Ménière & me

After a week of being practically housebound with any measure of noise and movement enough to set things off I have determined that for Ménière and me, drugs are not the answer — Betahistine, specifically. No. If the doctor tries to prescribe it again I shall be politely telling him where he can shove it. For all it improves there is a cost that is very high, one I’m unwilling to front.

Ménière holds no schedule. It turns up when it wants, stays for as long as it wants, and it leaves just the same way.

It general, when it arrives, it is:

  1. Unbalance on the feet
  2. Dizziness, with disorientation
  3. Sickness that might or might not produce
  4. Weakness of the body
  5. Pressure in the head
  6. Ringing in the ears
  7. Deafness

Huh?

It’s also eye strain and tiredness, and a sensitivity to noise.

I usually get this in the morning but for the past week it’s been an ongoing, daily extravaganza — it’s been so frequent as to be constant. Non-stop.

Ménière doesn’t need much reason to start, if any — sound, movement, something to do. Anything. Doesn’t matter.

From colourful to translucent skin as the wave of unbalance, dizziness, weakness overcomes — the pressure in the ear builds and builds, rings — huh? You gotta sit down if you’re standing, doubled down to the ground until the shaking stops.

The problem, you’re on the floor and need to barf — tough. You’ve just got to do it where you are because you’re not making it to the toilet. Ain’t happening. You can’t stand let alone get there. No way. You should’ve brought a bowl.

And then the colour returns to your cheeks like as if nothing ever happened, until about an hour later when the pressure starts to build in the ear again and you know its about to happen.

My left ear is the culprit, my phone ear — my right ear has Ménière little but my left ear has Ménière big. Real big. It got a good deal buying bulk, I suspect.

I’ve banned phone calls unless they are an emergency because within minutes of starting the call the pressure in the ear starts building, this wave of unbalance forms, and I’ve gotta go, get off the phone right now, or else I’m gone.

Betahistine ain’t a nice thing

In short, it just makes things worse. Sure, it takes away the unbalance but it just seems to store it all up until the drug has worn off and then you’re super unstable and more likely to fall. The sickness and weakness is much more frequent, is made almost constant, and not in a mild form.

To combat just how vicious this drug is I started taking it not right after food but during food, actually popping it in before I swallowed, and that did seem to lessen the crippling indigestion. It did nothing for anything else; I’m sorry but this drug is awful.

Betahistine causes more bother than it solves.

Today with Ménière

I’ve stopped taking the drug — I didn’t take any yesterday and I was in no way fantastic but I wasn’t anywhere as bad as Thursday, and I only went translucent like four times total! Result.

Today, I ain’t taking any and I won’t be taking any tomorrow, and the rest of them I ain’t taking at all. No way. Betahistine and me are done. Finished. Fuck off.

I have no balance, none at all. Sometimes I do but I mainly don’t.

When I stand it up I teeter like a drunk, might need to put out an arm or leg, or everything to stay upright.

When I start walking I seem to get on plane like a boat (I’m not confident on the physics here) and then I’m cool, I just can’t stop. After walking more than a couple of steps stopping can make me go translucent and hit the deck.

On short journeys, like between the kettle and sofa, stopping takes me an extra step — it’s a step that needs arms or legs flung out to stay upright, though. I’m working on making it graceful.

Noise: I purchased ear defenders but (a) they’re uncomfortable, (b) I look ridiculous, and (c) they increase the pressure in the ear. I also purchased those little squishy ear things that you stick in to reduce noise and they’re alright but they can also increase the pressure, making them better out than in.

I’m mostly sat in silence or with everything down low — as long as things aren’t too close to my left ear then I seem to be alright.

So far, today, everything’s been mild. I feel sick around the edges, my eyes are vibrating, and my left ear feels stuffed and is hurting. I’ll go translucent at some point but I’m rosy cheeked right now and that’s something.

With Betahistine in my system I wouldn’t be feeling this positive.

Right, I need a cuppa so I’m off to pirouette to the kettle. Grace, I can do graceful. If not, comedic — people need a laugh.

Tomos James