For our latest "Gilles is in the air" episode, we remain...across the pond and get the chance to hear more about premonitory urge, the sensory phenomenon described and characterised in numerous studies and publications for more than 30 years. Our guests today have conducted a scoping review of premonitory urge in primary tic disorders to identify and address limitations and knowledge gaps.  "Knowledge of the clinical characteristics, measurement, and neural mechanisms of premonitory urge has advanced considerably in recent years, but important knowledge gaps remain in each of these domains. Addressing these knowledge gaps will be key to developing effective interventions for premonitory urge."  Jack Wohlgemuth works as a clinical research coordinator at Mount Sinai Hospital in New York City, where he is focused on research related to Tourette syndrome and other neurological movement disorders. He is interested in how the brains of individuals with tic disorders differ in their processing of signals from within the body, and how these differences are related to the uncomfortable sensory phenomena that are often experienced prior to tics (“premonitory urges”). Jack received his BA from Vanderbilt University.  Bio page: https://labs.icahn.mssm.edu/waterslab/team/ Email: john.wohlgemuth@mountsinai.org  David Isaacs, MD, MPH is a movement disorders neurologist and co-director of the Vanderbilt Center for Tourette Syndrome and Other Tic Disorders, a Tourette Association of America Center of Excellence. He provides clinical care to children, adolescents, and adults with tic disorders. His research examines the clinical impact and neurophysiologic correlates of non-motor features of tic disorders.  Bio page: https://www.vumc.org/neurology/person/david-isaacs-md Email: david.a.isaacs@vumc.org Some of the key points we discuss: the goal and the methods of the study as several premonitory urge-measuring scales have been identified, which one is the best to use? prevalence estimates of premonitory urge in individuals with tics have been found between 37% and 93%; which factors influence the presence of the urge? does the premonitory urge depend on the type, the location and the severity of the tics? were the tics or the urges more bothersome? based on several studies, it was mentioned that more severe urges are associated with greater disability; is this controlled with severity of tics and comorbidities? how is such a variability explained in the results of studies that explore the association between urge severity and tic suppression ability? how does the urge seem to impact cognition? which brain areas are activated during the urge and how was this found? which treatment(s) reduce the urge? what knowledge gaps have you identified for future studies? Thank you Jack and David for sharing your findings and expertise with us!  

Our guest today is Rena Zito, associate professor of sociology in the Department of Sociology and Anthropology at Elon University in North Carolina, U.S.A and a person with Tourette Syndrome. Her research focuses on social stigma, including how stigmatised populations form identities, preserve dignity, and combat social exclusion.   Drawing on interviews with 30 adults diagnosed with TS, she explores how this narrow stereotype circulates in media and everyday interactions, and how adults with TS push back against it, sometimes with unintended consequences for those whose tics confirm the stereotype.   Rena concludes that correcting myths about TS is vital, but it shouldn’t come at the expense of people with coprolalia. Advocacy groups, individuals with TS, and medical professionals can foster inclusion by acknowledging the full range of TS experiences and framing coprolalia as one of many possible tic expressions rather than treating it as an unfortunate exception.   Contact Rena Zito: rzito@elon.edu  Bio: https://www.elon.edu/u/news/author/rzito/ View her article: https://www.tandfonline.com/doi/full/10.1080/01639625.2025.2531145   

Our guest today (the episode was recorded in late April 2025) is Dr Noa Benaroya Milstein, Head of the Child Psychiatry Division Schneider's Children Medical Centre of Israel, where she also serves as Head of the Tourette Clinic. She is a Senior Lecturer at the Tel Aviv University Faculty of Medicine and actively involved in local and multi-centre studies specialised in Tourette syndrome and associated disorders.  We talk about first-line pharmacological treatments, co-occurring condition-treatment-prioritisation cases, assessing tic-related impairment, botulinum toxin injections, DBS, promising molecules, the effects of pregnancy and postpartum period on tics and the current landscape and available treatments in Israel.

