Getting better sleep

Over 90% of patients with narcolepsy and idiopathic hypersomnia use some type of a non-medication based strategy to try to feel better.

There are many ways in which you can work with your family to improve your sleep, so that you feel more alert and able to engage when you are with your friends and loved ones.

What is good sleep?

Just like your fingerprints, everybody’s sleep is different. However, there are some common characteristics of good sleepers. For example:

• Good sleepers typically don’t struggle to fall asleep. It usually takes them less than 30 minutes a night, with a rare night (maybe once or twice a month) where it takes longer.
• Good sleepers stay asleep. They might wake up once or twice a night, usually to use the bathroom, but then are able to fall back to sleep in less than 15 minutes.
• Good sleepers wake up feeling good, most days of the week. Sometimes they might not wake up feeling the greatest, but there is usually a reasonable explanation – like they had a very exhausting week, started taking a new medication, or got sick.

What does good sleep look like for you?

The perfect time to learn more about your unique sleep patterns is when you are sleeping well! This way you have a baseline to compare to when things might start to become a problem.

Sleep experts use a tool called a ‘sleep diary’ to track sleep. While wearable devices (like an Apple Watch or a FitBit) can track this information, sleep is a highly subjective experience: what one child feels like is good sleep is often very different than another. The sleep diary is very simple to complete, taking no more than 1 minute per day.

If you want to print one out, you can download the sleep diary here.

How to use the sleep diary

Step 1: Learn the layout. If you look left to right across each row, you will see that there are 24 squares. Each square shows 1-hour of the day. This means that it is midnight (12AM) starting on the left-hand side of the sheet. If you go along the row to the far right-hand side, you have reached 11:59PM on the same day. The next day starts on the row below, back on the left-hand side.

Step 2: Using arrows. When you go to bed to try and sleep, mark the approximate time with a down arrow (↓). When you wake up to start your day (your final wake-up), mark the approximate time with an up arrow (↑).

Step 3: Marking your sleep. In between the arrow showing when you go to bed and when you get up to start your day, color in the boxes for when you were sleeping. If you are awake in the middle of the night for 15 minutes or more, leave that blank in the diary. Don’t worry about using arrows for when you wake up in the middle of the night.

Step 4: Daytime naps. If you take any naps during the day that last longer than 15 minutes, simply color it in on the diary. Again, don’t worry about using any arrows.

Step 5: Working together. Some families aren’t in the habit of talking about sleep. It is encouraged that you talk about sleep with your family so that the diary is as accurate as possible in reflecting what your sleep experience was like.

Because sleep often varies from day-to-day, and often differs between weekdays and weekends, we generally suggest that you track your sleep for at least 1 full week so that you get a good sense of what your average sleep is like. Once you have some sleep diary information, use this sleep calculator to learn more about their sleep!

How much sleep does my child likely need? It often surprises people when they find out that children all need a different amount of sleep. Even if you know of another family with a child who has narcolepsy or idiopathic hypersomnia, they may need different sleep than your child does!

The 5 most common sleep myths

It is really hard to properly explain science in the space of a Facebook post, or even a 2-minute news story on TV. As a result, there are many sleep myths that people believe in! Let’s clear some of them up.

Myth #1: You need a specific number of hours of sleep. Myth busted: One of the most common myths we hear about sleep is that you need to hit a certain number. For adults, that number is often reported to be 7 or 8 hours. While many adults may need 7 to 8 hours of sleep per night, it is absolutely not true that every adult needs that amount. The same is true for you. It matters more that you understand how much you should average each night over a period of about a week, with the goal of getting to sleep consistently each night, rather than a roller coaster of more sleep followed by less sleep.

Myth #2: How long you sleep is all that matters. Myth busted: The amount of sleep you get is important. But it is not everything. The quality of your sleep is just as important. Think about your diet: no one would ever say that you simply need to eat more food to be healthy. You should eat the right amount of food, that is high quality and nutritious!

Myth #3: Snoring is a sign of good, deep sleep. Myth busted: Light, occasional snoring is typically not something to worry about. However, if your child snores loudly and does so multiple nights a week, this may be something to discuss with their medical team. This may be a sign of sleep apnea, which is a sleep disorder that prevents your child from getting the oxygen that their body needs. An evaluation for sleep apnea in children typically involves a sleep study, which is a non-invasive way of learning about their breathing patterns at night. Here is a nice video to give you a sense of what a sleep study looks like.

