While most people get tired over the course of a day, it is rare that they will consistently feel the need to take naps during the daytime or sleep for extended hours at night. Those with idiopathic hypersomnia, however, experience an almost insatiable need to sleep during the day regardless of how much rest they get overnight. While Idiopathic Hypersomnia is a complex neurological issue that is difficult to live with, there are treatment options out there that provide hope for those dealing with the disorder.
What Is Idiopathic Hypersomnia?
Idiopathic Hypersomnia (IH) is a rare and chronic neurological disorder that causes people to feel extremely sleepy, even after they have gotten a full night’s rest. It belongs to the same category of sleep disorders as narcolepsy types I and II, which is known as Central Disorders of Hypersomnolence. However, unlike both types of narcolepsy, those with IH do not fall asleep at a mere moment’s notice.
Additionally, unlike your typical excessive daytime sleepiness (EDS) sleep disorder, those with a hypersomnolence sleep disorder like IH have normalized internal clocks and do not generally experience sleep disturbances.
Symptoms of Idiopathic Hypersomnia
The most telling symptom of idiopathic hypersomnia is the presence of excessive daytime sleepiness regardless of how long an individual slept the night before. Even 10 to 12 hours of sleep per night will not feel like enough for someone with idiopathic hypersomnia.
Of course, this is not the only symptom that individuals will notice. Other symptoms can include the following:
- Feeling unrefreshed by any amount of sleep
- Sleep drunkenness or inertia (which causes confusion and a lack of coordination after waking up)
- Difficulty waking up that leads to the individual going back to sleep regardless of multiple alarms or assistance
- Naps taken during the day (over the course of several hours at a time) that do not refresh the individual
- Presence of cognitive dysfunction (including loss of concentration, a shortened attention span, memory loss, and/or automatic behavior)
It is important to remember that an individual with idiopathic hypersomnia might not display each of these textbook symptoms.
Causes of Idiopathic Hypersomnia
The term “idiopathic” alludes to the fact that scientists do not yet know what exactly causes Idiopatic Hypersomnia to manifest in certain individuals. What is known is that this disorder is rooted in the body’s nervous system. Recently, researchers discovered that destruction of the body’s noradenergic neurons caused hypersomnia in animal test subjects. A decrease in the production of the neurotransmitter norepinephrine could potentially also lead to Idiopatic Hypersomnia. As of right now, scientists are still working to pinpoint a how a somnogen might be causing GABA-A receptors to be hypersensitive in those with idiopathic hypersomnia.
Other Issues Related to Idiopathic Hypersomnia
Diagnosis of idiopatic hypersomnia can occur based on the following criteria:
- Prescription medications are ruled out as a cause for symptoms
- Excessive daytime sleepiness must be present for at least three months
- Disturbances in the individual’s sleeping rhythm and a lack of sleep are ruled out
- Other health conditions are ruled out as a cause after a physical exam, medical testing, and an assessment of the patient’s medical history
- A polysomnography (PSG) test, followed directly by a Multiple Sleep Latency Test during the day, must be conducted by an accredited sleep laboratory
Idiopathic Hypersomnia Treatment Options
Currently, the FDA does not approve of any particular treatment for idiopathic hypersomnia. Typically, patients are given narcolepsy medications that have been approved by the FDA, as these medications (such as modafinil) are believed to promote wakefulness. While these medications tend to work for some people, they do not have an overwhelmingly positive impact on everyone with idiopathic hypersomnia. Some of these medications will stop working over time in some individuals, and others might choose to stop taking them altogether since they can produce negative side-effects.
As an alternative or in addition to prescription medications, many with idiopathic hypersomnia have benefitted from Cognitive Behavioral Therapy (CBT). CBT therapists guide their clients in examining negative thoughts and constructing more positive and helpful thoughts that can replace them. While this might not make sense on the surface, those with Idiopathic Hypersomnia can reap the benefits of CBT when they find themselves emotionally struggling with their health issues.
Examples of Idiopathic Hypersomnia
In 2015, a then-28-year-old Australian man named Lloyd Johnson allowed The Daily Mail to run a story about his life-long battle with idiopathic hypersomnia. After many years of feeling chronically fatigued for seemingly no reason, Johnson decided that he did not want to live his life in the confines of a bed.
Years of being prescribed unhelpful antidepressants passed and after eventually undergoing extensive medical testing, Johnson was finally given some answers as well as some helpful forms of treatment. After being prescribed the FDA-approved drug Flumazenil (a selective benzodiazepine receptor antagonist), Johnson began to notice drastic changes. Johnson is now able to run races and works as an advocate and educator on idiopathic hypersomnia. He maintains an online community and YouTube page geared toward providing information and support for those dealing with the difficult-to-diagnose and treat symptoms of Idiopathic Hypersomnia.
As Lloyd Johnson’s remarkable story of improvement shows us, those with idiopathic hypersomnia do not need to spend the rest of their lives in their beds. Although the symptoms of this disorder are incredibly difficult to deal with on a daily basis, there is hope to be had. The research community is still hard at work, attempting to identify a root cause and best treatment method. However, there are some helpful medications already on the market, which, when coupled with Cognitive Behavioral Therapy to address the emotional aspect of the disorder, can ultimately lead to a better quality of life.