trying to sleep, like heavy wind and rain, I sleep on my left side. My good ear is mashed into the pillow, and my right ear is pre-muffled. Personally, I’d rather just have normal hearing, but I’ll take the silver linings where I can.

I have no idea if this is going to get better or worse. The good news is that the doctors “ruled out some very bad stuff,” but the bad news is that we’ll just have to see how it goes over time.

Jim

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