Narcolepsy

Narcolepsy is a chronic neurological disorder that causes disrupted nocturnal sleep cycles which can lead to daytime sleepiness. Narcolepsy is considered to be a central disorder of hypersomnolence or excessive sleepiness. It occurs when the brain, specifically the hypothalamus, cannot normally regulate your sleep/wake cycles.

Coping with narcolepsy can be challenging, but managing it is essential to minimize interference with your emotional well-being, and even with the ability to think clearly. Once diagnosed, narcolepsy is considered a long-term disorder. It typically occurs between the ages of 15 and 30.

What Causes Narcolepsy?

• Autoimmune response: The brain contains a chemical called hypocretin or orexin, that is responsible for wakefulness. People with narcolepsy don’t have this chemical, possibly because of an autoimmune response.
• Family history: Most cases do not reflect a family history, but up to 10% have a close relative who reported narcolepsy symptoms.
• Brain abnormalities: A traumatic brain injury, tumors, or brain diseases may cause narcolepsy.

• Excessive daytime sleepiness: This very obvious symptom can cause you to fall asleep suddenly and without warning, even when you’re doing things like eating, working and driving. This “sleep attack” happens even when you’ve had plenty of sleep the previous night. Between attacks, you may feel very “normal” and alert.
• Cataplexy: This unusual symptom can cause muscle weakness, which, when severe, can cause you to collapse and be unable to move, speak or open your eyes. You are still conscious, which differentiates cataplexy from fainting or seizure disorders. An episode may occur if you feel fear, anger or another strong emotion, and even if you laugh. You may have only a few episodes or many in a day, and for several minutes.
• Hallucinations: You imagine things that are not there and hear sounds that aren’t occurring. You may feel threatened. Hallucinations usually happen when you fall asleep or wake up.
• Sleep paralysis: You may temporarily be unable to move or speak, usually when falling asleep or waking up. You also might experience vivid dreams or hallucinations. Sleep paralysis can last up to 15 minutes.
• REM sleep behavior disorder (RBD): Dreaming causes muscles to be temporarily paralyzed, but people with RBD don’t experience this. They can act out, shouting, kicking or doing something similar.
• Brain fog: Confusion, lack of focus and general malaise may characterize narcolepsy.
• Naps: These are short and allow you to recharge; you may have to take them.
• Fatigue: You don’t have enough energy. You’re always tired.

Type 1

This was formerly known as narcolepsy with cataplexy. People with type 1 narcolepsy have low levels of hypocretin or orexin. This neuropeptide is naturally found in the body and helps support being awake. It also plays a role in REM, or rapid eye movement sleep, the phase when we dream the most. Our breathing, heart rate, blood pressure and brain activity also increase, and our eyes move rapidly despite being closed.

Type 2

This was formerly known as narcolepsy without cataplexy. Like it sounds, this type features excessive daytime sleepiness but with no cataplexy. It usually also has less severe symptoms and normal hypocretin levels.

A variety of methods can help diagnose narcolepsy. It may surprise you that approximately 50% of people who have narcolepsy do not know it, and don’t receive a diagnosis.

• Medical history: This step will help your doctor understand more about your whole health picture.
• Physical exam: This helps eliminate any medical issues that could contribute to your narcolepsy.
• Sleep study or polysomnography: You may do these at home or go to a sleep center with a sleep technician to do painless and common tests that measure brain waves, heart rate, breathing or oxygen levels in your blood. The tests usually require sensors to be placed on your scalp, face, eyelids, chest, limbs and a finger. Your physician will study the results and will recommend appropriate treatment options.
• Multiple sleep latency test: This is a specialized sleep study to diagnose narcolepsy by measuring how rapidly you can fall asleep during the day.
• Epworth Sleepiness Scale: A brief questionnaire determines how likely you are to fall asleep in eight specific situations.
• Hypocretin test: A cerebrospinal fluid sample may reveal a hypocretin deficiency, also called orexin. This chemical regulates sleep.

No cure exists for narcolepsy. If you’re diagnosed with narcolepsy, you and your doctor will work on managing your symptoms. That’s important, not just for your well-being, but also because research shows that narcolepsy may put you at a higher risk for heart disease and other serious heart problems.

What Lifestyle Choices Can Help Manage Narcolepsy Symptoms?

Making smart lifestyle choices like these can help you improve sleep quality and better manage your symptoms:

• Try to keep a regular sleep schedule.
• Take brief naps.
• Avoid alcohol or caffeine before bed and avoid smoking.
• Get plenty of exercise.
• Relax before bed, maybe with a warm bath, and don’t use your phone or computer too close to bedtime.
• Don’t eat before bedtime, especially a large or heavy meal.
• Be careful when driving and ask someone else to drive if you are at risk of excessive sleepiness.

If lifestyle adaptations don’t fully control your narcolepsy, your doctor may consider prescribing medications .

Living with Narcolepsy

Living with excessive daytime sleepiness can be challenging. People with narcolepsy wish there were more awareness and less stigma around this condition. In addition to medications, lifestyle changes and planned naps, social support has emerged as a positive addition to a comprehensive treatment plan. Talk to your doctor for recommendations, including patient advocacy organizations you could join.

At Memorial Hermann, we know how important it is for you to have convenient access to a Sleep Disorders Center after you have obtained your physician’s referral. We offer eight locations throughout Greater Houston. Find the one best for you here.