Do you ever get sleepy after lunch? Who hasn’t had to stifle a yawn or three during a boring Zoom meeting? Most of us can keep our eyes open, though. Not people with narcolepsy. They are often overcome by daytime sleep attacks that they are powerless to resist. How safe and effective are narcolepsy drugs?
How Common Is Narcolepsy?
According to the National Institute of Neurologic Disorders and Stroke, narcolepsy affects as many as 200,000 people in the US.
“…since this condition often goes undiagnosed, the number may be higher. Since people with narcolepsy are often misdiagnosed with other conditions, such as psychiatric disorders or emotional problems, it can take years for someone to get the proper diagnosis.”
People with narcolepsy get no respect. They suffer from “excessive daytime sleepiness” (EDS).
“All individuals with narcolepsy have EDS, and it is often the most obvious symptom. EDS is characterized by persistent sleepiness, regardless of how much sleep an individual gets at night. However, sleepiness in narcolepsy is more like a ‘sleep attack’, where an overwhelming sense of sleepiness comes on quickly. In between sleep attacks, individuals have normal levels of alertness, particularly if doing activities that keep their attention.”
This serious medical condition is often misunderstood by the public. As a result, patients may be laughed at or discriminated against.
They fall asleep unpredictably and inappropriately. When that happens, they may be accused of staying up too late watching videos, despite getting a “normal” night’s sleep.
Narcolepsy Can Be Disabling:
One reader reported that his good friend, who suffered from narcolepsy, would “just suddenly fall asleep for a few moments right in the middle of a conversation.” This is potentially disconcerting for family or friends.
Students with narcolepsy who fall asleep in class may face the wrath of uninformed teachers. The same thing can happen to people in the workplace. Even when a human relations department has been notified, employers may not understand the nature of the disability.
For many, the condition is disabling. They cannot work, drive or enjoy social activities because they may fall asleep inadvertently.
Some patients are also afflicted with cataplexy, a condition in which they lose all muscular control and collapse. This can occur while walking across a busy street or during a business meeting. People are especially vulnerable when they experience a strong emotion such as fear, anger or joy.
One grandmother had never held her grandchild, though she longed to do so, because she feared that happiness would make her collapse and drop the baby.
A reader reports that she experiences this scary problem whenever she has strong emotions such as laughter or excitement. Once, while climbing stairs, she collapsed and banged her head.
Another reader described her situation:
“Cataplexy is brought on by heightened emotion. In my case, it is related to humor and laughter. I can go for a long time without an ‘attack’ and sometimes have several attacks in a week.”
What makes narcolepsy/cataplexy so challenging is that researchers don’t truly understand what causes this complicated neurological disorder. There is no cure.
Although there is no cure, there are treatments. Doctors often prescribe stimulants such as Adderall (mixed amphetamine salts) or Ritalin (methylphenidate) to fight off sleepiness.
Perhaps you have heard of Adderall or Ritalin. These narcolepsy drugs are primarily prescribed for attention deficit hyperactivity disorder (ADHD). Both amphetamine and methylphenidate stimulate the central nervous system and can help keep people awake.
Provigil (Modafinil) & Nuvigil (Armodafinil):
One drug, Provigil (modafinil), is prescribed to help people with narcolepsy or obstructive sleep apnea stay awake during the day. A similar drug, Nuvigil (armodafinil), is also prescribed.
These narcolepsy drugs have side effects such as headache, nausea, nervousness, insomnia, diarrhea, anxiety, dizziness, dry mouth, palpitations and digestive upset. If a rash develops it could be serious and requires immediate medical attention!
Soldiers, truck drivers and shift workers may be tempted to use such stimulants to stay awake even if they don’t have narcolepsy. We discourage such off-label use.
GHB (Gamma Hydroxybutyrate)
Perhaps you have heard of GHB. It was been called a date rape drug. That’s because it has sometimes been furtively added to alcoholic drinks. This drug can make a person confused and sedated. It is hardly any wonder that the manufacturers of narcolepsy drugs changed the generic name from GHB to sodium oxybate.
