Tolosa-Hunt Syndrome (THS) is a rare condition characterized by painful ophthalmoplegia (paralysis and/or weakness of the eye muscles). Onset can occur at any age.
Signs and symptoms include a constant pain behind the eye; decreased eye movements; and signs of cranial nerve paralysis such as drooping of the upper eyelid (ptosis), double vision (diplopia), large pupil, and facial numbness. Although it is considered a benign condition, permanent neurologic deficits can occur and relapses are common.
The features of THS are caused by inflammation of the cavernous sinus (an area at the base of the brain) but the underlying cause of the inflammation is unknown. Left untreated, symptoms may resolve spontaneously after an average of about eight weeks. Treatment may include use of glucocorticoids or other immunosuppressive therapies.
SYMPTOMS OF THIS DISEASE
- constant pain behind the eye
- double vision
- decreased eye movement
- large pupil
- drooping of the upper eyelid
- facial numbness
OUR DISEASE REPRESENTATIVES
Have this disease?
We are looking for someone to be the point of contact for this disease page. If you are interested and willing to help provide resources and support for additional questions about someone living with this disease, then please contact us here.
- Complete Blood Count
- Comprehensive Metabolic Panel
- Erythrocyte Sedimentation Rate
- Antibody Test
- Mycophenolate mofetil
Left untreated, symptoms may resolve spontaneously after an average of about eight weeks. Glucocorticoids have long been the recommended treatment for Tolosa Hunt syndrome.
Little consideration has been given to alternative therapies, probably due to the typical rapid response to glucocorticoids (pain usually resolves within 24 to 72 hours after starting treatment). However, there are little data other than case series to determine the most effective dose, the route and schedule of administration, or the length of therapy. Furthermore, while it is known that glucocorticoids relieve the pain associated with the condition, there is no definitive evidence that associated cranial neuropathies recover any faster with or without treatment.
Here are some great websites, authors, podcasts and other resources to help you navigate your Autoimmune Disease.
These are the women that have shared their autoimmune journey with us. Please take a moment to read some of their nrave, honest and revealing stories about their diagnosis, successes, hardships and their lives.