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Multicenter Study
. 2025 Sep 29;272(10):659.
doi: 10.1007/s00415-025-13383-8.

Association of alcohol responsiveness and non-motor symptoms in isolated adult-onset dystonia

Johanna Junker  1   2 , Brian D Berman  3 , Inke R König  4 , Marie Vidailhet  5   6 , Emmanuel Roze  5   6 , Joel S Perlmutter  7 , H A Jinnah  8 , Norbert Brüggemann  9   10 ; Dystonia Coalition Investigators
Affiliations
Multicenter Study

Association of alcohol responsiveness and non-motor symptoms in isolated adult-onset dystonia

Johanna Junker et al. J Neurol. .

Abstract

Objective: About 30% of patients with isolated adult-onset dystonia report an improvement of their motor symptoms after the consumption of alcohol. In this cross-sectional study, we sought to investigate whether the observed improvement is attributable to the anxiolytic, euphoric, and analgesic properties of alcohol, rather than or in addition to its effect on dystonic movements, as psychiatric symptoms and pain frequently occur in dystonia patients and as emotional stress is a well-established trigger for symptom exacerbation.

Methods: We analyzed data from 339 prospectively enrolled participants with recently diagnosed isolated dystonia (mean age: 55.2 ± 12.5 years, 228 female) of the Natural History Project of the Dystonia Coalition, a large international multicenter study. Alcohol responsiveness was determined by patients´ self-report. Symptoms of depression, as well as generalized and social anxiety, were assessed using the Hospital Anxiety and Depression Scale and the Liebowitz Social Anxiety Scale. Severity of pain was measured using question 21 of the RAND 36-Item Health Survey.

Results: Participants with more severe pain reported greater response to alcohol than those with less severe pain (p = .004), whereas symptoms of depression (p = .986), generalized anxiety (p = .395) and social anxiety (p = .953) were not associated.

Conclusion: Alcohol responsiveness in isolated dystonia is associated with higher levels of pain, whereas self-reported alcohol-related improvements in dystonic movements or tremor do not depend on the euphoric or anxiolytic effects of alcohol. This finding underscores the potential role of pain management in alleviating motor symptoms in dystonia.

Keywords: Alcohol responsiveness; Dystonia; Non-motor symptoms; Pain.

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Conflict of interest statement

