Ménière

I was diagnosed with Ménière's disease over ten years ago. While I was initially told this was my new permanent state of being, that turned out to be almost correct and the problem went away after a few months. It did return later, with a frequency of about once a year.

I don't think I've written about it before so let's fix that now, triggered by it being active in one of the worst cycles since the first time I've had it.

How

In 2007 I woke up after enjoying myself at a small party in a bar the night before. There was some loud music, as bars do, but nothing special and I didn't stay for very long. It was quite uneventful considering. I woke up as usual, but with a buzz in my ear. I discarded it, putting blame to the music at the party and expecting it to dissipate. A light buzz was not uncommon for me. But the buzz was still there the next day. And the day after. And it would stay like that for a few months.

After a couple of days, I don't remember how long exactly, I was behind my computer (my de facto state) in my dorm and got a sudden dizziness, I mean, extreme vertigo. Nothing like I had ever experienced before. Except a few times when drunk.

I pinged some friends who were living in a dorm above me (it was an 8 story student flat). I remember walking through the long narrow hallway to open the door for them and it was spiralling. Crazy! It was as if I was shitfaced drunk, except ... no alcohol, no buzz, only fear.

All I could literally do was lie down in bed and weather the storm. When I woke up the world wasn't spinning anymore and one of my friends was there to make sure I was okay. One of them thought it looked suspiciously a lot like Ménière. "Men who?" The doctor would confirm this was the case.

Ménière

I hate the term "disease". Makes it sound to me like I'm going to die or something. But that's what it's called: "Ménière's disease". Let me quote wikipedia:

"
a disorder of the inner ear that is characterized by episodes of feeling like the world is spinning (vertigo), ringing in the ears (tinnitus), hearing loss, and a fullness in the ear. Typically, only one ear is affected initially; however, over time both ears may become involved.[3] Episodes generally last from 20 minutes to a few hours. The time between episodes varies. The hearing loss and ringing in the ears can become constant over time.
"

That about sums it up :(

Hearing loss

For me it's my left ear. While active my hearing loss left is between 50% and 80%.

This is best enacted by taking your headphones, put one cup on your cheek then pull the other cup a away from your ear. I generally scratch the ear left and right to see how bad the hearing loss it is.

Attacks

An "attack" is the effect of so called "(endolymfatic) hydrops" falling down on your balancing hairs, which has a surprisingly disastrous effect on your body. I tried searching for an image that depicts this as clear to the laymen as the doctor explained it. I think this article does that okay.

My Ménière attacks so far have been the extreme case, albeit relatively short. My attack tends to be in three phases;

Often, but not always, it starts with a warning of seeing stars in my vision (like often experienced by people with migraines) signalling me that I need to get to a safe spot where I can lie down. There's time but not a lot. This warning tends to be 30-60 minutes. Other warning signs are increased hearing loss, the pitch of the tinnitus increasing significantly, or subtle problems with my balance.

Regardless of the signs at some point the world starts to blur and my head starts feeling heavy. Moving my head left to right or up to down, things will feel more slow motion (well not really, just feels that way) and it'll be the hint that whatever I'm doing, I won't be doing for long. I tend not to notice this warning quickly when behind a computer, if I'm focusing on a game or movie, while not moving my head so much because this stage doesn't seem to affect my eye sight directly. That surprise can be a bit annoying.

Next comes the vertigo, which hits pretty hard and fast. I need to be in bed by now and if I'm not, I'll be clinging to the walls because I can't walk straight anymore. This phase can come with heavy nausea due to, you know, the world literally spinning in my vision. My course of action is to get to bed, or otherwise lie down somewhere safe and quiet. Once in bed, even moving my head left to right, changing position, will feel like a super human task which triggers the nausea once again. But sometimes you have to :)

This last phase lasts somewhere between one and three hours for me and all I can do is close my eyes, try not to throw up, and sleep it off. It doesn't hurt. None of it really does. It's super uncomfortable but no pain involved for me. Speaking will be annoying, opening my eyes near impossible. The touch is a bit fuzzy during this period, probably because I'll be so focused on other things. I'm best left alone entirely, no noise, no light.

I'm usually able to fall asleep, luckily. Once I wake up everything will be fine again. Vertigo will be gone, tinnitus will be down, pitch as well. And I can get up and continue whatever I was doing before the attack.

Permanent?

