My Life with Unmedicated Idiopathic Hypersomnia

Thursday, August 12, 2021

In late 2018 & early 2019, I wrote a lot here about my experience seeking a diagnosis for my sleep issues – namely that I was sleeping all the time. I started seeing a neurologist, underwent a 24-hour sleep test, & was ultimately diagnosed with three sleep disorders & prescribed medication to help. I took that medication diligently & enthusiastically for a year. 

For various reasons, though, I've now been unmedicated for more than a year, & it's going... OK, I guess. Sometimes better than others. But some people have asked what happened with my sleep disorders after I stopped writing about them, & there's been some progress in terms of possible treatment for my primary disorder, so I figured it was time for an update.

For starters, because I never really explained them, the three sleep disorders I've been diagnosed with are:

  • Idiopathic hypersomnia, a rare neurological disorder related to narcolepsy, is characterized by excessive daytime sleepiness, short sleep latency (meaning it takes a shorter amount of time than average to fall asleep), & unrefreshing naps. People with IH require a lot of sleep but never feel rested.
     
  • Sleep inertia, sometimes known as “sleep drunkenness,” is to have significant trouble waking up, plus a pronounced period of confusion and sleepiness upon finally awakening. While plenty of people hit the snooze button, having sleep inertia is more akin to not being able to wake up unless someone punches you in the face. (Please don't.)
     
  • Delayed sleep-wake phase disorder is a circadian rhythm disorder that basically means I'm nocturnal – that my body prefers to be awake late at night rather than early in the morning, which can make a typical 9-to-5 job feel nearly impossible... especially when paired with the other two disorders. 
Cooooool, cool cool. Right? I know. It's a lot.

I've written here before about the shame & stigma associated with the need to sleep as much as I do –  about how I thought, for most of my life, that I must just be lazy. 

In college, I was tested multiple times for mono, but every test was negative; my loved ones have complained, for as long as I can remember, about how tired I always am, from my grandmother to my college roommate to my longtime boyfriend. I once quit a job because I couldn't wake up early enough, & I snuck away from my first real post-college job to take quick naps in the basement.  

When I received my diagnoses, I cried with relief. And when I was finally prescribed methylphenidate, the ADHD stimulant associated with wakefulness, I cried with relief. For nearly a year, I was fully awake, almost every day. 

I felt great. I felt normal. Life was good, & I was awake for it. 

But then, at the end of 2019, I got pregnant, & I had to stop taking it. Then, after my miscarriage, the pandemic started, & I wasn't able to see my doctor to get a new prescription for the medication, a regulated stimulant that required me to go into the office in person – something I wasn't comfortable doing. I'd be comfortable going back now, but doctors advise against taking methylphenidate when you're trying to conceive... so I'm still off of it. 

Now, it's been nearly a year & a half without medication, & if you want the truth, I sometimes grieve for the life I thought I was going to get to have, for that brief glimpse into wakefulness that I got to experience. I know I can be more awake than I am now – but I just, well, can't be.

And so I'm making do.

I have learned to be kinder to myself, to my body, to what I need. I have learned to sleep when I need to, period, & to try not to feel guilty about it. I have learned to wake up right before I start work, to take naps instead of lunch, to spend the weekends sleeping in &, sometimes, missing out. I have learned to say, "I have a sleep disorder. I can't help it," when other people chide me for being so damn tired.

But I remember what it felt like to be awake. And maybe even more than that, I remember what it felt like to be hopeful about a life of wakefulness. I remember how much work I got done, how many workouts I fit in, how many brunches I woke up for with friends, how many nights I didn't have to go home early or stay home altogether because I simply couldn't stay awake anymore. I remember feeling normal & not perpetually exhausted. 

I'm still trying to get pregnant, which means I will stay off of methylphenidate until it happens or until I give up, whichever comes first (please, God, let it be the former). But I know that as soon as it's safe again, I will call my doctor back up & tell him it's time again: that I want to wake up again.

Until then, I do what I can. And I sleep when I can't. 

1 comment:

Allyson said...

I can definitely relate - I have ADHD and have been off medication for a while now for similar reasons. It’s hard to explain how much I miss being properly medicated, and one thing I’m very much looking forward to. After having a taste of “normal” life, it was so much more difficult than before to cope with my symptoms.

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