- Professional Nap Taker
- Fainting Goat
- Sleeping Beauty
- Day Dreamer
- Animal Who Sleeps Its Life Away
- Extreme Sleep Athlete
- Ridiculous REM
- Person Who is Amazing in Bed
- Blanket Burrito
- Caffeinated Meatsack
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.
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!
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.
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.
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.
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.
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.
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!