Sleep plays a vital role in physical health, emotional well-being, and cognitive functioning. Just check out this primer from the National Institutes of Health on the role of sleep and the impact of even light sleep deprivation. Few things are as frustrating as not being able to fall asleep. Unfortunately, that is frustration that many Lupus Warriors are familiar with.

Multiple sleep problems are common for people with lupus but two of the most common are narcolepsy and insomnia. These conditions make it difficult to maintain a healthy sleep cycle and can lead to lupus symptom flares.

What is Narcolepsy?

Narcolepsy occurs when a specific type of neuron in the brain called hypocretin-producing neurons are damaged and destroyed. These neurons help control the normal sleep-wake cycles in the body. When they are damaged, it becomes harder to fall asleep, stay asleep, and feel tired or awake.

The most common symptoms include:

• Excessive daytime sleepiness (EDS)
  • Persistent feelings of sleepiness, regardless of how much sleep a person got the night before
  • Sudden periods of sleepiness (sometimes known as “sleep attacks”)
  • Between “sleep attacks” a person’s alertness and energy level in normal
• Sleep paralysis
• Vivid dream-like images and hallucinations.
  • Can be triggered by intense emotional situations, both positive and negative, or at random
• Automatic behaviors / temporary sleep episodes
  • Falling asleep during an activity but physically continuing the activity (e.g., writing, but having a significant decline in penmanship and no recollection of the activity)
• Difficulty sleeping at night

The exact symptoms, triggers, and frequency of the episodes differ from person to person. In all cases, it is a serious condition. By depriving the body of sleep and causing sleep at bad times, narcolepsy can cause problems in social situations, athletic activity, and in the workplace. In addition to the issues mentioned above, it can both weaken the immune system and increase inflammation.

There are two types of narcolepsy:

• Type 1: With cataplexy, which includes muscle weakness and temporary paralysis of the body during an episode, or before and after sleep.
• Type 2: Without cataplexy, which does not include muscle weakness.

Type 1 is the most common form for people living with autoimmune conditions like lupus.

Narcolepsy and Lupus

Narcolepsy is estimated to be present in 0.03%-0.16% of the population worldwide, but is more prevalent in people with autoimmune diseases. A 2016 study comparing 158 people with narcolepsy with a control group found that people with narcolepsy were 1.5x-3x more likely to have an autoimmune disease. Over 18% of people with narcolepsy had an autoimmune disease.

This study also reported that many people experienced symptoms of type 1 narcolepsy prior to being diagnosed with an autoimmune diseases. Antibodies that specifically target the hypocretin-producing neurons can be produced by in the body of people living with autoimmune diseases.

The reasons why antibodies are created for this neuron specifically are unknown, but it is something to keep in mind if lupus includes other neurological symptoms such as brain fog or fatigue.

Other Causes of Narcolepsy

Narcolepsy can be caused by brain injuries or infections, and might even be inherited. If you have a family history of sleep challenges, or had an injury or infection shortly before experiencing narcolepsy, then it is possible that the sleep challenges are unrelated to lupus.

Identifying the underlying cause can be important to determining the ideal treatment plan and ensuring that narcolepsy treatments do not interfere with medications being taken to manage lupus. Treating sleep disturbances helps encourage healthy levels of inflammation, which can help reduce many lupus symptoms.

Treating Narcolepsy and Lupus

Narcolepsy can be treated with medications, including modafinil, amphetamine-like drugs, antidepressants, and sodium oxybate. And, supplements like melatonin may help promote sleep. These medications focus on altering the chemistry in the brain to promote healthy sleep and wake cycles.

Lifestyle changes may also help, including:

• avoiding alcohol
• limiting or avoiding caffeine particularly in the evening
• sleeping and waking at set times
• avoiding large meals, particularly close to bedtime
• limiting exposure to bright lights
• exercising regularly

Talk to your lupus treatment team about how you can combat narcolepsy, and take back your sleep schedule.

Fatigue and sleep problems might not be caused by narcolepsy. If you suffer from shortness of breath, have frequent headaches, and have trouble exercising, you should investigate whether you suffer from inflammation-relate anemia, another symptom of SLE. Click here to learn more.

