Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here

I had just gotten into bed and was trying to fall asleep when suddenly there was a man standing next to my bed, having crept into the room without me hearing him.  Terrified, I grabbed my pillow and started hitting him and kicking him as I tried to scramble backwards off the bed in the other direction.

I was grabbed from behind by my partner and I woke up swinging my pillow and kicking wildly, crazed with fear.  It was very confusing to wake up because I had been so sure I was awake in my room, in that very spot, but it was a hallucination or a dream.  My partner was freaked out, he hadn’t even fallen asleep yet, we’d just gotten in bed a few minutes earlier, and I tried to explain what was happening but, as dreams do, it was already fading.  My racing heart and hysterics took a little longer to fade, but I fell back asleep not too much later and forgot it had happened until my partner mentioned it the following evening.

I have never acted out my dreams, that I know of, but until fairly recently, I’d usually slept alone, so I may have been doing this and simply forgotten and there was no one else to remember.  I’ve had these kinds of dreams before, pretty frequently, but normally I wake up paralyzed, unable to turn my head to look at the scary man in the room or I just power through them and keep sleeping.

These dreams aren’t dreams exactly, they’re called hypnogogic hallucinations — my acting out is a kind of REM behavior disorder, which simply means that my body should be paralyzed while I’m sleeping but instead I am acting it out.  This is a lot like sleepwalking or sleep talking, but in my case, it’s a bit more aggressive.  The problem is that going into REM right when you fall asleep is apparently very unusual unless you’re sleep-deprived; it is supposed to take a couple hours for you to hit REM stage sleep.  I get 8-9 hours of sleep a night, and wasn’t at all sleep deprived at the time.

It happened the next night, too.  I was trying to fall asleep and someone was trying to bludgeon me with a stapler, though apparently not too aggressively because when my partner grabbed my hand, I was just casually trying to swat it away.  It now happens more nights than not, though I have figured out how to wake myself up from them.

After the second night, I e-mailed my doctor to ask what was going on and to basically just freak out and ask if it was something I shouldn’t freak out about.  She said not to worry about it.

I’ve been struggling with persistent sleepiness my whole life, but I’ve always been told that people are just tired a lot and I shouldn’t worry about it or that it was a side effect of my allergy medications or of having allergies in the first place.  The last 9 months have been incredibly difficult, my sleepiness has become much harder to deal with, partially because I keep getting sick — pneumonia last summer, flu in the fall (despite my flu shot), and then mono at Christmas.  The thing is, I fully recovered from all of these things, except my energy level has stayed at nothing.  I fall asleep for naps, I zone out, I can barely move at times because of how tired I am.  I feel basically like I’ve not slept in 2 days most of the time, but I sleep as much as I can manage.

I talked to my allergist about what was going on with my tiredness and she was horrified that my doctor wasn’t doing anything to fix them, so she connected me with her personal physician to be my primary care physician.

This new doctor actually spent over an hour in the room with me just talking about my medical history and what was going on, something that has never happened in my life unless I was in surgery.  She discovered I had a pretty bad Vitamin D deficiency and I thought that was that — all I have to do is get some sun and take some vitamins and I’ll be back to normal.

But when I went to my follow up visit, she said that she didn’t think it would explain what was going on.  Especially when I told her I was so tired that I wasn’t even anxious anymore, despite the fact that I have historically had panic attacks and anxiety problems regularly.

She had me fill out a Depression Screening and a Epworth Sleepiness Scale (click the links to play along at home).  My results on the Depression Screening indicated moderate depression, but only because I said I was tired all the time and it was impacting my life a lot — she said she thought it wasn’t depression.  My ESS, though, was a 16, which is what it should be if you were only getting 4 hours of sleep a night.  She looked at the back of my throat, which is apparently well defined, and I told her I didn’t snore (as confirmed by others) and I don’t kick in my sleep — so she eliminated sleep apnea and restless leg syndrome as possible causes.  This left narcolepsy — something that’s associated with Vitamin D Deficiency, as it turns out.

I had read a little bit about narcolepsy when I was freaking out about my freaking out at imaginary people at night, but I had sort of let it go.  I mean, I don’t fall asleep randomly in the middle of conversations or anything.  This, as it turns out, is not what narcolepsy is like for most people — why would I have thought Deuce Bigalow was an appropriate source of information?  I told her about my hallucinations and acting out in my sleep lately.

She said that I could wait for the Vitamin D deficiency to be fixed, but if it was her, she’d go ahead and get a sleep study.  I was concerned about the cost, but she said that with my symptoms, insurance would almost certainly cover it.  And I went home to wait for the sleep study people to call me and to do a lot of research on narcolepsy.  I am unaccustomed to doctors knowing more about conditions I may have than I do and it was making me nervous.

Next: Part 2, WTF is Narcolepsy?
Part 3, The Sleep Test
Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

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Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here
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