Narcolepsy and Sleep Disorders (E8)

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Summary: Guest: Henry Nicholls, author of Sleepyhead discusses:

• How it can take years to get a proper diagnosis of your sleep disorder.
• That narcolepsy is central to many other sleep disorders.
• How narcolepsy and insomnia are similar.
• How your sleep and life can be improved despite your condition.
• What causes narcolepsy and cataplexy.
• The sleep disorders of most concern: Sleep apnea and insomnia.
• The overnight sleep study and multiple sleep latency tests.
• Why the terms REM and non-REM sleep are inadequate.
• Rapid Eye Movement in fish who don’t move their eyes!
• How precious sleep is and how we should take every means to protect it.

Links mentioned in the show:

Henry Nicholls website: http://henrynicholls.com/

Book:  Sleepyhead: The Neuroscience of a Good Night’s Sleep https://www.amazon.com/dp/1541672577/

Facebook: https://www.facebook.com/SleepyheadByHenryNicholls/

Twitter: @WayOfThePanda  https://twitter.com/WayOfThePanda (the title of one of his previous books)

Show notes with time they occur in the episode:

2:20 – Henry Nicholls talks about his personal struggles with narcolepsy. He was 21 and going to University when he started getting very sleepy. It is a neurological disorder that involves a loss of certain neurons. It usually hits a teenage years but can happen at any age. It is common to be somewhere between normal and pathological and it makes it hard to tell if there really is a disorder. There are lots of other reasons why you might be sleepy, so it can be difficult to diagnose. He would fall asleep almost every time that somebody started a lecture, or he was in a darkened room. Despite fighting it, he could not stay awake.

5:00 – It took 18 months to diagnose which is considered extremely fast. Back then in the 1990s it would normally take 10 to 15 years from onset to diagnosis. It is not for want of trying, everybody with narcolepsy has a story to tell of going to the doctor, but because there is crossover with other symptoms, proper diagnosis gets delayed for a very long time. He got some medications that help with some of the side effects but not the sleepiness and muddled on for the next 20 years. People with sleep disorders tend to work from home because they struggle to work effectively in the workplace. It can be difficult, awkward, and embarrassing. So you end up becoming isolated. He had written a couple of books, and decided to write a book about narcolepsy, but the scope was too narrow, so he broadened it to include other sleep disorders. The pathology that underlies narcolepsy is central to the way the brain controls sleep and the doorway to other Sleep disorders. The result was that it improved his sleep. Which was not expected.

12:20 – The book gave him a newfound ability to function and sleep well. He struggled with writing the chapter on insomnia with authority because narcolepsy, where you have trouble staying awake, seems the opposite of insomnia, where you have trouble sleeping. Narcolepsy is classified as hypersomnia, where you sleep too much. But if you add up the total amount that he sleeps, it’s not much more than what you are supposed to be getting. But the quality of the sleep doesn’t exist. It is completely dysfunctional sleep. It is like being awake the whole time. Narcolepsy was the first sleep disorder identified. That was in the 1800s. It is a very broken nighttime sleep. He does not sleep. He has a lot in common with somebody with insomnia. One of his treatments was cognitive behavioral therapy for insomnia. He learned their techniques for breaking insomnia and they were extremely helpful for him. It let him to look at himself beyond being a narcoleptic, but as being a human being who can have other Sleep disorders that are treatable by other means. This led him to a much better sleep, although still far from normal. He found things that he could control that he had been ignoring.

18:20 – Henry Nicholls talks about the pathology of narcolepsy. The human brain has about a hundred billion neurons. The cells at issue are in that hypothalamus, a small part right in the middle of the brain. And they occupy a tiny fraction of the hypothalamus, there are only about 30 to 50 thousand of these cells. They did not know of their existence, and did not know about the chemicals that they secrete. And what the chemicals did. It is one of the most important orchestrating systems for the entire brain. It controls many things, among them alertness of the entire brain. It is called hypocretin. Or orexin. It was discovered 20 years ago. It is a protein, which they then linked to narcolepsy. Understanding that explains a lot about narcolepsy. It is a neurodegeneration that is contained to those cells. In the majority of cases is it is an autoimmune attack, which means your own immune system attacks and kills the cells. They go in about the space of a week. It is basically just bad luck as there are a number of conditions that have to align for this to happen. The hypocretins have three functions, the first being the alertness function. You wake up, it switches on the whole brain. It also moderates how the neurons interact with dopamine. Dopamine is a motivation chemical. The neurons struggle to respond to dopamine as you normally would. So when you’re not motivated, it is harder to stay awake. The third is that it moderates the serotonin system. Serotonin is responsible for mood and depression steps in. It is likely also responsible for a secondary aspect of narcolepsy which is cataplexy. With cataplexy, I giggle trickles down right through the serotonin and causes a paralysis. It is the same state that our bodies experience during the dreaming state or paradoxical sleep where you lose control of your motor activities. So when you’re making a joke that you think is funny, you collapse onto the floor. What matters is whether or not the person with cataplexy thinks it is funny. This can be dangerous. In his life it is a relatively fun thing, it happens when he’s laughing. While mirth is the most common trigger, other emotions can trigger it as well such as anxiety or fear. He can get cataplexy when he gets really angry, but he doesn’t collapse, his head just falls to his chest. It happens when he is telling his children off and gets really angry, then his head will fall to his chest and they know he is serious. Cataplexy can strike 20, 30, 40 times a day. Then it becomes psychologically destructive. You starve cataplexy by stop having emotions. That is not a good way to live.

