Tolosa-Hunt Syndrome Support Group

My 64 yo mother has been having excrutiating headaches for 6 months. She thought it was allergies and fibromyalgia so only started with Dr. in last 2 months. They thought it was vertebral arteritis but steroids didn't help (50 mg 2x day). After a week of prednisone, she stopped it and repeated seds rate which didn't indicate arteritis. MRI & MRA were basically normal except for some ischemic changes and slight narrowing of carotid on one side. Does this match with TSH or am I barking up the wrong tree?

If it is Tolosa Hunt, prednisone should treat the symptoms and resolve the headache. Prednisone doesn't treat the cause of Tolosa Hunt.If prednisone didn't help then it may not be Tolosa Hunt that is causing your mother's headaches.

I found out that she was only on 50 mg of prednisone. What is the cause of THS and what does treat it?

don't think they know what causes Tolosa Hunt, only that prednisone reduces the inflammation in the cavernous sinus and relieves the headaches.

I have been on the Prednisone for ths for 40 yrs now.Tomorrow I am going to have surgery for the double vision it will be nice to see like normal people.I am hoping that then they can take me off the steriods I have been on Methotrate for 2 yrs.

Karajr... So you've been taking Methotrexate for 2 years and are still taking steroids? I was under the impression that using an Immunosupressive (chemo) medication like Methotrexate would mean you wouldn't have to take steroids. My husband has an appt next month with a Rheumatologist to discuss Immunosuprossive therapy... Have you looked into Radiation (Radio) Therapy?

yea that is the goal by under going the sugery that I just under went is also to correct the double vision.I am at the lowest dose I in a long long time

My husband is just finishing his 3rd week of stepping down from Prednisone. He's been on 40mg for over 15 months and right now he's at 25 mg. The pain returned right away but he's finding some days aren't as bad as others. So far during the step down, he hasn't had any issues with his eyes. He had VI nerve palsy in the fall, but it resolved itself in about a month.

that sounds like what I have been thought. I have been on Prednisone at 100 mg for over a year that step down took for ever and I gain so much weigth and that was before they knew all the side effects.Which I now have.My Prednisone now is at 10 mg and 7.50 every other day. The methotrate has been dc for now but the eye will dectate if I restart it.Good luck.Kathy

My husband has had TH for 6 months now. This morning he had an arteriogram done, which was recommended by his opthamologist. She suspected he might have a carotid cavernous sinus fistula. It turns out he has two, one on each side of the cavernous sinus. This can be treated. Those of you who have not been diagnosed with a cause for the Tolosa Hunt might want to see an up-to-date opthamologist or a neurology opthamologist and ask if a carotid cavernous fistula could be your problem.