Do you find it hard to get out of bed without an alarm clock and feel tired all day long?
You might think this familiar scenario is caused by lack of sleep, but for some people it could be a sign of idiopathic hypersomnia (IH), which leaves you feeling tired even when you’re sleeping well.
Sarah Morgan, 41, an administrative assistant from County Durham, first noticed her daytime fatigue while sitting her GCSEs. “I thought she was just stressed,” she recalls. Even after she had a full night’s sleep, she “could hardly keep her eyes open.”
In fact, this was a feature of IH. Affected people may need a nap even after sleeping 10 hours or more each night. In severe cases, people may sleep up to 18 hours per day.
People affected by idiopathic hypersomnia (IH) may need a nap even after sleeping for more than 10 hours each night.In severe cases, patients may sleep up to 18 hours a day.
Other signs include brain fog, difficulty waking up from sleep, headaches, confusion, and losing things. This is because excessive fatigue means that people experience several seconds of “microsleep” in which they perform activities without being conscious of what they are doing.
“IH is under-recognized and often disabling,” says Dr. Paul Reading, a neurologist and hypersomnia expert. [excessive sleepiness] Based at South Tees NHS Foundation Trust. “It seriously interferes with all aspects of life, including social life, education, and career.”
One problem is that IH can be easily confused with other conditions such as depression. It means those affected end up taking drugs they don’t need, which causes side effects, or their problems are dismissed as “lazy.”
Despite her severe sleepiness, Sarah passed her GCSEs but ‘failed’ her A-levels because she was constantly tired.
“I went home during the day because even though I had slept well the night before, I couldn’t resist the urge to take a nap and sleep deeply.”
After repeated visits to her GP who carried out blood tests for conditions that could cause fatigue, such as anemia, Sarah was told that she was “just young and tired” and to “get over it”.
Excessive daytime sleepiness is a common symptom and can be linked to a lack of quality or quantity of sleep, says Dr. Petersen, a consultant in sleep and breathing at the Royal Brompton and Harefield Hospitals. says Dr. Alana Hare.
Dr Alana Hare, Consultant at Royal Brompton and Harefield Hospitals
Dr. Hare added that there are many causes, ranging from obstructive sleep apnea (a condition in which breathing stops repeatedly during the night) to neurological conditions such as narcolepsy, medications, and psychiatric disorders.
First identified in the 1970s, IH is estimated to affect 1 in 25,000 adults, but Dr Reading believes the true number is 1 in 5,000. “It’s slightly more common in women, and peak incidence is in the teens, but it often goes undiagnosed for years.”
This condition is diagnosed only when other possibilities have been ruled out. (Idiopathic means the cause is unknown.)
“We don’t really know what’s behind it,” says Dr. Reading. “Brain scans examining major sleep centers such as the hypothalamus are normal.”
However, it also has some unique characteristics. “IH typically requires unscheduled naps during the day, even though subjects have excellent sleep throughout the night, often achieving 9 to 11 hours of high-quality sleep.” “It is best described as a syndrome of excessive sleep demands,” he explains. Another sign he has is microsleep. In other words, he sleeps for about 3 seconds when he appears to be awake but is not fully awake.
“Losing things around the house or leaving your house keys in the refrigerator can be signs of such lapses.”
This type of sleep deprivation may sound familiar to sleep-deprived people, but the important thing about IH is that microsleeps occur even after a full night’s sleep.
“Drowsiness caused by IH is also different from the ‘fatigue’ that people feel after engaging in strenuous mental or physical activity. “For example, patients with chronic fatigue syndrome generally have trouble falling asleep when they are inactive or resting, whereas patients with IH do fall asleep,” he says. .
Dr Redding added: “Patients often rely on multiple alarm clocks and report severe ‘sleep inertia’ or ‘sleep sickness’ in the morning, leaving them feeling ‘zombie’ for an hour or so. . This is often the worst symptom and the most difficult to treat. ”
And while people who are simply “not morning people” generally feel more alert as the day goes on, people with IH remain tired throughout the day.
As Sarah discovered in her 20s, this daytime fatigue can make it difficult to continue working.
“I wanted to work, but I couldn’t because I couldn’t stay awake all the time,” she says. “The frustration of not being able to complete my university assignments made me realize that there was something seriously wrong with me, and that it wasn’t just my attitude. It was a common reaction.”
The 21-year-old began to worry that something was seriously wrong and consulted another GP.
“I wasn’t going out or going on dates because I was always tired and avoiding friends. No one understood why I was so tired.”
She was eventually referred to a sleep clinic in 2004, where she was seen by Dr. Redding and diagnosed with IH.
Diagnosis is primarily based on the patient’s description of symptoms, but overnight testing in a sleep laboratory can be helpful. This will tell you if you’re getting quality sleep and can rule out conditions such as sleep apnea. How quickly the patient falls asleep is also evaluated.
“Most IH patients are discharged within an average of seven minutes,” says Dr. Reading. (10 minutes or more is considered normal). Overnight testing can also reveal other signs of IH, such as “excessive ‘slow wave’ sleep.” [deep sleep] It lasts until late at night,” explains Dr. Reading. “In most people, the deepest stages of sleep occur during the first two hours after disembarkation, but in IH, deep sleep can extend or recur into the middle of the night, preventing you from waking up easily.”
Dr. Hare adds, “The underlying disease process is still not fully understood and there are no biomarkers, making it very difficult to make a definitive diagnosis.”
This also means that treatment for IH is symptomatic only.
There are psychostimulants (amphetamine-like drugs) as well as newer drugs such as modafinil (used to treat ADHD) and Wakix (developed for narcolepsy). “These new drugs specifically act on the ‘wake-mechanism’ part of the brain and have fewer side effects, including on the heart, than amphetamines,” Dr. Reading said, adding that this is no longer a first-line treatment. However, it may be prescribed as a back-up option.
“Most patients improve with medication, but reaching ‘normal’ is relatively rare,” he added.
Sarah didn’t think she was taking the amphetamines she was prescribed. “I was irritable and spoke so fast that people couldn’t keep up.” It kept me awake, but it changed my personality – I felt like I was always rushing through life. . ”
She took it for six years and also tried Wakix, but stopped because she had side effects such as extreme headaches, blurred vision, and increased heart rate and started trying it for her family.
She gave birth to her first child in 2014, making her a mother of three children. She said: “It was terrifying being a mother to young children when all I wanted to do was sleep. I honestly don’t know how I stayed awake.”
She also felt very alone, as some relatives and friends doubted her diagnosis and told her to get over this disease quickly.Thankfully, her partner was really supportive. she says.
A lack of understanding about the condition can lead to severe frustration and “can develop into serious mood disorders such as anxiety,” says Dr. Reading. “The resulting low mood and anxiety may cause excessive sleepiness, but there is no evidence that depression causes true hypersomnia.” [excessive sleepiness]the opposite is almost always the case!
Additionally, medications used to treat mood disorders can affect your sleep-wake cycle, making it difficult to wake up in the morning or work traditional shift patterns, Dr. Reading says.
Apart from appropriate medication, a sleep specialist may be able to advise on lifestyle changes, from meal timing to regular sleep and wake times if possible. The good news is that “in my experience, IH does improve as a person gets older,” says Dr. Reading.
Sarah, on the other hand, does her best without drugs. Although she manages to work part-time, she still struggles.
“No matter how much sleep you get at night, you’re still tired in the morning,” she says. She has set up her Facebook support group for other sufferers, Idiopathic Hypersomnia UK.
She added, “One of the hardest things is when I explain this to people, they still don’t believe me.”
