Living with Mesial temporal lobe epilepsy with hippocampal sclerosis
A rare epilepsy with seizures starting in the inner part of the temporal lobe, linked to scarring in the hippocampus.
Understanding Mesial temporal lobe epilepsy with hippocampal sclerosis
It includes scarring (sclerosis) of the hippocampus, usually on one side. It often follows an early event like febrile seizures, low oxygen, brain infection, or head injury in the first five years of life, then a period without seizures. Typical seizures begin with an aura, such as a rising stomach feeling, followed by lip smacking or chewing and staring. GARD says seizures are first easily controlled with medicine, then often become harder to control, with memory and behavior changes.
Signs & symptoms
GARD doesn't list a separate symptom list, but its summary describes these:
- Seizures that begin with an aura (such as a rising stomach feeling)
- Lip smacking, chewing, or other repeated movements
- Staring or loss of awareness
- Confusion after a seizure
- Memory problems
- Behavior changes over time
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
It is often linked to an early event like febrile seizures, low oxygen, brain infection, or head injury. Changes in genes (also called variants) are listed. GARD does not name a specific gene.
Also known as: hippocampal sclerosis-related mesial temporal lobe epilepsy; hs-mtle; mtle-hs; mtle-hs - mesial temporal lobe epilepsy with hippocampal sclerosis
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 Mesial temporal lobe epilepsy with hippocampal sclerosis.
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