I'm a published author in a medical journal! From a personal stand point, as someone living with IH, I'm proud of that but I also feel a great sense of achievement that I have contributed important information to the literature that has been grossly lacking. I also believe our article helps raise awareness of idiopathic hypersomnia and contributes to giving it the respect that it lacks but so greatly deserves.
I have been working on this project with Roger Broughton MDCM, PhD, FRCP(C), FAASM Professor Emeritus of Neurology and Neuroscience, University of Ottawa, Canada for some time. Roger went through a period of poor health a couple of years ago that had me worrying that we may never start this much less finish it. However, it was very important to both of us that we did so we persevered and here we are, “Bedřich Roth: pioneer in Sleep Medicine” has been published in the Historical Issue of Sleep Medicine. You can read the full article here.
For me personally (and I’m sure this was the case for Roger too) it was important for us to finish this article not only to honour a remarkable researcher and clinician, and to set the record straight because the history books needed this (Professor Roth really was the first in modern day sleep medicine) but also for Bedrich Roth’s family, his loyal friend and co-worker Sona Nevsimalova and his final student Karel Sonka. Roger and I promised them this and I am pleased to know that they are very happy to see it published.
There was another reason I persevered with this project. Years ago (2015) when I wrote a tribute to Bedrich Roth and his landmark book “Narcolepsy and Hypersomnia” I was surprised by the number of people in the medical community particularly (not just people in the idiopathic hypersomnia and narcolepsy communities) who were unaware of not just the history of narcolepsy and hypersomnia and therefore the pioneer, Bedrich Roth’s work, but of the meticulous study of idiopathic hypersomnia (and narcolepsy) over so many years. Research that included hundreds of patients (many of the same patients were studied over the course of 10-20 years). Idiopathic hypersomnia was never a label for people who are sleepy and doctors don’t know why. As Prof Karel Sonka has said “It is a fact that there is a disease producing much longer sleep and greater sleepiness. Morbidly sleepy people are not lazy. Sleepiness is a symptom of the disease”.
Idiopathic hypersomnia is a very real disease. It causes its sufferers to sleep excessively, not just feel sleepy. People with idiopathic hypersomnia don’t know what it feels like to be fully awake - ever. The cognitive dysfunction this causes and the associated depression can be debilitating in itself, never mind the daily struggle to wake up, turn sleep off and stay awake. This is something many people with idiopathic hypersomnia don’t achieve in a day despite extraordinary amounts of good quality sleep. It becomes like Groundhog Day. You write one day off hoping the next will be better but the next day is often no better than the last. This vicious cycle turns into days, weeks, months, and years. Before you know it, you have spent a lifetime sleeping excessively and dragging yourself through a permanent sleepy haze. Professor Roth had the largest material in the world of patients suffering from excessive daytime sleepiness. He knew the signs and symptoms of idiopathic hypersomnia were distinct from narcolepsy, indeed from anything else he had ever seen.
Despite what we know about idiopathic hypersomnia it doesn’t get the same level of respect and attention as other neurological disorders do, including narcolepsy. If I achieve anything with the work I do I want it to be that. I want idiopathic hypersomnia to be respected and acknowledged as the debilitating disease that it is. People with idiopathic hypersomnia should not feel they need to tell people they have narcolepsy (a disorder they don't have) because idiopathic hypersomnia doesn't have the same level of awareness (particularly accurate awareness) and respect narcolepsy (or any other neurological disorder) has.
One of the things I learned through my research with Prof Roger Broughton is that Idiopathic hypersomnia, whether it is with or without long sleep, is not narcolepsy and has no place on a narcolepsy spectrum. Genuine idiopathic hypersomnia (with long sleep) was identified by Prof Bedrich Roth as a standalone independent clinical entity nearly 60 years ago and 21 of the worlds idiopathic hypersomnia and narcolepsy experts confirmed that in two papers published in 2020 (see references below).
In a discussion I had with Prof Yves Dauvilliers (one of the authors of one of those papers) he said that 3-5 years ago he was doing talks about Narcolepsy, “back then this was before the hypocretin discovery and xyrem, my talks were about what needed to done for Narcolepsy. We have moved on. It is time we start doing the same for Idiopathic Hypersomnia. We must move forward”. He (as do many other researchers) firmly believes to do that Narcolepsy and disorders of hypersomnolence must be better defined. They propose three diagnostic categories (with levels of certainty):
1. Narcolepsy 2. Idiopathic hypersomnia 3. Idiopathic excessive sleepiness (with subtypes) = idiopathic hypersomnia without long sleep and narcolepsy without cataplexy/hypocretin (orexin) deficiency Getting back to my article... this is from the summary:
“We believe, for a number of reasons, that Bedřich Roth should be universally considered as the true father of modern sleep medicine. He was the first physician to dedicate his entire career to the study and treatment of sleep disorders. He contributed more than any other physician to the practical aspects such as taking a very careful medical history, doing a thorough physical examination, studying patients with overnight polysomnography, keeping careful records, and finding a more efficient way than the MSLT to quantify excessive daytime sleepiness by introducing the Polygraphic Score of Sleepiness; by his rigorous classification of the hypersomnias; and, above all, by his initiating very early in his career a rational and expanding program of research on narcolepsy and the hypersomnias which began in 1952 and predated all other physicians committed to clinical research on narcolepsy and the hypersomnias by more than two decades. The very roots of Sleep Medicine are therefore European and not North American.” You can read the full article here. We also believe, as do many others, that genuine idiopathic hypersomnia (the second category mentioned above) should be renamed in honour of Bedrich Roth. It is the very least we can do given his unprecedented lifelong dedication and commitment to idiopathic hypersomnia (and narcolepsy) and the profound impact his research had on sleep medicine. I would like to thank Roger Broughton for working with me on this project. Prof Broughton is an esteemed sleep researcher and clinician in his own right. He worked directly with Prof Roth and knew him well so I feel privileged that he shared his experience and knowledge with me. Prof Broughton is also a pioneer in sleep medicine. He was 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." which was published as far back as 1976. I would also like to thank the other researchers/clinicians that are always so generous to me with their time particularly Yves Dauvilliers, Karel Sonka, and Sona Nevsimalova.
Papers mentioned above:
G.J. Lammers, C. Bassetti, J. Dolonc-Grosgel, et al. Diagnosis of central disorders of hypersomnolence: A reappraisal by European experts
Sleep Medicine Reviews volume, 52 (August) (2020), p. 10130610
R. Fronczek, I. Arnulf, C.R. Baumann, K. Maski, F. Pizza, L.M. Trotti To split or to lump? Classifying the central disorders of hypersomnolence
Sleep (2020), pp. 1-8 zsaa044 RELATED POSTS: Where did the name Idiopathic Hypersomnia come from? https://www.hypersomnolenceaustralia.org.au/single-post/2019/03/22/where-did-the-name-idiopathic-hypersomnia-come-from
Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia” https://www.hypersomnolenceaustralia.org.au/single-post/2015/09/01/bed%C5%99ich-roth-his-life-s-work-and-the-35th-anniversary-of-the-book-narcolepsy-and-hyperso