You know, intentionally–because that’s how they treat narcolepsy these days–with Sodium Oxybate–otherwise known as–a roofie.
You may have seen in my past posts that I was waiting, begging, hoping, dreaming and still waiting to try Xyrem after we researched and went through the life-long process of getting it prescribed.
Xyrem is an intense drug. Let there be no confusion here. It’s intense to create, intense to prescribe, intense to go through the screening process and insurance to take it–and finally–it is fucking intense to be a patient taking it.
Ready? Here we go…
The Friday Before Starting Xyrem.
I’m not going to lie to you. I’m a little freaked out right now. I’m strung-out. I’m over-wrought. I’m feeling a little like a hammer has been beating the inside of my chest this week, and now all that’s left is this echo in my head.
I feel scared. I feel out of control. I feel like my medication is not working. I feel very tense about starting new medication. I feel like we’re running out of medications for me to try. I feel like we’re stumped. I feel like we’re not sure which direction to go in with my treatment so we’re just kind of standing here waiting for something to happen.
And it’s happening, and it sucks.
Taking Xyrem for the First Time
Shit, this is a lot of things. There’s a CD and like three booklets and then three bottles of liquid and then some empty pill bottles and an alarm clock. Yeah–my narcolepsy medication came with an alarm clock. That’s promising.
Ok–so from everything I’ve read and heard and seen and been told–I’m supposed to be TOTALLY ready for bed when I take this. And I probably shouldn’t be alone. So I’m making R.J take his laptop and his headset and his partially finished game of DOTA into bed next to me while I nervously sort through all the crap in the package.
First I’m supposed to set the alarm so I spend a good fifteen minutes trying to figure that out. I don’t get it. I could figure out the new Windows in under fifteen seconds and this is really stumping me. I think I’ve got it set for 3:30AM–but I guess we’ll see…
Then I take the empty pill bottle, fill it up some part of the way with water. Check. Then I take the syringe and plug it into the hole at the top of the bottle. Sexy, alright.
I’m starting at 3grams, which I’m told is a pretty tame dosage. Syringe that out into the water.
Now the first night I didn’t use the crystal light because I didn’t know how incredibly disgusting it would taste. But the second night I got smart and used a lot of grape flavoring. Because it’s like eating a salt rock. Whoa.
I chugged the bottle as quickly as I could and it couldn’t have been quick enough. Then I laid down, took a deep breath–and waited to be knocked out like I was going under anesthesia.
And when that didn’t happen for forty-five minutes I nudged R.J like “I think it’s broken.”
Finally, after what seemed like forever–I got crazy dizzy very suddenly and I thought “this is it! Going to pass out now!”
But I still didn’t. I just got dizzier and then I tossed and turned and the room tossed and turned with me.
I think I had a partial dream. I think I dreamed about stealing a bagel and a slice of cheese from a reception hall while I was on my way to meet R.J’s mom for a bowl of soup at Rocco’s Tacos. (Matzo ball soup, to be exact.) But even that dream felt short-lived and thinly supported. I popped out of it without an alarm.
Man I thought I was going to wet the bed, I’d be so knocked out. I was literally wondering how I was going to waterproof my mattress earlier in the evening and now I was playing Sugarcrush on my phone while I was supposed to be unconscious a la Propofol.
Don’t get me wrong, I felt like I was roofied because 2/3rds of my room were upside down. But I was wide awake, my pulse was 114 and my mouth was full of crunch berries. This probably wasn’t the desired effect.
After my second dose I went to pee, but then scampered back to my bed after it felt like the floor was coming up to meet my knees, but in bed I still wouldn’t say I was “tired’ so much as I was pretty stoned and craving a bagel. Do people get fat on this drug? I ate a huge meal before my first dose, I don’t think I should have been THAT hungry at four in the morning. But half a box of Captin Crunch later I was pretty sure I was going through some kind of Lunesta-esque feast.
Night Two of Xyrem
I think I’m prepared now, right? I think I know what’s up. I syringe out my dose, I add the flavoring. I knock back the shot. (Only it is totally not enough flavoring and I should never skimp on the flavoring again.)
And then I think I’ve got 45 minutes to talk to R.J but really, it kicks in after about ten minutes. And oh boy does it kick in. I’m barely shutting off the lamp before I’m swept away by the dizziness. Tonight my legs also cramp up hardcore and even though I’m finally fatigued enough to sleep–I’m in too much pain! It takes me another fifteen or twenty minutes, but then I’m out– and I’m dreaming.
I dream–all night.
Crazy, fucking wild dreams like I have never dreamed before.
This is what I wrote on my phone at 3:47 when I woke up for my second dose. I left the full grammatical errors and nonsensical-ness intact so you can relive the true crazy that is a Xyrem dream:
MY brain has decided to play out all the patient scenarios where people could not get or afford this drug. So far we have Joe and Theresa from the Real Housewives of Jersey. Brother and sister. Joe strapped a bomb to his chest, getting ready to blow everyone up–and then Theresa insulted him by saying his chest-bomb wasn’t big enough. That he wasn’t juicy.
Next, the couple from friends who adopted a child who could never truly be theirs based on facial symmetry. The child hated them. There were all these maps on brain waves from the potential patients that proved them insane.
Next was wonder women who bombed an army base where the storage locker of a Swedish-Jersey family who owned a nail salon kept their storage locker. That’s what wonder woman wanted to bomb. Then she knew she would have to go and accept her new identity at city hall. She had to dress in clothes that the bomb scattered that she had put in there along with notes of embarrassing secrets to ensure she went through with the bombing. The city refusd her application for a new identity. Which she took in stride as they arrested her.
All patients accepted their supposed insanity as reasonable consequence of not receiving this medication.
Please excuse brevity and typos. I’m on my iPhone and I’ve probably got an IV in my arm!
The next day wasn’t so bad. I couldn’t sleep during the day, but I was still tired.
Night 3 of Xyrem
Took the dose.
Set the alarm.
Didn’t wake up for the alarm.
Woke up 6:30AM in a panic because it was too late to take the missed dose and still wake up for my infusion at 7:45.
That catches you up to today–and I’m wrecked. I’ve been sick, nauseated, exhausted, shaky and today my feet turned purple and I lost feeling in my legs. It’s a much longer story than that–but moral of the story? Don’t miss a dose. Good lord.
Don’t. Miss. A. DOSE.