Myth #4: Hitting the snooze button is good for sleep. Myth busted: The temptation to hit the snooze button is understandable, especially for someone with narcolepsy or idiopathic hypersomnia. This is even more true if you did not have a great night of sleep last night. However, it is unlikely to provide you with good sleep. Instead, it gives you choppy sleep that is not nearly as restorative. Instead of hitting the snooze button, plan an early morning activity that is enjoyable for you and your family or friends to get everyone over that morning hump!

Myth #5: If you aren’t able to sleep, spending that extra time in bed ‘resting’ is good for you. Myth busted: That extra time spent in bed, often trying to fall asleep, is teaching your body a bad habit. Instead of helping, it sends a signal that sleep requires effort – unfortunately, the harder you try to fall asleep, the more frustrated you become and the less likely you are to fall asleep. Rather than conditioning your body and mind to associate frustration with sleep, it is better to engage in a quiet and calming activity out of bed for 30 minutes or so, and returning to your bed if you feel like you are able to fall asleep.

Top 5 tips for improving your child’s sleep

There is not a single ‘right’ answer for how you can start to improve your sleep health. Don’t feel pressured to have to do exactly this or that. What is more important is that you are open to making small changes, and doing everything consistently.

Here are the top 10 strategies that other families have shared with us:

1. Wake up time is far more important than bedtime: If you can only implement one change, do this: wake up as close to the same time as possible every single day. Wake up time is so much more important than bedtime, which is when many people try to be consistent. Think about a common issue for school-aged children. They might wake up at very different times during the school week compared to the weekend because they are trying to catch up on missed sleep during weekdays by sleeping in on weekends. This rollercoaster ride leads children to feeling worse. By waking them up at a consistent time, what you wind up doing is ‘starting the clock’ on when they will be ready to sleep again the next day. a. Example: Think about when you have lunch and dinner; for example, let’s say you usually eat lunch around 12 noon and have dinner around 6:30pm. Consider lunch at 12 noon a reset on your ‘hunger timer’ for when you’re ready to eat again. It’s about 6.5 hours later, or when you have dinner. Now what if you have a very busy day and wind up having lunch at 3PM. Do you think you will be hungry for dinner at 6:30PM? Probably not. This same thing happens if you wake up at 7AM for school on Friday, and then 12 noon on a Saturday. It confuses your body about when you should be ready for sleep, and so you are likely to struggle to fall asleep at the ‘right’ time on Sunday night.
2. A predictable pattern: Families often tell us that after a few bad nights of sleep, someone with narcolepsy or idiopathic hypersomnia may sleep in the next morning or take an extra long nap the next afternoon when they get home from school. a. Pro tips: If they need to nap, try to keep it short (roughly 30 minutes) so it does not mess up your sleep the next night. Let your family know to pack their patience as you may be irritable when you wake up.
3. Comfort goes a long way: You can feel uncomfortable when you are extremely sleepy, and unable to have an opportunity to sleep because of school or other activities. Seeking as much comfort as you can in your bedroom can really help. Talk with your family to understand what makes you feel the most comfortable at night. Do your best to create that environment.
4. Have realistic expectations: It is not reasonable to expect yourself to jump out of bed each morning full of energy and excited to go to school. Your goal should be for you to wake up recharged and capable of staying awake (with the exception of a possible short day-time nap) and paying attention in school, and not needing to come home and take a long nap every day. This is especially true for some of you who may be struggling with depression or other mental health issues. Not feeling energetic upon waking may be because of these other challenges, and not your sleep.
5. Over-the-counter solutions aren’t always solutions: When someone is struggling, people sometimes turn to over-the-counter products, such as melatonin. While the scientific data for melatonin is not strong in terms of helping children fall asleep and stay asleep consistently, it can have a very real placebo effect for children and their families. If you are doing better with melatonin, keep in mind that lower doses are typically recommended (1-3 mg) and that the purity of these over-the-counter supplements are not regulated.