Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.

People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.

I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.

Half Birthday

SLEEP&SPARKLE is my life right now. I’m trying to build my brand and grow my company into something fabulous. I’ve cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can be dense sometimes) that if someone hates that I’m writing about building my business they can unfollow me! #revelation

So let’s get on with it!

SLEEP&SPARKLE turned 6 months old yesterday! YESSS! I launched the website on June 5. Life is so good right now. I can’t believe that I’m a person with narcolepsy AND I’m doing something I love. While I didn’t have a diagnosis until this year, I’ve fought sleepiness (and related symptoms) ever since I can remember. I battled to keep them from dictating my life but they did, and until I started Xyrem, I couldn’t envision a future where I would be able to make a living doing something that I love, something that is so stimulating, so creative, so engaging, and so all encompassing. Maybe “make a living” is way too generous a phrase at this point in my company’s life. But I see a path forward for the first time ever. And to be honest, I can see a LOT of paths forward! Whether sleep&sparkle is a success or falls flat, I know that I’m going to be okay.

Happy half birthday to me and SLEEP&SPARKLE!

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.)