Tuesday, February 12, 2019

Delayed Sleep Phase Syndrome and PDA



What is DSPS?
DSPS (Delayed Sleep Phase Syndrome); also sometimes called DSPD, and DSWPD (Delayed Sleep-Wake Phase Disorder), is a circadian rhythm sleep disorder which causes an individual's sleep-wake cycle to be significantly later than the social norm. An individual's sleep delay may be anything from a few hours later than society's average (for example, sleeping from midnight until 8AM) to – in very extreme cases – over twelve hours later (e.g., sleeping from midday until 8PM).




It is common also for DSPSers to need more than eight hours sleep per "night", causing their natural wake times to be even later than might be expected following their already delayed sleep times.

Additionally, DSPSers commonly experience extended sleep inertia, whereby our brains are slow to fully wake. Sleep inertia may last from one hour to several hours. During this time, the individual will feel groggy, verbally limited, and clumsy. As well as causing sleep-deprivation, being woken before the circadian clock's wake time, for example for school or work, can exacerbate sleep inertia.

Sleep-deprivation caused by trying to fit society's time schedule can result in major health issues, including cancer, fibromyalgia, diabetes and heart disease. On a personal level, ongoing sleep deprivation caused me to develop long-term chronic fatigue syndrome and a major autoimmune disorder, which nearly killed my newborn baby when my bad antibodies passed to her. So, the common mythconception that it's healthy to force oneself up early every morning is very incorrect.

What causes DSPS?
DSPS is caused by the body's internal clock, not by insomnia; lack of self-discipline; poor sleep hygiene; anxiety; or other psychological issues: although this is not to say that these things cannot exacerbate circadian rhythm-rooted sleep delay.


DSPS as a Neurological Condition
Although circadian clocks exist within every body cell, DSPS can be thought of as neurologically-rooted (like ASD, PDA, and ADHD), as the master clock coordinating these cellular clocks is located within the brain.

Co-occurrence with other neurologically-rooted conditions
There are definite, scientifically proven links between circadian rhythm sleep disorders and more clearly neurologically-rooted conditions, such as ADHD and autism. For example, Dr Alexander Nesbitt, Guy's Hospital neurologist, writes  "well-known co-associations exist between DSWPD and neurodevelopmental disorders such as attention deficit hyperactivity disorder (ADHD) and autistic spectrum disorder (ASD)... Patients with ASD have a high incidence of sleep disorders, including circadian rhythm sleep wake disorders, of which DSWPD is the most common phenotype." (Nesbitt A, "Delayed Sleep-Wake Phase Disorder" © 2018 Journal of Thoracic Disease. All rights reserved. Link to full article )

Co-occurrence of DSPS and PDA
Although I am aware of no formal research into the co-occurrence of DSPS with PDA, I gathered comparative data of sleep problems reported by neurotypicals, non-PDA autistics and PDA adults as part of an informal study I carried out in 2016. This data suggests that PDA adults experience more sleep issues than the other neurogroups included in the study (please see the bar chart below). Although the precise nature of sleep problems was not queried, Nesbitt, (quoted above) similarly cites instances of unspecified ASD sleep disorders. Further, I have encountered large numbers of PDA adults, and parents of PDA children reporting co-occurring DSPS. It therefore seems probable that the DSPS has high co-occurence with PDA.


On top of DSPS, my PDA demand avoidance causes me to want to avoid going to bed and getting up. Anxiety has also caused me to be insomniac, but I have learned to manage this so anxiety-induced-insomnia is no longer a factor.


Living with DSPS 
I have experienced severe sleep delay since early childhood. I clearly remember the trauma I had every night lying in bed unable to get to sleep; and being terrified that monsters would get me; even that I'd never wake up if I did go to sleep. Yes, there was high anxiety there, but this alone did not account for my inability to get to sleep quickly at night even if – as I invariably was – I was extremely sleep-deprived and tired. As a younger child, I would often scream in genuine terror, and my mother or step-father would come to soothe me, even take me to sleep in their bed. I felt safer then; but they grew impatient with this, and decided I had to learn to sleep on my own. All I though learned was to pretend I was asleep if came to check on me so they wouldn't be cross.

