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 needs. However a couple of us IH patients have decided to do our own research based upon a personal situation for an unrelated disorder. This led us to look at [...]
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 of patients. EU antitrust commissioner, Margrethe Vestager, said that Teva pharmaceuticals and Cephalon, a company it later acquired, must pay 60.5 million euros ($72 million) for agreeing between themselves to [...]
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 and 2 are planned a month. The first is on the 2nd Tuesday at 6.30pm UK / 7.30 Central Europe time. There is also one on the following Saturday at [...]
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 run with the help of Hypersomnolence Australia who have given access to their Zoom account Please email me on matt@hypersomnolenceaustralia.org.au for an invite
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 general and from Europe. Both have the same aim of sorting out the muddle in ICSD-3. and are authored by experts in our fields, so they are worth listening to. [...]
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 using CPAP while symptomatic, theoretically making spread more likely, but the bigger issue is of comorbidities like hypertension and heart disease associated with OSA" If you have other comorbidities, then [...]
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. Yes, I keep to a regular sleep schedule, but the rest? Is sleep hygiene relevant to IH following a diagnosis? I can have strong coffee before bed, and the TV [...]
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 the scientific development and genomics but it has been very useful to meet others working to improve the treatment of rare dieases in the UK. I've made some interesting contacts [...]
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 microsleeps, poor reaction times, and best of all, the impact of sleep deprivation on our diet
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 numbers, and do not care - all are welcome to come and feel a little less on their own.