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. 2

There are so many narcolepsy blogs and vlogs where people track their Xyrem experience and I’m starting to understand why they all start out with such vim and vigor and trail off after a few months: it’s because the person is waking up and living life! Instead of sleeping all day and blogging/vlogging in between, we’re awake and alive with a few naps here and there.

This drug has completely changed my life. I’ve done more in the past 3 months than I’ve done in the past 5 years.  And now that Xyrem is working and I have hours on end of wakefulness, I’m neglecting curioussparkledirt 😳 to RUN THE FASHION BRAND I STARTED 2 MONTHS AGO?! How is that even a thing?! I ACTUALLY launched a fashion brand – http://www.sleepandsparkle.com – two weeks ago, after coming up with the idea for wire-framed headscarves two weeks into Xyrem treatment. This is where I have to stop thinking and keep doing because the sadness of 20 years of misdiagnosis is enough to drown me.  Being awake is NOT overrated.

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How has Xyrem helped me?

I have fewer dreams and hallucinations, and fewer intrusive REM cycles during the day. This is big for me because my dreams, nightmares, and hallucinations are horribly disruptive and emotionally exhausting/debilitating/scarring. I still dream but they slip away when I wake up, rather than lodging themselves in my memory as experiences.

I transition more easily between tasks because I’m not doing the thing that is just the easiest to do deliriously tired.  I can reflect, critically analyze, and switch to the highest impact task when necessary.  And if I can’t make it all the way through that chain, I’ll nap after I realize what I need to do and before I make the switch.  This is helpful for EVERYTHING.

Where is there room for improvement?

Things aren’t 100%.  I sleep 1-3 times per day for an hour or more, I still have hella cataplexy attacks, and I still can’t read for more than a few minutes without my eyes burning.  Cataplexy isn’t supposed to start getting better until I’m at about 3grams x 2 so I’m not worried about that.

I think that a lot of dissatisfaction comes from an understanding of where I will be after a year or two on Xyrem and being frustrated that I’m not already there yet #chronicillnessfirstworldproblems.  Because the truth is that my worst day on Xyrem is still 74 times better than my best day jacked up on stimulants.  I’m just realizing how sick I was.

And having a diagnosis?

IS FREAKING AMAZING!  But some friends and family have asked me if I’ve gotten worse in the past couple of months and here’s what I think is going on: I LOOK worse because the diagnosis empowered me to set boundaries. I take naps when I need them whereas before my diagnosis I would just zombie through life on stimulants without naps and then crash for a week.  I looked more functional because I was going through the motions of life, even though nobody knew that I was just a shell.  Now instead of forcing myself to stay awake by binge eating or binge watching Netflix, I recognize those behaviors as signs of exhaustion and take a nap.  This is a big part of learning to listen to and trust my body.

Last night on Xyrem

Last night I increased my Xyrem dose to 2.5g x 2 from 2.25g x 2.

7pm Done with food for the night.

10pm 2.5 grams of Xyrem down the hatch. Let me just say that 2.5g is where the taste went from “ugh this is salty ocean water” to “holy shit I am actually drinking a dissolved block of salt”. It’s INTENSE, but it doesn’t really matter. If I had to let a raccoon poop in my mouth twice a night to get my Xyrem I would still do it. Being awake is that good.

11pm I was on my phone for an hour or so and started feeling high much more quickly than previous doses. I got a small headache around 11 and then let myself go to sleep.  Real talk: my sleep hygiene has gotten a lot worse since starting Xyrem because I rely on it to put me to sleep.  You don’t have to do that and good sleep hygiene won’t hurt.

1:30am Wake up naturally, go to bathroom, get back in bed, take second dose.

4:45am Wake up with the sunrise, FEELING awake and alert, and then look at clock and realize that it’s 4:45. I’ve never seen 4:45 as an awake person in my whole life.

4:45-6:45am On Shopify working on http://www.sleepandsparkle.com. It wasn’t that drugged wakefulness where you kind of engage with your phone and then wake up an hour later drooling and your phone dropped out of your hands because you fell back asleep. I was AWAKE. I had no idea what to do with myself. This is different from 2.25×2 so we’ll see if it lasts and how it changes over the next week.

