News and comment on Idiopathic Hypersomnia

As many sufferers of IH are aware little original reseach is being undertaken on the disorder; all of our medication is repurposed from Narcolepsy treatments and nothing addresses our specifc [...]

The European Union has fined two pharmaceutical companies for colluding to keep a cheap alternative to a sleep disorder medicine off the market for their profit and at the expense [...]

If you're interested in the EMEA Idiopathic Hypersomnia Google Meets, please come join us, and chat to fellow IH patients and their familes/partners. This is the 4th event so far [...]

We've now got some online virtual meets to help my fellow IH patients stay in contact. These are on the 2nd Wednesday and following saturday of each month. These are [...]

Two papers have come out recently that look at reclassifying the central disorders of hypersomnolence.  They come from two different camps in the field, one narcolepsy focussed, the other more [...]

A senior London sleep doctor informed me (on 21/03) that: "As far as we are aware, IH and narcolepsy not at increased risk. For OSA, there are some issues if [...]

When going through a hypersomnolence sleep diagnosis, we are asked to check out sleep hygiene.  Whilst this is useful in ruling out other disorders it seems pretty pointless going forward.  [...]

I'm attending the UK Rare Disease conference 2019 in Edinburgh today where the UK strategy on managing rare diseases is being discussed.  A lot of the presentations are focussed on [...]

https://www.channel5.com/show/the-science-of-sleep-how-to-sleep-better/ This was on last night (and again next week) and it's a serious look at some complex sleep issues. For anyone with IH, the sleep deprivation piece, talks through [...]

Hi Guys, looking to have local meet in Manchester (UK) on Saturday 26th October, at 2pm in the Foundation Coffee House, Lever st (M1 1JB). I've no idea as to [...]

I've been told - indirectly - that this site is just my view on IH and its presentation (and that other opinions exist on the nature and management of IH).  [...]

The Arise2 trial in the USA is one of the first to look at a new treatment for Idiopathic Hypersomnia, and is still recruiting participants across mainland USA. Pentetrazol - [...]