Living with New-onset refractory status epilepticus
A rare, serious brain condition in which a person with no seizure history has long-lasting seizures with no clear cause.
Understanding New-onset refractory status epilepticus
Status epilepticus means one long seizure, or a cluster of seizures with no recovery in between. In NORSE it can last days, weeks, or months and may lead to a coma. Symptoms often start with a mild fever and feeling unwell. A cause is found in about half of people. Common causes include autoimmune disorders and viral brain infection (encephalitis).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated seizures without recovery (status epilepticus)
- Fever
- Problems with thinking (cognitive impairment)
- Seizures that start in one area of the brain
- Facial tics and abnormal head movements
- Seizures that follow a fever-causing infection
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
FamilieSCN2A and 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: FamilieSCN2A, 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 FamilieSCN2A 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
A likely cause is found in about half of people, often an autoimmune disorder or viral encephalitis. Changes in genes such as SCN2A and IL1RN may raise the risk. When no cause is found, it is called cryptogenic NORSE.
Also known as: norse; norse - new-onset refractory status epilepticus
Patient organizations
- FamilieSCN2ANew-onset refractory status epilepticus · United States
- NORSE InstituteNew-onset refractory status epilepticus · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with New-onset refractory status epilepticus.
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