We are pleased to welcome today Tamara Pringsheim, who is a Professor with the Department of Clinical Neurosciences, Psychiatry, Paediatrics and Community Health Sciences at the University of Calgary. She also works as an evidence-based medicine methodologist for the American Academy of Neurology.   Tamara is the president of the Tourette OCD Alberta Network, a nonprofit organisation that supports people living with Tourette syndrome and Obsessive-Compulsive Disorder in Alberta, and provides education and training on these disorders to healthcare providers.  Suggested article:  "The Impact of Montelukast Duration on the Risk of Neuropsychiatric Disorders in Children with Asthma: A Population-Based Cohort Study" Visit page

A long-awaited episode with Professor Stephen Jackson and Dr Barbara Morera from the University of Nottingham and Neurotherapeutics Ltd.  They have been developing ”a safe and effective non-drug treatment that reduces tics and the urge to tic, through gentle stimulation of the median nerve in the wrist”. We are grateful to them for taking the time to answer very important questions that help us understand the effect of median nerve stimulation on tic suppression.

Our guest for the 7th episode of "Gilles is in the air" is Dr Anna Castrioto from the Grenoble Alps University Hospital in France. View her research works.  We talk about hormonal changes and tics, contraception methods in association with anti-tic treatments, tic changes during pregnancy and post-partum, treatments that are not recommended during pregnancy and the ones that are harmless.We address the same questions in relation to breast-feeding, enquire about concerns for DBS in women with TS during pregnancy and the difficulties they encounter in coping with TS in their role as mothers.

For our 6th episode, Christelle Nilles interviews Lindsay Berg, a special guest, who is very knowledgeable about today's particularly important topic. Lindsay Berg is a Master’s student at the University of Calgary in the Clinical Psychology Program. Her current research focuses on care equity and on examining barriers and facilitators of medical and mental health care for trans and gender diverse youth. She previously worked in the Movement disorders clinic investigating functional tic-like behaviours.   (We apologise for the suboptimal audio quality at certain parts.)

For our 5th episode of "Gilles is in the air", we reach out to parents and teachers to hear about the challenges that they and their children are encountering within the school environment, and the solutions and mechanisms that help them in various situations. Christelle Nilles interviews Lucy Toghill, Education Manager at Tourettes Action UK, Jose Rosa and Phillip Schöne from Spain and New Zealand respectively and currently based in Valencia, and Christina Papakaliati, founder of the newly formed, Tourette Greece.  We are very grateful for their time and willingness to share their stories! Useful links by Tourettes Action UK:  Education link Information for Education Professionals link You may also view Christina Papakaliatis' video recording included in the "TS-underrepresented zones" session at our conference in Varese in June 2024.

For our 4th episode of "Gilles is in the air", Christelle Nilles talks to Professor David Mataix-Cols who works at the Department of Clinical Neuroscience at the Karolinska Institutet in Stockholm, as a Professor of Child and Adolescent Psychiatric Science.  We are delighted to hear about his very important article “Early-Life and Family Risk Factors for Tic Disorder Persistence into Adulthood”, published in Movement Disorders in 2023. 

Inspiring, honest and enlightening stories For our 3rd "Gilles is in the air episode", we welcome E.G. Gidner (USA), Devyn LaCroix (USA) and Paul Stevenson (UK). We discuss amongst other things about the chronology of their first tics, if/how bothersome they were, how they were perceived by their close ones, the diagnosis –the announcement and its effect, the term "Tourette", available resources and the current landscape; acceptance and understanding. To find out more about our guests: E.G Gidner, X, LinkedIn, Facebook Devyn LaCroix Paul Stevenson, X, LinkedIn, Facebook E.G., Devyn, Paul, thank you for sharing your stories with us! 🙏

