Dear ones, anyone with small children knows the feeling of being overtired. But if you suffer from narcolepsy, it’s not just a phase, it’s always like this. Regardless of whether they have slept for nine hours at night, in the morning or at midday. The permanent fatigue can sometimes lead to the sufferer suddenly falling asleep in the middle of a conversation. Stefan has been living with narcolepsy and can give us a lot of really good information about it. Thank you, dear Stefan!
Dear Stefan, you have narcolepsy. Can you describe exactly what that is?
Well, there are basically two different types of the disease, type 1 and type 2. I myself have type 1 from the „lottery drum“. Narcolepsy is a very rare, neurological disease.
The symptoms are extreme daytime sleepiness that goes far beyond what healthy people experience, even if you have had a hard day at work, gone out partying for a long time afterwards and then got up early again.
My neurologist, one of the few in Germany who specialises in this disorder, once told me that about 48 hours of sleep deprivation is probably close to the feeling that narcoleptics experience – every day, right after getting up.
Because of this permanent overtiredness, it can happen that you fall asleep from one second to the next – in the middle of a conversation, while turning the fried potatoes in the pan – while watching TV, almost no matter what you’re doing.
What else is typical apart from falling asleep?
In addition to this tiredness, narcolepsy type 1 also leads to so-called cataplexies triggered by emotions. This is a loss of mosquito tone which emotion triggers this varies from patient to patient some react to strong joy, some to shame, others to fear, anger, sadness or, as in my case, to a fright
When the patient is fully conscious, they lose control of their muscles, apart from breathing and usually moving their eyes. In other words, they go limp and, in the worst case, you fall to the floor and can’t move until the emotion has dissipated and disappeared from your thoughts.
As I said, however, at that moment you are completely clear-headed and fully aware of everything around you.
For me, it’s mainly about being scared. But I’m still very blessed here. For one thing, I’m not really scared – and if I do get scared, I get it under control again so quickly that I’ve so far been spared a fall because of it. My knees buckle for a split second, but so far I’ve always been able to catch myself again straight away.
However, narcolepsy can also have completely different symptoms, right?
Yes, it’s not for nothing that some of the world’s secret services actually use sleep deprivation very successfully as a method of torture.
The bottom line is that narcoleptics are no different.
We lack the neurotransmitter hypocretin in the brain, which is responsible for the day – night rhythm and also regulates the sleep phases.
Restful deep sleep is a thing of the past.
But REM sleep comes immediately and for a long time. The part of the sleep cycle in which you normally dream.
„It’s nice“ when the brain, due to being completely overtired, thinks it’s going into the REM phase– but forgets to switch off the light, i.e. close the eyes. This is called hypnagogic hallucinations. You suddenly think someone is standing next to you, hear noises, voices etc., everything seems real for the moment, but nothing is there.
For me, it’s often the doorbell. You wouldn’t believe how often I’ve been startled awake and run to the door at the moment of falling asleep, only to realise there’s no one there. For a long time, before my diagnosis, I believed in doorbell pranks. But our brain can do many more frightening things to us.
When did you first develop the condition and how often does it occur at the moment?
I can’t answer that exactly, to be honest. There may have already been signs of it in my childhood, as I needed significantly more sleep and rest than other children. However, it only got really bad for me during puberty and after a really bad summer flu, which had me in its grip for a good 12 days before slowly improving.
Narcolepsy is an autoimmune disease and is suspected to be triggered by a severe viral infection, but it can also be triggered by exceptional psychological circumstances, such as the unexpected, sudden loss of a close relative.
I realised that something was wrong when I was about 16. Why didn’t I realise it earlier? Well, I had been very overweight since I was born and this has been the case my whole life. Despite various attempts to lose weight as a child, all of which were rather unsuccessful, the doctors later just blamed it all on that: „You just have to lose weight, do more sport etc.“
How are you feeling right now?
Now, thanks to good medication, I am now, fortunately, completely free of sleep attacks. The hallucinations have also almost completely disappeared. What remains is a permanent feeling of tiredness. I never wake up feeling rested. The first half hour after waking up is like being controlled by others, trained. Get up, take a tablet, go to the toilet, get on the couch and wait for the medication to take effect.
