Ginnie,
I have atypical TN that started 12 years ago with a complicated tooth extraction. I also have occipital neuralgia, a result of the second MVD. I have tried many, many medications including anti-seizure drugs, anti-anxiety and anti-depressants, a medication normally given for alzheimers disease, narctotic pain meds, fentanyl patches and methadone, with either no relief, allergic reations or side effects that were intolerable. I have had 2 MVD's, an occipital nerve decompression and a very complicated surgery that isn't done often called a C1 and C2 laminectomy with nerve sectioning of the C2 nerve roots. This surgery was done to remove the root of the occipital nerve and had to be done with hyperextention of the head to enable the surgeon to access the spinal cord, as a result I ended up with all 7 cervical discs herniated. Each surgery led to more pain especially the last one. I have had physical therapy, hypnosis for pain control, accupuncture and many nerve blocks and nerve root blocks still with no relief. My neurosurgeon wanted me to try deep brain or motor cortex stimulation but after my luck with the other surgeries I felt this was something I should avoid. I became very disheartened and felt like giving up, but somehow I started to accept the situation that I was in. I knew it was not going to go away and I had a wonderful husband and three beautiful children that I had to think about. Acceptance had been the answer needed, I no longer spent all my time searching for a cure. I just get through one minute at a time and I force myself to stop thinking ahead, by doing this I am able to get by. I take 1500 mg. of gabapentin and 30 mg. of baclofen a day, if I take more I have thinking, focusing and memory problems. I use lots of vicks, ben gay, ice and heat. My medications are prescribed by my family physician. I no longer go to a neurologist, neurosugeon or a pain clinic. My last surgery was in 2006, and my last visit to the pain clinic was in 2009. I had a regular appointment last week with my family doctor, it was then that the Priult therapy came up, but this probably another treatment I should not have.
I am alive, I try every day to think of someone that is worse off than me, and I pray more than I ever have in my life. I hope I have answered some of your questions, if you have more feel free to ask.
Have a great day,
Marlene