Hi folks,

My wife suffers from both occipital and trigeminal neuralgia. Her symptoms started with TN only back in 1999. After a lot of unneeded dental work, she was referred to a neurologist who diagnosed it. At first, it was a typical case, she had periodic attacks, then some relief, etc. Neuro prescribed Tegretol, Neurontin, etc. and for about 3 years she lived on the meds. However, they gradually became ineffective, and she was sent to a neurosurgeon. He performed an MVD, and the pain vanished for two years. In 2005, the pain returned and the surgeon did a second MVD. This time, the pain was worse from the moment she woke in the recovery room. Also, rather than having attacks of pain and then subsiding, the pain was constant 24/7.
She went back on Tegretol, along with Lyrica. Both ineffective. In 2007, she was referred to a rad/onc to try a Gamma Knife procedure. The GK was completely unsuccessful, and again did nothing but increase her constant pain level. A year later, we flew out for a consult with a TN specialist in Portland, OR. She was told she no longer has TN, and was diagnosed with Nerve Deafferentation. Dr recommended a Motor Cortex Stimulator. However, he gave MCS a 50-50 chance of success, and in addition, the procedure costs $100k. Our insurance declined it because it is still considered experimental. I tried working with the state insurance dept, and also tried to get a state medicaid approval, both were no help.
Since 2009, she has developed symptoms of occipital neuralgia. Pain starts at the base of the skull, moves up the back of the head, over the ear, to the forehead. This began on her left side (same side as TN), but in the last year has expanded to both sides of the head. She has seen a pain specialist for the last 18 months. Several meds including oxycontin and dilaudid. No relief. Pain doc has tried several nerve blocks, where she would get relief from the ON pain for 24 hours or so. However, they have become completely ineffective. He also tried an RFA in the stellate ganglion, which is in the front of the neck, close to the carotid artery. No help. Pain doc has "run out of ideas."
She had seen different chiropractors, acupuncturists, tried "neurological diets" and some alternative meds (herbs, etc) without any successes. We live in a northern climate, and winter for her is pure hell. The cold intensifies the pain dramatically. We talked about moving south, but she doesn't want to leave our extended families, they have been a great support. Also, she said, it's not worth moving for only a temporary reduction in pain.
She has spent the better part of three years in bed. As you can guess, depression and hopelessness is beginning to get the best of her. She has been a real trooper for a lot of years, but I fear she is reaching her limits. She attends a weekly psych therapy session, mostly because we are both worried about her contemplating ending her own life.
I would welcome any ideas or suggestions from anyone that has anything similar and has found any pain relief.

Is having a PNS an option??? it is used for both tn and on . it is a last option there is a Sticky up top with info about it and where others have shared their issues and journey.
Most important PLEASE KEEP being there for her .you are awesome for searching help and info. make sure she keeps going to therapy too.
I will have you both in my prayers and healing positive low pain thoughts.
DONT GIVE UP!!!
PEACE
BMW

I can not offer any advice I'm sorry but i do feel for her .
She is lucky to have an understanding husband.
I wish you both all the best and hope that you find an answer

Thank you for the kind words. Update: I think we have successfully convinced our pain doc (an anesthesiologist) to try a PENS unit. I actually printed out the thread about it and gave it to him. It's over 50 pages. He said he hadn't previously considered a neuro stim for wife's pain, but after reading some of the positive results he is willing to give it a try! He set up a consult with an out-of-state neurosurgeon who does a lot of stim implants for various conditions, will keep you posted on how it turns out. MUCH THANKS to everyone who took the time to tell their story on that thread, I really think it had an impact on our doc. Wife's spirits have picked up now that she has something to look forward to.