One Year of curious sparkle dirt

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” -Martin Luther King, Jr.

Flashback to January 2017. I knew I wanted to start a blog and I knew that my first post was going to be about “Hidden Figures.” What I didn’t know was EVERYTHING ELSE.

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I hadn’t been diagnosed with narcolepsy but I knew my grad school situation was untenable. I couldn’t hold down a 9-5 job 5 days/week so I took up substitute teaching and hoped that plus a record of my writing would be “good enough” for a future employer if I ever sorted out my health issues.

I had no idea that I would share my mental health history with the entire internet, post style files for all to see, and publicly embrace my maker personality and love of fashion in the form of a freakin’ accessories brand. OH! And go to Capitol Hill. This time last year I was at rock bottom. I thought things couldn’t get any worse so why not just put all of me out there? Because if one person read my blog, got a sleep study, and found an answer sooner than I did, it would all be worth it. (Sleep posts here.) I could never have guessed in a million years that 2017 would be the best year of my life. (Aside from that year I met my husband!)

Thank you for coming along for the ride! And for putting up with these gratitude recap posts every month because every month last year was a major milestone for me and I’m still processing!

Love,

The Narcolepsy Princess

How sleepy are you?

Did you know that ADD/ADHD, depression, bipolar disorder, and schizophrenia are common misdiagnoses for sleep disorders like narcolepsy?  Sleep disorders are a lot more subtle than a person falling asleep in the middle of a conversation, despite what we see in pop culture.  People with sleep disorders, like myself, learn to adapt to our bodies gentle signals of sleepiness and can adopt behaviors that make the sleepiness appear differently than it is (e.g. binge eating, watching television, reading a book during class, procrastinating, and other self-stimulating behaviors).

The Epworth Sleepiness Scale is a tool used by physicians to screen for sleep disorders (note: it is NOT a diagnostic tool). In an ideal world, general practitioners would be well versed in the ESS and administer it to all patients who complain of sleepiness*.  They would then refer patients to a board certified sleep neurologist for further testing when appropriate. However, that is not currently the case and sleep disorders go misdiagnosed or undiagnosed for YEARS in the average sleep disordered patient.

I am not a doctor and I encourage you to discuss your concerns with a physician as soon as possible.  Not all doctors are familiar with sleep disorders.  You may have to be proactive and while your journey may start with your primary care doctor, it’s important to consult a board-certified sleep specialist. (Source.) Also note that medications you are taking (e.g. stimulants or sedatives) might impact your answers.

*Note that many people (including me) use “sleepiness”, “exhaustion”, “tiredness”, and “fatigue” interchangeably.  This can be confusing to doctors, so be sure you think about what you are actually experiencing.  Are you losing consciousness? Then use the word “sleepy”.


For each situation, choose the value that is most appropriate for you.

0 = no chance of dozing
1 = slight chance of dozing
2 = moderate chance of dozing
3 = high chance of dozing.

  • Sitting and reading.
  • Watching TV.
  • Sitting inactive in a public place (e.g. A theater or a meeting).
  • As a passenger in a car for an hour without a break.
  • Lying down to rest in the afternoon when the circumstances permit.
  • Sitting and talking to someone.
  • Sitting quietly after a lunch without alcohol.
  • In a car, while stopped for a few minutes in traffic.

Total your score.
1-6: Congratulations, you are getting enough sleep!
7-8: Your score is average.
9 and up: seek the advice of a sleep specialist without delay.

(Source: https://web.stanford.edu/~dement/epworth.html.)


Xyrem Vol. 4

Welcome to the Xyrem diaries where I share my experience taking the narcolepsy wonder drug Xyrem and subsequently waking up to life for the first time.  These posts are a bit more technical and not necessarily meant for people unfamiliar with the medication, unless you’ve been specifically following my Xyrem journey (From AIP Paleo to Crystal LightVol. 1, Vol. 2, Vol 3.1).

I’ve been taking 3g x 2 of Xyrem, with the goal of getting up to 4-4.5g x 2 some time in the next 8 months.  Getting to 3g was rough and I did it by increasing my first dose to 3g and keeping my second dose at 2.75g for two weeks and then finally increasing the second dose to 3g.  The increase to 3g x 2 was slow because I started experiencing side effects: I was waking up with excruciating headaches coupled with sensitivities to light and noise that were keeping me in bed all day.  I had no problem when I backed down and increased slowly.

It was time to increase over the weekend so last night I increased my first dose to 3.25g and kept my second dose at 3g.  Here’s the blow by blow:

11pm: take dose 1 (3.25g of Xyrem) and set alarm clock for dose 2 at 3am .
11:45pm: fall asleep.
1:51pm: wake up naturally, feeling alert, take dose 2 (3g of Xyrem) and turn off 3am alarm.
4am: wake up feeling pretty good.
4:30am: hear the cat vomit and get out of bed to clean it up.
I stayed awake and alert until about 6am when I conked out again and hallucinated my way to 11am.

What person with narcolepsy wakes up at 4am feeling alert and able to clean up cat vomit?  How weird/cool is that?

The best part about 3.25g is that I don’t think I had a SINGLE DREAM on my first dose.  Dreams on the second dose are still A MESS and I’m trying to get my hypnopompic hallucinations under control because every morning my brain is REMming wild.  (Get it? Like “running wild” but REM? #sleepdisorderhumor #fuckincataplexy.)

I’m going to go another couple of nights at 3.25g + 3g and if everything is copacetic I’ll increase my second dose on Wednesday or Thursday.  I already love the feeling of 3.25g and it’s got me excited to keep on this mystery journey / balancing act of wakefulness and side effects.  Real life, real world, here I come! Well, maybe not for another 8 months or so but still.

“I had a snac(k)cident.”

snac(k)cident: when one eats after starting the two hour xyrem post-meal countdown clock. "I stopped eating at 8 so I had a 10pm xyrem time. But I saw the crackers when I got home and before I knew it I had a snackcident! New xyrem time? 11pm 😭."


(Image from http://www.urbantastebud.com.)

Xyrem is a drug that people with narcolepsy take to help us achieve the restorative sleep that we can't get on our own. One frustrating thing about xyrem is that you can't take it within two hours of eating. And I seem to sleep better when it's actually closer to 3 hours after eating. There were snacks out on the table when we got back from dinner tonight and the first thing I did was put the snacks away to prevent myself from mindlessly eating and resetting my xyrem clock. Which is when my brilliant husband coined the term snack-cident, for when you accidentally snack while counting down to xyrem time.

I am thrilled to say I've never had a snackcident to date. But I have had close calls where I end up biting into food and spitting it out after realizing what I've done. Pretty awesome, right? *rolls eyes*

In the grand scheme of things though, snackcidents are a small price to pay for sleeping at night, fewer dreams, fewer hallucinations, increased wakefulness, and …