Improve Your Sleep Quality to Reduce Your Symptoms

BY: ALISON

Studies have long shown that sleep deprivation, especially when chronic, can have detrimental effects to our health.

Just to name a few, poor sleep quality can impair brain activity, cognitive function, decision-making, concentration, learning, memory, balance, coordination, and emotional state. It also increases the chance of being involved in an accident. 

All of these are common to the symptom profile of brain injury survivors. One of the most frustrating lingering effects from my concussion was disrupted sleep. At night, I had trouble falling asleep, staying asleep, and entering deep sleep. I either felt like I was half awake or I’d have terrible and vivid nightmares.

woman sleeping on a bed with a dog
PHOTO: burst.shopify.com via Pixels

During the day, I was beyond tired and frequently took long, restless naps. I thought that I would never get better until a simple change to my sleep schedule triggered drastic improvements across all of my symptoms.

A neuropsychologist was the first to suggest that I focus my efforts solely on waking up at the same time each morning. Coupled with avoiding napping, this reset my circadian rhythm (i.e. internal clock) and improved the quality of my sleep. The medical director of the sleep laboratory that I visited also recommended this approach. After adhering to the new routine for just a few days, my headaches lessened in frequency and severity, the brain fog lifted, my mood stabilized, and I was able to tolerate more stimulation. Instead of relying on pharmaceuticals, I have adopted the following strategies for sleeping problems to my lifestyle.

Guidelines for Optimizing Sleep Health

Reset your Circadian Rhythm

Our bodies were meant to sleep after sun set and to wake with the sun rise. In fact, the highest quality of sleep that you can have is before midnight. However, bright lights in large cities, sedentary lifestyles, and modern technology has resulted in bad sleep habits that disrupt our internal biological clocks. Here are different ways that you can reset your circadian rhythm.

Go camping for one week

Studies have shown that camping for at least one week can reset adults’ internal clocks.  This result was contributed to increased exposure to natural sunlight during the day and reduced exposure to artificial lights at night. That means that you don’t have to go camping to sync your body’s clock to nature’s light and dark cycle.  See other strategies below.

Set your alarm and wake up at the same time, every single day

Setting a daily routine will help your body shift its circadian rhythm. It is difficult to control when you fall asleep at night, so focus more on when you wake up. Be sure to get out of bed as soon as the alarm goes off. If desired, set your wake up time half an hour earlier every three to four weeks, until you’ve reached the ideal time for your lifestyle. Eventually, your body will be conditioned to naturally wake up at the same time. The remaining tips will help you fall asleep faster and will make getting out of bed easier.

Get exposure to sunlight

Get at least half an hour of sunlight during the day. According to my sleep clinic, this is most effective if done within 30 minutes of waking up.

android phone says 12:09 time
PHOTO: NOAH ERICKSON VIA PIXELS

Don’t take naps!

If you must take a nap in the middle of the day, set an alarm and don’t nap for more than 20 minutes.

Avoid blue light before bedtime

Artificial lights and electronic devices emit blue wavelengths of light that suppress the secretion of melatonin, a hormone that regulates sleep.3 Using a TV, computer, phone, or tablet within 1 hour before bed will make your brain think that it’s still day time and disrupt your circadian rhythm.

An extreme method

I stayed awake for 36 hours straight so that I would be sleepy enough to fall asleep at an appropriate hour on the second night. I then applied all of the other healthier techniques moving forward. My neuropsychologist said that this extreme method is not appropriate for everyone, so consult your doctor first.

Adjust your diet

Avoid caffeine after 10 am

An even better idea would be to give up caffeine altogether for at least four weeks. Keep in mind that caffeine may be hidden in foods and beverages other than coffee and tea. This includes chocolate (i.e. cocoa), soft drinks, energy waters or drinks, coffee or chocolate flavoured ice cream, medications, etc.

Avoid alcohol

Alcohol’s initial effects may make you feel sleepy, but it will actually wake you up in the middle of the night and/or decrease the quality of your sleep.

Don’t eat three hours before bedtime

You shouldn’t go to bed hungry either, so if you must eat before bed, choose healthy, light snacks and consume small portions.

