The Monster known as Orbital Pseudotumor

It all started when I was 19 years old. I woke one morning to a very dull but irritating ache behind one of my eyes. A few days went by and the dull ache quickly turned into an unbearable pain. My eye began to feel very tight as I would try to look back & forth. I developed double vision. Unable to deal with the pain any longer, I went to the emergency room. They ran all kinds of test & dilated my eyes & could not find anything wrong. Still in horrible pain with no answers, I was sent home. I was told to take Motrin for pain and to use hot & cold compresses. My stomach was acidic from already taking so much pain medication. A couple days went by and I was not getting any better. I could no longer move my eye from left to right. It was as if it was frozen. Anytime I would try, it would add to the constant pain that I was already feeling. I headed back to the ER once again. I was sent to an Ophthalmologist who decided to do an MRI.

The MRI showed what looked like a tumor behind my eye. When he presented me with the findings, I was terrified. He told me it could possible be a tumor, fluid build-up from an infection, or some kind of inflammation. It ended up being inflammation. Other test performed showed that the swelling was so bad that it had stopped the muscles from moving and was actually starting to press my eye outward. He prescribed Prednisone and I was on my way. Within a day of being on Prednisone, the pain greatly decreased. I was so happy that the treated was working. Although the pain had left me, it took well over a month for my vision to be back on track due to the muscles being so paralyzed.

I knew that I never wanted to go through again. This horrible condition that I had no name for and no cause. One that caused such great pain. Little did I know that this would be a reoccurring condition. 10 years later, I am no closer to knowing more about this or pain free from it. I've had 2 flairs every year since the first time and 4 in the past year. ( I am currently on Prednisone for a flair right now.) It has affected each of my eyes but seems to favor my right eye. I have woken up twice to my eyelid drooping. The first time it happened, I thought I had had a stroke while I was sleeping.

This illness has broken me in many ways. I live in fear of another flair. I get very depressed when I feel the tell-tale dull ache coming on because I know that I am in store for pain & medication and having to prove to doctors that I am not med seeking because they do not understand my condition or heard of it.

more to come.....