6:45-9:45am Ate breakfast, made some scarves, and did a sleep&sparkle photo shoot.  I started feeling sleepy around 9:45 so I took 125mg of Nuvigil and slept til 11:30.

Narcolepsy Product Guide

Narcolepsy, chronic illness, and mental illness suck.  Below are some of the things that make my life easier, better, and more comfortable.  These are great for narcolepsy/cataplexy and maybe good for other chronic illnesses, too?  Comment below with your favorite products that we need to know about to live a more full life while battling our demons.  Unfortunately I don’t receive kickbacks from any of these companies so I won’t have financial freedom when they change your life, but maybe one day when my blog is YUGE…

Let’s start with the basics

Rice Socks

Raise your hand if your eyes start burning shortly after you wake up.  And then for the rest of the day.  Mmhmm.  And your grad student friends look at you kinda weird when you ask them how they keep working on data when their eyes are bleeding and they’re kinda like “ummm…huh?”

So I definitely don’t know how to solve this problem, though I’m hoping that it goes away like everything else as I continue to increase my Xyrem.  In the meantime, let me tell you what the Eye Clinic told me when I was complaining of declining vision and they couldn’t find anything wrong with me: a warm compress.  Again – it doesn’t solve the problem, but absolutely brings me some relief.

Fill an old, soft, odd sock with a few cups of white rice.  Preferably a sock that isn’t too hole-y.  (If you are reading this and you have narcolepsy, I am assuming that you don’t have your shit together enough to have gotten rid of your old socks.  I dare you to tell me I’m wrong or, if you’re odd socks are gone, that you had anything to do with it.)  Microwave that sucker for 30 seconds (put a cup of water in the microwave for moisture) and than go take your nap with that on your eyes.

Note: the standard tricks for relieving eye fatigue DO NOT WORK FOR ME.  Remember that if you have narcolepsy you are sleep deprived which is totally different from having fatigued eyes.  For years I’ve tried to do the “look away from the screen, etc” and I get so frustrated and feel like a shitty student/human because I still need to sleep and I still feel like a demon with daggers is standing on the inside of my skull trying to push my eyes out of my head.  If anything, stopping to look away from the screen makes going back to doing work more difficult because I’m tuned in to the pain.  Know that if this is you, you’re not doing anything wrong.  You’re just doing everything sleep deprived.  I’m sending you a sock filled with rice-y love.

Water bottles

I have morning hands.  I get them in the morning regardless of what I’m feeling and then throughout the day. #cataplexy

The Camelbak Eddy is my answer to this.  It is a socially acceptable, adult, sippy cup that I can put on the table and drink from without my hands ever getting involved.  I used to buy cute water bottles that had screw caps and I would drop them and spill everywhere and it was a mess.  Over the years I gravitated towards more assistance but never understood why.  It’s because freakin’ morning hands!  One thing you can do is attach a carabiner to the hook on the lid and secure it to your bag, or to your jeans, or to wherever makes sense so that your hands can be involved as little as possible.  Downside of this bottle is that the bitevalve can get DISGUSTING.  I recommend buying extra bite valves on Amazon with your purchase because you know you’re not going to follow up on that for months. You’ll just drink from a disgusting water bottle. And that’s fine.  I’m not going to judge you and you won’t judge me.  Cool.

The downside of the Camelback Eddy is that it’s heavy and you have to carry it around even after you’ve finished drinking.  I was recently introduced to the Platypus water bottle bladders and holy smokes they’re amazing!  You can get a 1 liter bag, fill it up, stuff it in your purse, and lose weight as you drink.  It’s perfect.  I have not had one explode in my purse after using it for 3 months.

I use my Camelback around the house, and anywhere that I can set it down on a surface.  I use the Platypus when I’m adventuring around a city and don’t want  a ton of weight in my purse but need a ton of water.

Phone Cases

Which brings us to the LifeProof case!  I don’t actually have one of these right now but as I write about morning hands, and as I recently dropped my phone and broke the screen, it’s seeming like a good idea.  PLUS, it makes the Platypus water bladder a less risky gamble.  Boom. Done.

