What It's Like to Live With Narcolepsy, in Stefan's Words

Hi, friends. If you have little kids, you know what exhaustion feels like. But for someone with narcolepsy, it's not a phase. It's every single day, whether they slept nine hours or not, whether it's morning or noon. That constant exhaustion can even mean falling asleep right in the middle of a conversation. Stefan has lived with narcolepsy for many years and can give us a lot of really good information about it. Thank you, Stefan!

Dear Stefan, you have narcolepsy. Can you explain exactly what that is?

Well, basically there are two types of the disorder, Type 1 and Type 2. I drew Type 1 in the lottery. Narcolepsy is a very rare neurological disorder.

The main symptom is extreme daytime sleepiness, far beyond anything healthy people experience, even after a hard day at work, a late night out, and then getting up early the next morning.

My neurologist, one of the few in Germany who specializes in this disorder, once told me that about 48 hours of sleep deprivation probably comes close to what people with narcolepsy feel – every day, right after they get up.

Because of this constant exhaustion, you can fall asleep from one second to the next – in the middle of a conversation, while flipping potatoes in a skillet, while watching TV, pretty much no matter what you're doing.

Besides falling asleep, what else is typical?

On top of the sleepiness, people with Type 1 also get what are called cataplexy attacks, which are triggered by emotions. That's a loss of muscle tone. Which emotion sets it off is different for every patient. Some react to intense joy, some to embarrassment, others to fear, anger, or grief, or, like me, to being startled.

The patient is fully conscious, but loses control of their muscles, except for breathing and, usually, eye movement. In other words, the muscles go limp, and in the worst case you fall to the floor and can't move until the emotion has passed and faded from your mind. Like I said, in that moment you're completely clear-headed and you take in everything going on around you.

For me it's mainly being startled. But I'm pretty lucky there. For one thing, I'm not really jumpy – and when I do get a scare, I get it under control so fast that I've never actually fallen because of it. My knees buckle for a split second, but so far I've always caught myself right away.

But narcolepsy can also have completely different symptoms, right?

Yes. It's not for nothing that some intelligence agencies around the world use sleep deprivation, very successfully, as a method of torture. In the end, it's no different for someone with narcolepsy. We lack hypocretin, a chemical messenger in the brain that's responsible for the day-night rhythm and also regulates the sleep phases. Restful deep sleep? Forget it. REM sleep, on the other hand, kicks in right away and lasts a long time. That's the part of the sleep cycle where you normally dream.

What's “fun” is when the brain, because of total exhaustion, decides it's time for REM sleep – but forgets to turn off the light, meaning close the eyes. That's called hypnagogic hallucinations. Suddenly you think someone is standing next to you, you hear noises, voices, and so on. For that moment everything feels real, but nothing is there.

For me it's often the doorbell. You wouldn't believe how many times I've jolted awake just as I was dozing off and run to the door, only to find nobody there. For a long time, before my diagnosis, I believed in ding-dong-ditch pranksters. But our brains can do far scarier things to us.

When did it first show up for you, and how often does it hit you now?

To be honest, I can't say exactly. There may have been signs in my childhood, since I needed noticeably more sleep and rest than other kids. But it got really bad in my teen years, after a truly brutal summer flu that had me firmly in its grip for a good 12 days before I slowly got better.

Narcolepsy is an autoimmune disease, and those are suspected of being triggered by a severe viral infection, but psychological shocks, like the sudden, unexpected loss of a close relative, for example, can also be triggers.

I realized something was wrong at around 16. Why didn't I notice sooner? Well, I've been heavily overweight since birth, and that's followed me my whole life. I tried to lose weight in all kinds of ways, starting in childhood, and most of those attempts weren't exactly successful. Later, doctors just blamed everything on that: “You just need to lose weight, exercise more,” and so on.

How are you doing right now?

Well, thanks to good medication, the sleep attacks are thankfully a thing of the past. The hallucinations have pretty much disappeared too. What's left is a permanent feeling of tiredness. I never wake up feeling rested. The first half hour after waking up runs on autopilot, drilled in: get up, take my pill, bathroom, couch, and wait for the medication to kick in.

