newly diagnosed... I think

Yes, this does sound like trigeminal neuralgia. The carbamazepine is the standard medication for this condition as well as some ibuprofen for pain control. May be caused by a blood vessel being inflamed right next to the trigeminal nerve bundle causing inflammation (which is why an anti-inflammatory may help also-ibuprofen). It can go away as quickly as it appeared (let's hope so). If you think it could be something else, then I would suggest a brain scan (CT or other) which only a specialist will do. My advice is to watch and see, if it gets worse or more frequent ask to see a specialist if it goes away, thank your lucky stars!!! Hopefully never to return. Good Luck!!

My suggestions..

Find a neurologist or a doc who has heard of it.

The only test is an MRI that sees if you have MS or not, other than that, they can only go by your symptoms . There is no test.

Do your own research so you know what your options are. Being your own advocate is the best way to go.

Web search...trigeminal neuralgia surgery, or just trigeminal neuralgia, will send you places where you can see your options and what it is.

There is a trigeminal neuralgia foundation.

These forums can be helpful but not always.

I researched and researched, found a neurosurgeon who specializes in trigeminal neuralgia and has done a lot of these surgeries and am pain free after a surgery called radio frequency where they burn the nerve.it is not a cure, just a temporary fix, hopefully years of relief.

Best of luck.....

Thanks for the reply I will be looking out for a better doctor and will have a neurologist booked in soon I am getting blood tests done on Tuesday and was told by the ED doctor they would organise an MRI with the neurologist in 6 weeks.

Just to clarify with the carbamazepine this may be covering the symptoms and I should not stop until directed and once I am diagnosed this is something that will probably return in the future but who knows when. Would that mean that sufferers determine when they start taking the medication again or do they take it all the time even when in remission?

Thanks heaps you've been very helpful.

In my case, when it returned, I had left over med..oxcarbazepine....and just started taking it until the second surgery could happen. I have a surgeon who understands this problem and got me in the next morning. So I say, save meds OR have someone ready to prescribe immediately. A good doc/surgeon for TN should get you in immediately. All something to discuss with your people. I now am asking for a specific plan from my surgeon/doc when this happens again.

I say, do everything you can possibly think of to protect yourself so you aren't left in pain at any time.

Then, it becomes a life problem that is being managed instead of a horrible nightmare that visits you and leaves you victimized.

Best of luck to you!

Hi

You are definately suffering with TN my son has the condition and just woke up one morning shouting with pain like u ended up taking Dan to the ED. it is normally treated with gaberpentin or Carbamazepine tablets and when you see the neurologist he will confirm that these drugs are only effective on pain caused byTN. Carbamazepine is a drug also used by people who have epilepsy, it disrups the pain messages from getting to the brain,my son is on 2000mg a day. Good luck when you see the neurologist keep me posted how you are doin, my son has had the condition for three years. All the best

Hey guys so it's been 4 months.  Had my mri, all clear so the neuro is certain its tn, I have been pretty good for about 4 weeks with only slight pain but a constant headache I am only on 300mg of tegretol twice a day but neuro has said I can up it until I am without pain. Ive been having blood tests to check how everything is going to make sure I'm not having any adverse affects to the tegretol, last month everything was normal however today my liver function tests were alittle high, in fact that gamma gt and ast were 3-4 the normal reading. Had anyone else had this and what are you experiences. My gp told me too drop down to 400mg a day.