Friday, March 6, 2015

Take that, tinnitus!

I wasn't going to post about tinnitus again because, well, this is the internets, and you know what that's like.

But the case of Robert McIndoe, 52, made me reconsider.

A lot of medical professionals think tinnitus is a minor problem, and for many, it is.

But it wasn't for Mr. McIndoe.

It was drove him over the edge. He got it about a month before I did and didn't sleep for three months. He tried acupuncture, alternative medicine, and visited three hospitals and two doctors. But he didn't get help in time.

First he tried to kill himself with an overdose of sleeping pills, and then later he stabbed himself to death. From the inquest:

'Having said that, the fact that this man repeatedly requested referral and walked across London from hospital to hospital, paid for private consultation, was seen by an ENT specialist and a psychiatrist, but had not started treatment three months after damage to his ears, is a shameful reflection of professional communications and access to services in the NHS.'

I, too, was knocked off kilter by the initial onset of tinnitus. At first I thought it would be a mere nuisance, that it would go away, that it would get better and everything would return to normal. But it didn't.

The big difference between Mr. McIndoe and I is that, one, I imagine his tinnitus was much worse than mine, and two, I thankfully got better medical care.

After three months of not sleeping I began to think my future was limited. I went so far as to make out my will. From the article, it seems Mr. McIndoe took steps along these lines as well.

It's understandable. My reasoning was shot, I felt dizzy, constantly nauseous but endlessly hungry, had migraines, saw spots, and experienced sensations in my head I'd never felt before and would rather not feel again.

The initial shock of tinnitus leads to poor decision making. No question about it. Sleep deprivation makes it worse. Three months with no sleep and a smoke alarm going off constantly beside your ear will make you do funny things.

So I sympathize with this guy.

If you have recently acquired tinnitus, first, you have my sympathies, believe me. Secondly and more importantly, know that it does get better. There is hope. As you have no doubt already read, the first three months are the worst. They're right. That seems pretty standard among sufferers, and it's what I read on discussion forums over and over.

After three months, you start putting together coping mechanisms that help you deal with the noise.

Early on I spent one night at the foot of my fridge on the kitchen floor because it was loud and emitted a noise close to the tinnitus. And there's a bathroom on the second floor where I work that I like because the fluorescent light bulb emits a loud, obnoxious hum that masks the ringing.

You'll never view sound quite the same way again.

The first thing you need to do is get sleep again. That's priority number one, as it will make you much, much stronger and more capable of dealing with tinnitus.

The solution for me was Remeron, which is primarily an anti-depressant. The doctor I was dealing with seemed to think this (depression) was my primary problem, and after dealing with tinnitus and sleeplessness for three months, I readily admit I was rather depressed, but that was a side effect. In fact, the sleeplessness caused by the tinnitus was worse than the tinnitus itself.

Lifting my mood wouldn't make much difference if I still couldn't sleep.

Remeron, however, makes you very drowsy. Not at first. But after a couple weeks, my limbs felt like lead weights within an hour of taking the pill, and I finally got a full night of sleep. I had given up hope that would ever happen again, so it was a magnificent experience. I hesitate to say it was like being reborn, but it was close.

For the next month I did nothing but work my day job (which I had managed to keep while the rest of my life fell apart) and sleep. My brain felt like it had been grated raw. It was sore in ways I find hard to describe and which probably make no sense, medical or otherwise.

It's taken three months, but I finally feel back to normal. Three months of sleeplessness, three months to recover.

And so we get to the main point of the post: there is hope. Hang in there. It gets better. You can do this.

Here's what's worked for me:

1) Keeping white noise devices around at all times. Early on, this was especially important. Multiple devices can help, too. I use a humidifier (absolutely wonderful, lots of frequencies mixed together, varied), a phone app (also good, but one note), and an electric heater which I just put on 'fan' mode. I position them in different locations so the noise comes from multiple directions. That seems to help for some reason. Focus on one noise, then, when the tinnitus threatens to overwhelm it, switch to another noise. Repeat as necessary.

2) Avoiding quiet environments except for…

3) Listening to the tinnitus roughly 10 minutes per day in an environment I control. The idea is to listen the tinnitus it, accept it (it likely is not going away), not let it irritate me, and become acclimatized to it.

4) Exercise. Tires me out and makes sleep easier to reach.

5) Avoid caffeine. I love coffee, but it can make the tinnitus louder. I drink tea now, and only in the mornings. Every now and then I drink some coffee, but it's very rare.

6) Yoga and meditation. Yoga is fantastic as the poses are complex, my coordination is terrible, and it requires a lot of concentration. Meditation is much more difficult than it used to be for me, but if you add counting backwards, or anything else that complicates it, there's less brain power left over to concentrate on the tinnitus.

7) Remeron. This medication I credit with saving my life. I'm not kidding. It may or may not work for you. There are others to chose from. See your doctor.

8) Do not let medical professionals turn you away if you are entering a state of extreme distress. They may try to brush you off. Don't let them. Be polite, but be stubborn. Canadians naturally don't want to make a fuss. Go to the ER if you have to. In fact, I was advised to not only go, but to refuse to leave until treatment was offered. Kick up a fuss. Better to be a pain in the ass than dead, and the squeaky wheel gets the grease, as they say. The ER is not there for the convenience of doctors.

Lastly, here are some supportive words from Captain Kirk himself, who got it fighting a Gorn:

You are not alone.

We now return you to your usual channel of post-apocalyptic mayhem.

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