When not overcome by terror, I was excruciatingly bored. I would blur my eyes looking at the streetlight outside my bedroom window to produce optical effects (there were no distracting smartphones around in those days). I also had a travel alarm clock with luminous dots on its face and hands. I liked their pretty blue-green colour, but realising the creeping lateness of the hour caused me additional anxiety too; and besides, the luminosity wore off before long, and the streetlight went off at around 1AM, leaving me awake in the dark with nothing but my imagination for company and, on good nights, our cat. My PDA propensity for fantasy was my saviour here: as well as conjuring a whole host of terrifying imaginary monsters, my creative PDA brain was adept at inventing vivid soap opera-style serial daydreams, of which I was the glittering and popular star. These "life dream" soap stories helped me wile away countless sleepless hours.

Once finally asleep, however, I wanted to stay that way; or at least until I'd had enough sleep time for my body and brain's needs. However, there was school to go to and my parents would demand I got up for it. Their efforts to break my sleep felt exactly like physical assault. My brain and body screamed that I had to sleep. My bed – such hostile territory five hours before when I couldn't get to sleep – was now indescribably comfortable and warm. It was my blessed cocoon, and my parents' insistence that I leave it, and force myself to function in the waking world felt compassionless, unfair and aggressive. It would have been easier if I'd enjoyed school even slightly, but school was a whole other circle of Hell for me and the prospect of losing the sleep I craved in order to be imprisoned, humilated and bullied at school had less than zero appeal for me. Weekends were something of a reprieve, but my mother was convinced I was wasting the day away if I wasn't up by nine-thirty and harassed and guilt tripped me relentlessly to get up and embrace life. She was not the sort of mother who listened if I told her I'd not been able to get to sleep until two or three AM.


Once, reluctantly, out of bed, I felt like Hell on Earth. My whole body was in pain; my brain felt scoured by barbed wire and light assaulted my eyes like a torture device. On top of all this, I had extreme sleep inertia (as described above), so I could not properly form thoughts or words. I deeply resented having been forced out of bed and every part of our morning routine. It was during these times that I was most likely to go into what is thought of as classic PDA meltdown. I remember many occasions when, after a family member had encroached on my space before school, I would react defensively without really being aware of what I'd said or done and they would react back with high horse outrage at my extreme and unmerited bad temper. This just made me feel even more shit: I was a thoroughly bad, totally unacceptable misfit, and the world's expectations of me were completely out of synch with what I could comfortably give.

So off I'd go to school... well, to be honest, I would do everything in my creative power to avoid going to school and get back into bed. As a younger child, as crying and begging didn't work, the only available option was to feign being ill. I learned that the best illnesses to claim were head and stomach aches, as they entailed no external symptoms ofor my mother to call me out for not having. I also sometimes rubbed my forehead rapidly with my hand before she came in the room to make it feel fever-hot. She called me out once when I said I had a really sore throat and took me to the doctors, but – to her horror – he said I had mumps and both myself and my brother had to be quarantined at home for several weeks. My agonisingly swollen throat was so worth it for the uninterrupted sleep time it gifted me (and the fact that my mother never dared question my ill health stories again!) If, however, my mother sent me to school regardless of whatever "bad tummy" or headache" I'd claimed, I would tell my teacher that I was feeling really ill and try to wangle being sent home to bed. When older, I extended my school avoidance repertoire to sick note forging, but this is another story.

I have not spoken to a single DSPS adult who has not reported having experienced extreme prejudice and discrimination for their delayed circadian rhythm. From closest family, to friends, bosses, teachers and health professionals, the prevailing attitude is that sleeping and waking late is a slovenly habit meriting zero respect or accommodation. We are often offered deeply patronising advice, such as, "have you tried lavender oil?" For those of us who have endured living with an inability to wake refreshed to meet society's morning-centric timetable, and the accompanying agony of drastically reduced sleep, being patronised by morning chronotypes assuming that, just because they and many others can sleep before midnight, then we can too, but we obviously haven't really tried: well, this is non-empathy to an extreme degree. Of course we have tried. How many hours have we been gifted to lie wide awake in the dark racking our brains for solutions? How many exhausted daytimes have we spent seeking pointers to reduce our sleep delay?!