Sleep Game

Part of narcolepsy is having dreams and nightmares so vivid that they become memories.  Because of this, nighttime sleep never felt safe for me so I have a super tricked out bed game that makes sleeping a safer space.  These are my talisman so that I don’t have to fight off the demons on my own.  Yes I made my own dreamcatcher and if your nightmares become too much you can rock it Flava Flav style.  I’m pretty sure I read somewhere that this trend is IN this summer.  There’s a 90% chance that was a hallucination.

For travel:

Ear plugs

Is anyone else here super sensitive to noises?  Like you become full of irrational rage?  I know that this is an actual disorder and I’m not sure that I have that but I THINK – but am not sure – that my rage might be correlated with my level of sleep deprivation.  I take ear plugs, headphones, and charged electronics on all flights and to all public places so that I do not have to listen to the sounds of people eating, snoring, swallowing, and living.  It’s hella frustrating when this person is my husband because I love spending time with him and it’s not his fault he needed a drink of water.  And even worse when this person is myself.  True story: I had to stop eating leftover birthday cake last week because the sound of myself chewing and the fork on the plate almost made me start crying.  #sleepdeprivation

Inflatable airplane pillow/neck brace

Flying triggers cataplexy for me.  You don’t read that on WebMD *rolls eyes because the internet about narcolepsy kinda stinks* and I definitely thought it was something that everyone experienced until I read Chica Siesta’s blog post and realized that it was freakin’ cataplexy! (You guys when my neurologist explained cataplexy to me in our first appointment I was 100% sure I didn’t have it.  Not until weeks later and lots of talking to people did I realize that it wasn’t normal to a) have morning hands and b) lose all muscle control and collapse into a heap on the floor at random times, all while maintaining consciousness.)

I read Elaine’s post while we were planning our honeymoon to New Zealand, immediately recognized my symptoms, and declared to my husband that I needed a neck brace for our trip.  After working hard to not look at me like I was crazy, he found this inflatable airplane pillow/neck brace on Amazon that exactly fit the bill.  Yes he searches for things on the internet for me because I can’t read.  See “burning eyes&rice sock” above.

Travel Naps

Raise your hand if you hate sitting in chairs.  Cool, me too.  It’s exhausting.  I like to be as close to the floor at all times in the event of a cataplexy attack.  We have these super fancy pants pocket size chairs from REI and I can’t use them.  Speaking of which we need to return mine.  Chairs are the worst.  So when we were packing for NZ I was like “no I don’t want to take a chair.  I want a picnic blanket that’s waterproof and easy to fold up so that I can sleep when you want to go on a run.”  Cue D going to Amazon and finding the COSY MEADOW which is EXACTLY a picnic blanket that’s waterproof and easy to fold up so that I can sleep when he wants to go on a run!  (Thank you, Darrell.)  This was the MVP of our trip and continues to be one of my most favorite discoveries post-diagnosis.  I willfully ignore the fact that some people are awake enough to use this to go to music festivals, as advertised.  Because you know where I used it?  On the beach in Abel Tasman park at 10am in the morning 6 minutes after we got off a water taxi to go on a legendary hike.  Have I said “FUCK NARCOLEPSY” during this post yet? Because FUCK NARCOLEPSY.

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For style:

Nickel & Suede leather earrings: I wore these earrings on an overnight flight to New Zealand like it was nothing. Yes I have other earrings but these are like the pajama’s of earrings.  You’ll look like a million bucks.  A sleepy a million bucks.  But you get the idea.

Red lipstick: You absolutely do not have to wear makeup, lipstick, or anything else to be beautiful and awake.  For me, red lipstick has become a ritual that tells my brain “we’re doing life today, suck it up.”  Of course that does not work because I have a neurological disease and my brain will do whatever it wants, but I find comfort in routine.  I also find that fewer people say “you look sick”, “did you sleep last night?”, and other ridiculous things that distract me from whatever meaningful thing I’m trying to do.  So I’ve come to the conclusion that it makes me look less sleepy and more alive.  I should say that it took a long time and buying all of the colors of cheap wet ‘n wild lipsticks before I found my red!  Now I wear Liya’s Red and I love it.  Thank you, Stasia, for teaching me the power of a good red!