Adjust your lifestyle

Regular physical activity, especially outdoors, will do wonders for your overall and sleep health. But if you exercise after 6 pm, it may end up stimulating instead of relaxing you.

four feet, under the covers
PHOTO VIA RAWPIXEL.COM

Use your bed only for sleeping and sex

You don’t want to condition yourself to associate your bed with any activities other than sleeping. Also, if you’re unable to fall asleep or fall back asleep after 30 minutes, get out of bed and do something that is non-stimulating and does not involve electronic devices. When you feel sleepy, go back to bed and try again.

Don’t try too hard

When it’s time for bed, don’t try too hard to fall asleep. If you focus on the fact that you aren’t able to sleep, count the hours left in the night, or fixate on all of the things that you need to do the next day, stress and anxiety will prevent you from relaxing and will keep you awake even longer.

Inspect your bedroom

  1. Ensure that your mattress has the right firmness for your comfort.
  2. Ensure that your pillow supports your neck sufficiently.
  3. Use blackout curtains in your bedroom.
  4. Remove all artificial lights and electronic devices from your bedroom.

This will also prevent you from looking at the clock when you’re having trouble sleeping in the middle of the night. Checking the time when you can’t sleep can stress you out and keep you awake.

Ensure that the temperature is optimal

The optimal temperature for sleeping is different for everyone, but falls within the range of 62 to 72 degrees F.4 The bedroom should feel slightly cool and comfortable.

Create a bedtime routine and start getting ready 2 – 3 hours before bedtime

Take a hot bath or shower

Taking a nice hot bath or shower will relax you, but doing so within 2 hours prior to bedtime will keep you awake.

Write down your stressors and plans

As our bodies relax, our minds tend to wander and fixate on past mistakes, present stressors, and future plans. So 2 to 3 hours before bedtime, sit down with a pen and paper and write down your concerns, ideas, and to-do lists. Then set them aside so that you don’t have to worry about them until the next day.

Turn off lights and electronic devices before bedtime

At least 1 hour prior to bedtime, turn off all electronic devices. It is also preferable to turn off all of the lights. At the very least, dim the lights or use candlelight. Research also shows that wearing amber lenses in the evening can be effective at blocking blue light and improving sleep quality.5 Furthermore, keep all lights and devices turned off if you wake up in the middle of the night and are unable to fall back asleep. Just be very careful making your way to and using the bathroom in the dark.

Have a warm beverage

Drink a cup of warm milk before bed, because it contains tryptophan, an amino acid that promotes sleep. Alternatively, a naturopath recommended drinking a cup of herbal tea (e.g. chamomile flowers, lemon balm, or tulsi/holy basil) within 30 minutes to one hour before bed. If you are taking any medications, speak to your doctor and/or pharmacist to ensure that your herbal teas won’t interact with your drugs.

Take a magnesium supplement

Taking magnesium 30 minutes to one hour prior to bed may help with sleep disturbances. Consult your doctor and/or pharmacist to determine your proper dosage and to ensure that it won’t interact with any of your medications.

Wash your face and brush your teeth 1 hour prior to going to bed

Washing my face and brushing my teeth, especially when done with the lights on, tends to invigorate me, so I do these before I really start to wind down.

Engage in a relaxing activity

The goal of your night routine is to unwind your mind and relax your body before bedtime. Try a non-stimulating activity such as meditation, gentle yoga or stretching, colouring, or reading a boring book or magazine.

I still struggle with fatigue and sleep some days, but I’m confident that if I consistently practice these good habits, high quality sleep will soon come easily.


Alison suffered a concussion in 2013 that completely changed her lifestyle. She is finding her way back to her old self and still loves traveling, dogs, cooking, and helping others. She hopes to help other brain injury survivors and their caregivers by sharing her experience and by spreading awareness.

 

 

References

Holzman DC. What’s in a Color? The Unique Human Health Effects of Blue Light.Environmental Health Perspectives. 2010;118(1):A22-

Burkhart K and Phelps JR. Amber lenses to block blue light and improve sleep: a randomized trial. Chronobiology International. 2009;26(8);1602-1612.