This affliction is permanent for most people. Reading up on the problem is terrifying. Even now, over ten years later (and especially while it's active), it's terrifying to read that it could only get worse as time goes on. I kid you not, I'm almost crying when I see what might be waiting for me.

When you do read up you don't even read about the possibly of this being intermittent, rather than permanent. Imagine my surprise that my hearing loss dissipated over the course of a few months. Very stressful months, I might add. At some point I realised it was just gone and I could hear as usual, no more nothing. Weird.

I went back to the doctor and he says something like "yeah, this can be the case too, you're lucky". And I can't believe what I'm hearing, so happy. But he tells me it's likely to come back, there is no cure and it's unlikely to just up up and disappear. Well I guess he was right in that.

So the past years I've had an episode about once a year. Sometimes there's an attack, sometimes twice. Usually it takes about one or two weeks and then it dissipates again, like nothing's going on.

Scheduling

There are a few things that may or may not cause Ménière. One of the things you hear often is stress.

When I was told this state was going to be permanent I decided I wasn't going to control my life. No more than I had to, anyways (because these attacks ... there's no fighting them). There's no cure. There's no viable protection. So screw it.

Back in 2007, when I was diagnosed, I was about to start one of the most stressful years of my life (member of the board of a local student union body, a full time job). Considering the diagnosis I could have reconsidered. But considering it wasn't going to go away, didn't reconsider it.

So about six months later, despite the stress, it disappeared. It would come back. I don't really have a pattern, it just returns some times. And I explained my wife that we still shouldn't affect our life more than it had to. And so it was.

During my two years at Facebook, I've had one real and one tiny cycle. And this time had some very stressful periods as well. So I take the stress factor with a grain of salt, for myself at least.

Origin

As far as I know you're just born with this problem. They (still) don't really know much about the why, yet. It might activate at any point, like it did for me. You do see stress being mentioned as an activator, although I don't think that's the case for me. I don't smoke or anything like that. And beyond that, I haven't seen any credible activators (allergies, alcohol, medicines ... none of these really apply to me).

Children

This changed things a bit for us. Before it was just my own well being, and in part, that of my wife (she can take care of herself). But now there's kids. What happens when Ménière is active and she's out for whatever reason? So far that's not been a real concern just yet. Our oldest is four and I haven't had that many periods yet in his time. Except now.

The other question is that of inheritance. And since nobody knows, it's difficult to keep that in mind. I mean, how could you take it into account when nobody really knows what starts it? We can only be alert to signs of potential problems. And of course, having it myself they'll know about the symptoms before they know how to write. But that's a different story.

Now

The whole reason I'm writing about it now is that it started again last week. Except this time it feels different. And that's not good.

This time it started with a very low buzz, low hearing loss, which steadily grew to normal. Additionally there's a constant feeling of wooziness in my head. It's the exact same feeling for mas as when I'm in the middle of a cold (which always weigh heavy on me, perhaps due to Ménière).

Thing is, I don't remember that being part of other periods, although it's hard to say for sure. I certainly can't drive a car in this state, which I could during other cycles. Additionally, a week and a half later, I've already had about six medium attacks. These attacks had a warning period of about five minutes, probably because I'm feeling woozy all the time now so it's hard to tell the difference anymore. The attacks are just short of the actual heavy vertigo, world spinning part. But it still means I have to go to bed and still means I can't walk straight. And while these attacks are not as nauseating as the others, I feel nauseous between them. And woozy. And just like crap. Like I'm having a cold.

Oh and I am having a minor cold too. Part of me is hoping that this is causing the weird cycle. But part of me knows that's not the case because the cold is very minor for me and this is more likely just progression of Ménière, than anything else.

Unfortunately this is also the period where I started a new job. I feel like I'm already behind even though you'd rather want to start with a bang. Everybody is super supportive, it's more on me wanting to shine but being yanked back to bed by this.

And then there's kids. On the one hand it's a little difficult to explain what's going on, why I'm trying to keep my balance while klinging to walls. And on the other hand, this is the first concrete time where we're facing the "I'm on my own what happens if there's an attack"-situation.

Anyways

So right now I'm spending parts of my day in bed. Half my day feeling woozy. And so far, there's some period of feeling okay, at best. There's not a lot I can do in the evening, Tenko will have to wait. With some effort I can play a game but that's about it.

And that sucks :'(