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.

stats2
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.

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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)

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Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?
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5 thoughts on “Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

  1. 1

    Ashley, my mother had narcolepsy, verified by sleep test, and I could tick off her symptoms as you describe yours. It sounds like something she would have written. Of course that’s not diagnostic, but I will tell you she had a pretty good quality of life and a career and she trained us kids to look after her in case she had an attack in public (which did not happen much), and she had fewer than the average number of car accidents.

    Another factor that doctors sometimes miss is that narcolepsy is partly genetic; my family has a history of autoimmune disorders. None of us kids have narcolepsy, but one of my brothers had vasculitis, the other has both diabetes and rheumatoid arthritis, I had an unexplained bout of uveitis for which I was tested for every autoimmune disorder imaginable (thankfully nothing at a clinical level). My grandmother had unexplained joint pain, depression, and “nerves” that could easily have been autoimmune. Look to your family medical history to see whether anyone else has a reputation for being “lazy” (because of sleepiness), or arthritic, or diabetic, or otherwise having a suspicious illness.

  2. 2

    That’s good to hear.

    I do have the SNS markers associated with narcolepsy, but my living family is remarkably healthy and those that are dead all were healthy until they got cancer. My mother gets migraines and I have an aunt with celiac disease, but I don’t have that and have no genetic markers for it either. Other than that, no one else even has allergies. In my immediate family, my mother, brother, and father all work 60+ hours a week and are super go-getters. Incidentally, none of them have red hair and pale skin either. It could just be that I have a genetic predisposition and I got a virus that set the thing off and they never have. I got chicken pox when I was only a month old followed by a series of ear infections — so I ended up having a lot of antibiotics and illnesses as a baby — it’s the only really different factor between me and everyone else in my family, I’m guessing it tripped something up in my autoimmune response.

  3. 3

    Low Vitamin D is one of they symptoms? I recently had bloodwork done and my doctor brought up that my Vit D levels are much lower than expected for a woman my age… and this despite the fact that I outright guzzle milk. I can go through a gallon in a day, easily.

    I’m pretty sure I have sleep apnea, but now I wonder if I should look into narcolepsy. I dream instantly. If I fall asleep for even 15 minutes, I will have dreams. I’m so used to my ‘nightmares’ that they aren’t even nightmares anymore. Oh, I was murdered again in my dream? Yawn. Whatever.

    I have depression, but that runs in my family. I have brain fog, but I also have severe ADHD. I’m constantly snacking, and sometimes that’s the only way I can drive home safely (like tonight is going to be a eat-to-get-home night because I was dozing off here at work).

  4. 4

    A lot of the symptoms are also the result of chronic sleep deprivation, so if your sleep apnea is not controlled, it can cause a lot of similar symptoms. That said, sleep problems are often co-morbid, but sleep apnea is the much more common of the two — if you get a sleep study and they discover apnea, they’ll pretty much insist on treating that before deciding whether you’ve got narcolepsy. That said, you should definitely get a sleep study because all those things can be the result of bad sleep, regardless of why the sleep is bad.

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