This is from my bio.  Its a bit long I know.  But after 10 years I have all but given up hope.  I'm hoping posting it here will help me find someone who can give me a new idea or a path to some help or relief.  Any would be appreciated.

Rich

NOTE: Its not a chemical reaction to pain in the Trigeminal nerve root inside the brain as the neurologists have wrongly concluded as it would be with a cluster headache. If they were correct, the Topamax and other suppressive therapy they tried would be effective.

They keep telling me I'm wrong but can't prove it. I keep proving they're wrong, but they can't admit it.  My newest Neuro-god even went so far as to tell me the GON has nothing to do with the top of, or side of the head-and he is the asst. Chief of Neurology at Kaiser!  How is that for denial?

Originally injured in 1998 while on the job as a prison guard I have been to 4 or 5 different neurologists who all say the same thing...cluster headaches. They all have the same answer: try this pill, and that pill. None are effective because I have been misdiagnosed. I try to tell them I have Occipital Neuralgia. But since it's a patient with a high school education telling them and they have a God complex they ignore me. So I suffer and get useless brain scans that come up normal. For 10 years I have suffered and it continues to get worse as my condition deteriorates. Nobody will listen, nobody will help. So I suffer day in and day out. Below is what I even wrote out for my doctors. They said it was well written, that's all.

History:

I have sustained neck injuries in 1998 and 2001. None of which were treated properly except by chiropractic care and limited physical therapy. Until 31 May 2008 no MRI had been conducted of the cervical spine. X-ray from 2007 show spurring and decreased disk spacing at the C1-C3 region.

Symptoms:

The episodes usually start with pain and spasms on one side of the neck or the other near the top around the SCM, overwhelmingly on the right side. Rarely does this happen on the left side. What I describe is typical and almost daily on the right side. I get pain across the entire back of the neck from one SCM to the other, approximately 1 or 2 inches down my neck starting at the base of the skull. Shortly thereafter I start to have pain and muscle spasms on the side of the head ranging from above and behind the ear to the temple and even involve the TMJ muscles. Pain or numbness along the Maxillary branch of the Trigeminal Nerve usually accompanies this. Sometimes my molars even hurt. I start to have pain in and around the eye and tearing of the eye, which may suggest irritation of the Ophthalmic branch of the Trigeminal nerve. By this time I am experiencing halo's around lights in my right eye and the eye is starting to tear. My vision is also starting to blur in the right eye. The eyeball itself starts to have mild sharp pain, and then the entire orbital region goes numb and feel swollen. The right nostril feels like it swells and becomes congested with mucous. When the episode is in full effect I am having very painful muscle spasms ranging from my upper right neck, to and along the side of my head up to and including the temple and down to the TMJ. My right eye is visibly swollen and the eyeball is red. The whole of the orbital area feels numb and has reduced tactile sensation. I have slight facial paralysis on the same side and sharp hot pain along the maxillary nerve. The nose is congested and running profusely on the right side. I have lost anywhere from 50% to 75% of my vision in my right eye. The pupils however are even in both eyes. It should be noted that on four separate occasions I have experienced loss of vision in both eyes simultaneously, although with more vision retained in the left eye. These symptoms have lasted as long as 20 hours. Sometimes it stops and then starts over. Occasionally it just stops for reasons unknown. No medication including Rx muscle relaxers, Rx pain medication or Rx symptom suppression medication has proven effective.