All of you dear young people,
I want to speak to you about feeling that you do not want to live with this anymore.
I know, personally, the pain that you experience. I know how bad it can get, so bad that you need to go to the hospital or ER for treatment. I know how it feels.
There are so many things for you to live for - being in love, traveling to beautiful places, having wonderful pets, making good friends, eating delicious foods (when you can), watching great sunsets...so much to live for!
Today is a bad day for me - I woke up in bad pain, which means that it will be with me for the rest of the day, and there is a good chance that I will have to go in for a shot. I have atypical pian, which means that it goes on and on and on, relentlessly.
But I have the love of a beautiful man, who fights this monster with me. You will find this too. You will not be alone - there are people out there, wonderful people, that are there to be your friends, and support you, and sit by your side through the operations - all you have to do is learn how to ask. There are great doctors and surgeons, who will be your allies, you just have to have the patience to fire the bad ones and work at it tofind the good ones. People are good and they want to help you through this, if you let them. And if they don't, then you don't need them in your life.
You are not alone with this monster - you have us too - and we KNOW just how bad it is.
I just want you to know how many good things lie ahead for you in your lives, and I don't want you to miss out on all of those things. It's all about attitude - finding all of the positive things in your life, and being grateful for them - you know that old saying - count your blessings - it is really true. If you seek out all of the positive things, they are all there around you. Hold on to that - the things that we are lucky to have. The people who love us, the things that make us happy.
I have a very far from perfect life - crappy things happen all of the time - but I always remember that it could be much worse. Much worse. And I guess that I am grateful that it isn't. Not yet. And I pray that I will have strength to handle it when it does. I choose to think that I will.
I don't know why I sat down to write this - I guess because I am an older woman who wants to tell you that there are still really great things ahead for you.
So please, hang in there, and keep talking to us. We will help to get you through all of this.
Mylastnerve (Lily)

Thanks Lily, for reminding ALL of us young and old that there is always something or someone to live for. My ATN episodes are sporadic, so I am one of the lucky ones, but fear that it will progress on to be more frequent. I keep praying it away. I also pray for all of you here that you will find relief.

I suggest to anyone who is experiencing the facial pain that proves not related to dental issues to see a good neurologist as soon as possible to receive the best treatment for your pain. I was under the impression that the usual pain drugs do nothing for the TN pain, but some of you say they help? Heat and tegretol are my current treatment and so far works pretty good, but I have to be at home to take it - makes me very sleepy.

God bless you Lily, and the rest of us too.

Rhonda

Has anyone here tried cayenne pepper(zostrix)? I have the same issues most of you are dealing with. I have a form of TN called Atypical Odontolgia-nerve teeth pain with no cause. One of the treatments some have used has been zostrix or any other product with capsaicin in it. There is literature on using this so it's not all that alternative. Been using about a week and it has helps some. I hear one of the other meds for this that shows good results is amitriptyline mainly in low doses.

Hi Scoopy,
I have used capsaicin creme topically when I run out of other options. I just put a dab on the pad of one of those little round bandaids, and stick that directly over the spots where the nerves come through the skull. It has definitely worked on the pain, or confused my nerves enough to where the pain is not so bad.
I take nortriptyline, it is the first cousin of amiltriptyline, and it was the first thing that helped with my TN before I went on to the anti-seizure meds and the opiates. I still take it.
I hope that this info helps.
Lily