I have not slept in years
Mrs W was a middle-aged housewife who was referred to a community mental health team for assessment following an uncharacteristic outburst of anger towards her GP. She had been coming to the GP regularly with a complaint of complete sleeplessness for several years. The problem started with the birth of her third child, who had reflux and was niggly and unsettled at night. He required regular attention and Mrs W found that she became increasingly hypervigilant and anxious, wondering when he would wake up, whether she would be able to settle him and also worrying that he would wake the other children in the house. By the time the baby was four months old she felt ‘completely incapable of sleeping’ and her long periods of sleeplessness had damaged the sleep centres of her brain. Her lack of sleep left her feeling exhausted and irritable during the day, but even when she had the chance to lie down and rest she was unable to sleep. She went to the GP who was reluctant to prescribe a hypnotic, as she was still breastfeeding. He gave her sleep hygiene advice and reassured her that by following this advice, and giving herself some time, her sleep would settle down again.
1 What is sleep hygiene and how does it work?
2 Was the GP correct?
3 What is her diagnosis?
4 How would you treat paradoxical insomnia?
1. What is sleep hygiene and how does it work?
Sleep hygiene is a term used to describe the common-sense lifestyle factors that are thought to affect sleep. It includes things such as avoiding all caffeine after 4 p.m., taking exercise, having a warm bath in the evening, ensuring the room is dark and quiet, etc. It is probably the most widely distributed advice to insomnia patients, but actually the evidence is that when taken on its own it does not work! In fact, the results of sleep hygiene interventions are so disappointing that it is often used as the placebo in insomnia treatment studies. There is insufficient evidence to say with any certainty whether it confers any benefit when combined with other techniques. Despite this, it is routinely included in cognitive behaviour therapy (CBT) for insomnia treatment programmes. To some extent this is because sleep hygiene is so entrenched in the insomnia treatment culture that it is almost expected as part of any treatment package. It is also thought that if patients get their sleep hygiene very wrong, it will make it harder for the effective techniques to work. Finally, anecdotally some patients do derive benefit from the sleep hygiene advice.
Mrs W followed the sleep hygiene rules strictly, cutting out all caffeine after lunch, avoiding alcohol, walking 6 km every morning, having a warm bath every night and meditating for 10 minutes before going to bed. She found it made no difference whatsoever, which further strengthened her conviction that her insomnia was not due to lifestyle or psychological factors, but was rather due to an underlying organic disorder.
She returned to the GP insisting that he prescribe hypnotics. She had by now stopped breastfeeding, but the GP was concerned that she still needed to be alert enough to attend to her children at night. He therefore prescribed 10 mg of Amitriptyline, but Mrs W said this did not improve her sleep at all and it made her feel ‘like a zombie’ the next day. This is unfortunately a common side effect of the sedative antidepressants, which tend to have a long half-life and therefore lead to significant daytime sedation. Her husband, who had been working on an oil rig, left his job and moved into a nine-to-five office-based job so he could help his wife cope and spend more time with the children. Now that he was going to be home at night, the GP agreed to prescribe hypnotics. He tried temazepam, zopiclone and zolpidem, but Mrs W insisted that she didn’t sleep at all on these pills, even when she took three or four at a time. This raised her anxiety further and she demanded to be referred to a sleep clinic. The GP made the referral but it was rejected, as the local sleep clinics did not treat insomnia.
Mrs W struggled with her insomnia for a further 13 months. She said she went to bed at 11 p.m. sharp every night and turned the lights out at around 11.15 when her husband fell asleep. She would lie there in the dark with her eyes closed trying to sleep until the alarm went off at 7 a.m. She didn’t feel that she slept at all during this time. She would only occasionally get out of bed to go to the toilet or to attend to her child, who by now was usually sleeping through. She went back to the GP to ask for another referral to a sleep clinic and saw a locum who had not met her before. When she explained that she had not slept at all for at least a year and a half he told her she must have been sleeping or she would have been dead.
2. Was the GP correct?
Yes, although humans can go for several days at a time without sleep, total sleep deprivation in animal experiments was rapidly fatal.
Mrs W was incensed by the doctor’s response, became verbally aggressive and threw a box of tissues against the wall before storming out of the surgery. The GP referred her to the community mental health team for a psychiatric review, but they confirmed that, aside from the insomnia, there was no sign of any psychiatric disorder. They referred her to the insomnia clinic and discharged her.
When we saw her in the insomnia clinic we were faced with a difficult dilemma. The GP was correct in saying she must have been getting some sleep. However, Mrs W was clearly not going to believe that and if we told her the same, we might risk permanently damaging the therapeutic relationship. We therefore explained to her that she was clearly not getting enough sleep, as evidenced by the fact that she was feeling tired and irritable during the day. We explained that some people do have very brief, broken episodes of sleep which they will not necessarily be subjectively aware of. We then broached the possibility that this may be the case for her, but that whether it was or not, we still felt she had an insomnia that needed treating. She was adamant that we were wrong, but was willing to engage with us, as we promised to fully investigate and treat her insomnia.
We asked her first of all to keep a sleep diary to record her times in bed. She recorded a very regular bedtime of 11 p.m., but as the diary was done during the school holidays, her rising time was very variable, ranging from 7 a.m. to 11 a.m. She reported no sleep during the two weeks that she kept the diary. She insisted she needed a brain scan, but we explained that this was unlikely to tell us anything useful. We did, however, refer her for an overnight polysomnogram. This showed a total sleep time of 6 hours 22 minutes! She fell asleep after 46 minutes, spent little time in deep slow wave sleep and had 16 awakenings during the night. Her wakefulness after sleep onset was 52 minutes.
