Henry Nicholls is a science writer and narcoleptic, a condition characterised by a frequent and overwhelming need to sleep. The current thinking is that narcolepsy develops in genetically vulnerable individuals when the immune system mishandles an infection.The outcome is an autoimmune attack on a region of the hypothalamus that produces the hormone orexin (aka hypocretin). Orexins are the ‘stay awake’ hormone, in other words they carry a message around the brain ‘stay awake’. In their absence the brain goes to sleep. So what Henry, and other narcoleptics, need is an orexin substitute.
So are drug companies researching this? No, they are trying to find ways of blocking the production of orexin rather than trying to find ways to produce it. Why? Because insomnia is a much bigger problem for people than narcolepsy (there are about 150 times more insomniacs than narcoleptics). In many cases insomnia might be due to an overactive orexin system. The drug company Merck are trialling a drug called Suvorexant which is due to be released in the US later this year. Narcoleptics are going to have to wait.
Henry’s article was published in the New Scientist (24 March 2012) but you can read it here. You can also read Henry’s blog here.
Hi Cara, thank you for this great article about narcolepsy, insomnia and the orexin system. Interesting, I haven’t seen any research suggesting that people with insomnia have overactive orexin systems. You might enjoy my post on the topic: http://julieflygare.com/insomnia-drug-develops-from-narcolepsy-research/.
Narcolepsy is a significant problem with 1 in every 2000 and 3 million people worldwide living with this serious lifelong disorder affecting quaity of life comparably to epilepsy and Parkinson’s disease. However, perhaps your point was that insomnia is more prevalent and therefore a more attractive “problem” to address from the perspective of for-profit pharma companies.
Thanks again! Cheers, Julie
Thank you for complaining about this!
I have narcolepsy and have been interested in P.C.Baier’s study with an ‘Orexin Nasal Spray’ to treat certain symptoms at the microdose level.
The tragedy is worse than you realize because Orexin-A (Hypocretin 1) can pass the blood-brain barrier without difficulty. And labs have been able to synthesize it for over a decade. They don’t need to develop a new drug, they just need to bring a hormone replacement therapy to market.
But, sadly, there is no money in bringing an unpatentable treatment to market for an orphan disease like narcolepsy.
Thanks for listening to my rant,
Eric
PS – P.C.Baier has been continuing research in Germany and has some follow up studies you can find online
That must be so so frustrating for you, and other sufferers.
Cara