Living with Reversible cerebral vasoconstriction syndrome
A rare condition of the brain's blood vessels that causes severe headaches and temporary narrowing of arteries.
Understanding Reversible cerebral vasoconstriction syndrome
It can come with or without symptoms such as weakness or seizures. The narrowing in the arteries is reversible. It may happen on its own or be triggered, most often after childbirth or by certain substances such as illicit drugs and some antidepressants (SSRIs). Stroke is the major complication. It usually starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sudden, severe headache (thunderclap headache)
- Repeated headache attacks
- Migraine
- Narrowing of brain arteries (vasospasm)
- Brain imaging changes
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
GARD says it may occur on its own or be triggered, most often by childbirth or by substances that act on blood vessels. It does not list a gene.
Also known as: rcvs
Patient organizations
Rare-disease groups that can help
- 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 Reversible cerebral vasoconstriction syndrome.
Explore research for Reversible cerebral vasoconstriction syndrome
Explore actively recruiting Reversible cerebral vasoconstriction syndrome studies with HealthSpark.
Find actively recruiting studies for Reversible cerebral vasoconstriction syndrome 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Reversible cerebral vasoconstriction syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Reversible cerebral vasoconstriction syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Reversible cerebral vasoconstriction syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.