You sleep 11 hours a night, set four alarms to wake up in the morning, and you still need a wake-up call from a friend or a family member to drag you out of bed. Even after that long slumber, you don’t feel refreshed. You drag through your day, thinking only about when you can get back to bed.
Sound familiar? It’s not just you. That’s life with idiopathic hypersomnia (IH).
It’s hard to go through life feeling sleepy all the time, but new treatments on the market and in the pipeline — many of which are already used to treat narcolepsy — can help.
The Link Between IH and Narcolepsy
IH and narcolepsy are not the same thing, but they have many common symptoms.
If you have narcolepsy, you have fragmented sleep. You wake numerous times throughout the night. As a result, sleep isn’t restful and you feel extremely sleepy throughout the day. You may never feel completely rested. You might often nod off during waking hours. It’s said that in narcolepsy, there’s a weak boundary between sleeping and waking. The body too easily shifts back and forth between the two.
When you have IH, on the other hand, you have no trouble sleeping through the night. In fact, you’re able to sleep hours and hours longer than the average person and maybe still feel like you could sleep some more.
“There’s no limit to the amount they could sleep,” says Andrew Spector, MD, a sleep medicine specialist at Duke Health in Durham, North Carolina. “Fifteen hours? No problem. Once asleep, they’re going to stay asleep. The biggest problem is the transition from sleep back to wakefulness.”
So, while in many ways the conditions seem like opposites, the result is the same. People with IH have that same excessive daytime sleepiness than those with narcolepsy have. That’s why doctors might prescribe certain narcolepsy drugs to their patients with IH.
Because narcolepsy medications often do work well for people with IH, researchers are actively working to document these benefits through large randomized, controlled clinical trials. If the medications prove beneficial in these structured scientific studies, the FDA could approve them as official treatments for IH. That way, more doctors could prescribe the medications and insurance plans would be more likely to pay for them.
Treatment Options
Since people with IH feel sleepy all day long, it’s very hard for them to complete their work, school, or family responsibilities — much less have a personal life outside of these responsibilities.
“When they come home from work or school, they can't interact, they don't want to be social, they just want to sleep,” says Sally Ibrahim, MD, a sleep specialist at University Hospitals in Cleveland, OH.
It’s because of this difficulty staying awake and alert that, until a few years ago, stimulants were the main medications for people with IH.
Stimulants to keep you awake
Drugs like armodafinil (Nuvigil) and modafinil (Provigil) may be prescribed for IH to help keep you awake when your body wants to be asleep. People with IH might also take a medication commonly used for ADHD, methylphenidate (Concerta, Daytrana, Ritalin), which stimulates the central nervous system to keep you alert and help you focus.
While these drugs can make it easier to get through daily life, they don’t address what might be the toughest symptom of IH. “Sleep inertia. They just can’t wake up,” Spector says.
Sodium oxybates to wake you up
In 2021, the FDA approved Xywav, the first drug for idiopathic hypersomnia and the first treatment option to combat sleep inertia.
“People with IH could just sleep indefinitely,” Spector says. “They get up because they have to. But something is dysfunctional in that transition from sleep to wake. Xywav has been game-changing.”
You take this liquid medication before bed and again halfway through the night, which can be a challenge for many people with IH. When it wears off, Spector says, you should wake up with ease compared to what you’re used to — multiple alarm clocks, wake-up calls from friends, family members physically prodding you awake.
Xywav, which was already FDA-approved for narcolepsy, belongs to a group of medications known as sodium oxybates, which are central nervous system depressants that help you sleep deeply. It’s believed that the drug acts on certain brain cells while you sleep to make sleep deeper and more restful so that when it’s time to wake up, you feel ready and able to do so.
“One patient of mine, after going on this medicine, started waking up before their alarm,” Ibrahim says. “For the first time in their life, they were able to get up, drive to work, function at work, and they were so pleased with their ability to socialize in the evening. It changed their life.”
The idea is that the medication helps you sleep more deeply and restfully at night so that you can be more awake during the day. But because these medications can put a person into such a deep sleep, they can also be dangerous.
“The biggest risk is diversion and abuse,” Spector says. “This drug is derived from GBH, which is the date-rape drug. They don’t want you slipping it in someone’s drink. So it’s very tightly regulated.”
In fact, you can’t just pick it up at your neighborhood drugstore. This controlled substance ships from only one pharmacy in the country.
Of course, a sleep this deep may not be right for everyone with IH. Parents, for example, who may need to get up with an infant throughout the night might not want to take a sodium oxybate.
Xywav is a lower-sodium oxybate. If Lumryz, a higher-sodium oxybate, is approved, it may offer a once-nightly alternative to twice-nightly Xywav. On the other hand, Xywav, with its lower sodium content, may be safer for people with high blood pressure.
Other Narcolepsy Drugs Could Help in IH
Research is underway to test the benefits of other narcolepsy drugs with the aim of getting the FDA’s approval to prescribe these drugs to people with IH.
Dopamine and norepinephrine reuptake inhibitors (DNRI) to make you attentive
DNRIs are used to treat depression, ADHD, and narcolepsy. They raise levels of dopamine and norepinephrine in your brain. These are neurotransmitters — chemical messengers that carry important signals between certain nerve or brain cells — that can help you stay awake, alert and focused.
Researchers are studying the effects of the DNRI solriamfetol (Sunosi), a narcolepsy medication, in people with IH. Taken when you wake up in the morning, the medication helps keep you awake throughout the day.
Histamine boosters to keep you alert
Pitolisant (Wakix), already approved for narcolepsy, helps people with excessive daytime sleepiness stay alert and awake during the day by boosting levels of histamine in the brain. Histamine is a neurotransmitter that regulates parts of the brain related to arousal. Clinical trials are underway to see whether this histamine receptor antagonist provides the same benefits for people with IH that it does for those with narcolepsy.
Orexin boosters: A whole new approach
While existing narcolepsy drugs may provide many new options for people with IH, researchers are also pursuing entirely new ways to treat both narcolepsy and IH.
Dopamine, norepinephrine, and histamine aren’t the only neurotransmitters involved with sleep and waking. The neurotransmitter orexin sends signals to many different kinds of brain cells throughout waking hours to maintain alertness and wakefulness. People with narcolepsy are low on orexin. People with IH are not necessarily deficient in orexin, Ibrahim says, but they may benefit from more of it. Medications in development aim to raise levels of orexin in the brain to help maintain wakefulness throughout the day both in people with narcolepsy and IH.
“This is very exciting,” Ibrahim says. “These drugs are going to work like a light switch flipping on in the brain for some people.”
Greater Awareness
Before orexin-boosting drugs, pharmaceutical companies tended to develop drugs for narcolepsy only and then seek FDA approval for IH later on, Ibrahim says. That drugmakers are now developing treatments for the two conditions at once may signal a shift toward greater recognition of IH.
“People are starting to recognize that these are sister conditions,” Ibrahim says. “I’m glad to see people with IH included in this research. It’s going to be very helpful for patients in the future.”
