Khaberni - A recent study has revealed a rare condition known as Idiopathic Hypersomnia (IH), where sufferers experience persistent fatigue that does not go away even after long hours of sleep.
According to the NHS, sufferers feel confused and irritable upon waking, without a sense of restfulness, and it is believed that the cause is neurological and has not been officially determined yet.
Hypersomnolence UK reports that there are about 2,500 confirmed cases in the United Kingdom, with thousands more undiagnosed who are unaware that their excessive need for sleep is abnormal, according to "Daily Mail".
IH Symptoms: More Than Just Sleepiness
Sufferers experience a chronic set of symptoms that affect their daily lives, including:
Excessive sleepiness during the day
Long sleep at night without feeling rested
Severe grogginess upon waking (sleep inertia)
Long naps that do not provide refreshment
Difficulty concentrating and thinking
IH differs from narcolepsy, as narcolepsy sufferers feel refreshed after sleeping, while sleep does not relieve the feeling of exhaustion for IH sufferers, who describe their brain state as constantly foggy and confusing.
Patient Experiences at the Heart of the Study
A team from Takeda Pharmaceuticals analyzed patient experiences online, covering 346 posts, forums, blogs, videos, and podcasts between 2012 and 2022, involving 123 people with IH.
The study found that 87% of them are women, and their ages range from 16 to 60 years old in the United States, Europe, Australia, and Canada.
The results showed that most participants need at least 10 hours of sleep a day, and some need up to 15 hours, compared to the NHS recommendation of 7–9 hours for adults.
Participants reported additional symptoms such as unrefreshing sleep, microsleeps, cognitive difficulties, limited physical energy, and vivid dreams or hallucinations during sleep.
The Impact of IH on Daily Life
IH affects several aspects of sufferers' lives, including:
Mental and emotional health
Daily activities such as exercising or child care
Social relationships and work and study
Physical health
The burden of healthcare and treatment
One patient described the impact of the condition as, "We are called lazy for not showing up, but what others don't see is that we really wanted to be there, but our bodies gave out as if they were cars left by the side of the road."
Medical Challenges
Sufferers face a challenge in not being taken seriously. Treatment is often limited to stimulant medications, but these do not treat the underlying cause of the condition.
The study emphasized the importance of raising awareness of IH, improving medical care, and developing new treatments, noting that data based on patient experiences reflect personal experiences and are not official diagnoses.
