They Just Don't Work!

One comment that is consistent in Narcolepsy circles is that the medications we get simply don't work.

Narcolepsy is not a deadly disorder, as are so many others. I've never heard of someone dying from it, though I'm sure people have died from accidents with Narcolepsy as the reason for that accident.

Instead, Narcolepsy is a quality of life issue. For those uninitiated, let me try to explain what I mean. See, everyone knows what it's like to be sleepy. Everyone in the world has been extremely tired. That's not unique to Narcolepsy by any stretch of the imagination. But there is a difference.

Imagine yourself staying up for 72 hours straight. You get sorta stupid tired after awhile, and it can be actually painful to go through. The good news for people without Narcolepsy is a short sleep, it goes away. With Narcolepsy, it never goes away. No amount of sleep fixes it. No amount of coffee can stop it. Day in and day out sleepiness invades every aspect of life so life becomes a significant struggle.

You can't make good decisions, are a bit crankier than you want, eat things in portions and quality that would make you shudder if you weren't so tired. You put things off, bargain for another minute of sleep, avoid anything that requires energy simply out of a need to survive.

This pretty well describes what I experience.

Now, the obvious medicines to use are basically stimulants. Stimulants are everywhere, and everyone is pretty familiar with what they feel like. If you've had more than a couple cups of coffee at a time, you know exactly what you're like on them. It's uncomfortable and unpleasant, maybe you might feel a bit jittery and tell yourself that you won't be drinking that much coffee anymore because you don't like how you feel.

With Narcolepsy, the stimulants are much stronger than coffee. They basically feel the same, just multiplied many times over. In addition to extreme sleepiness, now you feel absolutely jacked up on stimulants too. That gross feeling is exactly what I experience with strong stimulants. Still just as tired, but at the same time over-stimulated. No matter how many stimulants I've taken, I still go straight to sleep. Just that it's not a restful sleep and I won't awake feeling better, like I do when I sleep without stimulants.

Doctors who don't know much about Narcolepsy will look at me as though I'm a junkie looking for a fix. Or a psycho, either way. Since I'm half-fried and half-asleep nearly all the time, I can understand why that would be the perception. I must look a fright, hair dissheveled, clothes tattered, as though I just woke up (because I did), not the best way to make a first impression. Then my slurring speech is inevitably a whine about the medicines being useless and needing stronger stimulants, or refusing to take any more because of such and so. If my wife didn't go with me to these appointments, who knows what'd be. It wouldn't be good, I can guarantee that.

And I haven't touched on Cataplexy. Maybe next time. I guess I'm just tired.

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