What They DON’T Tell you About Taking Xyrem

I’ve been taking Xyrem for my Narcolepsy since June of 2016.  I’m almost a year into taking the medication. I want to talk about what I wished I knew the first month of taking Xyrem.

So, you’ve been prescribed Xyrem. You’ve talked to your doctor about the risks and possible benefits, gone through the telephone counselling with a representative of the Xyrem Success Program, a nurse, and spoken to the dispensing pharmacist. You’ve read the manual and googled furiously. Wikipedia said nothing of substance and you just want to know what it’s going to be like.

Here’s what I wish I’d known on my first night with Xyrem.

  • The stuff tastes like Poseidon’s salty butthole.
    • Yes, it’s horrid, but it gets easier to swallow.

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  • You’re not going to pass right out. 
    • You’re probably going to sit there fighting the drug. It’s going to take you ages to get asleep and you’re going to be dizzy.
  • You’re going to have the spins like you’ve drank 16 coolers

  • You’re also going to want to get up and move around because your judgement isn’t great. 
    • Don’t do it – or have someone help you out. I’ve fallen down stairs and smacked into walls and doors. DON’T UNDERESTIMATE YOUR NEED FOR ADULT SUPERVISION
  • Go pee before bed and just before your second dose
    • Get yourself into the habit – walking around on Xyrem sucks and it’ll keep you from worrying about peeing the bed.
  • You’re going to sleep horribly for a while. 
    • It really does take some getting used to – Xyrem sleep is different than regular sleep and for a while you’re going to hate everything.
  • Having your last meal two hours before you take your first dose is not enough time
    • It’s a guideline – play around with the timing. I find 4 to 5 hours is best for me and I fall asleep within minutes.
  • Your feet are going to feel like they are on fire
    • It’s normal, it’s cool, you’re feet aren’t going to fall off and they will be there in the morning.
  • You are going to sweat magnificently
    • Your blanket, comforter, flat and fitted sheets, and your PJs are going to be soaked. You will sweat profusely no matter the temperature or amount of fans in your room. Zinc helps with the sweaty smell so that you won’t have to change your sheets 18 times a week.
  • Your whole body will ache after a while
    • As far as I can tell, there are two reasons for this: being in a deep sleep, you may not move if you’re in an uncomfortable position and Xyrem saps your magnesium which can cause nerve pain. Make sure you’re falling asleep in a comfy position – i.e., not with your phone or with the spine of your book on your face, or with your legs twisted up. – and take some magnesium supplements (bonus: some compounds come with Zinc!)
  • You might turn into a drunk 6-year-old
    • It’s actually really funny.

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  • Your routine owns you
    • There’s no way around it. Go to bed at the same time, but more importantly – wake up at the same time each day. Dinner is also at the same time, snacks are at the same time, meds at the same time, schedule your naps for the same times. This will be your saving grace. Be rigid as you need to be at first, and loosen it up accordingly.
  • I found a smart-watch or an activity tracker to be really awesome for me
    • I used to own a Pebble Time which I used to track my sleep, get my alarms, and track my activities. I upgraded to a ZenWatch 3 recently and it does wonders to see when my sleep is good, what ends up screwing my sleep up, and track how I feel. An el-cheapo FitBit or other activity tracker might help you keep in your routine and stay on track.

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      Deep sleep with 7.5G

  • You might get really sensitive to sound, light, and touch
    • I found this out when my fiancé used his phone or laptop while I was trying to sleep. Click. Clicky-click. Tap-tap-tap-click-tap-tap. The sound drove me bananas and the light was even worse. While I was asleep, he’d try to rub my arm or my back and I would flat-out kick him. Even now, I have to have the T.V. at a very specific volume and brightness setting in order to have the perfect combination of noise-to-light ratio for sleep.
  • You might want to have a beer with your friends once in a while
    • Or you might not miss alcohol at all. Either way, drinking while on Xyrem is a huge recipe for disaster. If you have a beer with your buds or go drinking to celebrate an achievement – do not take Xyrem. This can kill you.
  • Want to take some Nyquil for a cold? DON’T
    • Chat with your pharmacist to find out what you can and cannot take while on Xyrem. A general rule of thumb is: if it makes you sleepy, don’t take it.
  • Medic-Alert bracelets are totally worth it
    • I never thought I’d need one, but let’s face it: accidents can happen and it’s better to be safe.
  • You’re going to have those damn syringes everywhere
    • They are good for impromptu water fights!
  • Wash your med cups once in a while
    • They can get pretty icky by the end of a month. Rinse them out once in a while, you savage.
  • You’re going to wake up at 3 am ready to punch the day in its face
    • You’re going to be ready to take on the world at ridiculous times of the day. It’s amazing to see the change, but it sucks when you have to get up at 7am for work. Have a little stretch, a snack and some water, and get your butt back into bed. You’re still narcoleptic, you’ll fall back asleep.
  • Cold water or Crystal Lite in your med cups makes for an easier shot of Xyrem
    • If you’re really having a hard time stomaching the doses, try super cold water. Refrigerate a bottle of water and make that your dilution water.
      If that’s not enough, Crystal Lite has no sugar to disturb the effectiveness of Xyrem. Mix your Crystal Lite in a water bottle and put it in the fridge for your doses – dilute the Xyrem with the juice! Voila!
  • Don’t get into the habit of snacking after the Xyrem hits you
    • I’ve gotten into the habit of having a snack right after I start feeling the meds. For the love of god, don’t do it. I turn into a whiny, drunk 5-year-old and all I want is a cookie. Now, I have to train myself out of it.
  • Remember puberty? Acne, pimples, and blackheads! Good thing you’re going through it again
    • Breakouts are back so it’s time to get yourself into another routine! A skin-care routine! I love Neutrogena’s Rapid Action Daily Leave-On Mask and Cleanser.

