My List of Grievances (AKA Why Xyrem is the Worst)

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Ok, full disclosure. Xyrem has given me my life back and I feel amazing, and for that it’s the best. However, Xyrem has also given me a ton of side effects and it’s annoying to take and it tastes bad, and I’m about fed up with these inconveniences, so in this post I am going to list all the reasons why Xyrem is the worst.

10 Things I Hate About Xyrem

1. Xyrem made me lose 10 pounds that I couldn’t afford to lose and now I look like an actual stick.

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A selfie I took recently.

2. Xyrem took away my appetite worse than Adderall ever did. Everything tastes like sand and I never feel hungry — unless I’ve taken my first dose of Xyrem! Then I get the biggest munchies and binge-eat like crazy! What the heck, Xyrem?!

3. Xyrem has given me anxiety and panic attacks for no good reason. I’ve always been pretty chill, and maybe that’s just because I was too sleepy to care about anything, but let me tell you, my chill is gone now! (Lexapro is bringing my chill back though, shout out to SSRIs!)

4. Xyrem makes me puke in the mornings! This just started in the past couple weeks. I was on Xyrem for 6 months with nausea but no puking, and now… bam! Puke city! So that definitely throws a wrench into my already-difficult morning routine (waking up is still super hard for me, even on Xyrem).

5. Xyrem made my acne worse! Like, much worse! I went to the dermatologist and she gave me a cream and now my skin is great (if you ignore the acne scars), but that’s no thanks to Xyrem!

6. Xyrem tastes bad, it’s like drinking the ocean! I’m literally getting half my daily 聽recommended sodium intake from two doses of Xyrem. It is SALTY.

7. Xyrem is weird, and that’s annoying. It’s a liquid, but it’s measured in grams. There’s two doses and one dose is in the middle of the night. It’s also literally just GHB. That is all very weird. The fact that GHB is a narcolepsy wonder cure is even weirder!

8. I can’t eat for two hours before I take Xyrem, and those just happen to be the two hours I feel most like eating! Thanks a lot, Xyrem!

9. I hate the monthly calls from Jazz Pharma. They are not looking out for my best interest. I do appreciate them giving me Xyrem, though.

10. I hate the new syringes with the curved plunger. They’re ugly and hard to use and it makes me sad to look at them. Fellow Xyrem-takers, you know exactly what I’m talking about.

Whew! That was cathartic. Despite this love-hate relationship I have with Xyrem, it works so well that I think I’ll be taking it till I’m eighty. The side effects have to go away eventually, right?

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Straight-Up Good

Reason #1383509 why Xyrem is worth all the聽hassle:聽

Pre-Xyrem, I was taking 150mg of Nuvigil (armodofinil) and 40-60mg of Adderall a day, plus coffee, and I was still a zombie, sleeping all the time and low, low functioning. I might as well have been taking sugar pills for all the good those stimulants did — they certainly didn’t keep me awake!

I have been on Xyrem for a total of four months now, titrating up slooowly. About a month ago I got up to 3.5g twice a night, which is the lowest dose that works for me (I start feeling better during the day on this dose). I’ve stayed at 3.5g since then.

I now take 10mg of Adderall to wake up in the morning and that’s it. That’s it! I sleep for about 8 hours a night and take one 20-minute nap in the afternoon, if at all. I don’t even drink coffee anymore!

And here’s the kicker: I feel pretty decent聽throughout the day, and it’s my own energy, not fake-feeling stimulant energy. It feels so natural, it’s amazing. Soon I hope to go from “pretty decent” to straight-up “good”. 馃檪

All About Xyrem, the Weirdest Drug Ever

Xyrem is a really weird drug, so I figured I’d write a post about it. Even among narcoleptics, Xyrem gets mixed reviews — it’s a miracle drug for some, for others it causes unbearable side effects, and many (if not most) narcoleptics are afraid to take it at first! Because it’s a scary, weird medicine!

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          PLUS it's a liquid! How weird is that?

