This week is Idiopathic Hypersomnia Awareness Week. As there are many similarities between idiopathic hypersomnia (IH) and narcolepsy, notably the impact that both these sleep disorders have on education, work and relationships, Narcolepsy UK exists to raise awareness and support all those in the UK with a diagnosis of IH too.
IH is characterised by long sleep duration, typically 11 or more hours a night, yet in spite of what appears to be good quality sleep, people with IH will often struggle to wake up (sleep inertia), experience confusion, disorientation and irritability (sleep drunkenness) and will not feel rested at all. The excessive daytime sleepiness and attendant problems with memory, automatic behaviour, concentration and attention (brain fog) will be familiar to people with narcolepsy, but no amount of napping brings any respite from the near-constant sleepiness of those with IH.
In the medical world, the word “idiopathic” is used to denote a disease for which the cause is not known. This is a problem because in the absence of any identified pathology and any test that might confirm it, people with IH can present their symptoms to a doctor but struggle to be taken seriously. As with narcolepsy, it can take many, many years for a person with IH to obtain a diagnosis and access effective treatment.
For more information on idiopathic hypersomnia, see the Hypersomnia Foundation in the US and Hypersomnolence Australia, organisations with a specific focus on IH. To get involved with Idiopathic Hypersomnia Awareness Week, be sure to check out and share Hypersomnolence Australia’s posts on Facebook, Twitter and Instagram, using the hashtag #LivingwithIH and #LivingWithIdiopathicHypersomnia.
If you live in the UK and have a diagnosis of IH or think you may have the disorder, Narcolepsy UK is here for you. The Narcolepsy UK helpline works to support all aspects of the lives of people with narcolepsy and IH, including securing benefits; since the start of 2021, the charity has successfully overseen awards of over £400,000. You can find out more about Narcolepsy UK on the our website and follow us on Facebook, Twitter and Instagram.