Narcolepsy is no longer the big sleep it once was. John Pinching spends a couple of hours in the company of a BBC television director, and he doesn’t nod off once (and neither does the director).
When you turn up to meet someone with this condition, a number of strange scenarios go through your head. Will he be slumped in the couch? Will I have to rouse him with a quadruple espresso? In reality, nothing could be further from the truth. Indeed, we met in a noodle bar as – oddly – Rostam doesn’t drink coffee. Therefore, for one month only, allegiances to hot, stimulating beverages are dismissed, in favour of jasmine rice and teriyaki. Tanoshii to yoi desu ne, as they say (in Japan).
Tell me about your condition. I have a mild form of narcolepsy, which means, although I don’t collapse or fall over, I can get incredibly tired during the day. If it wasn’t for my medication, I would become uncontrollably tired and have to lie down. If you imagine someone with severe narcolepsy having a quarter of a second to react to the knowledge that they are going to fall asleep, I have half an hour. I have more warning, but the need to sleep gradually increases if I don’t crash out. This is why I never collapse, as I normally have enough time to find somewhere to lie down.
How did you find out about it? I had tests on my blood and genetic markers, which established a high probability of narcolepsy.
What’s it like when you wake up? I feel very groggy and often I am so tired that I think I’ve dreamt up conversations that I actually have had on the phone.
That’s dangerous. Not that dangerous.
Depends what you say on the phone, surely? Apparently I just say “Yeah, yeah,” agreeing with everything. My memory around the times that I am tired is incredibly poor. I also find it very difficult to wake up and concentrate. When I surface I don’t feel any more refreshed; I still feel tired.
How did the condition affect you before your diagnosis? For most of my teenage years and early 20s I didn’t know what it was like to feel rested, but I didn’t know there was a problem, because I just assumed this is what students or young people are like. I thought walking around in a daze was standard because I knew no different. I was, however, devising coping strategies. I would regularly come home from school and just fall asleep. During the summer I would just sleep throughout the day.
Did anyone say, “Rostam, you are a lazy bastard”? They just thought I was a lazy teenager and would grow out of it, but I didn’t. People find it difficult to empathise with the condition. They think, if you’re tired, you should just pull yourself out of it, but it’s not that straightforward; we’re talking about a neurological condition. When I was a kid I was drinking Coke every day and, unknowingly, that was my coping strategy. The sugar and the caffeine helped perk me up. I was so tired all the time that I barely remember anything about my childhood.
When did you first start to face up to the problems? In my early 20s, I was planning to drive to my parent’s house, but I felt too tired, so I rang my dad, who’s a psychiatrist, and told him that I wouldn’t be coming back that day and he said “Why?”, and I told him that I don’t like driving at dusk, as I struggle to concentrate. He thought this was unusual and was worried that it might be depression, so I was put on a course of Prozac for a month. It didn’t make much difference: I was still feeling tired and sleeping at odd times during the day, but I did start to do the washing up!
What happened next? This is when I was sent to Papworth Hospital in Cambridge and I had a lot of sensors stuck to my head, so that they could monitor me as I slept. They woke me up at a specific time in the morning, gave me a meal and then during the day they would ask me to sleep, giving me 20 minutes. By the third or fourth time I was, like, bring it on, and was able to nod off on request.
Like a sleep DJ? [Laughs] Yes, I suppose.
What was the upshot? Looking at the graphs it was clear I had fallen straight into R.E.M. sleep [one of the deepest varieties]. They took some blood samples and a few weeks later I had to go to Addenbrooke’s Hospital’s sleep department and they told me that my genetics suggested a 90% probability of narcolepsy.
Was it a relief? It certainly explained a lot. I was a bit worried. Driving had always been an important form of freedom for me and I was concerned that I wouldn’t be able to continue. Luckily, with my medication, I’ve been allowed to drive and I’ve never had a crash. I’m so hyper-aware of my tiredness that I never get in the driver’s seat if I’m remotely fatigued. In that respect I’m probably safer than most people.
What medication were you put on? I began on 200mg-a-day of Provigil (modafinil) by Cephalon, which acts like an amphetamine. If I’m on a low the medication doesn’t give me a high, it makes me awake and normal. I don’t really get a buzz from anything; I can drink Red Bull continuously.
Was the initial course successful? I felt that it was working for the first part of the day, but by the afternoon I was getting tired again. They then upped my medication to 400mg-a-day. It was recommended that I take it in the morning but, although I found it more intense, I still wasn’t getting through the day. After a few months I went back and told them that I found it most effective if I took half in the morning and the other half in the early afternoon. That is how I still take it; it’s more level and I feel awake throughout the day. Interestingly, I have noticed that the advice on the medicine has changed and is more in line with how I take it. That’s reassuring because clearly other people have had the same experience as me.
Overall, what impact has Provigil had on your life? The medication has shown me what it’s like, for the first time, to be properly awake. It allows me to experience what other people feel like during the day. It’s had a dramatic effect on me. To be able to concentrate, be awake, be normal, has transformed my life.
When directing live news have you ever been gripped by the urge to sleep? In a life or death situation the body and adrenaline react in such a way that the need for sleep is delayed. For instance a narcoleptic driving a car could quite easily fall asleep at the wheel, but a narcoleptic who is about to be crushed by a falling building will probably remain awake. After a live programme, however, I do feel immensely tired, but happy to have got through.
What does the future hold? The advances in the last ten years of medicine, treating narcolepsy, have been incredible and I expect the next decade will produce more ground-breaking treatments.
Thanks, Rostam, that was a real eye-opener.
Rostam Kilgour directs BBC London News, providing polite instructions to the likes of Riz Lateef and Alice Bhandhukravi.