Episode Transcript
[00:00:10] Speaker A: Hello. Welcome.
[00:00:11] Speaker B: You're listening to seasons one of narcolepsy navigators, brought to you by Naps for life narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating ill us do a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerley Boga, the founder of NAPS for Life Narcolepsy, and welcome to our stories.
Let me introduce myself. I am Kerly Bwoga. I'm the founder of NAPS for Life Narcolepsy, a peer to peer support group. I am also a rising Voices speaker through Project Sleep and I am a health leader with Health Union where I write articles on narcolepsy. I started having symptoms at the age of 15 and I was diagnosed at the age of 18. I was very blessed to have not had to wait for more than three years to be diagnosed. But this is not everybody's story. I have a passion for sleep health and after running natural life Narcolepsy for three years, I want to expand and bring more awareness through sharing the stories of others.
[00:01:24] Speaker A: So you're asking, what is narcolepsy? Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness, cataplexy, sleep paralysis, hallucination, fractured sleep, vivid dreams, poor memory, automatic behavior, and obesity.
Narcolepsy is a disability that affects around one in 2500 people in the UK. That is approximately 30,000 people in the UK and in America.
It is one in every 2000 people, which equals to 200,000 Americans, which is equal to 3 million people worldwide.
There are two types of narcolepsy. Narcolepsy type one, which is narcolepsy with cataplexy, and narcolepsy type two, which is narcolepsy without cataplexy. So what causes narcolepsy? In over half the cases of narcolepsy type one, there's almost always a loss of the nerve cells that produce hypocretin. Hypocretin is a brain chemical that plays a central role in the regulation of sleep and alertness, motivation and mood. It also affects your ability to regulate your temperature, and all of these are affected if you are producing less of it. And this is what happens in the cases of people.
A lot of the cases of people who have narcolepsy type one, people who have narcolepsy type two, the hypocretin system does not appear to be damaged and the cause is not well understood.
Also, people who have idiopathic hypersomnia, which is another sleeping disorder.
It shares a lot of the same symptoms as narcolepsy. So you could say it was Narcolepsy's sister, and it has similar impact to the quality of life as someone with narcolepsy, which is also why I'm covering it in this podcast. Unfortunately, the cause for idiopathic hypersomnia is unknown. So there's still a lot of research that needs to be done in order to figure out how to reverse these illnesses.
You.
So, how do you get diagnosed with narcolepsy? Diagnosis typically includes a 24 hours sleep study that includes a nighttime portion and a daytime portion. So, the nighttime is a polysonogram. And say they attach these electrons to your brain, and they attach that to a computer, and then they're able to look and see what's happening in your brain.
So they put you to sleep, or they ask you to go to sleep.
So usually come in the evening, and then you start the test. They attach all the electrons to your head. It takes maybe about 45 minutes, half an hour to attach them all. And then you might have dinner, and then you go to sleep when it's time to go to sleep. And it's recording all the time, everything that's happening. And there's a camera in the room that's also recording all your activity that you're doing that night. It's also recording as well. And then in the morning, they will do a multiple sleep latency test, also known as MSLT.
And this records like brainwaves.
And the diagnosis is mainly based on how quickly you go into REM sleep, which is rapid eye movement. This is the dream stage of sleep.
And so if you go into REM really quickly, that usually indicates that you might have narcolepsy. The faster you go into REM sleep, because normal people, you don't go into REM sleep qUickly. This is a stage of sleep that happens later on down in the sleep cycle, not at the beginning. You're not supposed to fall into REM as soon as you close your eyes. That's not normal.
So what are the symptoms of narcolepsy? Excessive daytime sleepiness, cataplexy, sleep paralysis, hallucinations, fractured sleep, vivid dreams, poor memory, automatic behavior, and obesity.
So let's delve a little bit into some of the symptoms. So, narcolepsy symptoms, excessive daytime sleepiness. This is periods of extreme sleepiness during the day that feels comparable to someone without narcolepsy if they would stay awake for 48 to 72 hours.
Cataplexy. This is a sudden loss of muscle control, which is triggered by emotions such as laughter, stress, surprise, anger, any type of very strong emotion will trigger it. The severity of cataplexy varies from it lasting for a few seconds to up to 30 to 40 minutes. And it will be start off with like your head, you losing the muscle control in your head at first, and your head might be bobbing and your jaw dropping, and then your hands and then your legs, and it could end in a complete collapse, knees buckling and falling down to the floor.
During this episode, you are conscious, fully conscious. You can hear everything that is going on around you, but you are unable to speak and move. So you can't speak, you can't move, but you can hear everything everyone is saying.
[00:07:53] Speaker B: Hallucinations.
[00:07:55] Speaker A: There are two types of hallucinations, hypnopompic and hypnagogic hallucinations. These are visual and auditory or tactile hallucinations. These happen upon waking up or upon falling asleep. They're very frightening and confusing, and they feel extremely real.
It's very difficult to know whether this actually is happening or this is a hallucination. That's how real they are.
Sleep paralysis. This is an ability to move for a few seconds or minutes upon falling asleep or waking up. And this is usually accompanied with the hallucinations.
Although it is important to remember that people who do not have narcolepsy do experience sleep paralysis also.
[00:08:56] Speaker B: Treatments. What are the treatments for narcolepsy? Narcolepsy has no cure. Neither does idiopathic hypersomnia.
You manage it through medication and taking scheduled naps. They offer antidepressants to decrease the cataplexy. They offer Wake promoting stimulants to help keep you alert. And they offer nighttime medication to decrease excessive daytime sleepiness and also to control cataplexy and also to try to keep you asleep at night. Because people who have narcolepsy and idiopathic hypersomnia also suffer from insomnia, and they have very disturbed sleep at night. And so you would sleep maybe an hour, and then you'd wake up again, half an hour, then you wake up Again, 15 minutes, you wake up again.
[00:09:51] Speaker A: Half an hour, you wake up again, 1 hour, you wake up again, 15.
[00:09:54] Speaker B: Minutes, you wake up again. And usually for myself, the total sleep I get at night on a good night is 4 hours. And that's not continuous. That is 4 hours of fragmented sleep. And that's on a good night.
And this is my life, like every day.
[00:10:14] Speaker A: It's hard.
[00:10:15] Speaker B: You have to really push yourself. You imagine surviving on 4 hours of sleep make you very cranky. Like sometimes people say, okay, why are you not so upbeat and stuff? And I think if you had 4 hours of sleep every day this week, and you had to go to work and function and take care of your kids and navigate London transport and everything, I'm sure you wouldn't be the most bubbliest, wonderful, happiest person in the world. You wouldn't, because sleep is so important and it's difficult to manage on only.
[00:10:51] Speaker A: 4 hours of sleep. Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
[00:11:03] Speaker B: Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
