Non-24-Hour Sleep-Wake Disorder: when night and day keep changing

I was diagnosed with Non-24-Hour Sleep-Wake Disorder (N24) in 2010. N24 is one of the circadian rhythm disorders (CRD). The circadian rhythm (or ‘body clock’) is the process by which our bodies tell the time – when it’s dark, the pineal gland of the brain produces the hormone melatonin which signals to the rest of the body it’s time to sleep. Production of melatonin stops when it gets light.

N24 is a condition in which the circadian rhythm fails to synchronise (‘entrain’) to the 24-hour day. The symptoms of this can either be progressively worsening daytime exhaustion and night-time insomnia, or progressively delaying sleep and waking times – one day you’ll fall asleep at 2am, then the next 4am, then 6am, 8am and so on until you’re back to 4am. In very rare cases, the sleep and wake times get earlier each day. Nobody knows how many people have N24, but it is very rare. It took a team of researchers [1] 10 years to find 57 cases. N24 was first discovered in 1971 and is “extremely debilitating in that it is incompatible with most social and professional obligations” [3].

The images below illustrate N24 compared to an average sleep pattern.

Something’s not right – the journey to diagnosis
I was diagnosed in 2010 when I was 22 years old, but telltale symptoms had started long before then. When I was born, my mother remembers telling our health visitor that I was sleeping in very unusual patterns. At secondary school I was often lethargic and irritable and had trouble going to sleep and waking up – symptoms consistent with a CRD. It wasn’t until I was 16 that the N24 symptoms became obvious. I would have periods where I missed college almost every day because I wasn’t waking up, no matter what I tried. I even slept through some of my A-Level exams. My academic performance and attendance dropped significantly. I went to my GP who was sympathetic, but said they couldn’t do anything and I was ‘just a teenager’.

After my A-levels, I then went to University where I coped a lot better. Attendance at lectures and seminars wasn’t compulsory, and I could work in my own time to my own schedule and I did very well. There was occasional trouble dealing with exams, and I sought help from my University GP with this; this time, however, I was ‘just a student’ who ‘probably partied too much’ and was sent away with a leaflet on sleep hygiene.

It wasn’t until my Masters course that things completely fell apart. Attendance on one particular unit was compulsory and if I missed 5 events in the year, I’d fail my degree. A few months into the course, I was making ridiculous excuses for my absence and the University were close to removing me from the course. I went to yet another new GP, but this time I was picky. From my education, I knew what circadian rhythms were and chose a GP who had specialised in travel medicine – particularly jet lag, the circadian rhythm disturbance caused by travel. He prescribed a book on cognitive therapy for sleep which I unsuccessfully finished, but I then noticed the appendix – a checklist of symptoms for CRDs. I went back to my GP with graphs of my sleep times and was referred to a sleep clinic and diagnosed almost immediately, as if it were obvious! To be diagnosed after 7 years of dismissal was an incredible relief.

3. Actigraphy monitors movements for an extended period of time and is the key medical test for N24. Flatter areas represent episodes of sleep. My results from 2010.

Round holes, square pegs – treatment and coping with CRDs

CRDs, particularly N24 (in sighted people), are very difficult to cure. In the rare circumstance we can be entrained to a 24-hour day, the treatment is often too draconian to be worthwhile. Otherwise, treatment focuses entirely on symptoms – occasional stimulants to help us stay awake, occasional sedatives to help us sleep.

Unfortunately, there are long-term consequences for not following your circadian rhythm aside from the immediate symptoms (which are like the jet lag you would get if you appeared on the other side of the world). Circadian dysrhythmia (disruption to the circadian rhythm) is associated with various cancers, diabetes, and heart disease and so on. If N24 patients tried to live normal lives, we would significantly shorten our lives, on top of the difficulty of the immediate symptoms.

Much of coping with N24 means accepting we won’t be able to function in the same way as others and adapting to this. Employers can help with flexible work hours or allowing working from home when appropriate, as can schools and universities. In fact, there is a growing movement supporting later school starting times in general, in part due to the fact that most teenagers’ circadian rhythms are delayed compared to adults. Our friends can help by forgiving us for being late or missing events, or just needing to sleep.

There’s one key theme running through everything that can help people with N24: awareness. From the doctors who, throughout their education, have never heard of circadian rhythms to getting adjustments from employers, from getting prompt diagnoses to our friends and family giving us a little leeway; it all comes from a place of understanding and awareness.

Learn more about N24 and other CRDs at http://www.circadiansleepdisorders.org/

[1] http://www.journalsleep.org/ViewAbstract.aspx?pid=26193

[2] http://www.ncbi.nlm.nih.gov/pubmed/5548010

[3] http://www.nejm.org/doi/full/10.1056/NEJM199212103272417

About Jonathan

Jonathan is an eclectic independent researcher and political activist focusing on sleep disorders and social security and can be found at his personal twitter account at @IamMrJ