After that, I can spend a halfway normal day, but with a permanent tiredness in my luggage, which increases depending on the effort and activity, just like in healthy people. The only difference is that my alertness level in the morning is closer to the „I’m now finishing work after 8 hours“level of a healthy person.
How does the illness still affect your everyday life?
Well, before I was diagnosed and put on medication, I was able to function somehow thanks to the strong discipline I was taught. Because whenever I told the doctors about my exhaustion, I was „just too fat“, I „just have to do more sport“ etc.
Standing on my own two feet and looking after myself was always the most important thing for me. That’s what my parents taught me. Shortly before my diagnosis, I used to walk to the train in the morning, sleeping, and then take the train to work. I sometimes have no memory of the walk to the train. I then slept on the train to my station. Same thing on the way back in the evening.
There was virtually no time or energy left for friends. The exhaustion became more and more unbearable as I got older. Eventually, my GP believed me, did some research and suspected that I had narcolepsy.
Unfortunately, I am now on full disability pension. I simply don’t have the necessary concentration to do my old job in IT. I tried after the diagnosis. After a quiet and relaxed weekend, it works until about lunchtime, then the air is out and my head wants nothing more than to lie down on a pillow and go to bed, even with medication.
How long did it actually take you to get this diagnosis?
It still took almost a whole year from my GP’s suspicion to confirmation in a clinic. You first have to make an appointment with a neurologist. That took three months back then. He sends you for an MRI because a brain tumour, which can try to do similar things, has to be ruled out. The appointment for the MRI also took about 2 months.
After that, you first have to find a clinic that specialises in narcolepsy and can diagnose it. Once you have found one, it can take up to 1.5 years!!!! until you can be seen there. It was only thanks to my GP, who called the clinic every day during her lunch break for weeks and told them about my condition, that I was able to get an appointment with a patient who cancelled his appointment at short notice.
Do you feel that society/your environment takes your illness seriously?
Well, it depends on the people I talk to about it. But I’ve got into the habit of not talking about it as long as nobody notices when they see me. Only if I often have to deal with the same people, where it could be noticeable, do I explain it to them. I’ve now found a way to explain it in a way that healthy people understand, at least I think so.
But yes, sayings like „You just have to sleep longer“ or „go to bed earlier“ are not foreign to me. However, if I get this in response to my explanation, I also know that I won’t get the person’s opinion and understanding and distance myself from the person as far as I can or reduce contact to what is absolutely necessary. My energy is simply too precious for that than arguing with their ignorance.
Is there anything you can do to keep the disease better in check?
Yes, there actually is. Regular bedtimes. So if possible, always get up at the same time and always go to bed at the same time. And the best thing, if you have to have one: a medically prescribed midday nap. Who has that? Well, it’s not really a nap, it’s a power nap. For me, a maximum length of 30 minutes has proved to be good. If I sleep longer, it gets really bad for the rest of the day.
Is there anything you can’t do today that you would still love to do?
Yes, I would love to be able to work full-time again. After my journeyman’s examination, I did further training to become a state-certified technician for information technology – which I also had to finance myself – actually with the aim of doing a good job that would allow me to be financially independent. Looking back, the two years at the technical school were hell and I still don’t know how I managed to pass the exam.
Luckily – and I’m very grateful for that – I’m allowed to drive again thanks to the medication – but I have to regularly attend a neuropsychological driving fitness test – which you have to pay for yourself, of course. But I’m happy to save the money from the little I get now to maintain this freedom.
What else is important for you to say on the subject?
I’m more concerned with the topic of „invisible“ diseases. It’s important to me that healthy people don’t pre-judge those who are ill, but simply take them seriously. As a healthy person, you can’t understand how a sick person is feeling, I understand that. But you shouldn’t laugh at them or label them as „crazy“. And yes, I had to learn that too, and I only realised when I was diagnosed myself how many people I had wronged in the past because I thought: „There’s no such thing, he’s faking“ or something similar. Simply because you can’t empathise with it yourself – where else….
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