Sleep problems

That's very kind, thanks very much. Thanks Sam as well for helping to organise today, and nice to see so many of you all here.

We've not got long, so I won't hang around. We're going to do a very quick whistle-stop tour of sleep and what it is and how it works, where it can go wrong, and then what we see additionally happening in people who might be coming forward with more complex presentations, like after they've sustained a significant injury, for example.

Then I'm going to give you a load of data later, and we'll see some examples of the kind of situations that we see in clinical practice. I'll finish up very briefly with some of the things that we can do to help manage those sleep issues that we often see happening after people have had a significant accident or injury.

We all know this: even the best sleepers in the world are going to have a bad night from time to time. The impact of that sleep disturbance on us in the short term tends to be more psychological. We struggle with our mood and our performance.

Also, when we start to not sleep well, that can persist. You'll meet people who don't sleep well sometimes, and they've had that experience for decades, which is a real shame, because we've got some really effective treatment strategies that have been shown to work for all sorts of people, even people who've had really significant injuries and accidents. They can benefit really quite quickly sometimes.

So the fact that we see so many people struggling for such a long time with their sleep is a shame, because we do have the technology and what's referred to as cognitive behavioural therapy for insomnia. I'm sure you've heard of CBT before. There's lots of different variations of it, and we have a version for sleep and insomnia called CBT-I.

This is what NICE guidelines would tell us to do to manage that sleep problem, and it's effective for 70% of people who engage with it. So we've got a great opportunity to intervene with people, and I'll come back to a little bit about that towards the end of this talk today.

First obvious question: how much sleep do you need?

Now, I'm sure you've all heard the eight-hour thing before. If I ask you to stick your hands up and say how many of you sleep for eight hours, a few hands go up, but not many. Some people feel fine on six and a half or seven. Some people need more like eight and a half.

Our clients know I don't tell Marjorie how much sleep she needs. I don't know that. I cannot look at you and say, "Oh, you look like a six-and-a-halfer. You look like a niner." I don't know that. You tell me.

Now, if you need six and a half, we're not going to have to work so hard to find the sleep you need in a 24-hour period compared to the person who needs more like nine. If you need nine, you're going to need to get nine. Otherwise you're going to feel rubbish. You give yourself eight hours all the time, it's not enough for you.

So making sure that you get the right amount of sleep for you consistently is really important. The eight-hour thing is a complete myth. Only you know how much you need to get. So let's try and find that and get that for you.

Of course, that very much depends on how old you are. The younger we are, the more sleep we're going to need. So we've got hours of sleep up the y-axis here in a 24-hour period. A newborn might sleep 16 to 18 hours in that 24-hour period.

As we get older through childhood, in the middle here are our teenage years. Once we reach our teenage years, our sleep requirement then is fairly set for the rest of our lives. That's the average there. Some short sleepers would be under that, longer sleepers would be over that.

The big changes in sleep are happening in childhood. Kids just need more of it, and the younger they are, the more they're going to need because of the intensity of the learning that they're doing.

We're born into the world, we know nothing. We have to learn everything. That's really intense, and we need lots of sleep to process that learning. So that's why children need more of it.

Quite a lot of our work is with paediatric populations. We need to make sure the younger the child, the more sleep they get. Make sure that's age appropriate, because you meet parents of six-year-olds who think that eight hours is enough, and it's not. They might need more like ten and a half or eleven.

You give a bunch of six-year-olds eight hours of sleep, they will struggle. They won't do well. They won't be happy. They'll be irritable. They'll be difficult to live with and teach.

So that eight-hour thing is quite dangerous, really. Know how much you need. That's personal. You could be a short or a long sleeper. But also make sure our kids get more, and the younger they are, the more they're going to need.

Okay. If I'm alive and I'm not in a coma, I'm going to be in one of three states of consciousness. I'm awake, sampling life. Or I'm asleep, then processing what I've sampled during the day. When I'm asleep, I cycle between these two different types of sleep, REM and non-REM sleep.

I'm sure you've heard of REM before: rapid eye movement sleep, and non-rapid eye movement sleep.

