I was talking to my older son, who was only 13, when I was diagnosed with TN. He is now 31. He was asking me how I was feeling, after my recent surgery. When I told him for the first in 18 years, I was now pain free he commented he was so happy, that seeing my dealing with the TN while growing up made him really sad. My heart shattered into a million pieces. For the past 2 years it has made my partner really sad too. I refer to my family and friends as TN collateral damage.

So true Sarah…but it’s important for us to remember that it’s NOT our fault.
We’re all affected and as a result our children,husbands, wives, family and close friends have to adjust too. It’s unfair and makes me very sad at times too…I still feel the guilt, even though I know better…
BUT I try and remind myself that because of my TN, my children are more compassionate, caring individuals…with every situation there is opportunity for growth and positivity.

(( hugs )) Mimi

I understand your feelings. Feel alone and ridiculed because if people can’t see it and I don’t know how to find a neuro who specializes in TN I’ve just wasted what little money I have and am so depressed taking neurotin I am beginning to see only one option left. This is going on five years and can’t take to much more. Need answers on how to fing a good neuroligist in the Columbia, SC or in this area somewhere. Dob’t know how to use this phone and links very well. Any help or suggestions would be greatly appreciated.Thanks for any help am desperate at this point!!!

Mimi, I never thought it was my fault, but still I am sad. My kids extremely compassionate, and yes, I do believe growing up with a mom that was sick, through the most formative years has a lot to do with it.

I believe that things just don't happen for a reason. Who knows the eternal ramifications of your son going thru this process with you and coming out on the other side to also share the joy and relief from this terrible condition. Do not blame yourself. I am so glad you have done so well!