For our second episode of "Gilles is in the air", Christelle Nilles co-hosts the interview with Dr Natalia Szejko and together they ask important questions on cannabis-based medicines as a treatment strategy for improving tics. Our guest today, is Professor Kirsten Müller-Vahl from the Hannover Medical School, specialised in neurology and adult psychiatry. Over the past 30 years, she has investigated Tourette syndrome in more than 3,000 patients. She is the President of the International Alliance for Cannabinoid Medicines (IACM), and past Chair of the ESSTS.   References, studies and papers cited: CANNA-TICS: Efficacy and safety of oral treatment with nabiximols in adults with chronic tic disorders – Results of a prospective, multicenter, randomized, double-blind, placebo controlled, phase IIIb superiority study. Link Abi-Jaoude E, Bhikram T, Parveen F, Levenbach J, Lafreniere-Roula M, Sandor P. A Double-Blind, Randomized, Controlled Crossover Trial of Cannabis in Adults with Tourette Syndrome. Cannabis Cannabinoid Res. 2023 Oct;8(5):835-845. doi: 10.1089/can.2022.0091. Epub 2022 Aug 30. PMID: 36040329. Mosley PE, Webb L, Suraev A, Hingston L, Turnbull T, Foster K, Ballard E, Gomes L, Mohan A, Sachdev PS, Kevin R, Gordon R, Benson M, McGregor IS. Tetrahydrocannabinol and Cannabidiol in Tourette Syndrome. NEJM Evid. 2023 Sep;2(9):EVIDoa2300012. doi: 10.1056/EVIDoa2300012. Epub 2023 Jun 7. PMID: 38320199. Müller-Vahl KR, Pisarenko A, Ringlstetter R, Cimpianu CL, Fremer C, Weidinger E, Jenz EB, Musil R, Brunnauer A, Großhennig A. The Effect of Nabiximols on Driving Ability in Adults with Chronic Tic Disorders: Results of a Substudy Analysis of the Double-Blind, Randomized, Placebo-Controlled CANNA-TICS Trial. Cannabis Cannabinoid Res. 2024 Jan 23. doi: 10.1089/can.2023.0114. Epub ahead of print. PMID: 38265476. Anis S, Zalomek C, Korczyn AD, Lassman S, Rosenberg A, Gurevich T. Licensed Medical Cannabis Use in Gilles de la Tourette Syndrome: A Retrospective Long-term Follow-Up. Cannabis Cannabinoid Res. 2023 May 12. doi: 10.1089/can.2022.0281. Epub ahead of print. PMID: 37172308.

For 2024 we introduce "Gilles is in the air", our new podcast series hosted by Christelle Nilles. We discuss the latest findings on Tourette syndrome, share stories, and create connections. Every month, (we are only warming up!), we will talk about tics, associated comorbidities and lived experiences; our episodes are aimed at researchers, clinicians, patients and their families. We shall interview authors whose papers have caught our attention, discuss hot topics that may seem controversial, share different ways of educating the community on TS and hopefully, we will all learn something about Tourette that we had yet to discover. So please, tune in, turn up the volume, and keep on listening… 🎧 And if you find the episode interesting, hit subscribe and please share!

For the first episode of "Gilles is in the air", Christelle Nilles talks to Dr Andreas Hartmann, a movement disorder neurologist at the Pitié Salpêtrière Hospital in Paris, France and coordinator of the French Centre of Excellence (centre de référence) for Tourette syndrome. References, studies and papers cited: Fat MJ, Sell E, Barrowman N, Doja A. Public perception of Tourette syndrome on YouTube. J Child Neurol. 2012 Aug;27(8):1011-6. doi: 10.1177/0883073811432294. PMID: 22821136. Müller-Vahl KR, Sambrani T, Jakubovski E. Tic disorders revisited: introduction of the term "tic spectrum disorders". Eur Child Adolesc Psychiatry. 2019 Aug;28(8):1129-1135. doi: 10.1007/s00787-018-01272-7. Epub 2019 Jan 19. PMID: 30661132; PMCID: PMC6675752. Prevalence of tic disorders: a systematic review and meta-analysis: Knight T, Steeves T, Day L, et al. (2012). Prevalence of Tic Disorders: A Systematic Review and Meta-Analysis. Pediatric Neurology, 47(2), 77–90. DOI  Review of prevalence of coprolalia in Tourette syndrome (TS) : Robertson MM, Eapen V, Singer HS, et al. Gilles de la Tourette syndrome. Nat Rev Dis Primers 2017;3(1):16097. Representation of coprolalia in the media: Calder-Sprackman, S., Sutherland, S., & Doja, A. (2014). The Portrayal of Tourette Syndrome in Film and Television. Canadian Journal of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, 41(02), 226–232. doi:10.1017/s0317167100016620  https://tourette.org/resource/understanding-coprolalia/ https://tourette.org/momdad-kid-tourettes/  "Is it time to rename Tourette"? Controversy session followed by a poll at 12th European Conference on Tourette Syndrome & Tic Disorders in Hannover, Germany. (2019)  

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