Now, if we look at all of these healthy younger people, that's all of us up here, what happens when we go to sleep is we drop rapidly down into a long period of deep non-REM sleep. The non-REM is shown in the numbers here: light one, two, down into deep three, four.

Then we cycle back up the other side and, instead of waking up, we go into a short period of REM, shown in that blue bar there. Then down into non-REM, non-REM. We cycle between these two stages of sleep throughout the night.

We get more of this deep non-REM in the first part of the night, and more light non-REM and REM towards the back end of the night.

Now, that's normal sleep structure, sleep architecture we might call that in health. That's what we're all doing every night. You've got to do that deep sleep first.

Imagine your brain. My brain is a busy office. I've got thoughts occurring to me all the time, and each thought I have in my busy office generates a piece of paper up here.

Some bright spark a few years ago estimated that we make 32,000 decisions every day. I don't know who counted that. One, two, yeah, all right. But I do have a lot of thoughts occurring to me all the time.

At the end of today I've got 32,000 bits of paper in here. Now I can cope with that, but if I miss a night of sleep where I process that out, this time tomorrow I've got 64,000 bits of paper in here. I can't cope with that. It's too much. I have to tidy this office up.

That's what we think is happening in the deep non-REM sleep. Most of my brain, your brain, goes very quiet. It doesn't stop, you'd be dead if that happened, but it's very quiet.

The exception is you've got your hippocampus right in the middle of your brain. It's essential for memory consolidation, and it's at its most active in the 24-hour period when we're in that deep non-REM sleep.

So you go back to that office analogy. We can analogise that hippocampal activity as my secretary coming out and going through these bits of paper.

Now, I've had a thought about Headway going to pay me £6,000 to talk to you today. Dream on. I've had a thought about a Coke can I've just seen blowing down the high street. I've had a thought about a guy who cut me up on the motorway when I was driving my car this morning. Paper, paper, paper.

Now, when I go into that deep sleep tonight, my secretary is going to come out and say, "Look, £6,000 invoice, Dave. That's really important. You can't forget about that. Top of the in-tray for tomorrow morning. Coke can blowing down high street? Don't need to remember that, Dave. Trash it."

So if I do enough of this deep non-REM, I'm going to tidy up my office and I'm going to be a happy, functional Dave.

But if I don't get enough of that, either my sleep's been disturbed, shortened, or some stressor has knocked me out of this deep sleep, that could be psychological distress. It could be eating before I go to bed and digesting my food knocks me out of deep sleep. That could be looking at my blue screens all day too much and that stops me getting into my deep sleep. It could be caffeine.

How many of you are drinking coffee right now? How many of you drink coffee at eight o'clock at night and then don't get your deep sleep because that caffeine, which is a stimulant, is knocking you out of your deep sleep?

That's my job. What is interfering with you getting this good deep stuff? Because that's what we need. We do it first in the night because I've got to tidy that up. Anything which might stop me getting this is going to make me feel rubbish the next day.

So I've got to try and find out what are the obstacles that are stopping you achieving that deep sleep. It could be something simple like drinking loads of coffee, or it could be really complicated, like a massive trauma experience which might need lots of therapy to help.

But that's what I'm trying to get back so I tidy up my office. It's the most important thing for us. It's why we sleep every night. Try and fight it. It's coming for you. You'll last two or three days maximum, and then you will be sleeping because you've got to tidy this up.

It's why we sleep every night, and it's why we want to do this deep stuff early, to tidy up and organise the memory.

"All right, Dave, that's great. Cheers. Well what's this REM about then?"

When you go into your REM sleep, a different part of your brain is activated, your amygdala. You might have heard of that part of your limbic system.

So I've got my cortices at the top, just underneath my skull. They're doing the high-level thinking stuff. Underneath that you've got your limbic system. Underneath that you've got your midbrain, which is the hypothalamus and the hippocampus that we've just been talking about.

Now, your limbic system is in between your cortex and your brain stem, and it's associated with emotional memory. So that's why your REM dreams, my REM dreams, are really scary, really weird, really unusual, really violent sometimes. They're way more than what I experience when my rational cortex is switched on.

