I was diagnosed with Tolusa Hunt Syndrome November of 2014.  Long story short, I was admitted to the hospital with pain to the left side of my face namely right behind the left brow.  They put me on Morphine for the pain.    I went through MRI, CT scan, blood work only to rule out any other possibilities.  I was referred through a Neurologist to a top notch Neuro-Ophthalmologist in Houston.  Dr. Rosa Tang.  She diagnosed me with Tolosa Hunt Syndrome and began the steriods interveniously immediately.  High doses.  My eye at that time was off to the right and I was unable to control both eyes.  I had to wear a patch over one eye to be able to see.  The pain finally subsided after the second day on morphine.  Then they switched me to hydrocodone for pain.  They also had me on 1000 mg of Valtrex.  I had had a flare up of herpes 2 weeks before this happened.  I will mention also that I had been under a lot of stress the weeks before the headache on the left side of my eye area.  I was released from the hospital after 5 days.  They sent me home with 60 mg of Prednisone for 2 months; then 40 mg for 2 weeks; then 20 mg for 2 weeks; then 10 mg for 2 weeks, then stop.  Besides all the horrible side effects Prednisone can do to a human body, the stuff worked.  I was back to normal.  My eyes were normal again.  It took my body awhile to get back to normal from the steroids though.  But nonetheless it did work.  

November 6, 2015 almost a year later, I began to experience symptoms I was all too familiar with!  I knew what I was up against this time and sought help immediately.  I called Dr. Tang's office but she was not available to see me that day and referred me to another ophthalmologist that she works with.  I went in that day and he prescribed 40 mg of Prednisone for 7 days; then 30 mg of Prednisone for 7 days; ;then 20...then 10 mg  for 30 days, then stop.  I am currently on 30 mg right not on my 12th day of steriods.  I feel awful but I have no headaches. I feel I caught it early and I am in better condition than last year when it took me by surprise and didn't know what the hell was happening to me.  But this time I'm vigilant and taking it on with caution.  I still cannot drive because my eyes are distorted and I see double vision from about 2 feet and further.  It's hard for me to focus my eyes.  I have to wear a patch over one eye in order to function and see my surroundings better.  I also have to mention, that I did have a flare up of herpes like last time right before this happened to me again.  In saying this, I do believe that the 2 are related in my experience.  Even though these Neuro-ophthalmologist say the opposite,(they say they do NOT have a cause) I say it's pretty cut and dry in my experience.  Also, it's caused by stress.  These flare ups for me have been stress induced.  I may also mention that the more sleep you can get and keep the eyes closed, the better the healing and faster the healing will occur.  Surround yourself in relaxation if at all possible.  Keep your eyes hydrated.  In other words, keep eyes moist don't let them get dry.  I found this to be helpful in my experience.  Thank you for allowing me to write my experience with Tolosa Hunt Syndrome