And then there is the discrimination: from school & work having early morning starts, to hospitals demanding 7:30AM arrivals; to hotels charging guests extra for late checkout, the world is geared for those we night owls call "daywalkers".

Curing DSPS?
There is no known cure for circadian rhythm sleep disorders like DSPS.

While co-occurring insomnia may be eased by the following techniques, DSPS itself is not remedied:
  • Improving sleep hygiene does not cure DSPS
  • Cutting out caffeine does not cure DSPS
  • Sleeping pills do not cure DSPS
  • Reducing anxiety does not cure DSPS
  • Getting up early every day merely increases sleep-deprivation (which, as we have seen, can cause life-threatening health repercussions).
Some (but by no means all) DSPSers report varying degrees of success using the following treatments:
I personally take 0.5mg about 3 hours before my last natural sleep time, and – while the effect took a month to kick in – it causes me to sleep and wake on average two hours earlier.

Scientific studies have shown that, while melatonin doses of 1mg+ work as a temporary sedative, the circadian rhythm is more likely to shift earlier if microdose quantities of melatonin (0.5mg or less) are taken several hours before sleep time.

After having had my lifelong DSPS diagnosed by the UK NHS a few years ago, I requested a prescription of 0.5mg melatonin, only to be told the NHS will not prescribe doses below 3mg (which seems insane!) I tried using liquid melatonin, but found this ineffective (this seemed to be because the process of stabilising it in liquid form alters it in some way). I have since resorted to importing 1mg tablets and cutting them in half with a pill cutter.



Concerns about giving melatonin to children
While UK pediatricians commonly prescribe melatonin in doses of 3mg+ to children (one parent told me their child had been prescribed a 10mg dose!), I am concerned about this practice, not just because it disregards the solid scientific evidence for "less is more" with melatonin, but because of additional evidence that:
The importance of empathy and respect
As we have seen, while DSPS is not curable, treatments may not work, and our health becomes tattered through chronic sleep deprivation, we are subjected to massive prejudice and society-level discrimination.

A little empathy, however, goes a long way. It is perhaps beyond our immediate power to alter society's timetables to cater for night owl schedules, but we can choose to treat DSPSers with respect and make accommodations where possible.

I have had a lot of success in negotiating with hospitals to schedule later admission times for me, and my daughter's school accommodates my DSPS by setting afternoon parent/teacher meetings; however, I have found that people are more likely to respect my need to avoid morning appointments if I cite my chronic fatigue syndrome as the reason. Describing DSPS tends to result in rolled eyes and an attitude of "that's not a valid excuse."

I am lucky enough to be able to sleep to my natural, delayed schedule. My partner realised the reality of my DSPS after reading this Q&A published by the Circadian Sleep Disorders Network, and kindly volunteered to get our daughter up every morning so that I can get enough sleep. I have struggled with a lot of guilt and shame over not being there for her in the mornings, but there is no other way for me to maintain my health. Since having been enabled in this way to sleep for enough hours, the urticaria I developed when sleep deprived vanished, and my chronic fatigue is much more manageable (but still there).

I conclusion, I would like to say, please respect the reality of DSPS. It is not a choice and it cannot be removed through any amount of discipline and determination: just as autism and PDA do not go away for the convenience of others. If a child has a severe struggle with school because of their delayed sleep phase, then please do not persist in believing that it's their sleep that must change to accommodate the world: perhaps their world must change to accommodate their sleep, and, for example, your child and their school must part ways?







8 comments:

  1. My son isn’t formally diagnosed but clearly has this; I’m trying very hard to support him but as I also have another son without the condition, I have to cater for both which is exhausting. Thank you for the insight.

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    1. This does sound exhausting. We all of us need sleep (including you). Your empathy though for your boy's DSPS will, I believe, be a huge support for him

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  2. I am SO glad someone pointed me in the direction of your article, it sounds like this is what my oldest son has. I too like Fiona above have another son without the condition. Thank you for sharing your experiences, they are very enlightening to parents like us and now I have some insight as to what he might be going through I feel really bad at trying to make him get up, but now understand and sympathise with him. Where do you get your Melatonin from?

