Living with Temporal lobe epilepsy
A form of epilepsy in which repeated seizures start in the brain's temporal lobe.
Understanding Temporal lobe epilepsy
Most seizures begin in the inner part of the temporal lobe. A wide range of experiences can come with them, including illusions, hallucinations, altered awareness, and emotional feelings. Most complex partial seizures start in the temporal lobes. Seizures may be of unknown cause, familial, or related to an identified disease or lesion.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes:
- Repeated seizures
- Illusions
- Hallucinations
- Changes in awareness
- Emotional feelings during a seizure
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
Changes in genes (variants) can cause some cases, and seizures may be of unknown cause, familial, or tied to an identified disease. GARD doesn't list which gene.
Also known as: epilepsy of temporal lobe; epilepsy, familial temporal lobe; epilepsy, temporal lobe; familial temporal lobe epilepsy syndrome; temporal lobe epileptic seizure; temporal lobe seizure
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 Temporal lobe epilepsy.
Explore research for Temporal lobe epilepsy
Explore actively recruiting Temporal lobe epilepsy studies with HealthSpark.
Find actively recruiting studies for Temporal lobe epilepsy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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