Xyrem (sodium oxybate) and its chemical cousin Xywav are taken at bedtime instead of during the day. They are intended to help the person with narcolepsy sleep better at night so they will not experience excessive daytime sleepiness.
Sleep researcher Martin Scharf, PhD, has been studying narcolepsy for decades and started working with GHB almost 40 years ago. One of his first patients had such severe cataplexy that he would fall down 40 times a day.
Often this attorney couldn’t walk from his front door to the car parked in front of the house without collapsing. Initially he had to go to Canada to get access to the medication. The last time we talked to Dr. Scharf, he told us his patient had been taking GHB since 1983. He is the longest running narcolepsy patient on this medication and is “practicing law and doing wonderfully well.”
The grandmother who was afraid to hold her grandchild for fear she would drop her was also prescribed GHB. According to Dr. Scharf, “With Xyrem she has her life back. She can’t get enough of her grandkids today.”
Side effects of narcolepsy drugs like Xyrem and Xywav may include headache, digestive upset, sleep walking, sweating, anxiety, tremor, dry mouth, disorientation and dizziness. These narcolepsy drugs should not be combined with alcohol or other sedatives.
Patients may be prescribed Xyrem at night and a prescription stimulant during the day.
In Dr. Scharf’s opinion:
“Xyrem is the most effective treatment for the auxiliary symptoms of narcolepsy ever.”
Newer Narcolepsy Drugs:
The FDA has approved new-generation daytime stimulants. Sunosi (solriamfetol) was introduced in 2019. Perhaps you have seen a Sunosi commercial on television. It features a flying pig with purple “wings” and big goggles.
The announcer says:
“If you have obstructive sleep apnea and you’re often tired during the day, you could be missing out on amazing things.”
In other words, you may not see a a pig with purple wings flying past the window.
The announcer goes on to say that:
“Sunosi can help you stay awake for them. Once daily Sunosi improves wakefulness in adults with excessive daytime sleepiness due to obstructive sleep apnea.”
Then come the warnings:
“Don’t take Sunosi if you’ve taken an MAOI in the last fourteen days.”
Of course, many people would not have a clue what an MAOI (monoamine oxidase inhibitor) is or whether they have been taking one.
“Sunosi may increase blood pressure and heart rate which can increase your risk of heart attacks, stroke, heart failure or death…Sunosi can cause symptoms such as anxiety, problems sleeping, irritability and agitation. Other common side effects include headache, nausea and decreased appetite.”
The same year the FDA approved Sunosi, it also approved Wakix (pitolisant). This medication has been used in Europe since 2016. It works on a different pathway, and unlike the other narcolepsy drugs, it is not considered a controlled substance.
Side effects include headache, nausea, insomnia, anxiety, digestive upset, dry mouth and changes in heart rhythm.
This medication can interfere with the effectiveness of oral contraceptives.
“Women should use nonhormonal contraceptive methods while taking pitolisant and for 21 days after stopping treatment.”
One big drawback to narcolepsy drugs such as Sunosi and Wakix is price. Without insurance, Sunosi could cost nearly $800 a month. According to the Medical Letter, Wakix might run as much as $6,500 and both Xyrem and Xywav could top $$7,600 monthly.
Final Words on Narcolepsy Drugs:
Narcolepsy is considered a rare condition, even though it may be more common than the experts believe. That means that drug companies can charge a breathtaking amount for narcolepsy drugs that are deemed “orphan” drugs.
Orphan drug status apparently gives drug companies carte blanche when it comes to price. Many cancer treatments have stratospheric drug prices. So do medications for rheumatoid arthritis, psoriatic arthritis, hepatitis C and ankylosing spondylitis.
Narcolepsy remains a challenging health condition to diagnose, treat and, above all, to live with. Patients deserve more understanding and support from family, friends and co-workers.
Most people do not suffer from either narcolepsy or cataplexy. But lots of folks have insomnia. That can lead to excessive daytime sleepiness. If you would like to learn more about sleep in general and ways to deal with insomnia, you might find our eGuide to Getting a Good Night’s Sleep of interest. This electronic resource can be found in the Health eGuides section.
Please share your own thoughts and experiences with narcolepsy drugs and insomnia in the comment section below.