I'm Jackie from Idaho, where we are having a really cold, windy normal winter. The weather this time of year is horrible for my TN and I seem to have more flares from November through March than at any other time of the year.
I have bilateral TN1, GPN and atypical trigeminal neuralgia. All of your thoughts about this disease are correct in some sense. It can be very isolating and it is definitely miserable. I was diagnosed in 2001. I have had multiple failed procedures - 2 MVD's, 2 surgeries for complications and the Gamma Knife, (all in 7 years), but I still believe there is something out there that is going to help us. I currently take a boatload of meds, from Neurontin to Dilantin to Amitryptilline and more and I'm not exactly sure how effective they are. I'm not going off them to find out. Last fall, I was told by the Mayo Clinic in Rochester, MN that "there is no treatment or procedure that will help this patient." That was a little devastating. However, I picked myself up, dusted myself off, went home and decided that TN is just an illness. It is not who I am.
I am, like you, full of life. I am medically retired, so free to pursue any other passion I choose. Last summer, I took a part-time job doing something I really liked and worked all the days that I could. The others . . . I called in sick. And, it was a blast! I knew it wasn't my lifetime career, so I was happy to be there. I helped with education and training of the two twenty-one year old employees and I contributed a great deal of knowledge to them.
This winter, I have busy doing projects inside my house because of the winter weather. I tackle everything from painting to cleaning. And I like it because it's also not my lifetime career.
I've learned with TN that TODAY is all I have. If I have a pain free or pain light day, today is the day I take on the world. With GPN, I lose my voice quite often. When I have a voice, I play "catch-up" with friends, family and co-workers I keep in touch with.
I have had to change the way I live my life, but I am still living it. TN only dictates which days are better than the others. And the better ones are filled to the brim with all the things I have ready to do. I have a good family and friend support network, but I am not a victim of this disease. I am a TN survivor.
I believe it is our responsibility to educate everyone who knows us about this rare and unusual disease. We are a limited group and most people don't know anything about it, not even the medical community. I even gave my Doctor a copy of the book "Striking Back - The Trigeminal Neuralgia Handbook". He couldn't believe there was so much information in one place.
Please let me know if I can help in any way. I would be glad to listen when you need someone to lend an ear.
With best wishes for a pain free or pain light day,