Tolosa-Hunt Syndrome Support Group

Hello! I'm Polish.

Headaches began in 2010, had a migraine.

Later joined by double vision, MRI showed nothing beyond the carotid artery. In 2011 the diagnosis of THS. Double vision, drooping eyelids, protrusion of the eyeball, impaired to look upwards and sideways.

Weight filled with nerves III, IV, V and the internal carotid artery.

Treatment: Solu Medrol 5 x 1 mg, the improvement after the first dose, then

encorton (Prednisone) 60 mg decrease in the 5 mg every week, in the alternative potassium and shielding. Then azatropine 1x 50mg for six months.

At present, remained slight infiltration.

Still struggling with side effects of steroids

Regards

(P.S sorry, my English is poor )

Welcome aboard/ Have you had a Spinal tap? What type of doctor(s) are you seeing? Pred is a tough drug but sometimes it is the only hope we have. Race is something we have not talked about, boy/ girl etc… location,,, Have you ever worked at the lab or Pharm site?

Good luck Raimond

Hello Raimond

...Have you had a Spinal tap?...No

( Chest X-ray, ultrasound arteries,4x mri, eeg,emg, ecg, tcd,tomography)

3 years treated for glaucoma - a mistake.

...Have you ever worked at the lab or Pharm site?...No

I do not have vision problems, the worst side effect is a steroid psychosis.

Wow.

We are not doctors here, we just write about what we went through and are going through. Looks like you are doing everything possible. Do you think or have they told you that you may have THS or related problems . Azatropine is one of the drugs they have/had tried with me to get off Pred. I had to stop using Azatropine because of liver failure plus other things. I am on my 4th get off pred. Cellcept which several folks on this web site have tried and also failed. I am keeping my finger crossed and praying that Cellcept works for me. Presently on less then 10 mls a day Pred, and 3000 Mls a day Cellcept.

Good Luck Raimond

ps. sorry, my English is poor also so do not let that stop you using this site if you like....

I am a little scared, because relapses are common.

3 days ago my medication was discontinued (azatriopina) and beta-blockers, see what happens.

I take psychotropic drugs, I have problems urological, gynecological and hormonal.

Waiting for a decision neurologists.

liver is ok ... I explore often

Thank you and good luck