Excessive daytime sleepiness despite sufficient night-time sleep
Idiopathic Hypersomnia; a personal experience
I set up Hypersomnia UK after my own personal experience of getting diagnosed and treated for Idiopathic Hypersomnia in the UK. At that time few information sources existed for this illness mainly in Australia and the USA.
Patients with Idiopathic Hypersomnia have a reduced quality of life. The illness puts pressure on relationships, work and pleasure. Patients are also unlikely to meet another sufferer by chance due to its rarity. This makes for a very isolating illness.
There is scant information on the disorder on the NHS and other National Health bodies websites; often it is covered under part of the symptoms such as the Excessive Daytime Sleepiness (Hypersomnia).
What is Idiopathic Hypersomnia?
Idiopathic Hypersomnia (IH) is a rare Central Nervous System (CNS) disorder. It manifests as a problem with needing too much and inopportune sleep, along with other issues including daytime sleepiness (EDS), which can appear like a loss of alertness rather than sleepiness. This decreased alertness makes it harder to work, drive or have a social life.
A rare disease is one where less than 1 in 2,500 people in the UK or 3 in 10,000 in Europe have it. For IH, that figure is around 1 in 25,000, though the true prevalence, and patient numbers are unknown.
The cause of IH has not been identified at present but it is thought to be a mix of circadian rhythm issues and possible neuropeptide disfunction, leading to the CNS classification.
There is no cure for Idiopathic Hypersomnia at present, but it can be managed. In addition, there are no medications specifically designed, nor prescribed, for it. The main medications are stimulant based, with newer medications becoming available.
For the UK and Europe, all available medications are not on any approved prescribing lists and are only available “off-label”. This means a specialist doctor is required to sign off their use.
This site aims to provide clarity about Idiopathic Hypersomnia in the UK and Europe. It should also help those seeking a diagnosis to advance their case quicker. However, it is not a substitute for professional clinical care.
The key areas covered here are:
What is Idiopathic Hypersomnia and how is it diagnosed in the UK?
What treatment are available, and the issues around them
Ideas about living with the illness
All the information here is from my own research and all opinions are my own.
This is about helping people to make their own informed choices and decisions, not tell them what to do.
If you don’t believe it is right for you, there are other resources out there. Do what you think is in your best interest.