After that I can have a halfway normal day, but with constant tiredness in tow, which gets worse depending on effort and activity, same as it does for healthy people. Except my alertness level in the morning is already about where a healthy person's is when they're clocking out after eight hours of work.

How does the disease still affect your daily life?

Well, before the diagnosis and the medication, I just sort of functioned, thanks to the strong discipline I was raised with. Because whenever I told doctors about my exhaustion, I was “just too fat,” I just had to “exercise more,” and so on.

Standing on my own two feet, taking care of myself, was always the most important thing to me. That's how my parents raised me. So shortly before my diagnosis, I'd walk to the station in the morning half asleep and then take the train to work. For part of that walk to the station, I have no memory at all. On the train I slept until my stop. Same thing on the way home in the evening.

I had practically no time or energy left for friends. As I got older, the exhaustion got more and more unbearable. Finally, at some point, my primary care doctor believed me, did some research, and floated the idea of narcolepsy.

Now I'm, unfortunately, on a full disability pension. I just don't have the concentration for my old job in IT. I tried after the diagnosis. After a quiet, relaxing weekend it works until about lunchtime, and then I'm done. Even with medication, my head wants nothing more than to lie down on a pillow and go to bed.

How long did it actually take to get your diagnosis?

From my doctor's suspicion to confirmation at a clinic, it still took almost a whole year. First you have to get an appointment with a neurologist. Back then that took 3 months. The neurologist sends you for an MRI, because a brain tumor, which can cause similar symptoms, has to be ruled out. The MRI appointment took about 2 months, too.

Then you have to find a clinic that deals with narcolepsy and can diagnose it. Once you've found one, it can take up to a year and a half!!!! before they can see you. Only thanks to my doctor, who called the clinic every day on her lunch break for weeks and told them how much I was suffering, did I get a spot after about 3 more months, when another patient canceled at short notice.

Do you feel like society and the people around you take your illness seriously?

Well, it depends on who I'm talking to. I've gotten used to not talking about it as long as nobody notices anything when they see me. Only with people I see regularly, where it might be noticeable, do I explain. By now I've found a way to explain it so that healthy people understand, or at least I think so.

But yes, comments like “You just need to sleep longer” or “go to bed earlier” are nothing new to me. If that's the response I get to my explanation, I know I won't get that person's understanding, and I distance myself as far as I can, or cut contact down to the bare minimum. My energy is just too precious to waste arguing with their ignorance.

Is there anything you can do to keep the disease better in check?

Yes, there actually is. Regular sleep times. So, getting up at the same time every day and going to bed at the same time. And the best part, if you have to have something like this: a doctor-prescribed nap. Who else gets that? Well, not a real nap, it's a power nap. For me, a maximum of 30 minutes has turned out to work well. If I sleep longer, the rest of the day is really bad.

Is there something you can't do anymore today that you'd absolutely love to do?

Yes, I'd love to be able to work full time again. After passing my journeyman's exam (the final exam of a vocational apprenticeship in Germany), I did additional training to become a state-certified information technology technician – which I also had to pay for myself – really with the goal of landing a good job that would let me be financially independent. Looking back, the two years at technical school were hell, and to this day I don't know how I managed to pass the exam.

Luckily – and I'm very grateful for this – thanks to the medication I'm allowed to drive again – but I have to take a neuropsychological driving fitness test on a regular basis – which of course you have to pay for yourself. But I'm happy to set that money aside from the little I get now, to keep this freedom.

Is there anything else you'd like to say on the topic?

It's really about “invisible” illnesses. It matters to me that healthy people don't prejudge those who are sick, but simply take them seriously. As a healthy person, you can't know what it's like for someone who's ill, and I get that. But you shouldn't laugh at them or write them off as “nuts.” And yes, I had to learn this too. It only dawned on me when I got my own diagnosis how many people I'd wronged in the past because I thought, “That doesn't exist, he's faking it,” or something like that. Simply because you can't feel it yourself – how could you…

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