so, just an update, i have TN on both sides which was cause by hospital dental work (i still need some teeth pulling) someone has just upset me so much.
they said that because i have it both sides that an MVD operation would not work as there is a compression of the nerve and this is much less likely to be the cause of bilateral TN.
im so upset i just don't know what to do apart from ending my life, thats the only way out from this. im sorry but im so upset.
Dear 'fed-up'
Really sorry to read that things are so wretched for you. Life can be a real bummer at times! Please get some professional help to support you through this. I'm not an expert on what's available but The Samaritans would be an option and they're just a phone call away. People think that such support is only for others but it's not - it's for you and me - ordinary people who have been pushed to the edge for whatever reason! Do something, my friend, that will bring some fresh hope, new ideas and perhaps another way of looking at life. Don't let this pull you down any further, you're worth more - we all are!! Take care of yourself. Colin x
Know you are not alone and suicide is not the answer. I did some research on bilateral trigeminal neuralgia and found an article in the Turkish Neurosurgery 2007, Vol: 17, No: 4, 294-296. It says that it is possible to do bilateral microvascular decompression surgery. I myself have unilateral TN, but have had two MVDs. Please talk to your neurosurgeon about bilateral MVD. It might bring you some relief. If you haven't spolen to a neurosurgeon, you should. Don't give up. And advocate for yourself with your healthcare providers. I am sending good vibes your way.
what a strange thing for them to say. I dont see how it makes a difference whether you need to have two done or one. I am seeing a top surgeon in Sydney in two weeks and i will ask him while i am there. just waiting for an appointment but i expect it to be either the 12th or 15th June that i see him. Dont listen to that person,you need a second opinion. Ask for a referral if necessary but see someone else. I cant beleive someone said that to you. *shocked*
thanks Colin. im sure you said you were on 600mg of tegretol a day? are you on anything else?
thanks Cary, im at the pain clinic next month and i will ask if they will refer me, but i don't hold out much hope they will want to try allsorts and make it worse for me, i really don't want injections and whats not. but as i have it on both sides they might, just might refer me.
it upset me so much it just felt my whole crashed in, like theres no hope, i would be very interested to hear how you get on.
i called my doctor, the very helpful one, to say i would like to change my tablets and he said to stay on the ones im on and that he would prescribe me morphine, i said no, i don't like the idea of morphine as i need to have my wits about me, i have a son to care for and need to be able to drive for appointments, he said if i didn't like it then i could get another opinion, so i got another opinion. he was very rude and i was really upset as he's been so helpful, everyones knows theres no painkiller in the world that will touch this, otherwise we would all be on it living happy! the next doctor gave me what i wanted and thats tegretol no problem, he said to take 200mg twice a day and keep on the gabapentin and then i could change to pregablin later. so its 200mg a day 12 hours apart and im petrified im going to get pain inbetween those 12 hours, im really panicking.
Hi there
Good to hear from you.
I'm actually on 400mg a day, as things have subsided a bit. I keep the dose to the minimum that will just suppress the pain. It's working and I'm very lucky, I know. I'm not on any other medication.
The pain clinic you are visiting sounds a very useful way of gaining access to others who might help you - getting your GP to recommend an alternative consultant on the NHS might be tricky unless you intend to pay, then they'll be happy to refer you elsewhere! However, the pain clinic might be a way in - use them well!
Good luck and stay strong! Colin
Hi again
I think our messages crossed 'in the post'!
It's a difficult one, you have the drug you feel you need - Tegretol - but you're worried about the time between doses. I guess you'll have to trust the new GP and see how things go! I know what you mean by being 'terrified', we just wait for the thing to kick off, don't we! When I get an attack, I just freeze, scared of moving a muscle and if I'm lucky, it will subside. Keep in touch.
PS How nice to hear you have a son!!
Did you get a chance to look at the Journal article I found for you. You could download it and take it with you to the appointment. Also check out The National Institue of Neurological Disorders and Stroke, and rh Trigeminal Neuralgia Association UK. Remember your teeth are not the problem. The problem is the nerve. You can remove the teeth, but the nerve is still there. So no teeth pulling. Have you been given any medications: carbamazepine, pregabelin, etc.? if you are in an episode then you need to go to the hospital. Be armed with information about TN and keep advocating for yourself so you can get some relief. Peace be to you.
so you still get some pain? its bad enough being on one side but coping on two is crazy, i can't understand how come i have it on both sides. i guess im just lucky!
