So I am very new to this but I am thankful for sites like this to seek support. I have read a lot of your blogs and it is a relief to see that someone else can relate to how this feels. I was diagnosed with TN in July of 08. This has changed my life. I used to be such a happy person, you rarely saw me without a smile on my face. Since my diagnosis I have not been the same. I am currently taking Tegretol and it doesn’t seem to be working. I can not even count the number of episodes I have a day, too many. I am considering having Gamma Knife surgery but I do not know much, just what I have read on the internet. Does anyone have any personal experiences they would like to share as this would be very helpful.
Hi Lori,
Sorry you are having pain.
My treatments included several medications. I initially tried Lyrica for a week and it didn’t help and I became allergic before I could increase the dose. I started on tegretol and got almost total relief the first day. I stayed on it for about a year until I developed side effects. I then started on neurontin for about 2 years and a very low dose with a few increases about 4 or 5 times during that time. Then on Oct 20, 2008, the pain became uncontrollable. I increased my neurontin from 200 mg to 3600 mg by the end of Dec. I added narcotics; tried several and were allergic to most. I added Cymbalta but was allergic. I then started on trileptal and still take it, neurontin and tylenol 3. I tried ganglion nerve blocks (4) but they helped very little but did help me survive until I finally had surgery.
I have not had gamma knife but I had MVD in Apr 2009 and am pleased with the result. Because I still have pain, I’m not sure how the surgeon categorizes my success. I see him next week for a follow-up. But even the worst days do not come close to comparison with pre-surgery. Of course, I would like to be pain free and free of medication, but that didn’t happen. But I do take less medication. And the important thing is the medication works. Before surgery it didn’t. I am like a new person. I considered both MVD and gamma knife but I really wanted the MVD. When I made the decision, the surgeon said I made the right choice.
Why did you decide on gamma knife? I’ve recently read that gamma knife is not as successful for one who has had MVD. So maybe that is the right choice. Then should it fail, maybe you can have the MVD. I am going to ask my surgeon about gamma knife. It may make me totally pain free. I’m just not sure I want to take the chance of a numbness side effect and the pain that may go with that. At least not right now when I’m doing well.
I personally feel that if I had had surgery earlier, that mine would have been more successful. I feel that way because I began feeling the aching pain along with the sharp pain a couple of months before surgery. I only had the sharp pain before then. And most of the pain I feel now is the aching type but do have some sharp pains (not really painful stabbing). I wished I had had the MVD much earlier.
That is my story. But all of the choices are tough decisions. There are many treatment and medication options.
Liz K.
Thank you Liz K. for your story it helps so much to know your not alone! My neurologist is the one who suggested the Gamma Knife procedure. I am currently researching as much as I can.
And Ro, I really appreciate the links you left for me to look at. I am not one to make a quick decision about any procedure. I will do my homework. I do understand the risks involved with all of the procedures. But my question is, when do we say enough is enough? Our quality of life is not what it used to be, but we can try to get it back. Being on the Tegretol makes me so groggy that I can barely function. Not to mention my short term memory is a joke. And I am still in pain. I have a very energetic 7 year old daughter that doesn’t understand why all I want to do is sit around and sleep. I feel like I am missing out on so much and she is growing up so fast. I worry I may lose my job, I have to talk all day. I have had the MRI and my neurologist said that everything looked good. I’m thinking he meant no tumors or signs of MS. I just don’t know, I guess that’s why I am here. I have not given up hope I had a period of remission for 4 months and it was amazing. I just don’t know what to do at this point. Any advice would be greatly apprectiated.
I will do that for sure, thank you for your encouragement and advice! 
Hi Lori
I have had TN since 2001. I was on Tegretol for the entire eight years. As the flare ups became worse and the pain free time in between became shorter, Baclofen and Lyrica were added to the meds.
Eventhough I continued to work full time, I was completely drained and just making it through each day. My tegretol levels were to the max and I started to develop double vision. This would just happen and was very scary. I finally made up my mind to go to a consultation with a well known Neurosurgeon and see about either Gamma Knife or MVD. If you have Gamma Knife, which damages the nerve, then the MVD may not work for you. The MVD does not damage the nerve. You need to have the MVD first if you want to not damage the nerve. I had two MRI’s and neither showed any compression. The neurosurgeon said he felt I had compression from my medical history and that it doesn’t show up sometimes in an MRI. It took me 6 months to to be brave enough to decide to have the surgery. He found two artery compressions and two veins interferring. I have been pain free since I woke up in ICU. This surgery has given me my life back. If I had known it could be like this, I would never have wasted all that time on the meds. My advice is to research everything. Good luck in whatever you decide.
Connie