Atypical TN and NICO?

  I have been dealing with facial pain on the right side of my face for three years. I've had assessments for TMJ, a lumbar puncture for MS, MRI, and sinus CAT scan. All have been negative. I have been prescribed various medications mentioned on this site and have had problems with rash (Dilantin) and fatigue (Tegretol, Elavil..). I'd like your opinion about whether other tests would be in order. It is hard, given the pain, to assume that there is no disease process going on, one that is progressive since my pain is getting worse. A second question related to recent root canal sites which now seem a focus of my pain, although no problems show up on X-Ray. I have just been reading about NICO (Neuralgia Inducing Cavitational Osteonecrosis) which seems to fit my pattern, which is constant pressure and pain extending from the top of my head to my chin. Any insight or direction would be most welcome. Thank you.
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Hello Leslie!
Let me first apologize for our extreme delay in addressing your question. To the best of my knowledge, there is no relationship between trigeminal neuralgia and NICO, and there does not appear to be any objective evidence of either of these disorders in your case based on the information you have provided. Chronic atypical facial pain always prompts concern for tumors in the base of the skull and elsewhere near the trigeminal nerve, and as long as the appropriate type of MRI study has been completed to look for such things, the best approach to treating it is with nonopiate medications that alter the balance of pain producing neurotransmitter substances in nerve endings over time. Tricyclic medications like Elavil are one example of such a medication, although many other less sedating cousins of Elavil exist, such as nortryptiline, desimpramine, and imipramine. If all else fails, a pain management clinic may be an appropriate means of treatment, as they can often offer nerve blocks to pain generating structures in the affected region, such as the sphenopalatine ganglion. If you would be interested in an evaluation at the Cleveland Clinic, we would of course be happy to see you. Dr. Richard Lederman of our department, and Dr. Patrick Sweeney both have an interest in trigeminal neuralgia and related disorders. Our number is 1-800-223-2273 extension 45559 (neurology appointments) Please remember that information provided on the forum is intended for general medical informational purposes only, and that the actual diagnosis and treatment of your specific medical condition should be strictly in conjunction with your treating physician(s). We hope you find the information helpful, and once again we apologize for the long delay in responding to your question.