Forum

Trigeminal Neuralgia help needed plz some advice

Hi everyone, would really appreciate anyone’s help and advice on this. My Dr thinks I have Trigeminal Neuralgia and he’s started me on carbamazepine yesterday was just wondering how long it takes to work and your experiences of it. I’m reduced to tears with the pain this morning and it’s awful been getting steadily worse over the last week. I had the same on the left side 3/4 years ago and had a feeling then that it was TN but it’s now on the right side and so much worse, it’s hell on earth at the moment. Guess I just want to see some light at the end of the tunnel.

Marie

nothing helped me with TN :confused: until the nerves were severed due to jaw surgery, but that isnt a route i recommend since its caused a bit of facial paralysis. there is surgery but its not very common (mostly heard about it being done in the states rather then the anywhere else). I have had people tell me it took about a week for any meds to start working for them and many people do have good results with medication so it might work for you. try some other meds if this one doesn’t do anything for you.

sometimes eating certain foods will set it off, exposure to temperatures, even applying makeup for some women will trigger it, so its almost a case of trying to avoid those things if they make it worse. of course sometimes it just happens :frowning: it can be a horrible thing to deal with

1 Like

Hi Marie,

I’m afraid I can’t answer your question but I’ve had TN (not caused by MS) and I know what you’re going through. I can’t think of any pain that’s worse.

I hope you get some relief soon, but I wouldn’t hesitate to tell my doctor if the drug doesn’t work.

Best wishes,

Anthony

1 Like

Thank you both for your replies, I guess I’ll be patient the Dr has started me on a low dose and I have to increase it over a few days so I’m praying it does work although he has said if it gets worse to go back so fingers crossed it helps. What a flipping awful thing it is sympathies to anyone else going through it.

Marie

Thank you x

My husband suffers from this and has oxycarbazepine, which seems to me the most effect treatment for him. However it does not stop it altogether but helps to a degree.

1 Like

This is going to sound weird, but have you tried talking through it? I mean talking when the pain comes. It is really hard to do and horrible for the person you are talking to but it made a huge difference to my TN - pretty much made it go away after a few days. This was when I had my second bout of TN, about four months ago. The first one I had lasted a couple of months, a bit over two years ago. I tried several different drugs but they all made my walking and bladder control worse and I had to stop taking them before they touched the pain.

I think talking (or singing) during the pain helps because you are activating different nerves and the signals in the damaged nerve die down.

1 Like