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Where did the name Idiopathic Hypersomnia come from?

Every year on what would be his birthday, March 23rd, we honour a man who dedicated his life to medicine and science. Prof Bedrich Roth (1919-1989) was a renowned neurologist responsible for identifying and naming Idiopathic Hypersomnia. His seminal works over many years on narcolepsy and hypersomnia have left an indelible mark on the history of sleep medicine.

Roth is credited as being a true pioneer in the area of narcolepsy and hypersomnia due to the valuable epidemiological data he compiled on these disorders. Many of his peers regard the book Narcolepsy and Hypersomnia as a true “classic”. Leading narcolepsy researcher Dr Mignot acknowledges that Roth is responsible for the first careful epidemiological studies of narcolepsy and idiopathic hypersomnia and that Roth's work led to the classic diagnostic "narcoleptic tetrad" ie: cataplexy, sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness that is still used today.

In a discussion with Prof Roger Broughton about Bedrich Roth and the importance of Roth's book, Narcolepsy and Hypersomnia he said “it included not only his remarkable progress having worked on the topic for over a quarter of a century but also citation of the world-wide publications on these interesting diseases. Indeed, it made clear that Professor Roth was the first neurologist to specialise more or less exclusively in the area of narcolepsy and hypersomnia. The earliest contributors elsewhere came mainly from Stanford, California, Montpellier France and Bologna, Italy whose first publications were not until the early to mid-1960 ’s. Moreover, Professor Roth clinical experience in the field was vastly greater than that in these other centres. His case series of persons with narcolepsy and cataplexy and of others with symptomatic hypersomnia each ran into the many hundreds of patients a significant proportion of whom he had followed, often with Professor Nevismalova, for several decades. He also had a significant series of patients with idiopathic hypersomnia and a good number of others with recurrent hypersomnia (Klein-Levin syndrome, bipolar disorder and menstrual hypersomnia) which was also unique at the time of his book”.

You can read more about it here, Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia”. And also here, Bedřich Roth: pioneer in Sleep Medicine published in the December 2020 issue of the medical journal, Sleep Medicine.

I have spoken to a few neurological sleep clinician/scientists who had the pleasure of working with or learning under Bedrich Roth and they all remember him fondly as being a doctor that had a deeply caring nature. Prof Karel Sonka "I learned from him many things, most important to listen to the patients". If only there were more doctors like Prof Bedrich Roth!

The first cases of Idiopathic Hypersomnia were described more than 60 years ago. Roth's first book on narcolepsy and hypersomnia was published in 1957 "Narcolepsy and hypersomnia from the aspect of physiology of sleep" (orange book in the above images) making Roth’s work the first in the area of the modern day era narcolepsy and hypersomnia research. This book was later re-written with more of his work added and ​​ published in English (with help from his friend and fellow dedicated neurologist and sleep researcher Prof Roger Broughton) in a book called “Narcolepsy and Hypersomnia” (blue book above). Interesting side note, Prof Roger Broughton was also the first to propose the investigation into the usefulness of GHB/Sodium Oxybate (Xyrem) in the treatment of narcolepsy. His discovery was later documented in the paper "The treatment of narcolepsy-cataplexy with nocturnal gamma-hydroxybutyrate." that was published as far back as 1976.

Mignot, E. Narcolepsy - A Hundred Years of Research. Archives Italiennes de Biologie. 2001; 139: 207-220 Partinen, M. Epidemiological Sleep Research in Europe. European Sleep Research Society 1972 – 2012 40th Anniversary of the ESRS. Regensburg, Bern; 2012 Rye, D. Review of the Idiopathic Hypersomnia Symposium at the World Association of Sleep Medicine Meeting. Hypersomnia Foundation; 2013 Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia" Broughton R, Mamelak M. Gamma-hydroxybutyrate in the treatment of narcolepsy. In: Guilleminault C, Dement WC, and Passouant P, eds. Narcolepsy spectrum New York 1976;659-667.

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