Narcolepsy – What is it?

Whenever I mention my diagnosis to someone I usually get responses such as:
“Oh, yeah. I had that for a while.”
“Oh, that’s cool! I also have a hard time sleeping.”

Let me just clear one itty bitty detail: I have Narcolepsy – not insomnia. I’m fantastic in bed. I can sleep for days at a time!

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To understand sleep disorders, it’s best to understand the mechanics of sleep.

Everyone experiences different kinds of sleep: Rapid Eye Movement (REM) Sleep, and Non-REM sleep. We pass through a fun cycle of phases going from lightest sleep, Non-REM 1, to the deepest; Non-REM 4. After 90 to 120 minutes of cycling through the Non-REMS, we go through a phase of REM Sleep and the process repeats itself.

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The way I typically explain my diagnosis to others is to have them imagine that they’ve been up for 3 days straight. They are in full-blown self-deprivation – with REM rebound, drunk-like cognitive states, irritability and mood swings, micro-sleeps, the works.

Now, everyone goes through this at one point or another. So what’s the solution?
Right. Sleep more and resume regular activities! You may sleep for 18 hours for the next few days to regain your sense of wellbeing and away you go!

Imagine that those 18 hours don’t help. In fact, they make the exhaustion worse. You wake up more exhausted every day. There is no escaping the feeling that you’re about to collapse from absolute, crushing fatigue.

Welcome to Narcolepsy.

Basically, narcolepsy is a condition that affects a sufferers ability to regulate their sleep-wake cycles. Your body eats away the neurons in your brain that allow you to decide when it’s lights-out. These neuropeptides also play a role in your appetite and metabolism.

It is a sleep disorder with a neurological auto-immune cause that is more than likely genetic. It usually shows up in adolescence or early adulthood and there is no cure.

Narcoleptics deal with excessive amounts of REM sleep and not enough restorative Non-REM sleep. This combination of light sleep stages makes us incredibly susceptible to interrupted sleep and fun parasomnias such as REM-Sleep Behaviour Disorder.

The hallmark symptom of Narcolepsy is a symptom that is exclusive to this disorder: Cataplexy. During REM sleep, your muscles are paralyzed to inhibit you from chewing on your pillow when you’re dreaming of a juicy steak or otherwise acting out your dreams. Essentially, cataplexy is a manifestation of this muscular paralysis that happens during the day when you’re probably not going to want it to happen such as during periods of laughter, great surprise, or anger.

Triggers for cataplexy differ from person to person and its severity can lead to a full-body collapse or some minor facial drooping.

Speaking of paralysis, another common symptom is sleep paralysis! Usually accompanied by either hypnopompic or hypnagogic hallucinations.
Hypnopompic simply means “while waking up” and hypnagogic, while falling asleep.

My hypnagogic hallucinations tend to be spiders.

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In 2015, I had to drop out of university because my symptoms had gotten so bad. I was no longer allowed to drive with the threat of having my license revoked – but since I did not have a car at that point, my doctor and I made a deal that he wouldn’t report me to the ministry of transportation if I promised to not drive at all.

At this point, I was still undergoing tests to determine my diagnosis. Having been on REM suppressing medication, my cataplexy was moderately under control. Unfortunately, this made the diagnosis a bit longer.

The Diagnostic Process

For the average narcoleptic, diagnosis usually takes about 10 years from symptom onset. That is a huge amount of time to deal with the effects of this illness.

Personally, my symptoms likely started at around age 9 or 10, but I was diagnosed at age 22: a whopping 12-13 years.

At 21 years of age, I was referred to a sleep clinic due to a huge amount of sleeping issues that could no longer be explained simply by medication side effects. The sleep clinic called me in to do a polysomnography – a sleep study. The technician attached me to several monitoring devices – an EEG, ECG, muscle monitors, O2 monitor, and had cameras and audio equipment to monitor any strange sounds or movements.

After my sleep study, I was brought back in to discuss the results. To everyone’s huge (non) surprise – I wasn’t sleeping well. The doctor took a more detailed history and explained that they would have to do further tests – but at this point it was either narcolepsy or upper airway resistance syndrome.

The doctor booked me for a test called the Multiple Sleep Latency Test. This is a test that takes all day. You’re asked to come into the clinic in the morning – no coffee, of course – and they set up the monitoring devices again. You’re then asked to take a 20 minute nap. A technician will wake you up and threatens to yell at you if you fall asleep for the next hour – jokingly, of course. After the hour, you go back to sleep for 20 minutes. This happens 4 or 5 times. They measure the amount of time it takes you to fall asleep and when or if you go directly into REM sleep.

Fun fact about the MSLT – it sucks. Seriously, I felt like I was being tortured that day.

When the doctor had me come in to discuss the results – he told me that I was in the extreme category. My physical and mental abilities were significantly impaired. I cried in his office – I told him I felt like I was dying; I was sleeping for 22 hours most days at this point. I drank energy drinks and fell asleep in buses, in hallways, everywhere. I couldn’t get groceries because the energy it took to walk to the store meant I couldn’t cope with actually being at the store and getting home.

It was then we discussed the treatment for Narcolepsy.

How do you deal with this?

Narcolepsy has no cure, but there are ways to manage. Uppers and Downers are the main treatment.

Newer stimulants such as modafinil and armodafinil are the usual first line of defence. Then a CNS depressant called Xyrem is introduced to consolidate sleep cycles and improve interrupted sleep-patterns.

Finally, environmental changes such as prescription naps of about 30 minutes throughout the day can be incorporated, as well as, moderate exercise!