 

Do any of these things fit into your life?  What am I missing (aside from a doctor who gets you and meds that don’t have horrible side effects)?  Please please please share your favorite products in the comments below!

Xoxo,

The #narcolepsyprincess

Cleaning Out My Office

This is something I posted on Instagram (@curioussparkledirt) one week ago and I want to share it here.

Today my amazing husband helped me clean out my grad school office. And then dealt with me afterwards. Nothing makes a person grumpy quite like returning to the shrine of their undiagnosed neurological disease.

You might be sick if…you sneak a rug, pillow, and blankets into your office on a weekend night under cover of darkness so you can sleep underneath your desk for 3-4 hours/day before going home to sleep more, all after sleeping 10+ hours/night. Oh the shame I’ve carried…

Will I go back to finish my dissertation? No idea. But I’m grateful to have the diagnosis and to have Xyrem, so that when I’m fully treated in a year I’ll have a choice. Because there was a time when I loved my field and loved my research. And I’m done letting narcolepsy make my decisions.

A blog post to come when I’m done stewing. A week? A month? A year? No one knows. But what I do know? It’s okay to not be okay. About this one thing. Because everything else right now is fuckin fantastic.

Love,
The #narcolepsyprincess

The Fantastic 4-4-4: My grad school success plan

Please enjoy these photos of sleepy kittens while I express my frustration with my psychiatrist.

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I saw my psychiatrist today for the first time since my narcolepsy type 1 diagnosis.  I knew what her reaction was going to be when I told her and I should have put on my big girl pants and gotten ready for it but I went in like a fool expecting her to be sympathetic. Spoiler alert: she was TOTALLY UNPHASED.  In 20+ years of working with psychiatrists, I’ve never found one I trust. I think they’re weird, pill-pushers, and I’m unclear about what they’re supposed to do besides give me my script for a highly regulated and addictive drug.  For years in college I searched for a psychiatrist I could trust and every appointment was the same:

Them: “Why are you here?”
Me: “These are my symptoms…”
Them: “That sounds like ADHD / seizures / bipolar disorder / migraines / anxiety / depression / PMDD / panic attacks.”
Me: (I’ve heard all of these before and ADHD meds work the best) “Cool let’s do ADHD.
Them: “ok what type of meds do you need?”

And then I would prescribe my own meds through this esteemed psychiatrist’s prescription pad. If I was too anxious, I would decrease my dose of stimulants. If my stimulants stopped being effective at 4 pm, I would use a short acting stimulant (e.g. Ritalin, adderall) to get me through the important study hours. I knew how to titrate my Vyvanse in juice so that I could have a more or less potent dose depending on my needs for the day. 

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Stimulants are a super fun and convenient class of drugs to be on:  they cannot be called into the pharmacy, must be picked up each month at the prescriber’s office, and require visits to the doctor every three months in order to continue the medication. Regulations differ across states so a prescription from my psychiatrist in VA cannot be filled in MA if it was written more than 7 days ago, which is how I ended up without medication for two weeks in Bahstun.

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During the transition from undergrad to grad school, my pediatrician prescribed my meds and my mom would pick up and fill the scripts in Illinois and mail them to me each month.  Thank you, Mom!  But alas my pediatrician kicked me out of his practice at the ripe old age of 23 and there was a fire drill to find a new prescriber.  (To be fair, I think he gave me 18 months or 6 years of notice, but most things in my life are fire drills which is what happens when you sleep. sleep. sleep. sleep. sleep…and don’t wake up until there’s a crisis.)  

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So I found a new prescriber.  During our first appointment she said “Vyvanse is a long-acting medication so the afternoon dose of Ritalin is unnecessary and borderline abusive given your diagnosis.”  (Emphasis added.)  I know this, but I also know that Vyvanse doesn’t seem to be long-acting for me (BECAUSE NARCOLEPSY).  I was persistent so she agreed to increase my dose of the long-acting meds and I got to start grad school without the regiment of meds that I had perfected over the previous 15 years. AWESOME.

