Adventures in a Possible Narcolepsy Diagnosis: Part 3, Sleep Test

Scheduling the test was an insurance nightmare.  As it turns out my ACA insurance (the second most expensive plan offered in the South Carolina Marketplace) doesn’t cover a single sleep specialist in the state.  I’d have to drive to Charlotte, NC, or Augusta, GA, to find a sleep specialist in my plan.  I even called the insurance asking for help and they wanted to send me to pulmonologists that have no special training in sleep disorders — in as much as pulmonologists deal with breathing issues, I thought that this was not the appropriate choice, so I decided to reach out to a lot of people to see what the deal was.  I never heard back.

The sleep test itself, however, was covered, just not a doctor to diagnose me based on the results, as long as I went to the Catholic hospital’s lab and not the sleep specialist lab.  Of course, covered it is still a lot of money, but nearly $4,600 less.  With this and the other expenses of all the appointments I’ve gone to trying to figure out what’s going on and know I will go to, I’m going to be out about $1,800 in medical costs, and that’s before I even try to treat the thing (assuming there is a thing)… hopefully the sleep lab takes installments :/

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Most people who go in to get a sleep test are there to see if they have sleep apnea (hence why the recommendation of a pulmonologist) but I was scheduled for a night before when they’d have someone come in during the day to do a nap test.  To get diagnosed with narcolepsy you do an overnight sleep test to see what it looks like when you sleep at night called the PSG.  The PSG is not enough to diagnose narcolepsy, it’s mostly to eliminate other diagnoses and make sure you sleep enough hours before you do your nap test.  You have to sleep at least 6 hours to be allowed to take the nap test.

I was really worried about the whole thing.  I’d read horror stories of people having allergic reactions to the glue, being woken up repeatedly by their lab technician, not being able to sleep at all because of anxiety, and many other stories.  In my mind, I imagined a room like a surgical room or MRI room — bright white with lights shining down on a twin hospital bed being poked and prodded and attached to hundreds of wires.  I was afraid I’d be locked in without food or ability to leave.

I was way off about what the room was like.  It was essentially the same as any hotel room.  Television, snacks, water, attached private bathroom, big comfy chair, big comfy bed.  And a creepy camera to watch me all night.  The night stand was covered with what I assume are CPAP machines of some kind.

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My sleep tech was awesome.  She answered all my questions and we laughed about Rachel Maddow.  It was great.  It took a really long time to get all the wires and things on me, so it was great to have someone fun to talk to beforehand.  I arrived at 8 and I was put into bed just before 10.  There was another woman there being tested for narcolepsy.  Interestingly, she was also a ginger, which I find interesting because the only person I know with narcolepsy is my partner’s mother, who is also a ginger.  Once I had all the wires on me I was extremely worried about falling asleep, especially because I never go to bed at 10pm, that’s so early for me.

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I did have a little trouble falling asleep — it took probably ten minutes instead of my normal 5.

I woke up a lot all night.  Even though I sleep with earplugs, every noise jolted me straight up in panic.  I didn’t, however, have any sleep behavior, I think because I had to stop taking any stimulants.  The tech woke me up messing with the climate control because I was too warm and that apparently messes up the test.

Then at 6AM, which is about 3 hours earlier than I go to bed, her voice woke me up over the intercom.  And she came in and unhooked me and, while she couldn’t tell me anything about my results, did say that I had slept all night and fallen right back asleep when woken, and I had been “in REM a lot.”  That points to Narcolepsy, but it’s hardly conclusive.  I got unhooked from many of the wires so I was much more comfortable.

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My night tech was replaced at 7am with a day tech who was perfectly nice but not as awesome as the night tech.  She was in charge of the MSLT, “Multiple Sleep Latency Test,” which everyone just called the nap test the whole time.  For the MSLT, you take 4-5 naps and they see how long it takes for you to fall asleep AND whether you go into REM when you nap (this is called Sleep-Onset Rapid Eye Movement or SOREM).  At 7:40am, I got put down for my first nap.  I did that thing where I was pretty sure I had napped because time was wrong and I had some vivid images happening in my head and I was super groggy when the tech came in to wake me up and I was definitely *woken* up.  She asked if I had slept, I said I thought I had, and she asked if I had dreamed, I said I thought I had.  Both of those things are also associated with narcolepsy :/

We repeated this little dance at 9:40, 11:40, and 1:40.  I got increasingly emotionally unstable at being forced to get up out of my naps, I almost cried I was so frustrated at her after the 1:40 one, which felt both ridiculous and completely justified.  I got the sense that she’d dealt with some actual tantrums, because she was so apologetic.