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Planned structure: why it’s important post-ABI + 8 tips getting started

BY: CELIA M

One of the many things we lose during recovery from an ABI is structure in our day-to-day routines.

daily-routine-quote-john-c-maxwell
PHOTO: RESILIENTISTA.COM

While rehab and specialist appointments may maintain a facsimile of structure to your day or week, what are you doing with the rest of your time?  Have you fallen into a routine of sleeping the morning away, followed by an afternoon marathon of talk shows, soaps and game shows? Does your wardrobe consist of pajamas or sweat pants? By supper time do you start thinking about all the ‘things’ you should have done – only now you are beyond tired, and you remember you didn’t really eat anything (does a chocolate and left over pizza count?), and you’re now counting down the time until you move from your sofa to your bed – only to start the cycle again tomorrow? Unless of course there is a medical appointment you need to attend.

This type of day I call unplanned structurein the early days of recovery you went from bed to medical/rehab appointments and back to bed, because that’s all your body and brain could handle. Over time, this became unplanned structure, as it was easier to do nothing than to think and make a decision about how you were going to carry out an activity, which may take more planning now than before you acquired a brain injury.

Know, I’m not judging. I‘ve lived this, but I’m here to let you in on a little secret – planned structure is key to getting back to adding more fun and enjoyment into your day.

For many people the word structure can conjure up visons of rigidity, being controlled, or being stuck in a boring routine. But structure can be a very powerful tool to help you get back to functioning on a regular basis and enjoying life. When you have structure in your life you know ‘what’s next’, which enables you to get on with your day. As ABI-survivors we can use up valuable energy trying to figure out what to do next. We might not do anything because we can’t decide or figure out what to do.

In the early years of recovery from ABI, I too was against structure, just ask my rehab girl Catherine. My reasoning was that I couldn’t predict what my energy level was going to be on any given day, so why plan anything? This left me doing nothing most of the time.

I also wanted to feel like I had control over my own day. Boy, was I wrong! When I finally gave planning structure a try – with the caveat that it was OK to re-schedule an activity if I didn’t have the energy for it (without guilt, or feeling like a failure) – it was such a liberating feeling!

Planned structure became my ticket to freedom, independence and a sense of accomplishment. Knowing what came next in my day helped reduce my daily struggle with anxiety and stress. I made sure there was always built in rest time between activities, and the more I repeated an activity on a regular basis the more it became a habit. My brain started to automatically know ‘what’s next’, and before I knew it I was doing my morning grooming without having to stop and think about it.

I’m not going to sugar coat it – it takes time, and some things will continue to need to be written down (that is a post for another day) but, know that each small step (no matter how trivial and small it may seem) will get you to where you want to be, living life to its fullest no matter what your new abilities may be.

When our food, exercise and sleep patterns are consistent our body and brain function better. This makes it possible to enjoy not only the tasks we need to do but to enjoy activities we like and try new activities too.

small-changes-in-daily-routine-quote-sharif-nor
PHOTO:  QUOTE BY SHARIFAH NOR

Benefits of structure

  • You know ‘what’s next’ and don’t waste energy thinking about what to do next
  • You habituate a new task or behavior
  • Automates activities in your day
  • You feel more in control being able to enjoy  your day and your life

Eight tips that helped me add planned structure into my day that included activities to make my day and life more enjoyable

  • A regular wake up time
  • Morning rituals to prepare for the day ahead (showering, dressing, breakfast etc.)
  • Fitness activities (walking, stretching, gym, yoga etc.)
  • Meal times
  • Leisure time (hobbies, ‘you’ time, a nap, etc.)
  • Time with family and friends
  • Evening rituals to prepare your mind and body for rest (unplug from computers, television 1-2 hours before your bedtime;  read a book, have a bath, meditate/pray, etc.)
  • A regular bedtime

NOTE: there will be times where you will need to add your daily structured planned activities around your medical / rehab needs, and there will be times that you will be able to add your medical rehab appointments around the things you enjoy in life. With patience and time you will find balance between the two – this is when the magic of planned structure happens.

excellence-is-not-an-act-but-a-habit-quote-aristotle
PHOTO: RESILIENTISTA.COM

Bonus Tips

  • Allow for flexibility, especially on days you find your energy supply low
  • Its ok to add/remove activities as your likes change
  • Seek the help of a rehab team member, friend/family member, or psychologist in creating your daily structured plan if you are not sure how to get started.

