Hi. This is my first post, although I've been following this forum for over a year. My TN has always been controlled well by Tegretol, and have always read other's stories, thankful that I have been so well....until the last 6 months. Here is my story:
I was diagnosed with Trigeminal Neuralgia 3 years ago when I just woke up one day with it - mandibular jaw, right side. I was diagnosed after 6 weeks of unbelievable pain when eating, talking and brushing my teeth - very typical TN pain. An MRI ruled out any specific reasons for having it.
Tegretol has controlled it until Christmas 2011, when I had to gradually increase the Tegretol to 500mg a day, and haven't been able to decrease it since. Another attack recently after a stressful event and I am on 600mg of Tegretol a day and 50mg of Lamictal per day, with break through pain when brushing teeth and a little when eating. But I am reluctant to increase the meds as it makes me very drowsy with double vision and poor memory if I go any higher, and am already struggling to concentrate at work.
With desperation I recently started to think about why I have this horrible, horrible disease, and spent some time googling. There must be an alternative treatment. I have come up with Upper Cervical treatment with specialised chiropractors, and found one in my local area (outskirts of Sydney). I have had the initial x rays and found my head to be on a 4 degree tilt to my spine. I remember having a neck injury some 15 years ago, with a sore neck ever since. I have had one treatment after which I had the side effects he warned me about (initially a stiff neck, and increased pain upon brushing my teeth). I am due to have another 2 treatments in the coming week. I have researched and it may take a few (3-5) treatments before I see results and start to reduce my meds. After this I may just need some "maintenance" treatments to keep everything in alignment.
I was wondering if anyone else has heard or tried this treatment, and if they found success? I am at the desperation stage and have decided I do not want to live the rest of my life on these horrible meds, or with this unforgiveable pain.
This is a horrible "disease", and I feel a kinship with every one of you out there who live with this on a day to day, step by step basis. It is so good to be able to support each other.