At the last sleep test, I was struggling to stay awake even before it started, but the computer started acting up.  I ended up being in a dark room in a comfortable bed fighting to stay awake for 20 minutes while she tried to fix the computer.  Ultimately, she came in and explained that even though this lab always does 5 tests, only 4 are needed for diagnosis if the results are clear, so I didn’t need to do the last test — so either I definitely do or definitely don’t have Narcolepsy.  As she started to unhook me, I tried to get more information from her, and asked, “Could you see me dreaming?” because I knew I had slept and I had felt my eyes going wild, but I wasn’t sure I had dreamed.  She said, “I can’t tell you that, but I can tell you that’s why we don’t need a fifth test.”  That sounds a lot like, “Yeah, you’ve got Narcolepsy,” but it could be, “No, you didn’t dream at all, lady.”

So, it looks like I have every symptom of Narcolepsy, every comorbid disorder or behavior, AND like the tests have confirmed it EXCEPT I don’t know for sure about the cataplexy or the test results.

Do I sound like someone in denial?  Or like someone trying to talk myself into the diagnosis? I’m not sure. Maybe I should run a poll.

After not hearing anything for 2 weeks, I called the sleep doctor office because no one at the lab answers the phone and I didn’t know who else to call.  The receptionist told me she had my results literally sitting in front of her and I needed to schedule an appointment with someone to get them.  This means that I have to go see someone out-of-pocket.  Great.  I feel like I’m being extorted for money just so I can read a test result which I’ve already paid for.  *sigh*  But I agree because what the hell else am I supposed to do and they’ve been very nice and everything.  June 3rd.  11am.

A week later, a nurse from my primary care physician’s office called me.  My PCP had seen my test results and I really needed to get in to see a sleep doctor, they could treat my sleepiness, and had anyone called me?  I confirmed that I had an appointment and asked if the nurse could tell me what was on the results.  She said she couldn’t, because my doctor hadn’t written down a diagnosis so she just didn’t know what the test meant.  SIGH  Again, it sounds a lot like there’s a diagnosis of Narcolepsy sitting on that sheet of paper, since my PCP is making me go to a specialist for treatment, but maybe she just thinks that whatever is going on is outside her area of expertise and it could be anything.  So tantalizingly close to knowing, so far away.

Wednesday Wednesday Wednesday.

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Previously: Part 1, How I got Here
Part 2, WTF is Narcolepsy?
Next: Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

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Adventures in a Possible Narcolepsy Diagnosis: Part 3, Sleep Test
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5 thoughts on “Adventures in a Possible Narcolepsy Diagnosis: Part 3, Sleep Test

  1. 1

    Very interesting series of posts, thanks. I hope you don’t have narcolepsy, though given everything you say, it seems really unlikely to me. Good luck!

  2. 3

    FWIW, you don’t sound like someone in denial OR like someone trying to talk yourself into a diagnosis. You sound like someone trying to extrapolate from scanty data and a lot of observation of human reactions, and simultaneously trying to avoid committing to an interpretation because you know the data is scanty. Nothing wrong with that, nothing at all.

  3. 4

    I have been through this. Narcolepsy is not curable, but it is manageable. Diagnosis and treatment have improved my life a lot. Feel free to contact me with questions; I’m in North Carolina!

    After literally a lifetime of seeking treatment for sleep-related issues, I was finally tested & diagnosed about ten years ago, in my early 40s. I’m now 2 classes away from a masters degree, and haven’t fallen asleep in class once in 2 years! This after decades of falling asleep in classes, at work, in meetings; cataplexy attacks during choir concerts and at comedy clubs (and, um, in bed); inexplicable falls; job losses and hassles; sleep paralysis & hallucinations; and social stress related to a general inability to cope with the details of time.

    Oh, and I’m fat, have migraines, other autoimmune dysfunctions, and more than a few relatives who I suspect had undiagnosed narcolepsy.

    Good luck tomorrow!

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