I was thinking. I know I will never have a solid diagnosis. And what ticks me off is without a solid diagnosis, how can I ever get this fixed? I mean, I know it could be well within the realm of possibility that this isn't fixable, and that's fine too... But what if it is? And I go through my life, because doctors don't think names are important, with this thing that they could totally treat?
I guess I know deep in my heart that if it were something easily fixed, they'd have figured out what it is by now. But it's just a devil of thing to accept.
My sleep doctor is fairly sure it's probably Idiopathic Hypersomnia (well, there's a dumb diagnosis. You're sleepy, and I don't know why!) She doesn't think it's narcolepsy. Like I said, I've had a few incidents I think could have been cataplexy, or it could have been me reacting weirdly to emotion. (A time I'm thinking of specifically, it could have been my body's response to the overwhelming urge to throw a phone through glass doors).
The only way to know for sure is an MSLT, and that would require I go off every form of medication I'm on. Not a good thing.
The doctor said that the name doesn't matter.
But the problem is, it really does. I so want to know what I'm dealing with. Especially if it is narcolepsy. A name means a lot.
Not just from the standpoint of knowing what you're dealing with (though that means a busload too.) Not just from the standpoint of knowing, "When I wake up in the morning, I'll feel good, then get tired quickly, but I won't lose the ability to talk or speak for long." Not just from the standpoint of knowing, "This is as bad as it is going to get."
It means a lot when someone asks you, "What's wrong?" to be able to tell them something. What's wrong? Well, ain't that the sixty five thousand dollar question. If you can answer it, I'll give you an honorary degree!
Because when you say, "They don't know..." people assume, then, there is nothing wrong. People who haven't been through this sort of thing, anyway. Suddenly you're a hypochondriac. Suddenly your tiredness and fatigue is simply... "Wow, I could use a week or two vacation where I sleep in every day."
They make all sorts of assumptions. I don't think there'd be anything good about saying, "I have narcolepsy" or, heck, even "I have [insert any other fatigue causing debilitating illness here]." No one wants to have to say that. But at least I could say something, instead of, "I don't know."
Just because it isn't going to kill me, just because I don't look sick, doesn't mean it isn't serious. I almost kicked a doctor awhile back (if I had the energy) because he made the most idiotic statement, "You don't have anything degenerative going on. That's good! You don't have any of these [insert list of horrible diseases I wouldn't wish on anyone]!" And then he left with that. He didn't give me any sort of suggestions as to how I can reverse feeling like crap. I would have appreciated the gesture, even if they ultimately didn't work. He essentially told me I should be happy.
Well, yay! I'll live to a ripe old age, sleeping 12-15 hours a day, if I'm lucky, and feeling generally miserable. Thanks for that bit of good news!
And I don't think he meant it to sound that way, of course. And of course I'm happy it's not lupus or rheumatoid arthritis or anything horrible like that. But the problem is, the doctors seem to often lose sight of the fact that quality of life, even though what I have doesn't have a name and won't kill me, is zilch.
I have only awoken 1-2 times a night the past two nights with CPAP, that I am aware of. That's a plus.
I also ordered a memory foam mattress topper. (Great sale at Overstock, if you're in the market). I am hoping it arrives soon. I am really hoping it helps some. I figure it can't hurt.
I'm a 34 year old woman with multiple sleep disorders (sigh). Sleeping's been a lifelong sort of love hate thing for me. I had my first polysomnography in 2001, and I was told I was "fine." Turns out, from my history and the muscle tone that the PSG returned, I showed signs of REM Behavior Disorder.
Fast forward three years, where my neurologist, on hearing my reports of ungodly fatigue (more like someone turned up the gravity) and daily headaches, declared I needed a sleep study.
That time they found moderate obstructive apnea.
Did my CPAP titration, wear it dutifully. But I was still so tired. I mean, tired like I was smote from on high. So two weeks ago, I had a re-titration.
They discovered (this time) I needed my CPAP turned up and I have Periodic Limb Movement in Sleep Disorder. I also have an extremely abnormal sleep architecture.
What I wouldn't give to sleep through the night!
