Impressions:
Although being a layman and untrained nobody else is better qualified to know how I feel than I am. After hours upon hours of research I have come to the impression that the following may be the mechanism for my symptoms. The upper cervical vertebrae are not stable and move slightly due to connective tissue loss of elasticity and damage. As they shift or have pressure put on them this causes muscle spasms in the neck and pressure on the Greater and Third Occipital Nerves. Perhaps a decreased spacing between the disks precipitates this. Irritation of these nerve roots causes further muscle spasms in the neck and side of the head with extreme pain as described above. These muscle spasms in turn irritate part of the Trigeminal Ganglion causing irritation of the maxillary and ophthalmic branches and the symptoms as described above.
Hi Jeepman,
I know a little bit of how you feel being misdiagnosed. I suffered from daily headaches and occipital neuralgia for a year and my neurologist never found the cause. It wasn't until he referred me to a pain specialist that I found that I had arthritis in C2,C3 and C3,C4 of upper neck which was triggering my horrific migraines, occipital neuralgia and neck pain. I know what you mean about your teeth hurting and having sore SCM. I had originally thought I was having trigeminal neuralgia as well but believe based on what my physical therapist says that the SCM muscles are so tight on both sides it causes jaw pain. I have also had temporary vision loss in my left eye and intermittent burning in left eye when the occipital nerve is riled up. I have vasomotor rhinitis when the nerve is stirred up which causes non-allergic burning of my nose. Certain smells particularly perfumes really set me off with an immediate headache. I have had success with a med called Neurontin which is for nerve pain and physical therapy exercises that I have to do on a daily basis. I also usually can be found wearing a heat pack on my neck for sore muscles and an ice pack when the occipital nerve gets unhappy. From the research I have done, people who have arthritis in cervical vertebra or injury as result of car accidents, trauma, etc. can and do have occipital neuralgia and migraines as a result. Hope this helps you at least to know someone else has been there.
PamO
Hi Pam,
Thanks for the response. My problem is getting the neuro-gods to even diagnose me with occipital neuralgia. They keep wanting to diagnose me with cluster headaches because of the involvment of the trigeminal nerve. So I am not getting any effective treatment. I show them signs, my symptoms and the facts but they just wont listen. Its a living nightmare.
again, thank you for your response.
Rich
Hi Rich,
It was a spine pain specialist (orthopedic surgeon who specializes in pain management) that diagnosed me based on my CT scan of my neck and my symptoms(took him all of 10 min). The neuro gods aren't all they're cracked up to be and I think they don't always look at the less common causes of headache and they sure as heck aren't very good listeners. Best of luck to you.
Pam
Hi Rich,
I forgot to mention in my other comments that my neurologist took me off Neurontin for a month when I started having vision problems and started me on Topamax. I had 4 visits to the ER in Nov. 08 because the Topamax (or abscense of Neurontin) caused me to have headaches so horrific I said my goodbyes to my family. Felt like a grenade blew out the back of my head. Maybe your neurologist would consider trying you on Neurontin for your nerve pain since they do agree you are having trigeminal nerve pain. It also comes in generic which is a heck of a lot cheaper than Topamax. Hope you can get them to listen.
PamO
Well Pam, I'm on 50mg Topamax 2x/day now and it doesnt seem to be doing much good. Its used to treat trigeminal pain specifically (though its intended use is an anticonvulsant) so the only thing it had done is decrease the amount of times I go blind in my right eye, but the pain is the same.
An interesting side note. My pain had increased expotentially this past week to the point it involved my right TMJ and both my upper and lower teeth on the entire right side to the point that if I woke up dead one morning I wouldnt be too upset. Day before yesterday morning I noticed the slightest of swelling in the cheek area. I made an appointment to get to the dentist that day. I had an abcess in the top right back molar. A root canal was scheduled for the next morning...yesterday. I am seeing vast improvments in my overall condition and I have no need for the pain meds.
Now this tooth has been sensitive to cold for the past few years, but the dentists could never find any sign of decay infection or any reason for the sensitivity. So I thought it was just a sensitive tooth, or part of my migraine symptoms. If this abcess had been brewing for that long slowly, it could be part of the reason my migrraines were so severe, especially the last 3 or 4 years. I dont have any false hope that my migraine will magically be gone, but cross your fingers and toes for me and hope with me that maybe they wont be so bad now.