Welcome Carly,
I agree wholeheartedly that TG pain is some of the worst pain known to man...or woman. I've had toothaches, shingles, kidney stones....and Trigeminal Neuralgia beats them all. After a year and a half, I am finally experiencing relief by way of oxcarbazepine (Trileptal). It has taken about 6 weeks, but yesterday was my first day in 18 months with no face pain. I was first put on carbamazepine (Tegretol) and also tried gabapentin (Neurontin), but the side effects from those were just too much....dizziness, drowziness, headaches, nausea. I also went the dentist route last fall....had a tooth removed all in vain....before properly being diagnosed this past January by the emergency room doctor. I am now under the care of a neurologist.
I mentioned in another thread that back in the early 90's I had very sharp pains in my right temple area for several months off and on, but never had it diagnosed. I suspected then that it may have been due to stress or some environmental stimulus....such as air pollution or pollen, or even possibly my diet, but I was only guessing at it.
Best of luck to you.

hi creekman,
i was first on the carbamazepine but it was really bad with the side effects and im now on gabapentin and thnakfully im not having no side effects from it at all but it isnt working as well as the carbamazepine did, so i take a couple of co-codamol if the pain gets too much. im back at the doctors this thursday and he's going to refer me to see a neurologist to see what they say.im just glad that ive got people to talk to whose in the same boat as noone i know understands what its like.i keep getting the sharp pain in my temple quit alot at the moment its awful.

carly

CC,
You are not alone. Everyone's response to drugs is different. Don't get too worried as you will find a drug that works for you. Once you get ramped up/down to a good balance, your body will get used to any 'minor' side effects. Definitely see a neurologist who is an 'expert' in TN treatment. I'd also recommend getting an MRI done and have the neurologist or a neurosurgeon read the MRI. They will be able to diagnose anything banging into the Trigeminal nerve. Even the most aggressive treatment (MVD) isn't as bas as the pain. Believe I know. I've had TN for 7 years and have done all possible treatments including gamma knife. On 4/3/09 I had the MVD surgery. Best decision of my life! Pain free upon waking up from surgery (at least from TN). Two weeks later I feel wonderful with no pain at all.

Best of luck. Again, you are not alone.

thedspeth,
thanks for your post, ive been recently thinking more about surgery. i know ive only just been diagnosed with it but i think id rather have the surgery and be pain free than be on medication for the rest of my life.im only 22 and i dont want this to take my life away, ive also got a 2 year old so i need to be alert and clear headed for her!
id appreciate any thoughts on whether or not i should have the surgery done sooner rather than later, as im still weighting my options up at the moment.
when i saw my doc first he did mention doing a mri but he didnt say anything about it last time so i dont know whats happening about it now.
im just a little bit nervous about the surgery cause from what ive read up on it theres apparently a percentage that it could leave that side of the face paralized? have you heard of that aswell?
thanks, carly

Carly,

I have heard of people who've had the MVD surgery and had some facial paralysis. I've never heard of anyone who's entire left or right side drooped or that severe. I had some numbness on my left cheek, but the feeling has since returned. I still have an area (2" x 2") behind my left ear at the top of the lobe that is still numb. It's only been 15 days since my surgery so I'm not really worried aabout it. I'd rather have numbness and some facial paralysis than the amount of extreme pain I was suffering the last 2 years. I would have done my MVD surgery sooner if I'd had my neuorsurgeon read my MRI back in 2006. I could have saved myself a lot of suffering, time, money, etc. If your pain level was anywhere near what mine was (10 on pain scale for days at a time even while on 1600mg of tegretol/day), then you won't worry about a small chance of some facial numbness.

Seek out an 'expert' neurologist and/or neurosurgeon who has lots of experience. Check them out. It's worth your time. We are all pulling for you in here regardless of your treatment decision. Stay strong and keep the faith. There is a treatment out there for you. :)