Struggling to Get Out of Bed? You May Have Idiopathic Hypersomnia
Constant Daytime Exhaustion: Is It More Than Just Poor Sleep?
Do you struggle to get out of bed without an alarm clock, then feel tired all day? You might assume this familiar-sounding scenario is caused by poor sleep, yet for some people, it can be a sign of idiopathic hypersomnia (IH), a condition that leaves them feeling exhausted even if they sleep well.
Recognizing the Signs of Idiopathic Hypersomnia
Sarah Morgan, 41, an admin assistant from County Durham, first noticed constant daytime exhaustion when taking her GCSEs. “I thought I was just stressed,” she recalls. Even after a good night’s sleep, “it was almost impossible keeping my eyes open.” In fact, this was a hallmark of IH. Those affected can still need daytime naps after sleeping more than ten hours a night. Severe cases can sleep up to 18 hours a day.
Those affected by idiopathic hypersomnia (IH) can still need daytime naps after sleeping more than ten hours a night. Severe cases can sleep up to 18 hours a day.
Idiopathic Hypersomnia: Under-Recognized and Disabling
Other signs of IH include brain fog, being hard to rouse from sleep, headaches, confusion, and losing items — as the excessive tiredness means people experience seconds-long “micro-sleeps” where they carry out activities without being aware of what they’re doing. “IH is under-recognized and often disabling,” says Dr. Paul Reading, a neurologist and an expert in hypersomnia based at the South Tees NHS Foundation Trust. “It massively interferes with all aspects of life: social, educational, and careers.”
Challenges in Diagnosis and Treatment
One problem with IH is that it is easily confused with other conditions, including depression. It means those affected end up on medication they don’t need, which causes side effects, or their problems are dismissed as “laziness”. The condition is diagnosed only when other possibilities have been ruled out. “We really don’t know what’s behind it,” says Dr. Reading. However, there are distinctive characteristics. “IH is best described as a syndrome of excessive sleep need such that subjects have excellent overnight sleep but still require naps, usually unplanned, during the day,” he explains.
Managing the Symptoms of IH
While treatment for IH focuses on managing the symptoms, appropriate medication, as well as lifestyle changes, can make a difference. Most patients improve with medication, but achieving “normality” is relatively rare. Lifestyle changes such as maintaining regular sleep and wake times, and timing of meals can also have a positive impact.
A Supportive Community
Living with IH can be challenging, and lack of understanding about the condition can lead to frustration and feelings of isolation. Sarah, a diagnosed IH patient, started a Facebook support group called Idiopathic Hypersomnia UK, to connect with others who share similar experiences and to raise awareness about the condition.
Struggling with excessive sleepiness and feeling exhausted despite a good night’s sleep can be more than just tiredness. If you are experiencing these symptoms, it is important to consult a healthcare professional who can provide a proper diagnosis and develop a treatment plan tailored to your needs.