Yay! so you found a doctor who can help you 
a big plus for you and a jump forward. I know what you mean about the 12 hours. when it gets to about 11 hour mark i make sure i am somewhere warm and calm because if its a cold place (like outside in the weather) or if i am running around doing things, i get very worried and i am sure that must be a trigger so i avoid those things until i can take the next medication. You have made progress though which is wonderful.
My gp here where i live says you can have an mvd done both sides, just not at once. i will ask the specialist. its the top thing on my list of things to ask. Hang on fed-up. we're with you.
I feel you're pain I honestly do I'm a 21 year old boy and have been suffering with this for just over a year. It's nearly got that point with me a few times.life is so precious, how I looked at the situation is the smallest glimpse of life is better than none at all. I have severe anxiety which does not help my situation if I can pull through I almost certainty sure anyone can. Much love joshua
not yet but i will read it, thanks
im sorry you have this at such a young age, did it just come on? yeah, i have anxiety and it makes it worse being anxious worrying about when its going to strike!
Dear Fed up how long ago did your TN begin?
your pain brings me to tears. I have just been diagnosed with TN although I am sure it started years ago only this time it is more severe. My GP prescribed Carbamazepine 100mg twice a day, today 2nd day not helped yet but have to give it time. There are two possible causes for me teeth but also where some of the pain is I recently had treatment for Basal Cell Carcinoma and my skin started to react to the treatment so instead of having one sore I had about six sore and it looked raw. I stopped the treatment Alderma in the 6th week couldnt take it no longer, I put Sudocrem on face and it healed over however the pain is in that region and further along nontheless one cannot help wonder what is going on in the inside. I have had cancer previous (not skin) and one does get panicky and anxious which definately makes matter worse so the condition intensifies. I now try and remain calm play relaxation cd's and tell myself to not let the fear creep in as things may not be as bad as we think they are i.e. tests might reveal negatives :-) being as though your condition started after dental work your jaw was stretched deep and wide I daresay.(I am going to dentist day after tomorrow... I will let you have some VERY very interesting info on this when you hopefully have acknowledged my post. Are you in UK?
Peace and calm be with you
Barbara
hi Barbara
i was diagnosed around 4 months ago, for about 5 years on the right side i had been getting a niggly thing and i was at the dentist every december with it and they couldn't find anything wrong, mind you they never took an xray, keeping with this dentist he pulled a tooth out on the bottom left hand side, it was a bit of a struggle getting it out and while he was pulling my jaw to the left i was pulling it over the the right! he told me he had got all the tooth out, i got dry socket and sharp shooting pains, the dentist was absolutely useless and couldn't care less. i changed dentist and it was the best decision i've ever made, my new dentist is the best, he found out the previous dentist left some root in my gum so he arranged to get that cleaned out, meanwhile i had been getting weird pains on the right side, he took xray after xray and found nothing and he wouldn't pull a tooth out or drill into them. (just before i saw my brilliant dentist, i saw a german one at the same practise who filled my back top tooth when i had been getting pains in it and i asaid it should come out and not filled) my dentist arranged to have this tooth pulled at the same time as the other to be cleaned because it was close to the sinus at the hospital the dentist cleaned out the area, got the root outand stitched me up, over the other side, he yanked that tooth out so bad i swore, i've never known anything like it in my life. so im sitting in recovery and had shooting pains where he pulled the tooth out and all he said was i''l have to go to my dentist. pains stopped for a while and had a good christmas and then it all started again and my dentist had said it was neuralgia and that was it, TN on both sides!
i've been on other meds but i was taking them like painkillers on very high doses and they stopped working so i asked my doc to put me back on tegretol (same as you're on) and i take 200mg twice a day.
you sound like you've been through it too! i hate hearing of new people being diagnosed with this every day, it makes me laugh when they say this is rare! im interested in your info!! sorry its been very long!
yes, im in the UK