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.

I have heard of this before,, in fact there is a self published book called "Tuesday at two oclock" or something close to it...anyway it recounts the trouble one patient had with facing TN and his ultimate decision to end his life hence the title..Tuesday at 2 o'clock was the time he had chosen.

He is then taken to a Chiro who does this specific type of manipulation and in time it cures/controls his TN. Very quickly in fact.

I saw a wonderful Chiro for many years who did not believe that there was any difference between this "specialized" manipulation or just seeing a good Chiro on a regular basis..
I believe that there is a society of Chiro's that do this specialized manipulation and you should be able to check their website to see if there is one in your area.
Is it worth trying,,you bet,, but as with any TN treatment don't believe that this is going to fix everything,,it probably won't and it's not worth getting your hopes up for nothing.
With any luck you will get some relief at worst you won't be doing anything that will make the condition worse,,so I'd go for it and keep an open mind,,stranger things have happened!!!

Wishing you luck and many pain free days ahead ,, Beth

I asked a regular Chiro about this. He said that he felt the problem with 'specialist' chiros is that they tend to be very keen on their particular area of speciality but that they keep their patients going back to them 'forever' whereas if he can't fix somone within a couple of months he will refer on. He said there is no real research evidence for upper cervical in relation to cranial nerve problems but that also there will be and are cases where the miraculous does happen. So his advice was if the pain is bad enough by all means give it a try, it's not impossible that it won't cure you but if it doesn't help don't keep going. I considered it but in the uk there is only one NUCCA practitioner in London and the cost of treatments and travelling, time off work et, x-rays was staggering.

Well, I've had 3 visits now to the Chiropractor. So far so good. I am now able to tilt my head back all the way - something I have not been able to do in about 15 years since I first injured it. I have gone from having my sharp and telltale TN pains in the right side of my face every time I brush my teeth, to maybe one little pain when I brush at night. I am happy with this.

To be honest, I know visiting the chiropractor will not cure me (and my chiropractor was very up front and told me this - that at best he can help me to reduce my meds if anything), and the reason people have to keep returning is to keep the spine in alignment.If this is the reason for my pain, if the spine is not aligned, maybe that's where the problems is. I don't know. I am just so over the pain and am up for anything. I am very lucky as this chiropractor who specialises in upper cervical treatment comes to my area twice a week.

I'll keep everyone up to date of my progress.

I am very glad that you have had good results with seeing this Chiro.

Again,,I believe that as long as it won't do any more damage then by all means give it a try. I will say that when I was able to see my Chiro on a regular basis I felt better and my TN was more controlled...that being said it does not help everyone.

There are so many root causes of TN that it would be impossible for one thing to help control it. But anything that can help is a good thing.

Again,,I'm very glad that you are getting some relief,, even if it's just because you had an underlying injury that is now being addressed,,whatever the reason,, any relief from this disorder is a blessing..I am glad for your blessing...

Good Luck and keep us posted as to how this process works for you......Beth

Hi. Just a quick update. I'm still seeing the chiropractor once a week. I am getting maybe a couple of stabbing pains a week, if that. I have managed to reduce my medication, dropping the Lamictal altogether, still taking 600mg Tegretol a day. I will start to reduce that soon also, slowly to see if the pain comes back. Soon I will reduce my visits to fortnightly.

I am staying positive. I am trying to reduce my stress. So far so good!

I will still keep you posted.