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.
Happy Sleepy Saturday. Today I have an exciting announcement!
The community you’ve been dreaming about is finally here.
I’m thrilled to announce that Misty Bear, Nimbus and I are expanding our lifestyle hostel!
Are you jealous of your cat?
Do you wish you could sleep whenever and wherever you want without feeling shame and guilt?
Do you want to NOT have to keep reminding yourself that sleepiness is NOT laziness?
Do you want those gold stars you deserve for getting into the shower? For feeding yourself? For answering the phone and managing your doctor appointments? #boringselfcare
Do you collapse spontaneously or lose muscle control with little warning?
Do you see things that no one else sees? Or experience your bed falling when everyone around you tells you that didn’t happen?
Also we have animals.
If you answered yes to one or more of these questions then The Misty Bear and Nimbus Lifestyle Hostel for People Who Have Morning Hands and Other People Who Have Weird Things Too could be right FOR YOU!
Here at the MB&NLH4PWHMH&OPWHWT2 we live according to our bothersome medication schedules, high-maintenance self-care routines, and wonky circadian rhythms in the guilt- and shame-free environment we’ve always craved. The MB&NLH4PWHMH&OPWHWT2 is a safe, judgment-free zone, for all those managing diagnosed and undiagnosed chronic illness, sleep disorders, and mental illness.
Simply post photos of your self care routine using #MB&NLH4PWHMH&OPWHWT2 to win a free night stay! All entries must be submitted to Misty Bear and Nimbus by this coming Saturday, June 10 to be considered.
What people are saying about us:
“It exceeded at least 7 out of 10 of my expectations.” -Anon
“People here are SO like me. It’s kind of disruptive.” -Anon
“Everyone pays their dues. Sometimes that’s not enough.” -Anon
“There are a lot of people here like me. So if you’re not like me we could really use a hand.” -Anon
Let’s talk about my first week on Xyrem. The cliff notes version is that I LOVE THIS DRUG. I think it’s absolutely amazing and I hope that everyone who is interested in it can have access to it. I have a long way to go in my Xyrem journey but after two weeks there is a notable difference in my sleep quality, which is exactly what Xyrem is meant to manipulate.
Cool. Now that you know all about Xyrem, I’ll give you a blow-by-blow about my first week drinking super concentrated sea water.
Day 0: Pickin up Xyrem!
We got back from NOLA, I took a yoga class/guided nap, and then I picked up my first Xyrem shipment. My anxiety level was at 1000. What is it going to feel like? What is it going to taste like? Am I going to have insane side effects? What is it going to be like to wake up in the middle of the night for the second dose? Am I going to feel totally drugged in the morning? Am I going to stop breathing? I cried, I was so scared. I’d say it was kind of pathetic but I’d be selling myself short. The decision to take Xyrem is a life-changing one. Xyrem is THE DRUG and at this point all of my eggs were/are in the Xyrem basket; if it doesn’t work out, there’s nowhere else for me to go except back to the drugs that I use to make me look awake.
My first night on xyrem went like this:
Finish eating two hours before Xyrem time. For me this was 8pm, for a bed time of 10-10:30pm.
Set all the alarms. My husband and I both set alarms for 2:30.
Prep two Xyrem doses. I’m starting low, with each dose being 1.25grams.
Get in bed with stuffed animals. I have a tricked out bed game – stuffed animals, blankies, more pillows than my husband can deal with. I mean, the least I can do is make sure I wake up to a friendly face when I’m coming out of the hallucinations following my 10am sleep attack, yeah? Friend who messaged me: yes I have sleep attacks at 10am (and 2pm and sometimes 7pm on a really bad day) too! So I also don’t plan things before 12. Or ever. I know you know what I mean. ❤
Drink the ocean. It’s disgusting. At only 1.25 grams it tastes like I’m drinking super concentrated ramen broth, but not in a good way.
Wait to fall asleep. I was expecting to fall asleep in 5-15 minutes like all of the nurses and pharmacists and videos and literature had prepped me for, but it ended up being an hour before I fell asleep. Half an hour in I got really giggly. And 15 minutes later I could feel a really comfortable weight pushing down on my body and I knew that I was going to go to sleep!
I woke up easily to my alarm at 2:30 and took the second dose. (My husband woke up too.)
After my first night on Xyrem, I woke up naturally at 6am! I woke up without feeling drugged for maybe the first time in my life. It was WILD and so disorienting in the best way. I took my nuvigil and then slept on and off for another five hours before going to a yoga class/guided nap.
That night I took my first Xyrem dose at 10:30 pm and woke up at 2:20 for dose 2. (My husband woke up, too.)
Day 2: Sleep Attack
This is my second day on Xyrem. I woke up naturally at 6 again and fed the bears while my husband slept. I stayed awake until my 10am sleep attack – a pretty consistent event. I can push through my sleep attacks on stimulants but I’m a zombie. Upon waking, I went to the gym to walk on the treadmill. I’m trying to be consistent about going to the gym even if it’s to walk on the treadmill. There is some potentially ugly anxiety, depression, and panic attacks waiting for me down the Xyrem road and I’m trying to shore up some healthy habits now.
I took my Xyrem closer to 11 on the third night.
Day 3: The Pstupid Psychiatrist
I woke up naturally at 6am again, fed the bears, and then this happened. I had enough wakefulness to go to the gym to run it off.
