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.



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.



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.


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)

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

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I’m at the SSA Board Meeting, virtually, so that’s also going on.  Also… I got engaged.  Below I am proposed to on my birthday just before midnight; I propose on his birthday, just after midnight; our engagement rings.

I am proposed to just before midnight, 5/23
Ashley proposing

I also just moved into my first house I’ve ever owned — where the engagement pictures were taken — and my best friend in the world who I haven’t seen in 2 years visited me and was there too.  And that whole narcolepsy yes no maybe thing going on. All the things!

Menu Updates; Life Updates

Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

I am not a hypochondriac.  Really, it’s just that there’s frequently something wrong with me, so it seems like I’m a hypochondriac.  I like to think of myself as “on top of things.”  In this case, I very much have not been on top of things.

I confess that before Narcolepsy was brought up I had only the vaguest of ideas about what it was.  Like most people I thought it was a thing that made you fall asleep randomly in the middle of what you were doing, like in the terrible movie “Deuce Bigalow.”  As it turns out, while randomly falling asleep would indicate that you likely had Narcolepsy, that isn’t really typical for people with Narcolepsy (PWNs).

Excessive Daytime Sleepiness is the most common symptom and that’s just what it sounds like.  They say that if you wanted to experience what the day-to-day reality of a PWN is, you’d have to stay awake 48-72 hours.

I’m tired almost all the time.  I usually have about 2 hours a day where I feel properly awake.  My ESS is 16.  16 is the average score for Narcolepsy.  It’s remarkable that my score is so high considering my sleep hygiene. Dark room, earplugs, same bedtime every night, 8.5-9 hours of sleep, no caffeine, no alcohol, no nicotine, no tv in the bedroom, no books in bed. This sleep hygiene routine has maybe knocked a point or two off the ESS since my college days, when I was more prone to falling asleep driving or talking to people because of my sleep schedule.  There are other things that can cause sleepiness, Sleep Apnea and Restless Leg Syndrome being the most common, but I don’t snore, I have a well-defined palate, I don’t kick, and I’ve never had anything like restless leg feelings.

Narcolepsy Symptoms
Cataplexy is the second most common symptom.  Cataplexy is where you lose control over your muscles when you experience strong emotion.  Most commonly and most severely this would mean you would totally collapse when you laughed, but it can be triggered by anger or arousal or excitement and you can just lose control over one muscle group, often your head or jaw or knees.

… This symptom is the one that worries me because, as far as we know, cataplexy is a slam dunk for a diagnosis, if you have cataplexy you have narcolepsy.  I fall down a lot, several times a week, but not usually preceded by strong emotions.  I’ve always assumed it was because of low blood pressure or vasovagal response, both of which I have, but I also have falls that aren’t like the others and I lose control over my jaw sometimes when I feel very angry, anxious, or laugh.  I slur my speech, it’s a bit of a fight to talk, particularly when anxious or angry.  I can’t stand up if I cry.  And then there’s this other thing.

There’s this thing that happens when I go on roller coasters that everyone I’ve ever gone on roller coasters with gets really bothered when I try to explain it to them.  I always sort of simplify and say they make me feel like I’m going to sleep.  I don’t know if cataplexy is supposed to make you feel bad, but on roller coasters I get really excited and then it’s like my body falls asleep, like I can’t even see or hold the rail or my head up, and I’d feel like I was asleep but awake.  As a person with anxiety, it’s weirdly releasing, and it never lasted til the end of the ride, so I have no problem getting off the rollercoaster.  That same thing happens frequently if I am experiencing a great deal of pleasure in the bedroom. I won’t be able to support my weight and if I try I will do that same thing, my whole body will go limp and I won’t be able to see for a few seconds.  Recovery is instant, quick, and complete. My understanding is that what I’m describing there sounds exactly like cataplexy.

Hypnogogic Hallucinations and Sleep Paralysis are the last two symptoms.  The first describes going into REM immediately when you fall asleep so you have dreams while you think you are awake.  The second describes waking up and being unable to move your body because your body thinks you are still asleep.

For me, these symptoms happen concurrently.  Yesterday, I fell asleep in the middle of the afternoon, something I try to avoid, and spent an hour trying to wake up out of sleep paralysis and hallucinations.  I kept thinking someone was in the house but I couldn’t move, I would wake up and be unable to move and then be half-asleep again — I’d manage to move a little and then fall asleep again and again.  I finally moved enough to be able to slap myself hard in the face several times.

There are other things that aren’t symptoms but are associated with Narcolepsy:

  • Obesity related to constant hunger from sleep deprivation: Check (Though I usually manage to squeeze into the overweight class)
  • Hypocretin
    Hypocretin-producing neurons (img from Harvard)

    Other auto-immune conditions: Check (Severe Allergies, Thyroid; Narcolepsy is believed to be an auto-immune condition caused by your immune system killing all the cells in your brain that produce hypocretin)

  • Severe virus before onset or worsening of symptoms: Check (I’ve had these symptoms for a long time, but they’ve got worse since my Pneumonia, Flu, Mono trio last year)
  • Automatic behavior: Check (I do this a lot when driving long distance)
  • Brain fog/memory problems: Check
  • Difficulty paying attention: Check
  • Depression: Check
  • Low Vitamin D: goddamnit Check

On top of that, there are genetic markers that signal your likelihood of having Narcolepsy, and thanks to 23andme, I know that I have a much increased risk because of my genes.  In fact, of everything I have increased odds for getting, my chance of getting Narcolepsy is the most increased above average.  Followed closely by Parkinson’s, which is, OH GOOD, associated with Narcolepsy too.

So all this points to a not impossible chance that I have Narcolepsy.  Really, the amount I’m trying to talk myself out of the possibility of Narcolepsy is probably quite laughable and hardly very skeptic of me.  The things is, as much as I’d like to fix my symptoms, if they’re something else that will just go away, it’d be better.  People with Narcolepsy have a quality of life approximately the same as those with Parkinson’s or Epilepsy.  It’s not exactly a pretty picture.  There’s no cure and no guarantee that any of the treatments will work for you.

And the treatments are kind of intense — basically they give you uppers and downers and hope it makes you alert and have better sleep than you would otherwise.  One of the most effective drugs?  Sodium Salts AKA GHB, the date rape drug.  Also almost all treatments both interfere with birth control AND you can’t take while pregnant.  Though maybe at some point there’s so much wrong with me that I really shouldn’t inflict that on a new human being anyway.



Anyway, waiting for the diagnosis I am flipping back and forth between wanting them to say I have it so I can get a treatment and really, really not wanting to have Narcolepsy.  I guess having something that’s treatable is better than just being tired all the time with no recourse, but I’m not happy about it.

Read: Part 1, How I got Here
Next: Part 3, The Sleep Test
Part 4, I’ve Got Narcolepsy
Part 5, The Sleep Doctor (Coming Soon)

Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

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.

Continue reading “Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here”

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