New and Confused

General General TN & GPN (Old Site)
1

Hi All,

My name is Melissa, I am 24 years of age and from Sydney Australia. I am a new member to this website and not sure if I am posting in the right place just a little confused at the moment. My TN started when I was 19 years of age. It was a horrific experience one that I will never forget. From dentists to doctors to specialist I finally got introduced to my neurologist who diagnosed me with Type 3 (lower jaw) TN. I was diagnosed 4 months after I started feeling the pain so you can imagine the pain I was feeling without being treated for 4 months.. It was horrible.. After being diagnosed I was placed on tegretol and after a month or two the pain went away. As I was so young I had an MRI and was tested for MS and all results came back negative. Like many people my TN came out of the blue.

I thought I was clear I went 3 years without feeling another pain, then all of a sudden it came back but this time was Type 2 (upper jaw). I went to my neurologist again and he placed me back on tegretol and like before a month later it was gone. This time I wasn't as fortunate, it was only gone for 2 months. Now I have been on 1000mg of tegretol a day for about 4 months and the pain is still there. Don't get me wrong the tegretol is helping to some degree. The pain (Type 2) is still around but it is bearable, I can still work and do many of the normal activities I would usually do. Some days are a lot worse than others. The other day I had a random attack for about 1 minute and I haven't felt that since I had it the first time around.

I am just confused and I don't know what to do next... Should I keep on the medication and pray it goes away?

2

Yes, keep taking the meds! I am on 1200mg a day now and still have a few breakthroughs. I am going to a neuro on the 4th of Feb. If you go about 2 months with NO pain, maybe you could wean down your dose a bit and see what happens. If the pains start coming back, you will have to go back up. Hope this helps! Welcome to the group. ((((((((hugs)))))))

3

Thank you for the reply. I have just been put up to 1200mg today. I will see how that goes I have an appointment with a neuro late March. Are you at all thinking of the MVD? I heard the longer you have TN the more likely your nerve will get damaged and the harder the operation will be. I am thinking as I am younger I have a whole lifetime of this.

Thank you for the welcome!

4

I have decided that when it gets to the point that meds aren't really helping or I am on such a high dose that I can't function at work, then I will do the MVD. I am not going to do any of the other treatments. The MVD IS the most invasive, but it has the highest success rate. There is a brain & spine institute in Memphis, not far from me and there is another in Nashville at Vanderbilt, so I can take my pick. Let me know how you're feeling. :-)