Hi, I was just diagnosed yesterday with occipital neualgia and I'm a bit overwhelmed with all this and am looking for information on what to do about it. I've got a lot of responsibility and I'm a little afraid of what might happen next since I've gotten steadily worse over the last two weeks. I use a wheelchair and we had a big day at Epcot two weeks ago and I spent a lot of time looking over my left shoulder because my son walked behind me most of the time and I kept checking to make sure he was with me. By that evening my neck was sore and I had a touch of a headache and by morning my neck felt stiff, the headache was worse and it hurt to move my head in any direction. Two days later I had a massage that helped with the usual stuff but not the neck, and it just got worse and worse. Finally my massage therapist urged me, with a few nagging phone calls to check on me, to go see a doctor. I went to a Back and Neck Specialist and after hearing me discribe my situation said she was almost certain I had Occipital Neuralgia and mentioned accupressure and nerve blocks and physical therapy. I was so overwhelmed I had to have her write the name down.

I have mild to severe pain (it comes and goes in pulsing waves between the two) and it's more on the left side of my head. It's in the back of my neck, back of my head, to my ears and pulses up the back of my head in cycles when it's bad. Sometimes it's spots that hurt, sometimes the whole thing. Sometimes it feels very thick and swollen.

This afternoon I went to lay down with the dog because he was freaked out over guests that we have over today and I got the worst dizzy spell I've had yet. I saw circling pulsing strobe-like lights with my left eye and fairly normal with my right but I couldn't tell which way was up and I felt like I was going to be sick. It really scares me because I am the sole driver for our family and have a minor child that I am responsible for with no family in the state. We live pretty far from family. We have friends that I could call on in a pinch but not for long term and my mother has always come out in emergencies before but my dad's had a stroke two years ago and has since become unable to be left along and traveling for long periods of time is tougher on him then it used to be. Sigh.

What do I do about this? What is the best course of action? What works, what's dangerous? I also have osteogenesis imperfecta (mild), a collegen disorder that causes my bone density to be lower then normal and my ligaments, joints, etc. to be less strong. I can't do steriods because they deplete density and my vertebra are so close together that things similar to spinals/epidurals are not a possibility. The doctor said the nerve blocks are different but the spinal I had 20 years ago when i had my daughter caused me to have difficulty sitting up for 4 days.

Any help, any responses or friends that come of this post are very welcomed.

Allison
Mom on the East coast of Florida