Idiopathic hypersomnia (HI) is, in many ways, a mystery. Its cause is unknown. There is only one FDA approved treatment. Even diagnosing this disorder, which results in excessive daytime sleepiness even after long hours of sleep at night, is a challenge.
If you have HI, the main goal of treatment is to reduce symptoms, especially extreme daytime sleepiness which can seriously affect your quality of life.
Usually, there are two routes you can take to control symptoms: the drug-free route and the drug-free route.
Medicines to treat HI
Calcium, magnesium, potassium and sodium oxybates (Xywav) are approved to treat HI in adults. It is believed to work through chemicals like dopamine and its brain pathways involved in arousal. However, it is not considered a stimulant.
It is also common practice to use so-called “arousal” drugs which are used for a similar disorder, narcolepsy, to treat HAI.
Generally, these drugs fall into three categories:
Stimulants. These arousal drugs include amphetamine derivatives, such as dextroamphetamine (Dexedrine), methamphetamine (Desoxyn), and methylphenidate (Ritalin). They can be effective, but they can also have side effects which include addiction – getting “addicted” to them – and heart problems.
Non-stimulating drugs that promote arousal. These include armodafinil (Nuvigil) and modafinil (Provigil). These affect the brain chemical dopamine to make you more awake.
Other non-stimulant and arousal-promoting drugs include pitolisant (Wakix) and solriamfetol (Sunosi).
Sodium oxybate. Under the brand name Xyrem, this medication, taken at night, promotes deep sleep. It reduces daytime sleepiness in people with narcolepsy and may help people with HI.
In addition, your doctor may prescribe medications used to treat attention deficit hyperactivity disorder (ADHD), antidepressants, and sedatives.
The Non-Medical Route
Changing your routine to promote better, more restful sleep at night (and more wakefulness during the day) is often a first step in treating HAI.
These changes may include:
- Stay away from night work
- Change what you eat
- Start an exercise routine or change the one you have
- Avoiding things like alcohol and caffeine
Caffeine, in fact, is an often used way to combat daytime sleepiness. Over 82% of people with HI use it. But most of them find its effectiveness poor.
Things like scheduling daytime naps to combat your drowsiness sometimes work in similar disorders, like narcolepsy. But with IH, they are generally not useful. Naps are often long and people with HI still wake up tired.
If you have other issues that may be contributing to your HI – an irregular internal clock (called a circadian rhythm) or nighttime breathing problems – your healthcare team may need to take care of them as well (along with treatments like light therapy or devices that regulate nocturnal breathing).
Cognitive Behavioral Therapy (CBT) teaches people how to lessen their negative reactions to the problems they are facing. This helps them cope with the daily pressures of managing disorders like HI.
It is important to stress that the treatment for HI is not either drug or not. Your healthcare team may combine drug and non-drug treatments, such as a change in diet with a prescription.
If you are excessively drowsy from HI, you should not engage in any unsafe activity, and you should refrain from driving or operating heavy machinery.
Learning about HI – and educating those around you who have it – is also always an important part of treatment.
Finding people in support groups (online or in person) who are going through the same challenges as you, and researching patient advocacy groups who are pushing for further research on HI can be helpful.