Xyrem is sodium oxybate, aka GHB, aka the “date-rape drug”. There’s a lot of clickbait-y shock value when it’s introduced that way — “You’ll NEVER Believe Why THIS Girl Takes the Date-Rape Drug EVERY NIGHT” — which is annoying because Xyrem isn’t a date-rape drug, it’s medicine. But the shock value is useful, I guess? All awareness is good awareness?

Anyway. The way it works is you mix Xyrem with water (it’s a liquid), you drink it (it’s disgusting), it puts you to sleep and you stay asleep until it wears off. Because the body metabolizes Xyrem so quickly, it’s necessary to take a dose at bedtime and a second dose 2陆 to 4 hours later, and Xyrem works best if you take it at the same time every night. This generally requires a strict sleep schedule and an alarm clock.

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Note that alarm 1 is set for 2:30am. 
Also note that my alarm clock tells me the phases of the moon.

 

“But WAIT,” I hear you saying. “Narcoleptics take this drug to go to SLEEP? Everybody knows that聽narcolepsy is when you sleep way too much all the time! What’s the point of Xyrem, then?!”

Let me educate you. Narcoleptics sleep all the time because they are incredibly sleep-deprived. Having narcolepsy means that you can’t get enough restful, deep聽Stage 3 sleep because your brain is too messed up. Xyrem allows narcoleptics to reach that restorative Stage 3 sleep and stay there. Getting deep sleep at night relieves聽the daytime symptoms of narcolepsy — it reduces daytime sleepiness, cataplexy, hallucinations and sleep paralysis. Many narcoleptics who take Xyrem say it’s given 聽them their life back.

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                     Thanks, Xyrem!

 

But Xyrem is a real commitment.聽It’s not a medication you can take casually, because it requires some major lifestyle changes.

Here are some of the things you have to do聽on聽Xyrem:

  1. Take it twice a night every night for the rest of your life or go right back to narcoleptic square one.
  2. No drinking alcohol, ever, to avoid a certain undesirable side effect called death.
  3. No eating for at least two hours before taking Xyrem.
  4. Titrate up slooowly or you’ll regret it!
  5. Pick up a new shipment of Xyrem every month. The pharmacy that makes Xyrem ships your month’s supply overnight directly to your house or another secure, approved location and you have to sign for it.

And last but not least,

聽 聽 聽 6. Endure months of weird side effects and strict lifestyle changes coupled with the fact that everyone expects you to be feeling better but聽you don’t really feel that much better. In fact, you might actually feel worse.

I knew I had been sleeping way too much pre-Xyrem, but it seemed like as soon as I started taking Xyrem I could feel just how tired my body really was. I couldn’t sleep the day away聽anymore thanks to Xyrem, so my mind was more awake, 聽but my body felt like it was made of lead.聽I felt like a zombie — technically awake, but without the energy required to actually get up and do stuff. Is that an improvement? It’s hard to say.

It was only once I titrated up to taking 3.5 grams twice a night (a process that took me 6 weeks) that I started feeling聽better. And I still don’t feel “normal”, but I do feel okay. And I think that with time (and patience!) I’ll get closer and closer to “normal”.

So, is Xyrem a miracle drug?

I’d say yes. But it’s not a flashy, instantaneous miracle. It’s a quiet miracle, full of little moments where you stop and say, “I couldn’t do this a year聽ago,” and “I can’t remember the last time this happened,” and “I’ve never been able to do this before”. Your life comes back slowly, piece by piece, and then you keep going.

 

Sorry!!!

Wow, I’m the worst. I haven’t written at all since I came home from Spain three months ago. I’m sorry!

In my defense, it’s been a weird three months. To summarize, I came home, was a pathetic slug on the couch for quite a while, started a free trial of Xyrem, loved it, everything was awesome, had to stop my trial of Xyrem to do a sleep study for insurance, went back to being a couch slug for weeks, did the sleep study (spoiler alert: I have narcolepsy), went back on the trial of Xyrem, had a SUPER RARE AND WEIRD reaction to Xyrem because I didn’t titrate back up, spent a week in the hospital, left the hospital and am now taking a little bit of time off from聽all meds to reset my body聽while I wait for my insurance to pay for my first real, non-trial shipment of Xyrem. Once they pay up (which will happen very soon, I hope!), I’ll get my first month of my very own Xyrem and will be good to go.

