Living with Autosomal dominant epilepsy with auditory features
A family-linked form of epilepsy in which seizures cause people to hear sounds like buzzing or ringing.
Understanding Autosomal dominant epilepsy with auditory features
Sounds may be buzzing, humming, ringing, voices, or music. Some people suddenly cannot understand speech before losing awareness. The seizures start in one part of the brain (focal), the lateral temporal lobe. Most are focal aware seizures with no loss of consciousness. Seizures usually begin in adolescence or young adulthood and are usually infrequent and well controlled with medicine.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing sounds during seizures (buzzing, humming, ringing)
- Focal seizures starting in one part of the brain
- Trouble understanding or finding words (aphasia)
- Dizziness or a spinning feeling (less often)
- Visual hallucinations (less often)
- Smell changes (less often)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, genetic specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Epilepsy Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says it runs in families. It is autosomal dominant, meaning one changed copy of a gene can be enough to cause it. GARD doesn't list a gene in this record.
Also known as: adeaf; adlte; adpeaf; autosomal dominant lateral temporal lobe epilepsy; familial epilepsy with auditory features; feaf - familial epilepsy with auditory features
Patient organizations
- Epilepsy FoundationAutosomal dominant epilepsy with auditory features · United States
- Simons SearchlightAutosomal dominant epilepsy with auditory features · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal dominant epilepsy with auditory features.
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