title: Lessons I have learned from my patients: everyday life with primary orthostatic tremor.
abstract: BACKGROUND
  Primary orthostatic tremor is a rare disorder that is still under-diagnosed or misdiagnosed. Motor symptoms are fairly characteristics but the real impact on the patient's every day life and quality of life is under-estimated. The "how my patients taught me" format describes the impact on the patients' every day life with their own words, which is rarely done.
  
  
  METHODS
  A 46 year old lady was diagnosed primary orthostatic tremor (POT) based on the cardinal symptoms: feelings of instability, leg tremor and fear of falling in the standing position, improvement with walking and disappearance while sitting, frequency of Tremor in the 13-18Hz range, normal neurological examination. She gives illustrative examples of her disability in every day life activity (shower, public transportation, shopping). She reports how she felt stigmatized by her "invisible disorder". As a consequence, she developed anxiety depression and social phobia. All these troubles are unknown or under recognized by doctors and family.
  
  
  CONCLUSIONS
  We review the clinical signs of POT that may help to increase the awareness of doctors and improve the diagnosis accuracy, based on the motor symptoms and description of the every day life disability, as reported by the patient. Non-motor symptoms (including somatic concerns, anxiety, depression, and social phobia) should be better considered in POT as they have a major impact on quality of life. Pharmacological treatments (clonazepam, gabapentin) may be helpful but have a limited effect over the years as the patients experience a worsening of their condition. On the long term follow-up, there are still unmet needs in POT, and new therapeutic avenues may be based on the pathophysiology by modulating the cerebello-thalamo-cortical network.
authors.affiliation: Institut National de la Santé et de la Recherche Médicale (INSERM), U 1127, F-75013 Paris, France ; Centre National de la Recherche Scientifique (CNRS), UMR 7225, F-75013 Paris, France ; Sorbonne Universités, UPMC University Paris 06, UMR S 1127, F-75013 Paris, France ; Institut du Cerveau et de la Moelle épinière, ICM, F-75013 Paris, France ; Assistance Publique Hôpitaux de Paris (APHP), Département des Maladies du Système Nerveux, Hôpital Pitié-Salpêtrière, F-75013 Paris, France ; Department of Neurology, Salpetriere Hospital, Bd de l'Hopital, 75013 Paris, France.
authors.forename: Marie
authors.initials: M
authors.lastname: Vidailhet
authors.affiliation: Institut National de la Santé et de la Recherche Médicale (INSERM), U 1127, F-75013 Paris, France ; Centre National de la Recherche Scientifique (CNRS), UMR 7225, F-75013 Paris, France ; Sorbonne Universités, UPMC University Paris 06, UMR S 1127, F-75013 Paris, France ; Institut du Cerveau et de la Moelle épinière, ICM, F-75013 Paris, France ; Assistance Publique Hôpitaux de Paris (APHP), Département des Maladies du Système Nerveux, Hôpital Pitié-Salpêtrière, F-75013 Paris, France.
authors.forename: Emmanuel
authors.initials: E
authors.lastname: Roze
authors.affiliation: Department of Neurology, University of Dijon, Dijon, France.
authors.forename: Lucie
authors.initials: L
authors.lastname: Maugest
authors.affiliation: Centre de Neuroimagerie de Recherche (CENIR), Institut du Cerveau et de la Moelle, ICM, F-75013 Paris, France.
authors.forename: Cécile
authors.initials: C
authors.lastname: Gallea