Even being hospitalized is not going to scare me away from Xyrem. It’s amazing. It’s a miracle drug, I’m telling you. It might be an actual miracle. I’m going to write a lot more about it because I think every narcoleptic should be on Xyrem, it’s THAT GOOD.

Case in point: when I was on Xyrem, there were days when I had to seriously ask myself whether I felt normal or not. 聽It was like,”What is this weird feeling of nothing being wrong with me? Is this how everybody feels all the time?”聽That’s how close to ‘normal’ I was!

It was like having a second chance at life, I felt better than I have in years and it was like my future was unlimited. The huge divide that I felt between myself and everybody else vanished because, for the first time, I had one foot in the land of the awake. My聽other foot will probably always be in Dreamland, but at least with Xyrem I can exist in both worlds.

I’ll write at length about Xyrem soon because if there’s one thing I’m good at, it’s talking a lot about the things that interest me. And when I feel good, it’s FUN to write and I WANT to write, which is amazing too. Everything comes so easily when you’re not exhausted.

Thanks for sticking with me. I am seeing the light at the end of the tunnel and I can’t wait to tell you about how great life is right now.

Going Home

So, long story short, I had my follow-up for my sleep study, and the sleep clinic isn’t going to give me any medicine, for reasons that are dubious at best. So I’m a little out of options now.

I haven’t left my apartment in about a month except to go to school, the grocery store, and my private classes. Even when I’m at school, I feel like a zombie, or like a shell of a human being. I don’t think I have a personality anymore, all my energy goes into not falling asleep. I can’t string sentences together, not in English or Spanish. My room is a wreck because I can’t keep up with all the things required to make my space neat. All I eat is bread and frozen pizzas because trying to figure out meals and groceries and everything related with food planning is overwhelming and I just can’t rely on food that can’t be eaten immediately. I’m too tired to prepare even simple things.

I don’t want to be like this, but I can’t change my situation through sheer willpower — even though I’ve been trying. So I’m going home.

I had planned to go back to the United States at the end of the semester, but this week I realized that it really can’t wait. So I’m going home next Friday, I’ve got a week to pack up and say goodbye to people.

The good news is that I’ll be able to get Xyrem in the US — probably — and that could turn everything around. If my insurance approves Xyrem, I could even get a supply to take to Spain in the fall so that I can come back and teach another year. So I will hopefully be able to come back.

But I really don’t want to leave. I love Spain, and I keep hoping that things will get better, that I’ll have a day where I feel okay and I’ll be able to go to Madrid or travel a little or something. But I never have days like that, so I need to go home and get my health sorted.聽It really, really sucks.

Diagnosis in Spain

My first sleep study here in Spain was miserable! I had never done a sleep study before, so I wasn’t sure what to expect. My sleep techs were super hot, when I opened the door to the sleep clinic I thought I had walked onto the set of Gray’s Anatomy or something — it was awesome.

As they were wiring me up, the hottest sleep tech, McDreamy, had to attach the electrodes to my legs, which was embarrassing, because I hadn’t shaved my legs in a really long time. Then, while putting the electrodes on my face, he had to wipe off the concealer covering the scabs and scar tissue around my mouth — because I scratch at my face in my sleep. As I was laying down in bed for the night, he took off my shoes, which were white canvas sneakers — and he saw that the insides were covered in blood from a time over the summer when I walked around Washington, DC until my feet were blistered. I hadn’t had a chance to wash the blood out — it’s just too much energy.

I had felt relatively put-together upon entering the sleep lab, but as McDreamy got me ready, I saw myself through his eyes — how my facade of being okay begins the crack the moment you look deeper. It was humiliating.