So we think that the REM sleep is about emotional reprocessing, emotional venting if you like.

As we get older, some things change, some stay the same. We still have regular cycling between REM and non-REM, but our sleep is lighter and it's more easily disturbed than when we were younger.

So older people complain about their sleep more than younger people do. That's the ageing process. Your sleep's controlled by your brain stem. It gets older as you get older. It just doesn't work so well.

We also have age-related weakening of the sphincter muscles around the bladder, so older people tend to get up more during the night to use the bathroom.

This is really common. It's bizarre to me how people don't seem to join the dots between what they do at eight o'clock at night and what then happens at three o'clock in the morning.

Easy fix, this. Just stop drinking in the two hours before you go to bed. You avoid filling your bladder, you're less likely to wake up in the night to use the bathroom.

Less awakenings, more consolidated sleep, better memory, better forgettery, happy functional person.

There's a few other physiological things that can affect our sleep, like exposure to natural daylight and our circadian rhythms, which follow these 90-minute cycles, which control all sorts of things like our REM and non-REM cycling.

Looking at sleep now where we have someone in front of us who's maybe had some sort of significant injury. That injury is impacting on their sleep, and their poor sleep then impacts on their ability to rehabilitate from the injury. So you get a cycle-forward, cycle-back thing going on here.

We've got loads of additional problems that we might see with someone who's had a significant accident or injury, on top of what we might see in more typical insomnia populations. There may be behavioural things going on, physical and mental capacity issues. Fatigue is massive. Mood disturbances are huge. Impact on families can be huge as well.

We may have pain. We might be less active, so we're not so tired at night-time. We might be napping in the day and that's related to that. Certain medications have side effects which can be significantly impactful as well. Trauma symptoms like nightmares and mood disturbances in the day are very, very common.

We know that CBT for insomnia is effective in this group. I've been doing it with these people for 20 years. It really works.

We also know that we see more sleep problems and sleep-disordered breathing, such as sleep apnoea, even at mild levels of brain injury, even at the concussion level.

We know that if you're not sleeping well and you're tired, it will take you longer to recover. So anything we can do to improve fatigue and improve sleep will enhance the rehab process.

We need to measure people to get a good idea of what's going on, so we stick these things on people's wrists for a few weeks. These are called actigraphs.

This is our healthy control participant. This is data from two weeks. Each line along here represents one 24-hour period. Midnight on the left, six in the morning, midday in the middle, six in the evening, midnight again on the right-hand side.

Very low levels of activity during the night-time hours. Big sharp upswing in the morning. Activity levels fluctuating around during the day. A more gradual reduction in activity levels in the evening, back down to night-time sleep levels.

That is normal healthy sleep.

Now we're going to have a brief look at some of the other situations that we've seen over the last 20 years measuring people who've had significant injuries over that time.

This is an end-stage dementia client. There is no clear pattern here at all. There's no rest periods, sleep periods or activity periods that look in any way consistent. On average, this person is actually more active in the night than during the day. So-called day-night reversal. A complete loss of routine.

Here we have a lady 16 years after her accident. Actually, when she's sleeping at night, she's flatlining. There's hardly any activity at night at all. But what we've got is a four-hour window where she's consistently asleep. You don't want that. You need seven, eight, nine-hour windows where you're consistently asleep.

Here we've got this guy, two years after having quite a significant brain injury. On Monday, Tuesday and Wednesday he's got physio at nine in the morning, so he gets up to go to physio. The rest of the week he doesn't, so he lies in.

He looks exactly like a shift worker. He clearly doesn't like getting up in the morning, so when he doesn't have to, he doesn't bother.

So what do we do? "Case manager, could we just shift his physio to the afternoon, please?" Now we can tighten this routine up.

That's all we did. Within six months, the guy's got his life back. Six months later he's independent. Two years later he's married, he's got a partner, they've got kids and he's got a life now.

Sometimes it's us as health professionals. Let's do things for people when they want to do them. Don't ask night owls to do stuff in the morning.

Here we've got a guy who's really active. This guy's a wheelchair user. He's really highly active for someone who's using mobility aids. Loads of sleep disturbance, loads of challenging behaviour. He was not a happy guy.