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I gave the increased dose of Vyvanse a try: my medicated anxiety increased, I couldn’t eat, and I felt like I was having a heart attack for the first 4 hours of every day.  And then I would get in 4 hours of work before it would wear off at 4:15 pm, a 15 minute improvement over the previous dose wearing off at 4 pm .  The Fantastic 4-4-4 as I call it. If this isn’t a recipe for success as a grad student I don’t know what is.  Do I sound bitter? I’m a little bitter.  So that’s how I’ve existed for the past 6 years which brings us to today.  

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What I wanted to say when I went into her office was:

You know how I tell you in each appointment that the “all-day” stimulant you prescribe me starts wearing off around 4:15 pm and I get tired and can’t focus and my eyes burn so I can’t get my work done? And my peers stay at school and work and I’m just totally asleep? And then you say “it’s an all day stimulant so you’re doing something wrong. If you’re tired set an alarm, take a nap, and then get up like a self-respecting grad student.”  Remember that? Well I have FREAKIN NARCOLEPSY.  Severe. Textbook. Narcolepsy.  And no amount of napping is going to replace the 70,000 neurons that my body killed when it thought it was protecting me.  And you totally missed it and I’m pissed and sad and scared and all of the things.

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She was unphased and I suppressed my urge to kick her in the shins before stomping out of her office.  My eyes started watering with sadness and anger and profound frustration.  Was this really the best care available to me.  I’ve tried other psychiatrists in my area and unfortunately she is indeed the best care available to me.  I swallowed the lump in my throat, crossed my arms, and tersely gave her the updated details of my medications as if I were a grumpy 3-year old after throwing a tantrum:

How much Vyvanse are you taking?
I don’t take it anymore.
Why not?
I take Nuvigil.
Why?
Because it’s approximately 238473849576348689240293483209482374 times better.
Oh really? Why is it better?
Well for starters it keeps me awake throughout the day and I no longer spend the first third of my waking hours having a sweaty heart attack.
That sounds like an improvement that the Nuvigil doesn’t make you as anxious and allows you to stay awake, she parroted back to me.  YEAH YA THINK?!!! What else?
I started Xyrem on Monday.
How much xyrem do you take?
I take 1.25 grams twice a night.
You mean milligrams? And you take two at the beginning of the night?  
No.  I mean I take Xyrem.  So I DRINK a diluted solution of 1.25 GRAMS of sodium oxybate with 1/4 cup water.  And then I go to sleep and 4 hours later I drink the same mixture AGAIN.
Right okay.

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I asked her if she treated other patients on Xyrem, and the resulting medicated anxiety, depression, and panic attacks that might come as I ramp up to the therapeutic dose over the next 6 months.  She said “yes” and I thought “shit really?  Because you just incorrectly corrected me by saying a) “milligrams” and b) “you mean you take 2 at bed time” and c) asked me which pharmacy I get my Xyrem at and that’s NOT A THING.”  Xyrem is handled with all of the care of a live grenade due to the fact that it is actually GHB aka the date rape drug.  Xyrem is overnighted to me from a central pharmacy every month and followed by 10 phone calls with nurses, pharmacists, reimbursement specialists, and brand ambassadors to make sure that nothing was tampered with in my shipment, that I understand the lifestyle changes that go along with my new medication, that I understand how to use it, and so that they can read paperwork at me for 30 minutes to cover their ass.  And I only have this privilege because my sleep neurologist and I are enrolled in the Xyrem REMS program which is required by the FDA.  So “No.  I don’t pick up my Xyrem at CVS.”

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This post doesn’t have a resolution.  Maybe I’m a brat for being a grouchy 3 year old. In her defense, she was the 413th of 418 doctors to misdiagnose and mis-medicate my narcolepsy but we gotta do better.  I’m pissed.  And I’m committed to doing better.  Next week I’m going to announce a project I’m working on that I need your help with.

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