I’ve been wanting to write this for ages, but when I sit down something comes up (or over) or I manage to convince myself other things need to be done first. It’s a little scary because a mention in the sidebar, tagged posts and references in my writing don’t tell exactly what narcolepsy is or my experience of it. I heard a guest on a narcolepsy podcast (yes, that’s a thing) recently say it felt like coming out, a reference I immediately connected with.
There are unspoken (or not) attitudes about people with chronic illness. They say stay quiet, don’t reach out, and blend in (if possible). My education’s in healthcare and I knew this on a factual level, but I’m just now starting to observe and question how they’ve held me back.
Anyways, this is a starting point. Get the gist out, go from there.
What narcolepsy is not…
Basically any representation you’ve seen in a movie or T.V show, including but not limited to: Rat Race, Deuce Bigalow, Moulin Rouge, Victorious, or The Simpsons :)
What it is…
Narcolepsy’s a chronic, neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. Instead of executing a normal ‘sleep 7-9 hours / awake remaining 15 – 17’ type schedule, I get chunks of sleep randomly scattered throughout the whole 24 hour cycle.
It affects 1 in 2,000 people, so while considered a rare disease, hypothetically there could be 4 or 5 of us in my small town of 11,000 and that feels a little less zebra-like.
Excessive daytime sleepiness (EDS): overwhelming sleepiness that, for someone without narcolepsy, would feel similar to being awake for 48-72 hours. As described in this FDA narcolepsy summary report from 2013, EDS encompasses a few things that can manifest in different ways depending on the person.
- “Sleep attack” according to the National Institute of Health (NIH), “an overwhelming sense of sleepiness that comes on quickly”
- Cognitive effects, which in the FDA document patients termed ‘brain fog’ and ‘automatic behavior.’ Brain fog was further described by individuals as ‘being in a daze, forgetfulness, difficulty thinking, blurred vision…’ and automatic behaviors were summarized as ‘occur[ing] without awareness while being asleep or in the “half-sleep state.”
Cataplexy: episodes of muscle weakness caused by strong emotions (or in my case, not always so strong). Severity and duration varies widely – from jaw slackening to full body paralysis, and lasting a second or two to several minutes (or more). Important to note, someone is conscious the entire time this is happening, whether talking/eyes open or not.
Hypnagogic/hypnapompic hallucinations: Visual, auditory or tactile hallucinations that happen as you’re waking or falling asleep. As one may imagine, these can be pretty terrifying/disconcerting.
Sleep paralysis: An inability to move for a few seconds or minutes when waking up or falling asleep. As a bonus, this is usually accompanied by those hallucinations I just mentioned.
Disrupted nighttime sleep: Probably not the first thing one would associate with narcolepsy, but with the whole messed up sleep/wake cycle someone may be sleepy during the day, but also have difficulty sleeping at night.
Also, there’s two types: narcolepsy type 1 (NT1) is also known as narcolepsy with cataplexy, and the overall consensus seems to agree that this is caused by a loss of hypocretin cells in the hypothalamus. Less is known about the cause of narcolepsy type 2 (NT2) or narcolepsy without cataplexy.
Getting a diagnosis…
To get a diagnosis, one needs to have a 24 hour sleep study. This includes a nighttime portion, aka polysomnography (PSG), where one is hooked up with all manner of things to measure
your patience brain waves, oxygen levels, heart rate, limb movement, and anything else I’m forgetting. The next day there is typically a multiple sleep latency test (MSLT), where you’re not hooked up to quite as many things, and you take naps at regular intervals throughout the morning/day.
Those who are interpreting the results are looking at how quickly and frequently a person goes into REM (rapid eye movement)/dream sleep.
So, no cure currently for narcolepsy, which sucks, but is what it is. Treatment varies widely depending on the person, but currently includes:
- wake-promoters or stimulants that aim to increase alertness during the day
- nighttime medications with the intent of increasing deep sleep
- anti-depressants that can reduce episodes of cataplexy
- scheduled naps (typically can be refreshing, but not always or for everyone)
- other coping mechanisms, such as social support in the form of in-person meetups or through social media, and improving overall health/wellness through diet, exercise, sleep habits