Hi everyone ,my name is Liz..I was diagnosed with TN 7 months ago.My TN affects the 1st and 2nd branches.My pain was barbaric at first ,but now is a bit better .I'm on 2antiseisure meds a muscle relaxer and percoset for breakthrough pain.... Needless to say my entire life has changed.I'm happy to have found you all,asthere are not many of us around .I think this will be helpful to share learn and support each other.This can be a very isolating condition so it is comforting to no I'm not alone in this.Thank you.
Warm Welcome Liz, glad you found us. It’s definitely easier having the support and understanding of people who truly know what it’s like to have TN.
(((Hugs))) Mimi
Welcome, Liz! I've been a member of this community for only a short time, and I love it! I read every night to learn all about this awful condition we have. Understanding what we have is important for our treatment. I've learned so much here that my doctors never explained!
Hi Liz,
I'm glad you found us. This is the best source of support there is on the internet. I have relied on this site very heavily at times for support and information. Ask absolutely anything here. As I am sure you are learning you need to become your own best advocate with TN.
Jane
Hi Liz and welcome to this awesome community! I wanted to comment here because your situation sounds similar to mine. Like you, I am in my 40's and was diagnosed very quickly. My pain (in 2nd and 3rd branches) was mostly the horrible shocks and although my anti-seizure meds controlled the pain OK, I definitely had bad breakthrough pain. I used Vicodin for my bad days, not so much to control the breakthrough pain but to escape it for a few hours (where I didn't care as much). My anti-seizure meds got increased so high so quickly that it was seriously affecting my quality of life so I consulted with a neurosurgeon just months in to my diagnosis. I ended up seeing three neurosurgeons and Dr. Ken Casey (get his book "Striking Back") did my successful MVD surgery more than two years ago. I've remained pain free and med free since then and feel very blessed. I had the surgery just 9 months into my early diagnosis. I published a story of my journey if you would like to read it here . .Trigeminal Neuralgia: How I Survived the Worst Pain Ever. Please do get the "Striking Back" book and learn all that you can about TN. Know that you will need to be your own advocate with the medical community. I'm sure that you have learned that already. I and everyone else is here if you have any questions or need support.
Thank you everyone for your kind welcomes.As many of you suggested I just ordered the book Striking Back.I look forward to reading it!