Living with Autosomal dominant nocturnal frontal lobe epilepsy
A family-linked form of epilepsy that causes seizures mostly during sleep.
Understanding Autosomal dominant nocturnal frontal lobe epilepsy
Seizures usually happen during sleep, often in clusters that last from a few seconds to a few minutes. Some people also have seizures during the day. They can begin anytime from infancy to mid-adulthood, but most begin in childhood. Seizures tend to become milder and less frequent with age, and in most people they can be controlled with medication.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Seizures during sleep (nocturnal seizures)
- Involuntary movements
- Repeated, stereotyped movements
- Sudden episodes of stiff or twisted posture (paroxysmal dystonia)
- Waking suddenly, sometimes with wandering
- Warning feelings (aura) such as tingling or fear
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
- 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
ADNFLE runs in families and is inherited in an autosomal dominant way, so a change in one copy of a gene can cause it. GARD does not name a specific gene here.
Also known as: adnfle; adnfle - autosomal dominant nocturnal frontal lobe epilepsy; adshe - autosomal dominant sleep-related hypermotor epilepsy; autosomal dominant sleep-related hyperkinetic epilepsy; autosomal dominant sleep-related hypermotor epilepsy; enfl
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal dominant nocturnal frontal lobe epilepsy.
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