Health

How to tell if you have the sleep disorder that even doctors don’t know about

Do you have trouble getting out of bed without an alarm clock, then feel tired all day?

You might assume that this familiar-sounding scenario is caused by poor sleep, but for some people, it may be a sign of idiopathic hypersomnia (HI), a condition that leaves them exhausted even if they sleep well.

Sarah Morgan, 41, an administrative assistant from County Durham, first noticed constant daytime exhaustion when she was taking her GCSEs. “I thought I was just stressed,” she recalls. Even after a good night’s sleep, “it was almost impossible to keep my eyes open.”

In fact, it was a hallmark of IH. Affected people may still need naps during the day after sleeping more than ten hours a night. Severe cases may sleep up to 18 hours a day.

People with 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 losing objects – as excessive fatigue means people experience “micro-sleeps” lasting several seconds during which they perform activities without being aware of what they are doing.

“HI is under-recognized and often disabling,” says Dr Paul Reading, a neurologist and hypersomnia (excessive sleepiness) expert based at South Tees NHS Foundation Trust. “It massively 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 affected people end up with medications they don’t need, that cause side effects, or their problems are dismissed as “laziness.”

Despite being intensely sleepy, 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 nap and sleep soundly, even though I had slept well the night before.”

After repeated visits to the GP, who carried out blood tests to check for conditions that could cause fatigue, such as anemia, Sarah was told she was “just young and tired” and that she had to “keep going”.

Excessive daytime sleepiness is usually a common symptom and can be linked to insufficient quality or quantity of sleep, says Dr Alanna Hare, a consultant at the Royal Brompton and Harefield hospitals who specializes in sleep and breathing.

Dr Alanna Hare, consultant at the Royal Brompton and Harefield hospitals

Dr Alanna Hare, consultant at the Royal Brompton and Harefield hospitals

The causes are many, ranging from obstructive sleep apnea (when breathing stops repeatedly during the night) to a neurological disorder such as narcolepsy, medications or psychiatric disorders, adds Dr. Hare.

First identified in the 1970s, IH affects around one in 25,000 adults, although Dr Reading estimates the true figure is one in 5,000 adults. “It is slightly more common in women, with peak incidence in adolescents, although it is often not diagnosed for many years.”

The disease is only diagnosed when other possibilities have been ruled out. (Idiopathic means no known cause.)

“We really don’t know what’s behind it,” says Dr. Reading. “Brain scans looking at major sleep centers, such as the hypothalamus, are normal.”

There are, however, some distinctive features. “IH is best described as a syndrome of excessive need for sleep, such that subjects have excellent nighttime sleep, often achieving 9 to 11 hours of good quality sleep, but nevertheless require naps, usually unscheduled, during the day,” he explains. Another sign is microsleep, which is a period of time of about three seconds “when a person seems awake but is not completely awake.”

“Losing items around the house or putting house keys in the refrigerator can be a sign of such mistakes.”

These interruptions 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.

“Drowsiness associated with IH is also different from the ‘fatigue’ that people feel after demanding mental or physical activity. For example, patients with chronic fatigue syndrome usually do not fall asleep if they are inactive or at rest, whereas IH patients do so,” he says. .

Dr Reading adds: “Patients often rely on a number of awakenings, reporting severe ‘sleep inertia’ or ‘sleep drunkenness’ in the morning and feeling like ‘zombies’ for about an hour. This is often the worst symptom and the most difficult to treat.

And unlike someone who simply isn’t a “morning person,” who will generally feel more alert as the day progresses, someone with IH will remain tired all day.

This daytime fatigue can make it difficult to maintain a job – as Sarah discovered when she reached her 20s.

“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 university assignments that made me realize that I had a serious problem and that it couldn’t just be due to my attitude – which was a common response from most people around me.”

Beginning to worry that something was seriously wrong, at age 21 she visited another GP.

“I wouldn’t go out or date because I was always tired and I avoided 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 IH.

Although diagnosis relies largely on the patient’s description of symptoms, overnight tests in a sleep laboratory can help: they show whether a person is getting good quality sleep and can rule out conditions such as sleep apnea. sleep. How quickly a patient falls asleep is also assessed.

“Most patients with IH take an average of seven minutes or less to settle,” says Dr. Reading. (Ten minutes or more is considered normal). Nighttime testing can also reveal other signatures of IH, including “excessive slow-wave sleep (deep sleep) that continues late into the night,” says Dr. Reading. “In most people, the deepest stages of sleep occur during the first two hours after going to bed, but in IH, deep sleep can continue or recur late at night and interfere an easy awakening.”

Dr Hare adds: “As we do not yet fully understand the underlying disease process and we do not have biomarkers, it is very difficult to make a definitive diagnosis.”

This also means that treatment for IH is all about the symptoms.

Besides psychostimulants (amphetamine-like drugs), there are newer drugs such as modafinil (used to treat ADHD) and Wakix (developed for narcolepsy). “These newer drugs work specifically on the ‘arousal mechanism’ part of the brain and have fewer side effects, for example on the heart, than amphetamines,” explains Dr Reading, who he says do not are no longer the first-line treatment, but can be prescribed as a back-up option.

“Most patients improve with medication, but reaching ‘normal’ is relatively rare,” he adds.

Sarah did not feel well on the prescribed amphetamines: “I was nervous, I was talking so fast that people couldn’t keep up. It kept me awake, but changed my personality: I felt like I was always running through life.

She took them for six years and also tried Wakix, but stopped because of the side effects – extreme headaches, vision problems and a rapid heart rate – and because she started trying to start a family.

She had her first baby in 2014 and became a mother of three. “Being a mother of young children when all you want to do is sleep was horrible. Honestly, I don’t know how I stayed awake.

She says she was also very lonely as some family and friends doubted her diagnosis, telling her to “get through it – luckily my partner was really supportive”.

Lack of understanding about this condition contributes to severe frustration, “which can progress to significant mood disorders such as anxiety,” says Dr. Reading. “The resulting low mood or anxiety is then presumed to be the cause of excessive sleepiness – but there is no evidence that depression causes true hypersomnolence (excessive sleepiness), it is almost invariably l ‘reverse!”

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 work schedule, Dr. Reading says.

In addition to appropriate medication, a sleep specialist may be able to advise you on lifestyle changes that might help: from meal timing to, if possible, sticking to regular sleep and wake times. The good news is that “in my experience, HI improves as people get older,” says Dr. Reading.

Meanwhile, Sarah is doing her best without medication. She manages to work part-time, but still struggles.

“No matter how much sleep I get at night, I’m exhausted by mid-morning,” she says. She started a Facebook support group for other sufferers, Idopathic Hypersomnia UK.

She adds: “One of the hardest things is that when you explain it to people, they still don’t believe you.”

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