I was just Dx'd with TN last week, and I just want to cry now. I feel misunderstood by doctors, family, and co-workers. I am tired ~ physically and emotionally. Just hoping to talk with someone who can relate to me.

Hi Shezbut,

I'm so sorry to hear about your TN diagnosis. I have trigeminal neuropathy, which is not exactly the same thing, but it is similar. I wondered if you have been able to talk with a neurologist about your TN, and start any treatment? It is a really tough diagnosis, but there are some treatments which can really help for many patients. Sometimes it takes awhile to find the right treatment for each person.

Have you also heard of the Facial Pain Association? They are an excellent resource if you are in the United States. You can look them up online.

Sending lots of good wishes to you. Please hang in there, and take gentle care of yourself.

Take care,
Erin

When it came right down to it, I saw my epileptologist (who actually teaches neurology at Mayo Clinic) for guidance & in hope that he would find the right treatment for me. My epi quickly deduced my problem to be TN after some further tests. He then prescribed carbamazapine to me ~ and saw me 1 week later. Amazing! My pain is around 90% gone. Thank goodness!!

I haven't heard of the Facial Pain Association...I will certainly check them out. Thank you for the tip! Very best wishes to you and finding the best way for you to treat your neuropathy.

Hi Shezbut,

I am thankful that your epileptologist was able to help you. Carbamazepine is a good medication and helps a lot of people! I'm so glad it helped so much for you. Having the symptoms gone 90% is a huge help, even though I imagine at times you wish they were gone completely. But 90% is so much better.

I have had really good help for my problem, thanks. I've been living with it for over 20 years. We tried many medications. Some of them helped a bit, but my body wouldn't tolerate them. Some of them didn't help. Now I take Topamax, which is a different type of anti-seizure drug (carbemazepine is also an anti-seizure drug). It is working pretty well for me. I also do other things that help me. I know things that set off my pain, and I am careful to avoid those things. You may learn some things which can be problematic for you, too. If you can take good care of yourself and avoid those things, that can reduce the frequency of your episodes - that remaining 10%. Sometimes it is something simple, like trying to avoid being out in windy conditions. I often use an umbrella to shield my face from the wind if I do have to go out when it is very windy.

The Facial Pain Association is a very good resource. They recently changed their name, as they were formerly the Trigeminal Neuralgia Association. They have a book on Trigeminal Neuralgia they've published called, "Striking Back! The Trigeminal Neuralgia and Face Pain Handbook." I have a copy, and I found it really helpful. As you said, it can feel a bit lonely to have this problem, and part of the good thing about the book was reading it and knowing you are not alone with this problem.

Please feel free to write again. I'll keep checking this thread. I send lots of good thoughts your way!

Take care,
Erin

Hello Erin,

I'm glad to hear that you've found a medicine that is finally working pretty well for you. Twenty years ~ you sure deserve a break! I am lucky in that my epileptologist has helped me with so much over the past 10+ years.


Best wishes to you!

As a TN survivor, I can truly relate to what you are going through. I have TN and had MVD surgery about 6 years ago. Now I'm about 95% better. I still have some minor what I call electrical twinges on the right side of my face sometimes but they are nowhere near what they were before surgery. I still take some Carbamazepeine every day to help with those. Carbamazepine works great for me and I try to stay at 600mg a day or less which is the level I can tolerate and still fuction normally. I have been taking it daily for about 4 years now. I also like Carbamazepine because it's tasteless and you can dissolve one in your mouth if you need it in your system fast.

One thing I learned about TN is that it is highly unpredictable.
My twinges come out of nowhere and I have not been able to narrow down what brings them on. I can eat normally but then all of a sudden one day eating/chewing will bring them on. I also have them sometimes at night when I sleep so who knows.....

I just hope you get better and beat this terrible affliction.

Ken

I have TN in the right side of my face. I get zaps and it feels like someone stuck my eye in an electrical socket. It comes out of nowhere and hurts like the dickens.

I have to eat and chew on the left side. I cannot even brush my teeth on the right side of my mouth. I can rub a piece of gauze with toothpaste on it over my teeth and that doesn't bother me. Using a toothbrush on that side sens me into orbit!

I take Tegretal and it helps a little. Zaps still happen especially if I move my mouth a certain way or even touch the side of my nose. It's very exhausting.

To everyone here dealing with this strange affliction I hope you all find some relief with whatever you're taking.