I am trying to become independent of my husband for waking up for dose 2 so that he can sleep and we’re not trading my sleep disorder for a new sleep disorder in him. I didn’t want him to set an alarm on Day 4 so that I could try to wake up by myself. That night I took Xyrem at 10:40 and stayed up on my phone for an hour while I waited to fall asleep. In some ways I think my sleep hygiene has gotten worse this week: since I’m relying heavily on Xyrem to put me to sleep, I’m more liberal with nighttime tech usage than I was before Xyrem. I checked the clock and realized that I was still awake at 12 which was kind of weird. I put the tech away and tried to fall asleep.
Unfortunately I snoozed my alarm clock when it went off. My husband woke me up and I was disoriented. I took the meds and then conked out again until 6am.
Day 4: A Kittyplexy Attack
I woke up at 6am, fed the bears and went back to sleep. I went to the gym for an intense workout in the afternoon and 25 minutes in I felt a full body cataplexy attack coming on. I lay down on a mat for a 15 minute nap and was surprised to find that it was more of a kittyplexy attack. Yes, that is what I am going to call a half-cataplexy attack. Pretty cute, right? I started losing control but didn’t lose ALL control. Kind of like being pushed all the way up to the cliff but not pushed over it. Amazing. Is this Xyrem? I don’t know but I’ll take it.
My eating is weird on Xyrem. I came home from the gym and ate a pack of electrolyte gels + a chewy bar because I didn’t have any energy to make anything else. Napped from 330-430. Went mountain biking at 5 which was a silly call because I crashed. My eyes weren’t doing great and my arms were morning-hands esque. In retrospect I think I needed potassium. I’ll have to be more vigilant about balancing my electrolytes as my sodium intake increases – a common Xyrem thing. We went to one of our favorite restaurants after the ride and I was STARVING. I was so excited to be hungry and I ate half a chicken which I think is more protein in one sitting than I’ve eaten like ever. It was PERFECT.
I stopped eating at 8pm, brushed teeth, and set up my Xyrem, etc. First dose at 1050. Cell phone alarm set for 240,250,3. Vibrating alarm set for 230 and 630.
Day 5: My Favorite Day with Xyrem
The vibrating alarm woke me up at 230. I was a little disoriented, but okay. My husband said he still woke up 😦 and then I woke up at 430 which was weird. But I must have conked out again until 645 when I woke up feeling pretty great.
I totally get why everyone is obsessed with Xyrem and why folks put up with the associated side effects and lifestyle changes: my sleep is AMAZING. I’ve never woken up feeling refreshed before and I didn’t even know what I was missing out on! I knew that I woke up feeling drugged. I knew that my husband can look in my eyes and tell whether I’m sleeping or not while we’re talking in the morning. BUT I just thought that’s what waking up felt like and that he was less lazy than I was. Turns out THAT’S NOT WHAT WAKING UP SHOULD FEEL LIKE. (People without narcolepsy: every morning I wake up feeling like you would if you drank like 10 margaritas the night before, except that I don’t drink because it makes my symptoms eleventy-thousand-quadzillion times worse. Yes that’s a number because I just hallucinated it to be true. And yes I’m making a guess at the number of margaritas because I have absolutely no idea what it’s like to not have narcolepsy.)
At 830 we went to the Farmer’s Market! I was feeling sore from the mountain biking wreck but less so than I would before Xyrem. That could be totally psychosomatic and I’m okay with that. The sleep I’m getting now is 100% real, though, and I never want to go back to the pre-Xyrem days.
We got our food and that’s when I started feeling BLAH. My head felt awake but my body felt HEAVY. Like we-had-to-sit-down-on-the-curb-at-the-market-because-gravity-was-too-aggressive type of heavy. This is not a normal sensation for me and it felt like I was wading through a pool with a weighted-vest on. Like HEAVY. I’ve seen people write about this sensation and it didn’t make any sense to me. Until Day 5 when it was just undeniably there. Almost like cataplexy-heavy but without the tingling discomfort and loss of muscle control.
D reminded me that “just because you feel great now, you might still need a nap later.” You guys, this is my person. I’m healing from the trauma of 20 years of doctors telling me I’m wrong and subsequently trying to hide my sleepiness from the world, so I need permission to be sick and sleepy, and he knows that.
Also I didn’t take Nuvigil. I felt medicated anxiety yesterday so I skipped it today. I had it with me in case I need it, though.
After my nap I went to my very first ever writing class! More on that later.
Days 6 and 7
The sleepiest days. But I also didn’t take Nuvigil AND it definitely was NOT worse than my everyday narcolepsy experience pre-xyrem.
I didn’t take Nuvigil Monday through Thursday and managed to get out of bed every single day to do something productive! (My husband pointed out that pre-Xyrem it was inconceivable that I could be a human without stimulants. We both got giddy with excitement about this progress. It’s SO helpful to me to have this outside feedback because I beat myself up a couple of the days for taking so many naps and he’s all “why do you beat yourself up you’re doing great!”)
I took Nuvigil on Friday because I was substitute teaching and that made sense for me. And then I stayed awake through my entire first dose of xyrem which is wild. I don’t know if it was the stimulants, or my body finally adjusting to such a low dose, or the really late nap I took, or all of the above, or none of the above. But I conked out after the second dose, woke up 4 hours later, and was SO awake. My husband pointed out that the 4 hours of xyrem sleep that I got was still probably more restorative than any 12-17 hour sleep period pre-xyrem and based on how I felt I would have to agree.
Starting week 3
Xyrem is still my most favorite drug ever. I understand the heaviness that people report feeling in their bodies with it. But I hear that goes away and it’s such a small thing compared to sleeping through the night for the first time in my life.
Please enjoy these photos of sleepy kittens while I express my frustration with my psychiatrist.
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.
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.
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.)
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.
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.
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.
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.
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.”
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.
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.