29:40 – Henry Nicholls talks about sleep disorders of most concern. The big ones would be insomnia and sleep apnea. About one in 20 people will have sleep apnea. If you have or suspect you have sleep apnea, you absolutely have to get it checked out. The consequences are that it destroys sleep, but you can also die. It is when you stop breathing, then you wake up and have a broken sleep, but during the non-breathing the level of carbon dioxide in your blood rises, it creates a panic, the capillaries in the lung without oxygen shut down, it puts the heart under extreme pressure, and so it puts your cardiovascular system on her high-risk.

If you snore you are at risk of sleep apnea, or if your partner notices that you stop breathing while you’re sleeping, and you must get it checked out. And if you have insomnia, there are ways of improving the situation.

36:00 – How you can speed up the time to diagnosis if you suspect you may have a sleeping disorder. The issue is especially important not only to be able to sleep well, but that you’re waking health is predicated on having a good night sleep. Of all the thousands of medical conditions, there is not one that would not be improved with better sleep. There are many reasons why you might not be getting a good night’s sleep, so doctors have a hard time diagnosing that. So you going to have to learn a lot yourself, and be persistent. There are also self-help things you can learn about and do through books. You have to take it on yourself to provide the information they need to make the proper diagnosis.  You could even video or audio record yourself snoring or collapsing.

40:40 – The overnight sleep study and the multiple sleep latency test underpin the diagnosis of most sleep disorders. The overnight sleep study is when they hook you up to sensors and record your brain and body activity while you sleep as well as be watched over by sleep specialists. This is done in a sleep laboratory or a hospital. It picks up electrical patterns that show what stage of sleep the brain is in. It doesn’t tell us what the brain is doing but it indicates some patterns of activity. It can pick up if you’re breathing has stopped as in sleep apnea. It can reveal the quality of your sleep, for instance with narcolepsy it is very very frequent dreaming. REM sleep comes instantly when you fall asleep instead of the normal which would be 90 minutes after falling asleep. The brain needs long consolidated periods of deep sleep, but people with narcolepsy rarely achieve that. So the overnight sleep study can pick up very many different types of sleep disorders including restless leg disorder. The other test is specific to narcolepsy, and it’s called the multiple sleep latency test. They get you to go back to sleep after you’ve slept for the night which would normally be very difficult for people to do. They turn out the lights and you lie down and most people would just lay there for 20 minutes unable to sleep. But with people with narcolepsy you can put them in that dark room at any time of the day and tell them to do nothing and they will immediately fall asleep. Usually within one minute, but certainly within 5 minutes. So they do that to you multiple times. If you fall asleep quickly each time and especially if you also go into REM sleep right away, it is a good indication you have narcolepsy. Then to confirm it they would take some fluid out of your spine and look for the hypocretin which would not be there.

49:40 – The current definition of REM and non-rem sleep is simply inadequate. The EEG does not tell us anything about what is happening inside the brain. So REM stands for rapid eye movement, that by itself really doesn’t tell us anything about what is happening inside the brain. Originally there is a huge focus on REM sleep because that is when we dream and there was a big focus on dreaming. But now we know that non-rem sleep is extremely important. So nobody paid attention to the non-rem sleep even though it was important. The definitions are superficial. What we really want to know is which brain regions are doing what while we sleep. The researcher who made that statement has a difficulty with the definition of REM sleep since he studies fish who do not have the rapid eye movement but have all the other characteristics of what happens in the brain during REM sleep. It is defined by the paralysis that we have during REM sleep, not by the eyes moving rapidly. It is a carryover from the early days of research in sleep and the obsession with rapid eye movement and dreams. It Is by studying animals that we learn what’s actually happening inside our brains when we sleep.

55:50 – His fantasy YouTube video would be to get the message about how precious sleep is out there. Society ignores the true importance of quality sleep. And the damage that is caused by dysfunctional sleep. The video would be an animation of entering into the cells of the brain and display the basic function of the neurons and how they spread out to other sleep disorders so you can see the very many ways that sleep can be damaged. And how much care we need to be taking care to protect our sleep. It is a precious object that we need to protect all the time. There are many things that we need to juggle at the same time to sleep well.