He had this really intensive programme put in by the neuro OT, physio, loads of excursions and trips out. I'm thinking we're pushing this guy too hard.

So we dialled back his interventions. A month later, his activity levels massively stabilised, sleep much better. All we were doing was outpacing him, pushing him too hard.

Here we've got a client and a carer. Client hit by a car, significant injuries, wheelchair user, no communication needs. Round-the-clock care provided by his wife, who is massively fatiguing.

She's not getting enough sleep because she's staying up later than her husband to get him to bed, and getting up earlier than her husband to get herself ready and get him ready for the day. So she's exhausted.

It was actually her data in the court which argued for overnight waking care for this guy, to give her the rest that she needs. Sometimes carer data can be really, really useful. Don't forget about them.

Here we've got six-year-old identical twins. One born first without issues. Second child stuck in the birth canal, starved of oxygen, born with cerebral palsy and some significant developmental delay.

The brother has massive amounts of sleep disturbance every night. They wake him up three or four hours into the night for three or four hours every night.

"We get him up because we don't want him disturbing his brother and sister, so we take him downstairs and play with him for two or three hours every night."

Maybe we need to think about stopping this.

We go back to those three tried and tested methods that have worked for time immemorial: bribery, corruption and extortion. Kids will do anything for a sticker chart, for a Jaffa Cake.

This here is optional. This is habitual. We've got into the habit of getting three or four hours of dedicated mummy time every night. Now we've just got to stop this optional, habitual, three hours of playtime every night, and we'll positively reinforce that with a reward system.

Clinically, this stuff's useful. You get good data about activity levels, routines, disturbances, where those disturbances might be. That's going to really help guide when we do things.

From a case management point of view, you can monitor someone's progress over time. Get a baseline, do some interventions, measure again and see what's shifted.

From a litigation point of view, you are getting objective evidence. This is evidential. The courts love that. You give them numbers, they love that.

What do we do to fix it? We do CBT-I.

Pacing is really important. Don't push things too hard. Schedule your rest periods. We can identify when people are on and when they're off.

Get routines nice and tight because sleep loves that. Get activity levels right. Sometimes we've got to push people a bit more. Sometimes we've got to dial them back.

Natural daylight, melatonin production in the brain, really helpful for sleep. So let's do stuff that we normally do, just outdoors.

Get everybody around the table to design those interventions that are going to work for people. Get the data, examine the situation. Now we can get tailored, bespoke interventions that are going to work for Terry or Marjorie. They won't be the same. Everybody's different.

Good routines. Get away from anything which interferes with sleep. That's essentially what CBT-I is doing. Put everything in that sleep likes and get rid of the obstacles.

Get a comfy bed. Block out the light. Make sure pain and other co-morbidities are managed. Quiet, dark and boring in your bedroom.

Spend time outdoors. Get away from the blue-screen devices in the two hours before bed. Caffeine, alcohol, drinking, eating, two hours before bed.

Change the bedding with the season. Simple stuff.

No fun stuff in the two hours before bed. Nicotine, caffeine, drinking too much alcohol. Getting the medications in at the right time, making sure pain's managed.

I've been doing these actigraphic assessments for about 20 years now. We've measured and treated over 600 people, and we get about a 70-80% hit rate.

So we start off with CBT-I. We modify it, dial it back for those who need it, pace it in a bit more gently, do things a bit more slowly and gently.

We absolutely consider sleep as a co-morbidity. Don't ignore it. Everything else you do will be difficult if you don't get their sleep sorted.

Get your person better rested. Then they're energised to engage with you on the other things that you want them to do.

There's a load of references here from today if you would like to dig into this in more detail. As Tamsin said, this is recorded, so you can come back to these. We've shared the slides with Headway as well.

Thanks very much for listening. It's been emotional. Anybody got any questions?

Q&A

Tamsin: We do. We've got quite a few that have come through. Can I just start off by saying thank you to you, Dr Lee, for delivering such a really engaging and really helpful session on a topic that I know will resonate with so many people in the brain injury community.

