Updated: Aug 21
On the 6 October we shared a video on our social media of Dr. David Rye’s presentation at the 2018 Hypersomnia Foundation Conference. If you missed it you can view it here
Dr Rye spoke of the progress on many fronts including awareness, diagnostics and causes. He highlighted the increased attention at international sleep conferences including the World Sleep Congress 2017 where there was a very well attended symposium on Idiopathic Hypersomnia. Prof Karel Sonka used my Idiopathic Hypersomnia Review as a reference, you can read it here. It contains some of the issues that were discussed at the symposium. The image below are quotes from the symposium which are similar to what researchers said to me during discussions I had with them when writing my review.
Dr Rye went on to discuss the very important distinction between narcolepsy and Idiopathic Hypersomnia. “Narcolepsy attacks the sleep whereas Hypersomnia is prolonged sleep… and a perpetual sleepiness with a fog brain that hangs over… this is a very important distinction”. He said that this distinction is not greatly appreciated by many physicians. He discussed the problem that not all hypersomnia is Idiopathic Hypersomnia and that the challenge is for clinicians to know what is Idiopathic Hypersomnia and what isn’t. The ICSD3 provides 3 pathways to diagnosis but with no guarantee that it results in the same disease in each case. "Does a common biology hide behind each door?”
The MSLT is no longer considered the “gold standard”. It is not an appropriate diagnostic tool for Idiopathic Hypersomnia or Narcolepsy but the challenge is “what’s going to replace it?... We need alternative strategies “
Many non-complaining population controls as well as subjects with Chronic Fatigue Syndrome meet MSLT criteria for Idiopathic Hypersomnia, however they don't have Idiopathic Hypersomnia.
“How many people do you think fall asleep faster than 8 mins if I just grab them off the street and put them on this test? Like 22%. Do they all have Idiopathic Hypersomnia?” No. “We have to be aware of the overuse of the term (Idiopathic Hypersomnia), (and) misappropriate use if we are using this test”. Dr Rye talks about possible alternatives to the MSLT and the research that is being done to explore these possibilities. He also gives a brief update on the treatment for Idiopathic Hypersomnia but adds that at least 35% “will not respond to modafinil and traditional treatments”. He gives an overview of agents that act as antagonists to GABA-A receptors (Flumazenil and Clarithromycin), including information on prescribing data in the US. I am sometimes asked about these medications in Australia, while there is no such data in Australia I can tell you that any GP can prescribe Flumazenil and Clarithromycin. Clarithromycin can be dispensed simply by any pharmacy. Flumazneil can be prescribed in lozenges and a cream formula as it is in the US. This needs to be prepared by a compounding pharmacy. Your GP should be able to help you arrange that.
Clinic trials for Idiopathic Hypersomnia
The positive take away from the video is that we have come a long way. There is still much we don’t know however we now have several research groups interested in finding biomarkers, more appropriate testing methods and better treatments. I attended the Australasian Sleep Association (ASA) conference during 17-20th October. I was a presenter at a short course "Assessment and Treatment of Excessive Daytime Sleepiness: Risk, Rewards and Patient Perspectives on Stimulant Use”. My presentation was titled "Challenges from the perspective of advocacy and support groups". The ASA conference rarely has anything on Narcolepsy and usually nothing even closely related to Idiopathic Hypersomnia so this was a positive change. I was also an exhibitor in my role with Sleep Disorders Australia where I also flew the flag for IH. I will be writing about this and some other updates in my next blog post.