Declarations. Conflicts of interest: Johanna Junker: Financial interests: She was supported by the Michael J. Fox Foundation (Data Community Innovators Program) and received a Family Mobility Grant from the University of Luebeck. Non-financial interests: none. Brian D. Berman: Financial interests: He has received research grant support from the Dystonia Coalition (receives the majority of its support through NIH grant NS065701 from the Office of Rare Diseases Research in the National Center for Advancing Translational Science and National Institute of Neurological Disorders and Stroke), National Institutes of Health, the Benign Essential Blepharospasm Research Foundation, Parkinson’s Foundation, VCU School of Medicine, Administration for Community Living, and Dystonia Medical Research Foundation. He has served as a consultant for the Dystonia Medical Research Foundation and has received honoraria from the International Parkinson and Movement Disorder Society. Non-financial interests: He currently serves on the Medical and Scientific Advisory Council of the Dystonia Medical Research Foundation as well as the director of the Medical Advisory Board of the Benign Essential Blepharospasm Research Foundation and a member of the National Spasmodic Torticollis Association. Inke König: Financial interests: She received research grant support from the BMBF (Bundesministerium für Bildung und Forschung—Federal Ministry of Education and Research), the DFG (Deutsche Forschungsgemeinschaft—German Research Foundation), and the DKH (Deutsche Krebshilfe—German Cancer Aid). Non-financial interests: none. Marie Vidailhet declares that she has no conflict of interest. She has no relevant financial or non-financial interests to disclose. Emmanuel Roze: Financial interests: He received honorarium for speech from Orkyn, Aguettant, Elivie, Merz-Pharma, Janssen, Teva and for participating in advisory boards from Merz-Pharma, Elivie, Teva, and BIAL. He received research support from Merz-Pharma, Orkyn, Elivie, Everpharma, AMADYS, Aguettant, ADCY5.org, Fonds de dotation Patrick Brou de Laurière, Agence Nationale de la Recherche, Dystonia Medical Reasearch Foundation, Hope For Annabel, Cure Alternating Hemiplegia of Childhood Alternating Hemiplegia of Childhood Foundation, Alternating Hemiplegia of Childhood Association of Iceland, Association française de l’hémiplégie alternante, Alternating Hemiplegia of Childhood Kids of the Netherlands, Asociación Española del Síndrome de la Hemiplejia Alternante. Non-financial interests: none. Joel S. Perlmutter: Financial interests: He grants research funding from National Institutes of Health—NIH (National Center for Advancing Translational Sciences—NCATS, National Institute of Neurological Disorders and Stroke—NINDS, National Institute on Aging—NIA): RF1NS075321, NS124789 (Norris), NS097799 (Kotzbauer), R34AT011015 (Earhart, ends 6/30/25), R33 AT010753 (Earhart, ends 6/30/26), R01AG065214 (Foster ends 5/31/2025), NS103957, R01NS103988, NS124738 Campbell/Gratton), NS097437 (Campbell), R21 NS133875 (Black ends 7/31/25), RO1 NS103988 (Tu/Benzinger), RO1NS134586, R21TR004422 (Peterson), R21TR005231 (Peterson). Foundation support: Michael J Fox Foundation, Barnes-Jewish Hospital Foundation (Elliot Stein Family Fund and Parkinson disease research fund), American Parkinson Disease Association (APDA) Advanced Research Center at Washington University, Missouri Chapter of the APDA, Paula and Rodger Riney Fund, Jo Oertli Fund, Huntington Disease Society of America, Murphy Fund, Fixel Foundation, N. Grant Williams Fund, Pohlman Fund, CHDI and Prilenia. He is also co-director for the Dystonia Coalition, which has received the majority of its support through the from National Institutes of Health—NIH (grants NS116025, NS065701 from the National Institutes of Neurological Disorders and Stroke TR 001456 from the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences). Honoraria: He has received honoraria from Cure Huntington’s Disease Initiative—CHDI, Huntington Study Group, Parkinson Study Group, Beth Israel Hospital (Harvard group), Georgetown University, St Lukes Hospital, Dystonia Medical Research Foundation (no honoraria but paid expenses for attending and giving 3 talks at International Dystonia meeting in Dublin and for attending the annual grant review meeting in New Orleans). Non-financial interests: none. H. A. Jinnah: Financial interests: He has active or recent grant support (recent, active, or pending) from the US government (National Institute on Aging—NIH), private philanthropic organizations (Cure Dystonia Now, Lesch-Nyhan Syndrome Children’s Research Foundation), and industry (Abbvie, Addex, Aeon, Motric, Sage, Ipsen, Jazz). Dr. Jinnah has also served on advisory boards or as a consultant for the National Institute on Aging—NIH (CREATE Bio DSMB) and industry (Abbvie, Addex, Ipsen, Merz, and Vima). He has received stipends for administrative work from the International Parkinson’s Disease and Movement Disorders Society. Dr. Jinnah has also served on the Scientific Advisory Boards for several private foundations (Benign Essential Blepharospasm Research Foundation, Dystonia Medical Research Foundation). He also is principle investigator for the Dystonia Coalition, which has received the majority of its support through the National Institute on Aging—NIH (NS116025, NS065701 from the National Institutes of Neurological Disorders and Stroke TR001456 from the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences). Non-financial interests: none. Norbert Brüggemann: Financial interests: He received honaria from Abbott, Abbvie, Biogen, Centogene, Esteve, Ipsen, Merz, Teva, Zambon. Dr. Brüggemann was supported by the Deutsche Forschungsgemeinschaft—German Research Foundation (BR4328.2-2, GRK1957), the Michael J Fox Foundation and the EU Joint Programme—Neurodegenerative Disease Research (JPND). Non-financial interests: none. Ethics approval: The study was approved by the local ethics committees of all clinical sites and performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. Patient consents to participate/publish: All participants gave written informed consent for study participation and for the publication of the data prior to their enrollment.

Figures

Fig. 1
Fig. 1
Estimation of responsiveness of non-motor signs on alcohol
See this image and copyright information in PMC

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