Living with Tolosa-Hunt syndrome
A rare condition with steady pain behind the eye and weak eye muscles, caused by swelling at the base of the brain.
Understanding Tolosa-Hunt syndrome
The features come from swelling in the cavernous sinus, an area at the base of the brain. GARD considers it benign, but lasting nerve problems can occur and relapses are common. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these as signs and symptoms:
- Constant pain behind the eye
- Less eye movement
- Drooping upper eyelid (ptosis)
- Double vision (diplopia)
- Large pupil
- Facial numbness
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 eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and National Headache Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Autoimmune Association, National Headache 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 Autoimmune Association 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
The features are caused by swelling of the cavernous sinus, but GARD says the underlying cause of the swelling is unknown.
Also known as: painful ophthalmoplegia; tolosa hunt syndrome
Patient organizations
- Autoimmune AssociationTolosa-Hunt syndrome · United States
- National Headache FoundationTolosa-Hunt syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Tolosa-Hunt syndrome.
Explore research for Tolosa-Hunt syndrome
Explore actively recruiting Tolosa-Hunt syndrome studies with HealthSpark.
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- 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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