A good night’s sleep and energetic days can seem like unattainable luxuries for people with lupus. The cause may be narcolepsy, a neurological disorder that can be caused by autoimmune conditions.
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 SLE with a control group found that the people with SLE or other autoimmune diseases had a narcolepsy rate of almost 18% — far more than the control group participants.
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.