The disorienting aspects of narcolepsy can also mimic another lupus symptom: brain fog. Read more about brain fog here.

Additionally, fatigue is a common lupus symptom. Read more here about fatigue and how to better handle it.

Mediation & Mediator Variables

When designing research studies, it is necessary to consider what will be measured. And, part of that process is defining the independent and dependent variables.

Independent variables are the variables that are changed intentionally by the researchers (different medication dosages, etc.) or are standard variables like age or time. The measurement of these variables does not change as a result of some other variable.

Dependent variables, on the other hand, are variables that are being studied and measured. A hypothesis is a guess at the change in the dependent variable based on the presentation of some independent variable.

Mediation models are another type of study which include mediator variables. Mediator variables are used to clarify the understanding between an independent variable and a dependent variable. In this way, mediator variables attempt to describe chains of action that may be influenced.

Sleep Strategies

Looking for ways to get to sleep faster and stay asleep? These may help:

1. Avoid blue light (cellphone screens, television, computers, etc.) 30 minutes before bed
2. Wake up at the same time everyday (weekends, too!)
3. Ban pets from your bedroom if they wake you up in the middle of the night
4. Keep your room slightly cooler than normal
5. Exercise daily — but try not to work out too close to bedtime
6. Limit naps. Try to schedule naps and aim for consistency of schedule
7. Watch your caffeine intake
8. Do not use alcohol to help you fall asleep. It decreases sleep quality and can lead to dependence issues

Apps that measure and track sleep

Sleep Cycle (iOS). Sleep Cycle uses the microphone on your smartphone to analyze your sleep. It uses that data to determine the perfect time to wake you up. This helps  you feel more rested and relaxed (according to their website).

More importantly, it gives you a measure of your sleep quality. So what’s keeping you awake? Was it  dinner with the in-laws or a new medication?

 

SleepBot – Available for iOS or Android. SleepBot offers:

• tracking
• soothing sounds
• smart wake up capabilities
• great charts and graphs to help you find trends

It also lets you export all your data so you can bring your journal with you to the doctor.

Gadgets that measure and track sleep

If you really want to get serious about tracking and measuring your sleep, check out these advanced sleep tracking gadgets. However, they are more expensive

Beddit – For $150, you get a thin device that goes under your sheets. Beddit measures your sleep quality, heart rate, breathing, and snoring. Best part: Set it and forget it. Nothing to remember at night!

Withings Aura – For $300, you get everything that comes with the Beddit but you also get a color-changing light and speaker. This allows the Aura to create a simulated sunrise for a gradual wake up which they claim “leaves you feeling energized and refreshed.”

The best part. It connects to Spotify, which means you can stream your favorite playlists or listen to wake-up programs.

Okay, I am tracking… Now What?

Most of the apps and devices come with recommendation engines. So, while you are tracking, you will be given suggestions on other ways to improve your sleep hygiene.

Here are a few other things you can try:

 

Eye Mask and Ear Plugs. One of the best ways to get a good night sleep and fend off fatigue and lupus flares is to invest in an eye mask and some ear plugs. Light and noise make it harder to fall asleep and stay asleep. While it might take a little time to get used to, and it might seem like an overly simple solution, eye masks and ear plugs can make a world of a difference.

 

Don’t lie awake in bed. Thinking about not being able to sleep can actually make it harder to fall asleep. Instead of staying in bed and getting anxious, consider:

• reading a book
• practicing meditation/mindfulness
• getting another (quiet) chore done

But, be sure to avoid blue light (smartphone/tv screens) as it can make getting to bed harder.

 

Create a bedtime routine. This is a lot easier said than done, but can make a huge difference. The apps and devices above can also make sure you are sticking to it. Try going to bed at the same time everyday and waking up at the same time everyday (yup, even the weekends). Do the same relaxing activity before you go to sleep. Read 30 pages of a book or take a warm bath. This is signal to your body it’s time to wind down. A warm bath can also go a long way to help the pain.

 

Talk to your doctor. If nothing is working, make sure to have an open and honest conversation with your doctor. Sleeping aids like melatonin can have a negative impact for people with autoimmune conditions, so it’s important to work with your doctor to find a treatment plan that is best for you.