Jonathan's asking: returning to life has been a massive disruptor to my sleep, which was 10 to 12 hours, but since I've resumed most of the activities which I was engaged in prior to the injury, now I find my sleep, my fatigue and my insomnia are all over the shop. I also suffer with complex PTSD. So what do I do and what should I ask my neuropsychologist and neuropsychiatrist for?

Dr Lee: It's really tricky when you've got multiple things going on there, Jonathan. There could be some lifestyle things which we might be able to tweak around to help with the sleep, but the underlying trauma really needs dealing with at the same time.

I'd be talking to your neuropsychologist and neuropsychiatrist and looking at EMDR, eye movement desensitisation and reprocessing. In this situation we do co-treatment. We manage the sleep and the trauma. In order to be successful, we're going to need to do both at the same time.

Tamsin: Are sleep patterns different in neurodivergent brains, particularly thinking of ADHD and autism, and the way they process information? Would you say they need more sleep in general?

Dr Lee: No evidence for that. Brain stem is where your sleep's controlled. Neurodiversity is above the brain stem.

What you do see in neurodiversity is, in some situations, a bit more hyperarousal. In order to get to sleep, we must de-arouse. All of us have to do that.

If your brain's too active, you won't be getting off to sleep very easily. That's insomnia: an active mind. You see that a lot more in neurodiverse populations. The winding down is sometimes more of a challenge.

So when we're working with neurodiversity, we'll pay a lot more attention to that wind-down period in the evening. We might extend that to three or four hours even, and make a really nice graded wind-down period.

Tamsin: Just a question about blue screens affecting sleep. Somebody said they don't think that blue screens do affect sleep. Any comments on that?

Dr Lee: Your brain makes melatonin in your pineal gland, which helps you to sleep. Melatonin is made by stimulating your retina with bright natural daylight.

These things emit light at the blue end of the spectrum. So if you're looking at them late at night, you're telling your brain it's morning. Now we've got good data to suggest that these things really do mess with your sleep. So two hours again, get rid of these before you go to bed.

Tamsin: We've got a couple of questions here about supplements that can aid with sleep. We've got a question about magnesium.

Dr Lee: Nothing. Magnesium, no. There's no evidence for magnesium at all. Despite all the aggressive marketing out there, there is no evidence for magnesium improving sleep at all. So save your money on that.

Tamsin: Vitamin D is the next one.

Dr Lee: Vitamin D definitely does help you sleep. You need vitamin D to help you sleep. It's a precursor molecule to making melatonin and serotonin. You can either supplement with that, or you can go outside and get some sunlight on your skin, or you can eat oily fish and leafy green veg.

Tamsin: Listening to a Brain Trust hypnotherapy sleep recording to help me get to sleep, is this interfering with my sleep pattern?

Dr Lee: We evolved on a planet for 10,000 years without hypnosis tapes, white noise generators, sleep robots. All that stuff is going to do is interfere with your sleep.

Good sleep needs nothing. What happens is you drop to sleep, you go into that deep sleep, then when you come back up the other side and you go into lighter sleep, that music, that telly, that noise wakes you up. If it wasn't there, it wouldn't do that.

It's coming for you. You can't fight it. Just let it happen and don't agonise about it, because that's arousing you. You must calm to sleep.

Tamsin: Can a private person buy and use the actigraph and read the data?

Dr Lee: Well yeah, you could. They cost about a thousand pounds. The software costs about two thousand. You could teach yourself to use them.

There's not many people around who are trained and skilled in analysing and interpreting the data. That is the trickier bit. Anyone could go and buy an Actiwatch and stick it on. It's just then, how do you process and interpret the data and then inform treatment from it?

Tamsin: Is the 'forgettery' a technical term? Because that is such a great way of explaining the importance of sleep.

Dr Lee: Yeah, memory and forgettery. It's good. I'm glad you picked up on that because it's quite mnemonic, isn't it? Normally you think forgetting things is a bad thing. Actually it's not. It's really, really important and really healthy for us because we get loads of stimulus coming at us all the time. A lot of it goes in subconsciously and we have to process that. That's what that REM's about. So yeah, the forgettery is really important.