There’s currently no cure for idiopathic hypersomnia, but certain medications and lifestyle changes can help you manage symptoms like excessive sleepiness.
Idiopathic hypersomnia (IH) is a rare sleep disorder that causes excessive daytime sleepiness. People with IH may also have a hard time waking up from sleep. IH symptoms typically start to show in adolescence and young adulthood, but the condition can develop at any point over the course of a person’s life. The cause of IH is unknown.
Unlike other sleep disorders, sleeping longer at night or taking naps throughout the day does not help relieve daytime drowsiness in IH. Instead, lifestyle changes and certain medications may be needed to help stay alert throughout the day and minimize the likelihood of injury due to sleepiness.
In this article, we take a closer look at the types of treatments that may help people with IH.
Different types of medications are available to treat IH. Most of these medications are typically used as general treatments for sleep disorders and may not always work as well in people with IH. However, IH-specific treatment options are also now available.
If your healthcare team believes that medication can help your IH, they’ll work closely with you to make sure you find the right option for your symptoms.
Non-amphetamine stimulants are wake-promoting medications that reduce drowsiness and improve alertness by changing the levels of chemicals in the brain that regulate sleep.
These types of medications aren’t made specifically for IH but can be used to promote wakefulness and reduce daytime sleepiness.
In most cases, modafinil (Provigil) is recommended as the first choice of medication for people with IH. In clinical trials, the use of modafinil has been shown to reduce sleepiness and improve wakefulness. In a
Clarithromycin (Biaxin) is an antibiotic that, like modafinil, can affect chemical signals in the brain that regulate sleep. Research suggests that in some people with sleep disorders, clarithromycin can help improve daytime sleepiness. This research is ongoing, and clarithromycin isn’t currently regularly prescribed for IH treatment.
Pitolisant (Wakix) also isn’t used as often, but it is being studied for the potential to treat excessive sleepiness in people who don’t respond well to other treatments. Research is ongoing for the use of pitolisant to specifically treat IH.
Amphetamine and amphetamine-like stimulants
Amphetamines are a group of stimulants that work by speeding up messaging between the brain and the body. These are not typically the first line of treatment for IH but may be used in specific cases as supplemental treatment.
Dextroamphetamine (Dexedrine) is a prescription amphetamine used to treat narcolepsy — another sleep disorder — and attention deficit hyperactivity disorder (ADHD). It’s not officially approved to treat IH, but it’s sometimes used for people with this condition.
Methylphenidate (Ritalin, Concerta) isn’t an amphetamine, but it works in similar ways. Methylphenidate is Food and Drug Administration (FDA)-approved for treating sleepiness in narcolepsy. There isn’t much research available on the use of methylphenidate specifically for IH. While it used to be a common treatment for IH, modafinil is used more commonly now.
When using amphetamines, it’s important to regularly follow up with your healthcare team. Amphetamines can become addictive if not taken correctly. This can lead to serious health concerns. If you’re prescribed amphetamines for IH, it’s important to take the prescribed amount as directed.
It’s also important to consider the other potential side effects of taking stimulants. These include mood changes, behavior changes, and heart problems.
Unlike the other types of medications used to treat IH, sodium oxybates are a type of depressant, which works by decreasing signaling within the brain. When taken before bed, these medications promote deeper sleep, which helps users wake up more refreshed so they feel less sleepy during the day.
There are two main types of medications in this group:
- sodium oxybate (Xyrem)
- lower-sodium oxybate (Xywav)
As the name suggests, lower-sodium oxybate contains less sodium, which could help reduce side effects of high sodium intake, like high blood pressure and heart disease.
Lower-sodium oxybate is the only medication specifically approved for the treatment of IH in adults. In a recent clinical trial, up to 93% of people with IH who received lower-sodium oxybate treatment reported improvements in their daytime sleepiness.
Like amphetamines, there’s a risk for substance misuse with lower-sodium oxybate. For this reason, it’s only available through certain prescribers and is dispensed only by certified pharmacies.
Before healthcare professionals prescribe medication, many will recommend lifestyle changes to help improve symptoms of IH. These types of interventions help
Some tips recommended by sleep experts include:
- Keep a regular sleep schedule.
- Avoid nighttime activities.
- Avoid caffeine later in the day.
- Limit alcohol use.
- Avoid medications that may affect your sleep.
- Treat any other sleep, medical, or psychiatric conditions that may be present.
It’s also important to take steps to stay safe while you may be drowsy. Driving or operating other heavy equipment while you are tired can be dangerous. Enlist help from friends or family when needed to avoid injury.
Because the cause of IH is unknown, it’s not clear if IH is curable. There currently isn’t a cure available, but that doesn’t mean there won’t be in the future. Research that aims to uncover the cause of IH is ongoing, which may one day illuminate treatment options that could help provide deeper, more meaningful relief.
It is possible for IH to resolve on its own. Studies that have looked at the natural progression of IH over time have found spontaneous remission occurs in approximately
The cause of IH is unclear, which can make it hard to treat. A combination of medications and lifestyle changes may be used to help reduce daytime sleepiness and prevent complications from excessive drowsiness.
If you have concerns about your daytime energy levels and find that getting a good night’s sleep isn’t enough to help, it may be time to talk with your doctor about your sleep health. An experienced healthcare team can help you identify the right treatment approach to help manage your symptoms.