Do you find it difficult to get out of bed without an alarm clock and then feel tired all day?
You might assume this familiar-sounding scenario is due to lack of sleep, but for some people it can be a sign of idiopathic hypersomnia (HI), a condition that leaves them feeling exhausted even if they’re sleeping well.
Sarah Morgan, 41, an administrative assistant from County Durham, first noticed constant exhaustion during the day when taking her GCSEs. “I thought she was just stressed,” she remembers. Even after a good night’s sleep “it was almost impossible to keep my eyes open.”
In fact, this was a hallmark of IH. Those affected may still need daytime naps after sleeping more than ten hours a night. Severe cases may sleep up to 18 hours a day.
People affected by idiopathic hypersomnia (HI) may still need daytime naps after sleeping more than ten hours a night. Severe cases may sleep up to 18 hours a day.
Other signs include brain fog, difficulty waking up, headaches, confusion and loss of objects, as excessive tiredness means people experience seconds-long “microsleeps” in which they carry out activities without being aware of what they are doing. .
“IH is underrecognized and often disabling,” says Dr. Paul Reading, neurologist and hypersomnia expert. [excessive sleepiness] based in South Tees NHS Foundation Trust. “It greatly interferes with all aspects of life: social, educational and professional.”
One problem is that IH is easily confused with other conditions, including depression. This means that sufferers end up taking medications they don’t need, that cause side effects, or that their problems are dismissed as “laziness.”
Despite her intense sleepiness, Sarah passed her GCSEs but “failed” her A levels because she was always exhausted.
“I would go home in the middle of the day because I couldn’t fight the desperate need to take a nap and sleep soundly, even if I had slept well the night before.”
After repeated visits to her GP, who carried out blood tests to check for conditions that could cause tiredness, such as anaemia, Sarah was told she was “just young and tired” and to “get on with it”.
Excessive daytime sleepiness is a common symptom in general and may be related to insufficient quality or quantity of sleep, says Dr Alanna Hare, a consultant at the Royal Brompton and Harefield hospitals, specializing in sleep and breathing.
Dr Alanna Hare, Consultant at Royal Brompton and Harefield Hospitals
There are many causes, ranging from obstructive sleep apnea (when breathing stops repeatedly during the night) to a neurological disorder such as narcolepsy, medications or psychiatric disorders, Dr. Hare adds.
First identified in the 1970s, IH affects approximately one in 25,000 adults, although Dr. Reading believes the true number is one in 5,000. “It is slightly more common in women, with a peak incidence in adolescents, although it often goes undiagnosed for many years.”
The condition is diagnosed only when other possibilities have been ruled out. (Idiopathic means without known cause).
“We really don’t know what’s behind this,” says Dr. Reading. “Brain scans looking at major sleep centers, such as the hypothalamus, are normal.”
However, there are distinctive features. “HI is best described as a syndrome of excessive sleep need, in which subjects sleep excellently during the night, often achieving between 9 and 11 hours of good quality sleep, but still require naps, usually unplanned, during the day,” he explains. Another sign is microsleeps, that is, a period of approximately three seconds “when someone seems awake but is not completely awake.”
“Losing items around the house or keeping house keys in the refrigerator can be a sign of such lapses.”
These lapses will sound familiar to anyone who has been sleep deprived, but the key with IH is that these microsleeps occur even after a full night of sleep.
“Sleepiness with HI is also different from the “fatigue” that people experience after performing some demanding physical or mental activity; for example, patients with chronic fatigue syndrome generally do not fall asleep if they are inactive or at rest, while that patients with IH do,” he says. .
Dr Reading adds: ‘Patients often rely on a series of alarm clocks, reporting severe “sleep inertia” or “sleep drunkenness” in the morning and feeling like “zombies” for about an hour. This is usually the worst symptom and the most difficult to treat.’
And unlike someone who is simply “not a morning person,” who will generally feel more alert as the day goes on, someone with HI will remain tired all day.
This daytime fatigue can make it difficult to hold down a job, as Sarah discovered when she was 20.
“I wanted to work but I couldn’t because I could never stay awake long enough during office hours,” she says. “It was the frustration of not being able to work on my college assignments that led me to realize that I had a serious problem and that it couldn’t just be my attitude, which was a common response from most people around me.”
Beginning to worry that something was seriously wrong, at age 21 she consulted another family doctor.
“I didn’t go out or date anyone because I was always tired and I avoided my friends because no one understood why I was so exhausted.”
She was eventually referred to a sleep clinic in 2004, where she saw Dr. Reading, who diagnosed her with HI.
While diagnosis relies heavily on a patient’s description of symptoms, overnight testing at a sleep lab can help: They show whether someone is sleeping well and can rule out conditions such as sleep apnea. How quickly a patient falls asleep is also evaluated.
“Most patients with IH will take an average of seven minutes or less to quit,” says Dr. Reading. (Ten minutes or more is considered normal.) Overnight testing may also reveal other signs of HI, including “excessive slow wave sleep.” [deep sleep] that lasts late into the night,” explains Dr. Reading. “In most people, the deepest stages of sleep occur in the first two hours after falling asleep, but in IH deep sleep can spread or reappear late at night and interfere with easy awakening.
Dr Hare adds: “As we still don’t fully understand the underlying disease process and we don’t have biomarkers, it is very difficult to make a firm diagnosis.”
This also means that treatment for IH is for symptoms only.
In addition to psychostimulants (amphetamine-like drugs), there are newer drugs such as modafinil (used to treat ADHD) and Wakix (developed for narcolepsy). “These newer medications work specifically on the part of the brain called the ‘wake mechanism’ and have fewer side effects (on the heart, for example) than amphetamines,” says Dr. Reading, stating that they are no longer first-line treatment, but may be prescribed as a backup option.
“Most patients improve with medication, but it is relatively rare to achieve ‘normality,'” he adds.
Sarah was not feeling high on prescribed amphetamines: “I was nervous, I spoke so fast that people couldn’t keep up. She kept me awake, but she changed my personality: I felt like she was always running through life.’
She took them for six years and also tried Wakix, but stopped taking them because of the side effects (extreme headaches, visual problems, and tachycardia) and because she started trying to start a family.
She had her first baby in 2014 and became a mother of three children. ‘Being a mother to young children when all you want to do is sleep was horrible. I honestly don’t know how I stayed awake.’
She says she also felt very alone because some family and friends doubted her diagnosis and told her to “just get it together; luckily my partner was very supportive.”
Lack of understanding about this disease contributes to serious frustration, “which can progress to a major mood disorder, such as anxiety,” says Dr. Reading. “The resulting bad mood or anxiety is then assumed to be the cause of excessive sleepiness, but there is no evidence that depression causes true hypersomnolence.” [excessive sleepiness]It’s almost always the other way around!’
Additionally, medications used to treat mood disorders can affect the sleep-wake cycle and worsen the inability to wake up in the morning or work a conventional shift pattern, says Dr. Reading.
In addition to appropriate medication, a sleep specialist can advise you on lifestyle changes that might help: from meal timing to sticking, when possible, to regular sleeping and waking times. The good news is, “in my experience, HI gets better as people get older,” says Dr. Reading.
Meanwhile, Sarah does the best she can without medication. She manages to work part-time, but she still struggles.
“No matter how much sleep I get at night, by mid-morning I’m exhausted,” she says. She has started a Facebook support group for other sufferers, Idopathic Hypersomnia UK.
He adds: “One of the hardest things is that when you explain it to people, they still don’t believe you.”