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.

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On trying to treat an ABI-related sleep disorder

BY: DONALD NICOLSON

DISCLAIMER: THIS IS ONE PERSON’S ACCOUNT OF A TREATMENT FOR A SLEEP DISORDER, AND BY NO MEANS REPLACES A MEDICAL DOCTOR’S ADVICE. BIST DOES NOT PROMOTE OR ENDORSE THIS, OR ANY OTHER, TREATMENT.

My heart sank when I heard the destination was in New Zealand. I feared the stroke that had put me in coma as a teenager would prohibit me from long-haul travel to attend and present at the research conference in Queenstown.

A picture of the author, Donald Nicholson
Donald Nicolson

In early December 1991, after having what I thought at the time to be a mild migraine, I suffered a disease that was highly unusual in a healthy 17-year-old: a brain haemorrhage ( a blood vessel in my brain burst). I required emergency surgery, and doctors quickly ascertained that a tumour had caused the bleed. Scans at the time showed (and still do) an ‘abnormal mass’ in the region of the bleed. My family was, as you can imagine, devastated when it happened — I never got them a Christmas present.

I was in coma after the bleed for maybe three weeks, and spent around 6 weeks in hospital. The surgeons did what they could at the time, and there was a good chance that I might not have lived. I was completely disoriented as I came out of the coma. I pulled the intravenous tube from my nose (ouch), my catheter (bloody agony,  I remember that one painfully) and worst of all, the tubes that were draining the blood from my head  (I don’t remember that one at all).

Due to the site of the bleed in the brain, the nerves that control my eye muscles were damaged, and I have had a strabismus (squint eyes) which left me with diplopia (double vision) since the trauma. But my double vision was not immediately picked up after my bleed, and that is no one’s fault.

The reason was that nobody, least of all me, realised that I was seeing double. That changed in one distinct moment, when my mother was visiting me in hospital with one of her sisters, who is a twin. I thought both my aunts were there, and let them know that. And it was then that they began to suspect something was wrong with my vision. So basically I lived with double vision for a few weeks after the bleed without it being any problem for me until I was struck with the said challenge and I tried to make sense of it.

cartoon of person who can't sleep
IMAGE: PLATFORM.ONLINE.NET

After a surgical attempt to repair the muscles failed, (because the muscle damage was too extensive), I went back to living quite happily with double vision. I wear glasses with one lens deliberately occluding to give me the impression of seeing single, it’s not perfect but it works well. My brain has actually gotten used to seeing double over time, and now quite often I don’t even register it. I would say this is a fine example of neuroplasticity, which it was thought was impossible in a mature brain like mine when I had the bleed. I even have my own rationale, it is you people with two eyes and one vision that have abnormal vision.

So after coming to terms quickly with my visual impairment as being the only apparent disability from a significant trauma, I got on with my life as a student. I found my honours degree no more of a challenge after my illness than anyone else , if anything I had a greater motivation than most to succeed. I got my first degree only four and a half years after my illness. And after a few failed attempts at developing a career in the healthcare sector, I went back to university and earned a Master’s degree. I worked in the field of health services research for 13 years, albeit going from post to post and university to university as is common in academia.

But I worked hard, and earned a doctor of philosophy in 2009. Despite suffering a cerebral insult, I have attained an Honours degree, Masters degree, and a PhD, which was surely proof that nothing was wrong with me, right?

Things started to go wrong in my career after my PhD. I did a post-doctorate position and delivered work for each project. I even produced some work of my own, which enabled me to present at an international conference at Johns Hopkins University in Baltimore (which I consider to be the ‘blink and you’d miss it’, pinnacle of my career). Alas after a peak, there is a massive drop, and it was when I got my next post in England that things started to go pear-shaped.

picture of an unmade bed
IMAGE: OPENSPACEFENSHUI.COM

I moved with bittersweet enthusiasm to a new post, having just fallen in love with a woman back home in Scotland (who is now my wife). We did the weekends together thing, and I threw myself into my new job with my usual zeal. But I was on probation for the first three months and so I was receiving evaluation on the job. It didn’t go well. After only a month my only response when they asked if there was anything wrong which might be affecting my work, was to say the ironic phrase “Yes, I’m fatigued”. I said this implicitly, and when asked why I said it, I could not explain, and so had to retract it. Two months later, I was back home and job hunting.

