Part 2: Trying to treat an ABI-related sleep disorder

BY: DONALD NICOLSON

This is a follow-on from my On trying to treat an ABI-related sleep disorder post and deals specifically with my experience of chronotherapy, which takes its name from Cronus, the Greek God of time.

feet sticking out of bed
photo credit: Sockless ! via photopin (license)

These writings are not intended to replace your physician’s advice, because I am not a medical doctor. I am however a PhD, and spent a large part of my life researching the effectiveness of medical treatments. But that is not what I do here. (Consider this more of an experiential tale). One last disclaimer, the attempt I make at explaining the treatment is based on my own knowledge and opinions. It might be right or otherwise; but it’s ‘my take’.

As I explained in my previous blog, I have for long been suffering from Advanced Phase Sleep Disorder, where I fall asleep early at night, wake up ridiculously early in the morning, and get little restorative sleep in between. The bigger problem for me was that this resulted in me having sleep attacks during the day, which would have knock on effects for my quality of life and daily functioning. I explained in the blog how I had tried various drug combinations which had a short term effect but then wore off, and so left me back at square one.

It was decided as a (not quite) last roll of the dice, that I would try chronotherapy, taking the supplement melatonin. Melatonin is a hormone produced in the pineal gland, which acts as a signal to tell the brain to switch off for sleep. Light (artificial or natural) stops production and so stops the person from feeling sleepy during the day. Darkness leads to the production of melatonin, to tell the brain to prepare for sleep. Thus a melatonin supplement, which I take every night, acts on my brain to signal when to go to sleep. On the other hand, early morning sunlight would stop the production and release of it, and so my brain and body would wake up.

Bottle of melatonin
photo credit: 21.5 Zzzzz zzZzZ via photopin (license)

In Scotland (where I live) melatonin is only available by prescription, whereas in Canada it is available over the counter. More so melatonin is only available in slow release form in Scotland. That means in theory it will take longer to be absorbed, and so can have a longer lasting effect. To slow down its absorption, it is recommended to have something to eat before taking it. Some people might say that because melatonin is a naturally produced substance, the melatonin tablet is not a drug.

Chronotherapy is a new area of medicine based on the rationale that medicines work best when administered and metabolised at a particular time of the day. (This can be for any medicine). For myself it was thought the best time to go to bed would be at 2 a.m. after taking the melatonin supplement at midnight because the previous sleep assessment had found my waking time was somewhere around 2.30 a.m. The hope was that I would in effect recondition my body to learn to be asleep around the time it was accustomed to waking up. The eventual plan would be to move backwards in bed time one hour every two weeks, eventually to 11 p.m., thus dragging back my time of falling asleep to something more ‘normal’; while hopefully remaining asleep at the time I was accustomed to be awake.

man sleeping
photo credit: must sleep via photopin (license)

The first two weeks were hell because going to bed at 2 a.m. was a real challenge. Having been used to going to bed at 9.30 p.m. – 10 p.m., suddenly I was forcing myself to stay awake five hours longer. Some nights drinking an evening espresso and then settling down to my favourite DVDs helped. Others, I was falling asleep even before taking the melatonin, far less afterwards.

My new late night wake routine had some benefits. It introduced me to TV shows that I had never heard off, far less seen, that had been airing for years – here I am thinking Drifters and Toast of London.  I found that when I took the melatonin at the required time, I would often begin to have sleep attacks within 20 to 40 minutes, falling asleep three or more times. Staying awake until 2 a.m. was impossible (even when Man V. Food was on TV), and I was usually fast asleep by 1:45 a.m. On the only occasion that I did stay awake until 2 a.m., it was because my wife stayed up with me and refused to let me fall asleep early. Sleeping in until 8 a.m. was equally impossible, either because I was wide awake around 7 a.m., or woken by an alarm clock. My consultant, I’m sure with no insincerity, recommended that I expose myself to bright natural light for 45 minutes from wakening. Living in Scotland he should have realised that in autumn and winter, it is as rare as hens teeth to have such illuminating and restorative sunlight so early in the morning!

After the two weeks, I did my first reduction. I took the melatonin an hour earlier, went to bed at 1 a.m., and got up at 7 a.m. That then became my goal for a fixed wakening time. It was easier being able to stay awake until 1 a.m.; although I was still falling asleep around 20-40 minutes after taking the melatonin, so it was agreed that I could take the melatonin one hour before going to sleep. For me sleep or getting to sleep was never a problem. It was the staying asleep and waking at what might be seen as an ‘inappropriate’ hour that had been the problem. After initially promising results, I was again awake in my sleep, and waking up in the middle of the night. The sleep part I had long ago learned to live with. It was the sleep attacks that drove me to the GP.  Perversely the frequency of my sleep attacks increased when I began the chronotherapy, despite my sleep (seemingly) getting better. I suspected that I had developed tolerance to the melatonin at 2 mg and so it was increased to 4 mg. This can be increased to 8 mg if need be.

alarm clock
photo credit: Alarm via photopin (license)

I was told at the outset that chronotherapy might not resolve my sleep attacks problems. Based on nearly three months on the regime, I think that was a fair warning so far, because I experienced an increase in the frequency of sleep attacks at this time of year in comparison with previous years. The initial benefits to my sleep disappeared as I grew tolerant to the melatonin dose, which is understandable. Many people are put off or stop taking a medicine because of the side effects. Thankfully I have not had any apparent side effects to note. But that is not to say that that would be so for everyone.

Chronotherapy is a very precise treatment regime, based on taking the drug at a specific time every night diligently, and likewise for time going to bed and awakening. I was warned that I had to without fail adhere to the bedtime regime. I have stuck to it diligently, more often than not. But the ideal wakening time went out the window long ago. That was not an issue for me and I am quite practical about that. Mind you, I take pleasure in the few occasions that I do sleep until or after the allotted time. These are few and far between and must be treasured. To paraphrase Irene Cho; ‘I do find time to sleep. But I just find it difficult to do so’.

As I write, I have not had a sleep attack in over two weeks. That is equally something to be treasured. But it is not to say I am over them. I am only one quarter of the way into the chronotherapy, so there is a long way to go yet before I know IF it has worked.


Donald worked in academic research for 13 years and published over 30 research articles.  He is now a freelance writer and provides online academic support.

Advertisements