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.

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.

cute-baby-black-kittens-5

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. 

sleeping_kittens_4_by_lena_panthera

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.

sleep-well-hd-cat-wallpapers-kittens-widescreen-pussycats-high-resolution-pet-photos-baby-amazing-cats-cat-desktop-images-windows-wallpapers-of-cats-1504x1128

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.)  

cutest-sleeping-kitties-ever-105__605

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.

11252701_442631412573352_1556916691_n

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.  

stunning-black-and-white-kittens-for-sale-55edd5e9938f0

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.

1dZUvb

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.

sleeping

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.”

sleepy-kittens

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.

gray-kitten-very-cute-cat

From AIP Paleo to Crystal Light

If you had told me 5 years ago at the height of my Paleo neuroses that the key to getting my health under control wasn’t kale and egg yolks but rather sodium oxybate and crystal light I woulda thought you were out of your damn mind. 


Wait. Actually I would have said “WTF you mean I have narcolepsy?!” And then I would have thanked you for saving me 5 years of my life.  

Last night was my second night on xyrem.  More details to come but feel free to ask questions in the meantime. Here’s to taking my life back, one sip of the ocean at a time.

Narcolepsy Resources

My story

I was diagnosed with type 1 narcolepsy – narcolepsy with cataplexy – in February 2017 after battling the disease for 20+ years misdiagnosed.  The relief I felt after finally finding my medical home makes my Diagnosis Day second only to my wedding day as the happiest day of my life!

Narcolepsy is widely misunderstood and my severe, textbook case was missed by three neurologists and a medium-sized army of other specialists before I found my current neurologist in February 2017.

It is a debilitating neurological disease that can seriously impact a person’s quality of life.  I can sleep for 12-17 hours a day only to wake up deliriously tired.  I have vivid dreams and nightmares every time I close my eyes, and visual, auditory, and tactile hallucinations even when I don’t.  I have no fine motor control in my hands when I wake up, or when I laugh, or at other times during the day, too.  I lose control of my muscles and collapse with little warning when I experience strong emotions, heat, standing for medium periods of time, talking to people, and generally living life.  Thanks body!

Being a narcolepsy princess in New Zealand.

On a daily basis, I experience what a person without narcolepsy will only experience after 48-72 hours without sleep.  This means that I exert a tremendous amount of energy to keep my eyes open.  It also means that I frequently have difficulty putting sentences together, that taking a shower can feel like a mammoth task, that I experience waves of nausea throughout the day and that my eyes feel like they are burning whenever they’re open.

Being a narcolepsy princess in my natural habitat.

As a result of all of these symptoms, I isolated myself in the years leading up to my diagnosis.  While this is a super successful strategy for cutting down on the number of terrifying, uncomfortable, and humiliating collapsing (cataplexy) episodes that I have in public, it’s also…incredibly isolating.  Narcolepsy is different for every single person, but I want to get my story out there so that someone like me – with an undiagnosed chronic illness – can feel hope, and a momentary reprieve from dark isolation.  Thank you to the amazing people online who generously shared their journeys.  Reading your stories encouraged me to trust my body and continue seeking an answer even when the professionals told me I was wrong.

My loyal and committed bed buddies, Misty Bear and Nimbus.

I will write more about my battle with narcolepsy as the blog continues.  I will also explore the impact of “just” having a diagnosis after at least 20 years of undiagnosed chronic illness.

Message me if you’d like to chat and please please please DO NOT SELF DIAGNOSE!  You’re smart, you’re creative, you’re resourceful – you HAVE to be to have made it as far as you did with narcolepsy – I get it!  But the way that narcolepsy and cataplexy is written about on WebMD is NOT the way I experience it.  I self-diagnosed 5 years ago when someone close to me was diagnosed.  After initially thinking that narcolepsy was the answer, I let it slip through my hands when I couldn’t relate to his description of sleep paralysis and cataplexy.  It turns out that I don’t have sleep paralysis but my cataplexy is so bad I thought it was just a character trait (#klutz much?)!  Can’t relate to cataplexy? Thirty percent of people with narcolepsy DON’T have cataplexy! And not everyone experiences the hypnagogic and hypnopompic hallucinations that I describe.

I’ve met folks who got a sleep study, and were told they don’t have narcolepsy, only to finally be diagnosed later on using the same sleep study by a specialized sleep neurologist.  Unfortunately there are stories like this all over the narcolepsy community.  The average time until diagnosis ranges from 10-15 years, and for me it was at least 20 years.  The bottom line is that if you experience sleepiness and/or you don’t feel rested when you wake up after 6-9 hours of sleep, you could have a sleep disorder, narcolepsy or otherwise, among other things.  You deserve to get help!  You deserve to have your experience trusted and respected!  And I hope that you can find strength to persevere through my story.

Glam by the brilliant techs at my sleep center!

xoxo,
The Narcolepsy Princess

P.S. Find my sleep-specific blog posts here.


Books


These are THE books on narcolepsy.  Julie Flygare writes from the perspective of someone who becomes afflicted with narcolepsy in her early 20s. She is THE narcolepsy advocate and you can find her work online here.  Claire Crisp is the mother of Mathilda, a young girl who tragically gets narcolepsy as a result of the H1N1 vaccine in Britain in 2010.  This book follows their misdiagnosis process and is written from the perspective of a mother watching her precious daughter in decline. Claire writes online over here.

Websites

  • Project Sleep: Julie Flygare’s sleep disorder advocacy non profit.
  • Falling Asleep by Eleanor Wales: Elle’s website provides information for those recently diagnosed with narcolepsy, tips for managing narcolepsy (I haven’t gotten into these yet and will review them as I try them out!), infographics, more information, advocacy guides, a list of blogs written by people with narcolepsy. Everything.
  • Chica Siesta: Brilliant, creative, well-written blog by an American girl with narcolepsy who travels to Spain to teach.  Elaine writes about her misadventures, frustrations, and ultimately her quest to get Xyrem.