Time dragged and I went from interview to interview, but eventually found a research post, again away from home. I had by now put the last experience behind me and was looking forward to our wedding. Ironically, the night of our wedding I got one of the bridesmaids to specifically make me a strong Turkish coffee, because I wanted to be alert for the night and not asleep as usual by 9:30 p.m., which was my norm then. The signs had for long been there to see, but I missed them repeatedly.

I managed to work for two years in this post, but one day about six months in, I remembered feeling drowsy. This happened again, and I started to notice that I was falling asleep in the morning and/or the afternoon at my work station. I felt tiredness grow in me, uncontrollable yawning, and my alertness/concentration decreasing. In addition I felt agitation which would increase as I tried to fight the symptoms. Despite all my efforts and the best will-in-the-world, it would culminate with me falling into a short, sudden sleep. This would later be diagnosed as a sleep attack.

Sometimes when I came round from the episode I noticed that I had made several errors in the document I had been working on at the time; e.g. poor spelling, nonsense words, crap formatting, things in the wrong place. It was happening regularly and in many different places: on a train, at my desk eating my lunch and during a lecture.

These symptoms were the reason for me bringing them to the attention of my GP. Still being an outpatient due to my initial bleed, it was decided that I would see my consultant, because he would need to discount any change in my current condition before any other consultant would touch me.

I began to think back and I saw this was actually not a new experience but something that had been going on much longer. I realised that I had been an early riser for at least the last 15 years, in part by necessity when I did shift work. My early morning awakenings continued when I began working in academia, which had been accommodating by offering flexible work patterns, including working from home. I remembered when I had a drowsy episode in the summer of 2002 — suddenly falling asleep — a GP colleague jokingly asked me if I had narcolepsy. I would rise early to work on my PhD, going into work around 6:15 a.m.; then by mid-afternoon being back in my flat and often having a siesta —  I thought by choice. I seemed to recall having drowsy episodes when I worked in Scotland from home and overcoming my tiredness at times by taking a power nap. I saw that was something that had been going on for a longer time than when I had first acknowledged it.

I saw a sleep medicine specialist, and had an overnight sleep assessment which showed I got to sleep quite quickly, but was for all intents and purposes awake in my sleep, and bright and awake by 3:30 a.m.. Apparently I was only in proper, deep (restorative) sleep for around three hours. I was diagnosed as having fragmented sleep disorder, which explained the sleep attacks I was having and effects to my cognitive functioning. The cause was the initial insult to my brain way back, apparently it is really common in head injured people, but experts don’t know why.

I was prescribed 0.5 mg of Clonazepam, which would hopefully help to keep me asleep, which worked well for about a month. I was still waking up early, but not waking up during the night. Then I started to be ‘awake’ in my sleep again.

FEET UNDER BLANKET
IMAGE: THRILLIST.COM

So I went back to my GP who prescribed me 10 mg Amitriptylin to take in conjunction with Clonazepam, and I contacted the consultant to make a new appointment. Taking the two drugs worked effectively for maybe one month, but again I grew tolerant to them and began to be awake in my sleep, and having sleep attacks.

My consultant mentioned all the different drugs I could be put on to try with my sleep, but there remained the probability that I would develop a tolerance to them all. That aside, I am not a fan of taking drugs and so had been hesitant to even start on them. Which is why my consultant has now suggested that I try chronotherapy, which will involve taking melatonin supplement at 3:00 a.m. to aim to fall asleep when I would awake, and then slowly staggering this forward to taking it at an earlier time until I am able to fall asleep and maintain this throughout the night. There is no guarantee that this will work, although it is hoped that it could reset my circadian rhythm. More so, many people find chronotherapy unbearable because it requires 9 months of absolute adherence to the late staggered bedtime.

So why am I sharing this?

As I write this, not one week after the last appointment with my consultant, I have been let go from another job, due to my inability to work at the necessary standard adequately, and efficiently, in a short time frame. (That I shared with them my medical story is one assumes mere coincidence). These are all things that I am able to do, when I have the time and the space, but not at the speed people want in this frantic day and age. So these are frustrating times. But I have now finally acknowledged to myself that I will probably always struggle to hold a “regular job”. Writing this won’t change anything, but it reminds me that I am a very good writer, and that I am at my most financially useful as a paid writer. As for my illness, well I’m not bitter, but my eyes are twisted!

RE-POSTED WITH PERMISSION FROM THE AUTHOR


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.