Trigeminal Nueralgia

[Drea101]

Hello,

I am 26 yrs old and have been given Trileptal 300 mg 2x a day. How long does it take for it to work? It's been about a month and 3 weeks now and so far really doesn't seem to help me at all.

[Hidden]

Hello Drea101,

I don't know how much what I'm going to tell you will help, but here goes anyway.

My father was diagnosed with Trigeminal Neuralgia about 21 months ago. He was first put on the same dose of Trileptal as you and when that did nothing, the doctors added Rivotril (clonazapam) drops. I think he was on 2 in the morning and 3 at night. That helped for a little while, although the attacks didn't stop completely, but after a few weeks the pain became worse and the attacks more frequent. He was then given Scenar therapy (scenar-therapy.co.uk/scenar... once a week and this helped a lot, even making the pain disappear completely at times for several days. After a few months the attacks started coming back and as a last-ditch solution he was given transcranial magnetic stimulation (en.wikipedia.org/wiki/Trans... once a week, on top of all the rest.

As of last week he has now been totally without pain for over 5 months! His medication has slowly been reduced to 75 mg Trileptal 2x a day, 1 drop morning and evening of Rivotril, they have stopped the scenar therapy and he only has the magnetic treatment every 4 weeks. The doctors have said that the pain could come back at any time or it could stay away for ever, they have no idea, but we're keeping our fingers crossed that it continues this way.

The reason I said that I didn't know if any of this information would help you is that we live in France and the local hospital is a university hospital, so they have means that other hospitals don't necessarily have and I don't know what is available in the UK.

Perhaps you could speak to your neurologist about the treatments I have mentioned and see what she/he has to say.

I really hope you find a solution to your pain and fast.

All the best.

[Marz]

Do you know your B12 level ? If under 500 it can become a neurological issue without treatment. Injections would be best 😊