Wow, reading the posts here...finally! I'm not alone! I've been living with Occipital Neuralgia since February of 2005. I woke up one morning with this excruciating pain, and since then it's been unrelenting.
I've had numerous MRI's, CT scans, X-Rays which show all of my Cervical disks to be either Herniated or bulging and causing pressure on the spine; even the Thoracic disks at T1 through T4 are herniated. The kicker is how it happened...I have no clue! I wasn't in an accident, didn't hurt myself either. The only significant event prior to this was a shoulder reconstruction. (Perhaps they had my neck/shoulder cock-eyed on the operating table?)
I've been through countless horse and pony shows, you name it, I've done it: Trigger Point injections (at least 20). Nerve blocks, facet joint injections (more than I can count), rhizotomies, none of which have given me any continuous relief.
I was finally referred to a Neurosurgeon who told me all of the procedures I've been through WOULDN'T work for Occipital Neuralgia! He came up behind me, placed his hands on my neck and knew exactly where it hurt, where the pain radiated; I was genuinely impressed for once.
He told me I need to get a Trial of a Nerve Stimulator (I read Knightgoddess was told she needed the same thing) where they put the electric stimulators under the scalp, connected to the appropriate nerves to stimulate them so they don't cause pain. He told me the TRIAL is for approximately 7 days to see if patients can handle the constant feeling of it (just like the rhizotomy pulsation--not painful).
*Prior to getting the TRIAL done you have to get a psychiatric evaluation done, because once the trial is complete they'll put the device in permanently. Meaning they'll feed the electrode wires down along your spine *under the skin, not in your spinal column*; and they'll be attached to the main unit which will be located deep in one of your buttocks.
I'm not sure if I'll pass the Psych eval, but I'm so sick of the pain and what it's doing to my life.
My Occipital Nerve is being 'pinched'/'irritated' in an area where it triggers Migraines constantly. So much that I've had a Migraine last for 32 days. I'm constantly getting 'aura's which used to precede the painful part of my Migraines, thankfully I'm now on Topamax so I don't experience the pain for the most part.
The neck pain is horrendous, I also have pain that radiates up and above my ear and other symptoms too.
I'm on the Fentanyl Patch and MSIR for Breakthrough Pain.
Keep in touch fellow ON'ers!
(Sorry if I rambled, Insomnia strikes again!)