3. What is her diagnosis?
Mrs W clearly has sleep initiation and sleep maintenance insomnia, and this explains her daytime tiredness. But what is most striking is that despite this, she is actually getting a significant amount of sleep. She therefore has paradoxical insomnia or sleep state misperception—she is asleep without being aware that she is asleep. This is not at all uncommon in insomnia patients, who frequently significantly underestimate their TST. This is probably because patients with insomnia self-monitor a great deal. They are constantly monitoring whether they are awake or asleep, whether they are feeling sleepy, etc. As a result, they will be more aware of their awakenings, noises and other external stimuli, and will remember them the next morning. Good sleepers may also wake several times a night, hear noises, etc., but as they are not self-monitoring they do not remember it the next day. The insomniac presumes that because they were aware of these things they must have been awake and will mentally string the moments of awareness together, thus perceiving themselves to have been awake for extended periods.
Indeed, there are cases of pure paradoxical insomnia where people will objectively sleep very well but believe they have not slept at all. They may not have daytime symptoms, but are extremely distressed by their perceived lack of sleep. This sleep state misperception can sometimes be extremely resistant to treatment and patients can remain convinced of their sleeplessness even in the face of clear objective evidence to the contrary. However, as many patients can have genuine insomnia and sleep state misperception, one should not dismiss patients who report that they do not sleep at all without fully investigating them.
Mrs W received a copy of her polysomnogram report in the mail prior to her follow-up appointment and called the clinic to say she was insulted by the report and demanded an explanation. We showed her the full polysomnogram report, and explained in detail how the polysomnogram was scored and that there was no doubt that she had slept for a significant period of time. We explained the diagnosis of paradoxical insomnia and how we think it develops. Once again, we stressed that she did also have genuine insomnia, that we took her concerns seriously and that we intended to treat her.
4. How would you treat paradoxical insomnia?
This is an area that has not been particularly well researched. As a rule, the treatment tends to be the same as for any other insomnia complaint, i.e. hypnotics and/or CBT for insomnia. Showing the patient their polysomnogram results can be therapeutic for many patients and is sufficient to reassure them that they are sleeping. If this is not sufficient, it can sometimes be very helpful to show the patient the raw tracing of their polysomnogram and for the technician to score the polysomnogram with the patient. This obviously involves showing them how to differentiate between the waking EEG and the sleep EEG. There has been a small case series showing success with this approach. It can also be helpful if the PSG is accompanied by a video, as some paradoxical insomnia patients are convinced that the tracing must belong to another patient! We were unable to do this with Mrs W, as the polysomnogram was done in a different hospital.
We therefore needed to find another way of convincing her she was sleeping. We asked her to get a golf score counter. This records the number of times a button is pressed. We asked her to do something we would normally discourage, which is to watch the clock. We asked her to press the counter every half an hour on the half hour. As she was in bed for eight hours, if she was awake for all this time we would expect the counter to record 16 presses. She did this for a week and found that the number of clicks ranged from four to nine. She therefore became aware that she had ‘lost time’ ‘at various points during the night. She conceded that she may therefore have fallen asleep for a few minutes at a time’. We also asked her to do something else that we normally discourage, which was to listen to an audiobook in bed. She admitted that although she felt she had not slept, she had ‘lost’ a few chapters here and there during the night and therefore probably had nodded off.
As Mrs W had already tried hypnotics without any success, we decided to concentrate our efforts on using cognitive behavioural techniques. She joined a CBT for insomnia group and engaged well with this. One of the core techniques of CBT for insomnia is sleep scheduling, which involves very closely matching the time in bed to the actual time asleep (see case study 48). Patients keep a sleep diary for a week and work out their average sleep time. They then ensure they do not spend any longer in bed than their average sleep time. As Mrs W recorded her sleep time as 0 minutes every night, it was very useful having the polysomnogram, and so we set her maximum time in bed as 6 hours 25 minutes. This meant she was going to bed no earlier than 00.35. As she was staying up later, she started to experience subjective sleepiness when she was trying to stay awake until her new bedtime. This made her feel more confident that she was actually likely to get some sleep. We also instructed her in the technique of Paradoxical Intent. This involves doing everything exactly as one would on any other night, keeping to the normal bedtime routine, going to bed and then trying to stay awake with the eyes open. This can be a very effective technique, probably because it stops the person from striving for sleep. This removes much of the anxiety they experience and can lead to more rapid sleep onset. But in Mrs W’s case it had the added benefit that she really struggled to keep her eyes open for more than a few minutes and this allowed to her to subjectively experience her increasing level of sleepiness.
After two weeks Mrs W reported that she felt she was starting to have more extended periods of sleep. She still felt that her sleep time was under 4 hours in total, but was elated that she was making progress. She also noticed that she was less irritable and tired during the day. She was never entirely convinced that she had been sleeping all along, but, as she was clearly improving, we didn’t feel it necessary to pursue the point any further.
Learning points
Paradoxical insomnia or sleep state misperception is a condition where the person sleeps without subjectively feeling they have slept. A certain degree of sleep state misperception is common in insomnia.
Some patients will be very reassured when shown objective evidence that they have slept while others are very set in their beliefs.
Complete sleeplessness for more than a few days at a time is not compatible with life and so everyone gets some sleep.
It is tempting to dismiss claims of complete sleeplessness, but paradoxical insomnia can cause significant distress and should be addressed. If there are no daytime symptoms, then helping the patient to become aware of their sleep is the only treatment required. If there are daytime symptoms, then it should be treated in the same way as any other insomnia.