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.

Food and Narcolepsy

Julie Flygare is my #womancrushwednesday! Check out her episode on the @arinuplifted podcast where she talks all about…NARCOLEPSY…here!

(Photo via @remrunner.)

Trigger warning: eating disorders. With a heaping side of bitterness.

It took me a while to process this interview because it’s heavy on the food and exercise talk. You see, food and I have a thing. And Julie does a great job countering the idea that food and exercise could play any role in reversing narcolepsy. *standing ovation*

Narcolepsy is a neurological disease caused by a lack of cells in the brain that release the neuropeptide orexin/hypocretin. These cells are suspected to ether be missing from birth or to be killed in an autoimmune process.

While I was having symptoms as early as 8 years old, I wasn’t diagnosed until 20 years later. My whole life I thought that I had a behavioral disorder; I thought that I was lacking willpower and motivation, that I was “floppy” because I had no self control, and that my eyes were burning because I had the “declining vision of an 80 year old” (actual comment from an eye doctor). I spent years trying to manage my mysterious symptoms through diet and exercise before my diagnosis. Despite already being in peak physical condition as a college athlete, I thought that I could – and SHOULD – do more. After all, I was being tested up one side and down the other and everything came back negative. Therefore, I was perfectly healthy and was bringing this all on myself.

It won’t take a genius to figure out where this is going. Headlong into an eating disorder. Yes. I eliminated all foods that I could link to my symptoms, until I was eating chicken, avocado, and frozen broccoli for three meals a day, every day. Being in social situations became impossible and I was still sleeping under my desk at grad school.

Only after fighting back from a rampant eating disorder can I say that at the height of my autoimmune paleo protocol neuroses and physical strength was I still experiencing daily symptoms of cataplexy and excessive sleepiness. Like most humans, I feel better when I’m eating real food than when I’m eating crap for every meal. But no amount of gluten-free, dairy-free, nut-free, nightshade-free nonsense is going to cure my neurological disorder. Going back to my #wcw, it was so incredibly healing to listen to someone I admire and respect say those words. Thank you, Julie!

I absolutely agree that restrictive diets can be beneficial for many people. For me it was mentally and physically unhealthy and I’m grateful to be out the other side of that dark time.

Concerts are fun?

I’m slowly learning how bad my cataplexy is. Apparently most people don’t have trouble drinking out of a normal water bottle? And don’t work to stay standing or to keep their head up when they laugh? These are things I’ve dealt with my whole life and had no idea they weren’t normal. I just thought I was lazy and didn’t have any self control. “Michelle why is your head on your desk?” “Michelle why are you slouching?” Um I don’t know because gravity sucks and I’m not as good at life as all of the other kids here? FALSE! Kid-version-of-me, teenage-version-of-me, freakin ADULT-version-of-me YOU HAVE CATAPLEXY!!!

I didn’t realize this until July. I had already been on Xyrem for THREE MONTHS, convinced I only had a few full body attacks every now and then, when a conversation with a neurotypical (i.e. my husband) revealed that laughing is an effortless thing for him. What the heck?!

I hate standing. Wherever I go, I look for the fastest and most socially appropriate way to sit on the floor, or get as many appendages as possible to be fully supported because cataplexy is real, being sleep deprived is exhausting, and gravity is a bitch. So concerts are my personal hell.

The last concert I went to where I had to stand up was Wilco at the Vic in Chicago in 2011. It was a disaster. Picture a girl who “faints” during the opening band and gets grilled about what drugs and alcohol she’s mixing. Fun fact, the girl is stone cold sober and had a full body cataplexy attack but we wouldn’t know that for another five years. Unfortunately we never got to see Wilco. I was tested up one side and down the other for epilepsy and other neurological disorders after that attack and when the basics were ruled out I was diagnosed with “migraines with aura; high stroke risk.”

Fast forward to Saturday night at the Sprint Pavilion in Charlottesville. Portugal. The Man. + comfy grass seating! I’ve been to concerts at the Pavilion since the Wilco mess but this is the first concert I’ve been to since the cataplexy realization. It was freeing to understand why staying upright is so exhausting. I was able to lie down on the grass and be a floppasaur without any inhibitions. Trading hyper vigilance for relaxation felt amazing and from my cozy spot on the grass I realized for the first time that concerts can be fun.

When You “Wake” Me Up

It’s SLEEPY CATURDAY so it’s time to pull out another cat post from my drafts folder! ICYMI my cat posts run deep.  Without further ado here is me as a cat “waking up”.  Keep an eye on the cat on the right, Misty Bear.

This is what I look like when I’m “waking up”.  I think I look awake. I’ll tell you I’m about to wake up. I’ll say “just give me 7 minutes.”  Friends, this person is not awake and they are NOT waking up.  If a person with narcolepsy tells you they’re waking up you shouldn’t believe them. Or at least you shouldn’t believe them any more than you believe them when they tell you to move out of the way of the unicorn/tarantula/”insert narcoleptic hallucination here” that is in the corner.  Because they are going back to sleep just as quickly as…wait they never woke up.

The best way to wake up a person with narcolepsy is…I have no idea.  Unmedicated I can’t get out of bed.  It’s almost physically impossible because my brain has nothing going for it and it won’t stop REMming.  My best bet is 17 hours of sleep, half a liter of water, and a light lamp.  When I was taking stimulants, I would set my alarm for 1 hour before I needed to be out of bed so that they would have time to kick in and then I could groggily and sleepily go about my day.  Now on Xyrem I actually wake up more easily than I ever did before.  Getting out of bed is still my least favorite part of the day, but when I wake up I feel like I’m actually conscious more often than not.

Before Xyrem?  Misty Bear and I were one.

Do you have any recommendations for PWN who are not taking medication?

“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 …