After suffering with the pain of trigeminal neuralgia and the side effects of drugs like Neurontin and Trileptal, I opted for a Gamma Knife Radiation procedure. In a month, I was off the pills and as the year progressed and scar tissue built up I was pain and pill free. It's been 4 pain free years and I would do it again if needed.

Sorry that you are suffering so. I was diagnosed in 1999 and have had the stereotactic radiosurgery and an MVD. Unfortunately, neither have had great outcomes. I had a few good years after the radiosurgery, but the pain returned with a vengeance and I then opted for the MVD. I now have occipital neuralgia as a result of the MVD. I currently am taking Cymbalta, Topamax, Amitriptyline (to sleep), Fentanyl patches and Vicodin as needed. Some days are okay and some are not. I recently retired to try to manage the pain without stress and I'm not even 50 yet. And I loved my job! I meditate and try not to live mired in my pain. Life is too good to miss! Some days, mine is a little lacking though... 🙁

Mayo Clinic has a truly respected reputation. I wish I would have sought counsel there. My suggestion would be... to be sure you trust who is doing whatever you do and ask a LOT of questions. Take someone with you to hear all of the answers. Sounds simple, but can be oh, so important.

I agree with you wholeheartedly, I have a similar story, however, I have also been dx with Sjogren's and Fibromyalgia. But I suffered with the trigeminal neiuralgia for years and wish I had all the money I have paid out for it. Also, I had to medically retire at 49. Getting to the right doctor is key to your health and your life quality! I have had shots in my face, around my right eye and every kind of treatment imagineable and more. My pain was helped with Botox shots in my face, eye and trapeziod muscle. It took about 3 times and now my pain is manageable. I wanted to have the surgery I was in such pain, but the MD I was seeing did not believe me and actually scolded me for wanting to have the surgery. You must have a doctor who believes you when you tell them what symptoms you have.

You are quite lucky the gamma knife worked as it's not the procedure that is often successful. I had the gamma knife and then mvd and still have pain just not as frequent or mind bending and have the entire right side of my face in pins and needles mode most of the time and now the sneezing has restarted, which is controlled by the Trigeminal nerve. Good luck to you! I hope it lasts a very long time :0)

Hi, I too suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don't think we are alone with our suffering.

Hi LaNita saw your post and curious.....i have been suffereing from face pain after dental freezing for 3 years now....at first it was dizzyness and some face pain but now 3 years later is still dizzyness and severe face pain and headaches...saw 3 neurologists they never even touched my face....!!!!! i had to ask the 3rd one to touch the sore area and he said it was "a bone" i wrote him a nasty 6 page letter....went to a dentist on Monday and he said trigemenal neuritis and my God...they should have been able to diagnose this!....anyways now going to see a maxifacial surgeon or pain management doc as he said they treat this now with Botyox...but what caught my eye is now as of february i have this severe pain in my trapezius muscle......serious pain...nothing on xray nothing on ct scan nothing on ultrasound...finally after 5 months my doc injected it with cortisone and it lasted about 3 months but now he doesnt want to do it anymore !!!!!! i dont get these Doctors...he told me to come back in 3 months so asking...how did your trapezius pain start and does botox work for the pain ?