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  3. Hello Angela, I am glad this article has helped you understand your son's late sleep-wake schedule better :) Living in England, I have resorted to importing 1mg melatonin tablets from European EBay sellers and using a Boots pill cutter (costs a few £s) to split them in half.

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  4. I am so glad you said there is no cure. I was paid by H I H 40 years ago to be studied and was studied at U of MD. I was studied for months by Dr. Norman Rosenthal, who coined S A D. People, go to a university or clinical trial at a hospital and stop wasting time listening to everybody's theory...you may screw yourself up or delay your children's diagnosis. I am 80 years old and have studied this long enough!!!!Give it up and adjust to this disability.....be grateful.....they used to lock us up!!!! (At least we
    had company!)

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  5. Many thanks, very helpful article - I have DSPS, since childhood, discovered it has a name a few yrs ago (aged 46) and aged 48 was at last identified and diagnosed with Aspergers and ADHD, but hadn't heard of DSPS being commonly connected. Also haven't come across PDA until this article but I will look it up. And thank you I've been trying to find fairly concise and comprehensive info to help my Dad understand, so will be sending him the link to this article.
    Blessings all.

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  6. Thank you for this wonderfully inciteful article. I'd like to try microdosing melatonin. Where can I find more information about it?

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    1. Hi RahK this is the information I have saved on file: WHY MICRODOSING MELATONIN CAN BE EFFECTIVE (AND WHY LARGER DOSES CAN ACTUALLY MAKE SLEEP DELAY WORSE)

      Edited from comments made by James Fadden, Vice President of Circadian Sleep Disorders Network

      There are basically two ways to take melatonin.

      Method #1. Take a *very* small dose several hours before bedtime. The best dose and time is around 0.25 to .5 mg around 6-8 hours before bedtime. You don't have to be very precise on either the exact dose (but no more than 0.5 mg) or the timing (any time between 3 and 8 hours before your current bedtime is ok.)

      This method might seem like it is doing nothing at first. But if you keep it up, it can slowly shift the time you fall asleep. It often takes many days or weeks for this to happen so you have to be patient.

      There is less data on the proper time to take timed-release melatonin but in theory it should be taken even earlier than immediate release melatonin, so probably 6 or more hours before current bedtime. Timed release melatonin could be effective if taken early enough. One complication is that cutting up timed release melatonin can sometimes cause it to release faster,

      Method #2. Take a large dose at bedtime or up to 1 hour before bedtime. (Anything above 1 mg is a large dose. 9 mg is very large.) This produces an immediate sedative effect which can help you fall asleep.

      This method works for some people but there are several problems:

      1) melatonin is not a very powerful sedative. It is weak compared to most sleeping pills.

      2) you often get used to (develop tolerance) to large doses and they gradually lose effectiveness. So you have to take more and more to get an effect.

      3) there is often a rebound effect so you sleep a few hours and then wake up.

      The causes are a bit technical, but such large doses mean melatonin is still present in your body the next morning. In the long run this presence of melatonin in the body in the morning can cause your sleep time to drift later and later. So you might find melatonin helps at first but you are worse off in the long run. You find yourself falling asleep later, not earlier.

      Experts who have treated patients using melatonin have often found that rather than increasing the dose, the best strategy when melatonin stops working is to try a lower dose. It sound paradoxical but it often works.

      Finally, it must be said that melatonin is not effective for everyone. If you find you don't get results from either a small or large dose then melatonin may not work for you. But taking larger and larger doses to try to make it work is rarely a winning strategy.

      About James Fadden: I have had sleep problems since childhood which later turned into DSPS and then N24 at a time when doctors did not know anything about these disorders. These disorders had a major negative effect on my life so I set about learning everything I could about circadian rhythms and sleep, over many decades. I have copies of literally thousands of articles (paper and pdf) on the topic. It helped that I had a strong background in science (biochemistry degree with high honors from Harvard, including neurology classes at the medical school). My sleep is still horrible but at least I understand better why it is so bad. (Sad but true!)

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