Overview
Primary orthostatic tremor (also called orthostatic tremor or OT) is a rare movement disorder that mainly affects the legs and trunk when a person stands still. The hallmark symptom is a feeling of unsteadiness or shakiness in the legs upon standing, which usually improves when walking or sitting down. The tremor is very fast — typically between 13 and 18 cycles per second — which is much faster than most other types of tremor. Because of this high frequency, patients often cannot see the tremor but instead feel a strong sense of instability, as if their legs might give way. Many people describe it as a vibration or buzzing sensation in their legs. Primary orthostatic tremor usually begins in middle age or later and tends to slowly worsen over time. It can significantly affect quality of life because standing in one place — such as waiting in line, cooking at a stove, or standing at a counter — becomes very difficult. Some patients also develop tremor in their arms or hands. The exact cause of primary orthostatic tremor is not well understood, but it is thought to involve abnormal activity in brain circuits that control movement and balance. Treatment is challenging, as the condition often does not respond well to standard tremor medications. Clonazepam and gabapentin are the most commonly used medications and may provide partial relief. Other drugs such as primidone, valproic acid, and levodopa have been tried with variable success. Research into better treatments is ongoing.
Also known as:
Key symptoms:
Feeling of unsteadiness or shakiness when standing stillSensation of vibration or buzzing in the legs while standingFear of falling when standing in one placeLegs feeling like they might give wayDifficulty standing in line or at a counterImprovement of symptoms when walking or sitting downTremor in the hands or arms in some casesStiffness or tightness in the legsAnxiety about standing in public placesProgressive difficulty with balance over timeFatigue in the legs after standing
Clinical phenotype terms (7)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsStanford University — NA
University of Washington — NA
Roswell Park Cancer Institute — EARLY_PHASE1
Johns Hopkins University — PHASE1
University of Pittsburgh — NA
Medical University of South Carolina — PHASE2
Roswell Park Cancer Institute
Elazığ Mental Health and Diseases Hospital
Medical University of South Carolina — NA
Hannah Harris — EARLY_PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Primary orthostatic tremor.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Primary orthostatic tremor.
Community
No community posts yet. Be the first to share your experience with Primary orthostatic tremor.
Start the conversation →Latest news about Primary orthostatic tremor
Disease timeline:
New recruiting trial: MIVetsCan: Can-Coach Trial (Phase 2)
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Study of Oral Fluid Testing Approach
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Cannabis Reduction and Functional Outcomes
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Cannabis Use and Outcomes in Black and White Patients With Cancer
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Online Brief Advice Intervention for Heavy Cannabis Users
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Cannabis Observations on Brain Waves, Retrieval, and Attention: Experiment 3
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Impact of Cannabis Use During Third Molar Surgery
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: CHOICES-TEEN Randomized Controlled Trial
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Carcinogen and Toxicant Exposure Among Young Adults Who Co-Use E-cigarettes and Cannabis (Co-Tox Study)
A new clinical trial is recruiting patients for Primary orthostatic tremor
New recruiting trial: Targeting Insomnia to Improve Outcomes in Adults With Problematic Cannabis Use
A new clinical trial is recruiting patients for Primary orthostatic tremor
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How certain is my diagnosis, and were the EMG findings consistent with primary orthostatic tremor?,Which medications are most likely to help my symptoms, and what side effects should I watch for?,Would physical therapy or balance training be helpful for me?,Are there any clinical trials or new treatments being studied for this condition?,What assistive devices might help me in my daily life?,How is this condition likely to change over time in my case?,Should I see a movement disorder specialist for ongoing management?
Common questions about Primary orthostatic tremor
What is Primary orthostatic tremor?
Primary orthostatic tremor (also called orthostatic tremor or OT) is a rare movement disorder that mainly affects the legs and trunk when a person stands still. The hallmark symptom is a feeling of unsteadiness or shakiness in the legs upon standing, which usually improves when walking or sitting down. The tremor is very fast — typically between 13 and 18 cycles per second — which is much faster than most other types of tremor. Because of this high frequency, patients often cannot see the tremor but instead feel a strong sense of instability, as if their legs might give way. Many people descri
How is Primary orthostatic tremor inherited?
Primary orthostatic tremor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Primary orthostatic tremor typically begin?
Typical onset of Primary orthostatic tremor is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Primary orthostatic tremor?
Yes — 1 recruiting clinical trial is currently listed for Primary orthostatic tremor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Primary orthostatic tremor?
8 specialists and care centers treating Primary orthostatic tremor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.