Living with Herpes simplex encephalitis
A rare brain inflammation caused by the herpes simplex virus, with headache, fever, and behavior changes.
Understanding Herpes simplex encephalitis
People may have a headache and fever for up to 5 days, followed by personality and behavior changes, seizures, hallucinations, and changes in alertness. Most cases involve herpes simplex virus type I (the cause of cold sores). Rare cases involve type II. It is not well understood why some infected people develop it, and gene changes may play a part in some cases.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Fever
- Seizures
- Changes in alertness or consciousness
- Nausea and vomiting
- Stiff neck
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 allergy and immune system specialists, brain and nervous system specialists, genetic specialists and seizure and epilepsy specialists.
- 3Consider genetic testing
Changes in UNC93B1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Epilepsy Foundation and Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation, Immune Deficiency 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 Encephalitis411 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
It is caused by the herpes simplex virus, most often type I. GARD says changes in genes such as TLR3, TRAF3, and UNC93B1 have been observed, which suggests a genetic part in some cases.
Also known as: encephalitis caused by herpesviridae; encephalitis caused by herpesvirus; encephalitis, herpes simplex; herpes encephalitis; herpes simplex meningo-encephalitis; herpes simplex neuroinvasion
Patient organizations
- Encephalitis411Herpes simplex encephalitis · United States
- Herpes Cure AdvocacyHerpes simplex encephalitis · Epilepsy Foundation
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Herpes simplex encephalitis.
Explore research for Herpes simplex encephalitis
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