At some point during the overnight exam, I sat up and began to casually detach the wires from my body. After removing the heartbeat sensor from my finger, a sleep tech rushed in, re-attached my wires, and informed me that I had to remain laying down during the overnight test. The results of my sleep study showed that I was asleep during this exchange, but I remember it clearly, and I think it was real.

The next day I had to do the MSLT, which lasted from 7am until 5pm, and it was miserable. Every two hours, I was told to lay down and go to sleep for about 45 minutes. They were checking to see how fast I fell asleep — an indicator of sleep deprivation — and for REM sleep (dream sleep) during my naps — an indicator of narcolepsy. Two or more dream sleep periods during the MSLT is considered positive proof of narcolepsy.

I spent the day napping, reading, and hanging out with McDreamy. He let me come into the sleep tech room where they monitor patients and showed me the recordings of my brain waves from the naps. He told me I had slept during all 5 naps, and pointed out where I had fallen into REM sleep. For lunch, we ordered pizza.

I had my follow-up the next week, with a doctor who was tall and handsome, with salt-and-pepper hair, and extremely intimidating. He was the director of the sleep center, and spoke perfect English.

He informed me that my sleep study had shown nothing out of the ordinary at all — that my results were the results of a normal person. I had not fallen asleep during two of the naps, and for the other three I had fallen asleep at the 20-minute mark — the time it would take a healthy person to get to sleep. There was no REM sleep.

I told him that was impossible, I told him what McDreamy had said about my sleeping during all five naps, and about the REM period. I started to cry, because here I was sitting across the desk from this man, and I was so tired that I felt drunk, my eyes wouldn’t work right, and he was telling me that I was healthy, and I would never get medication to feel better if these were my results. After I left the sleep clinic, I sat on a bench outside the metro station and sobbed.

The doctor promised me that he would analyze the data from my sleep study himself, and I came back the next week for that appointment. As it turns out, after he looked at the data, I had indeed slept for all five naps, and had REM sleep in two of them. My overnight study showed strange sleep architecture, with too much light sleep and REM sleep, and hardly any deep sleep. I also had a sleep-onset REM period when falling asleep during the overnight exam.

The聽results looked like narcolepsy — the only problem was that it took me a long time to fall asleep during the naps. To test positive for narcolepsy, you need to have at least two sleep-onset REM periods during the naps and it needs to take you about 7 minutes to fall asleep.

The doctor thought this was because I hadn’t stopped taking my medicine before the sleep study. Since I am on a high dose of stimulants, he guessed that the stimulants were still in my system during the nap test, and that they affected my sleep latency. So he prescribed me another sleep study, but for this one he wanted me to be medicine-free for two weeks beforehand, to ensure that they were out of my system.

Without medicine, I can’t go to school and do my job, even though I only work twenty hours a week. So we scheduled the sleep study for the end of my Christmas break — while most people spent the two-week break traveling and celebrating the holidays, 聽I had to spend the entirety of my time in my apartment, sleeping and resting. I couldn’t pass the time by reading or watching TV because I was too tired to process the words on the pages, or the images on the screen. It all looked like nonsense to me.

It was scary to see just how sick I was without my medicine — there were days when I didn’t eat because I had no food in my apartment and was too tired to leave the house.

I just took my second, med-free sleep study. I haven’t gotten the results yet, but I’m hoping they turn out super narcoleptic. I really, really want to stay in Spain longer — and for the doctor to be comfortable prescribing me sodium oxybate, the tests need to show, without a doubt, narcolepsy.

 

Aside

I’m Back!

I’m sorry for not posting anything recently! I’ve been so tired, I’ve had to focus on just surviving day-to-day. But I’m back now!

I’m still trying to qualify for sodium oxybate here. I want to teach at my school for another year, but the meds I take now just aren’t good enough to justify staying in Spain for another whole year, it’s too difficult, I think. But sodium oxybate would be a game-changer — I truly think it would allow me to stay here longer, and to participate more in the Spanish life. I really love Spain, and there’s so much I haven’t seen or done yet, so I’m really hoping that I can get sodium oxybate. Otherwise, I think I’ll have to go back to the States, which would break my heart.