I was diagnosed with TG about 1990, it was all a bit matter of fact from the doctors and consultants I saw on the NHS. I was told 'people live with pain', given options of burning the facial nerve or head surgery (the later requiring who knows how much investigation before) and spent months bouncing around to arrive at these options. I was 23 scared and in pain.

My TG started as the odd spike, I was thinking I am sure like other sufferers that it was a dental issue but it got worse and worse. Nobody could understand the pain I was in, it was basically 24 hrs non stop, luckily I was young and strong and I got through that but the options given to me did not seem to be confident ones, I was put on Tegretol for 3 months, initially it suppressed the pain but after that wore off the doctors just kept increasing the dose, I was like a zombie (and told I might experience memory loss!!!), I stopped taking the drug and turned my back on the health system. There was no way I was going to take a synthetic drug for the rest of my life with unknown implications, I was only 23!

So I just got on with life, the lack of Internet made research limited, I realised anxiety and stress could bring it on so I tried as much as possible to avoid getting like that but it is not always that easy. I started self medicating with lager, not a particularly good idea but after 4 pints I could feel the nerve thrashing around but could not feel the pain ! Clearly this was not a long term solution or correct but on Saturday evenings it gave me a break from 7 days of agony, at the end of the day we all went to the pub every Saturday so I just used the social experience to give me freedom for an evening. If you are a sufferer you will know there are good days and bad days, as I have got older I have noticed it would go quiet for a month and then come back, could never quite spot the triggers. I have the odd cup of coffee (maybe 2 in a month) but I have never been a coffee drinker and I understand coffee can antagonize the nervous system. There was actually a period from about 1994 to 2004 where it went away, couldn't understand why or what had changed but it just stopped. It came back early 2004, I was devastated, and had to adjust having it again like brushing and shaving certain ways, chewing on one side etc etc and just living with it, it was hard but it made me so angry I hated it and fought it every day, "bring it on" I would say to myself, "is that the best you really can do to me??".

In autumn 2010 by chance I met a homeopathic therapist through friends, she turned my life around and showed me that there are potential cures and gave me hope. She told me to take vitamin B12, and Omega 3 and started giving me acupuncture in the legs and feet to address energy issues (I guess I was in a mess) and eventually acupuncture on my face at the same time. She also prescribed for me Chinese herbal tea remedies. After about a month this approach suppressed it and I had 2 months free of pain but then January 2011 it came back in vengeance and I had a terrible month. We persevered, she changed the tea recipes, it came and went like a roller coaster ride and eventually the TG was under control, not fully gone but just giving me spikes instead of prolonged pain, that was last Summer. I moved away in July and stopped seeing the therapist then I ran out of tea, I was traveling during all of August with no treatment, needless to say as September 2011 started TG was back and full on. I was in agony and called the therapist, she sent me a tea recipe but said I should also try XUE FU ZHU YU WAN. I was in London mid September so went to a Chinese medicine shop and bought 2 months worth. You need to take 8 pieces / balls of this 3 times a day so I organize that with meal times, I also still take Omega 3 capsules (1 capsule a day at breakfast) but no longer take B12. September was bad, I could hardly eat, October the pain was less and by the end of November the TG was gone (I had purchased another 2 months supply during this period) This second lot took me to mid January then I stopped as I had ran out. I had 6 weeks without pain or spikes and continued only to take Omega 3 once a day. Then about end of last March (2012) the odd spike started, I immediately went out and bought 2 months more of xue fu zhu yu wan. The spiking stopped shortly after restarting, this time I will continue to take xue fu zhu yu wan for 3 or 4 months after the spiking has stopped, then try and gauge how long I can get away before it starts again.

I have written my story here to give other sufferers hope from my experience. My TG is not gone but it is under control, I am able to live a life without pain. I can not guarantee this remedy will work for everyone, as I learnt through this experience there is no black and white in medicine. I had given up and thought I just had to suffer but the homeopathic therapist I met and this remedy has shown me that is simply not true. After 20 years this has been the only thing that has worked for me.

Good luck John

I realize that you are in London and some things there may be different so I hope I can give you a bit of advise.
As you say TN, does not go away however you seem to have a history of fairly clear remissions, so it may be hard to know what is really working for you and what may be just another stage of remission.

I would suggest a few things, first eliminate aspartame (equal), MSG, caffeine and avoid all tooth whitening products (use peroxide and baking soda instead). And if you smoke try to quit or move to the electronic smokes. Get back on the B complex not just B12 and stay on it, it helps repair damage to the mylean sheath around the nerve and it works.

Get good sleep and avoid stress,,that's just the quick basics. I can see that you prefer a holistic approach to treatment however that may not be the best approach..since you were diagnosed at an early age you have learned over the years that for you, periods of remission may or may not continue. The best way to control TN is to prevent it from flaring up. The best way to do that is with medication.

Again, we work in different health care systems however over the many years since your original diagnosis they have added many medications that you may not have as severe a reaction to. So going on low dose anti convulsants to prevent it from flaring is your best long term option unless you want to consider having a procedure done.

I am glad that you have found some relief with a homeopathic approach, but as this disorder continues it normally gets worse and that approach may not continue to be effective. I hope you continue to receive benefit from your approach but if it does not please remember that there are a lot of medications that you can try and you will probably find one that helps for the long term. Hopefully you will continue to have periods of remission most TN patients do not,,you are very lucky.

Since you are in the UK, you need to check the threads here on NeuroTalk, I believe that is where the post is. A company in the UK has developed the first medication expressly for TN and I believe that they will be releasing it in other European countries in 2013,,so you might want to look into that.
Here in the US we will not have access to that for another decade with our FDA regulations....

Look into it and let us know what you find out...Thanks and good luck

I found Johns post searching the Xue Fu Zhu Yu Wan. It is one of the formulas I was given and I wanted to know more about it. It is one of the many I am taking for all my medical issues. I have become medication intolerant and now have liver and intestinal issues. I stopped digesting and none of my dr's could help me (frequent issue for me) and the gastro dr. recommended enymes. I was taking 20 a day to no avail. I went into a local Chinese Medical clinic. The dr. was ancient, practicing long than I have been alive. He diagnosed all my issues and said my heart was very, very, very weak, ( accupuncturist translates) He put me on several formulas. I was eating meat within 2 days! I hardly touched it for years, it was so difficult to tolerate. I am amazed at how well I feel for the first time in 20 yrs! I highly recommend those old Chinese MD's for any chronic condition. Western medicine is so focused on pharmacueticals and surgery. He has saved my gallbladder, removed my liver pain, helped my muscle pain and is helping my brain with all the circulatory issues. Someone told me that they are vested in their patients continued wellbeing, because if they get sick they lose face....
This guy knows his stuff.

I am glad that you have found relief in searching out alternative therapies. For some patients they can prove to be invaluable for others not so much.

As in any practice MD or alternative so much depends on finding the right practitioner. Where I live finding someone who actually KNOWS what they are doing is next to impossible, I'm glad that you have better access.

As in any therapy we need to be careful that we choose the correct therapy so as not to mask our TN and make it more difficult to treat. I have worked with many patients who refuse to use standard treatment because they are afraid and believe that an alternative treatment will be safer. We all have to remember that whether it's standard treatment or alternative they should all be considered drugs and used very carefully and only under the supervision of someone who knows what they are doing. Using the incorrect vitamin can be as dangerous as using the incorrect medical treatment.

I believe that for many of us alternative therapies can be very beneficial, as long as they are used with caution and not with a belief that because it's natural it can't hurt you.

Again, I'm glad that this is helping you and that you were able to find the right person to advise you. Good Luck!!