Today, I have more enjoyment in my days and life in general because; I have created a daily structured plan that works for me.  I encourage you to give adding structure to your day a chance. And let’s not tell Catherine that she was right about structure, that will be our little secret. ☺

Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; Self-care advocate; Lifestyle writer/blogger.  In 2016 Celia launched the website Resilientista to inspire women to put themselves in their day, practice self-care on the daily and live their version of a High Heeled Life. Learn more about Celia and be inspired: visit http://www.HighHeeledLife.com or http://www.Resilientista.com

We love Celia! You can catch her at our next Community  Meeting on October 24th, where she’ll help us put inspiration into action at an Inspiration Board workshop

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.

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.

Will new research help treat excessive sleepiness post TBI?

BY: Sophia Voumvakis

In May 2011, I sustained a traumatic brain injury (TBI). My TBI left me with a number of physical,cognitive, and emotional deficits. Working with an occupational therapist, we were able to identify these deficits develop a number of strategies to help me compensate for them. I will be eternally grateful for the help I received from a compassionate and eminently capable occupational therapist.

photo credit: 3/365 - Self Portrait for 365X3 via photopin (license)
photo credit: 3/365 – Self Portrait for 365X3 via photopin (license)

The one deficit that I have found the most difficult to accept is my need for more sleep. My two-hour afternoon rest period, actually, a nap, is sacrosanct. I am unable to function without it. This nap is in addition to a good nine hours of sleep a night, much more than I needed before my injury. My need for more sleep has made a huge dent in the number of productive hours I have in a day.

Whether the TBI is mild or severe, at least 25 per cent of patients experience some disturbance in sleep and/or level of daytime arousal following their injury. These symptoms can impact recovery and contribute to disability.

Most doctors will tell you that increased need for sleep arises because it takes time for the brain to heal; even a mild concussion can disrupt neural fibres and that mental activity may take much more effort following such an injury.

photo credit: Cat Naps via photopin (license)
photo credit: Cat Naps via photopin (license)

I recently came across an article by Dr.Barbara Schildkrout where she discusses new research in pleiosomnia, the need for an unusual amount of sleep in a 24- hour period. This research may point to new treatment approaches for this common symptom of TBI.

Schildkrout discusses the findings of two research studies which draw attention to the fact that injury of the hypothalamus is common in TBI. The posterior nucleus of the hypothalamus which contains histaminergic neurons is most affected by injury. Histaminergic neurons are part of a the body’s system which control wakefulness. The researchers suggest that a consequence of shearing forces at the point where the hypothalamus and the midbrain meet during head trauma is the loss of histaminergic neurons.

The research also identifies a less substantial but still significant loss of hypocretin/orexin neurons and melanin-concentrating hormone (MCH) cells in the hypothalamus. Scientists know that these types of neurons and hormones are involved in regulating arousal and sleep. In individuals with narcolepsy (frequent and excessive sleepiness) the hypocretin/orexin neurons are deficient or absent. MCH neurons are involved in both REM and non-REM sleep and are thought to promote sleep

The authors suggest that their findings point to a new approach for treating post-TBI patients who experience the need for extra sleep. Drugs which increase histamine signalling to the brain may prove helpful in the management of excessive sleepiness in TBI survivors. One such drug, Pitolisant, is being tried with some success in patients with narcolepsy and might prove helpful to TBI survivors, who like me, suffer from excessive sleepiness.

In my life before my TBI, I was a researcher. I had a passion for conducting both primary and secondary research and then communicating the results of that research in an accessible way. I hope that this is what I’ve done here, and I hope to do more of it in the future. Now, it’s time for my nap!

Since her TBI in 2011 Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.