Living with Familial hemiplegic migraine
An inherited type of migraine with an aura that includes temporary weakness on one side of the body.
Understanding Familial hemiplegic migraine
Migraines cause intense, throbbing pain, often with nausea and sensitivity to light and sound. They typically start in childhood or the teen years. Before the headache, an aura can cause visual changes and temporary numbness or weakness on one side. Some people have severe episodes with fever, seizures, or prolonged weakness. About 20 percent develop mild, lasting trouble with coordination.
Signs & symptoms
GARD describes these symptoms in its summary:
- Throbbing headache on one side
- Nausea and vomiting
- Sensitivity to light and sound
- Visual aura (blind spots, flashing lights)
- Temporary numbness or weakness on one side (hemiparesis)
- Trouble with speech or confusion during an aura
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Migraine Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: American Migraine 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 American Migraine 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
GARD says it runs in families. It does not name a specific gene in the information provided.
Also known as: fhm; hemiplegic-ophthalmoplegic migraine; hereditary hemiplegic migraine
Patient organizations
- American Migraine FoundationFamilial hemiplegic migraine · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial hemiplegic migraine.
Explore research for Familial hemiplegic migraine
Explore actively recruiting Familial hemiplegic migraine studies with HealthSpark.
Find actively recruiting studies for Familial hemiplegic migraine 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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