I was diagnosed with Tolosa Hunt Syndrome on Monday, but it's not improving with treatment.

I had an MRI that showed a mass of inflammation in the cavernous sinus(looked like a jelly bean), on my trigeminal nerve.

Numerous blood tests and a spinal tap ruled out every known cause.

I started prednisone (steroids) 100mg on Monday, and from today on am supposed to take 60mg/day.

I take neurontin 900mg/day for the trigeminal neuralgia from the "inflammation" pushing on my trigeminal nerve.

The neurologist said if they pain hasn't cleared up within 1-2 weeks, to call because he would then diagnose as a tumor, and we'd need to discuss surgery.

I have some of the eye symptoms of tolosa hunt, my eyelid now sags, constant pain around it, painful to look left, right, up, down, double vision when looking side to side.

But the real pain I'm experiencing is now very distinct, and right where the MRI showed a mass. On the inside of my eye by the nose, behind, I have a constant feeling of something in there pushing on everything.

If I look up, down, left, right, it feels as if my eye nerve is rubbing on and irritating something. Every single breathe I take also gives the feeling that my sinus is rubbing against something, further irritating the area. My cheek muscle gives sharp pain starting from the same source. It also gives me a sharp headache instantly when I look up, down, left, right, for a short moment while I'm looking.

It's becoming debilitating. I find myself just laying in bed closing my eyes to reduce the irritation/pain, but can't sleep cause of the steroids, and the pain is very extreme. I can't socialize or work on projects I was working on just a few weeks ago.

I've had constant pain here for 10 months now, it's only progressed and gotten worse. The first doctors wasted months of my time telling me it was migraines, now my eye is permanently disfigured, I don't know if I have the right diagnosis or what else I could possibly do.