Trigeminal neuralgia meds. Desperate.

[InnaN]

Hello,
I'm in the 4th month of trigeminal neuralgia bout. Had dental x-rays (clear), MRI (clear), tried osteopath and accupuncture (to no avail so far). I'm on 1200 mg of Carbamazepine a day which took about 50% of my symptoms away, my pain management dr decided to put me on pregabalin. I'm on 200 mg a day now (not sure if it's doing something).
I don't feel the lightning shocks anymore but still in excruciating pain in the teeth and jaws. Could you please tell me what meds you were on and at what doseage that helped you? How much time has passed when you felt some decent pain relief?
I'm a newbie to MN and a foreigner, please, forgive me my mistakes.

Bump. Please, anyone?

When j was first diagnosed I was on carbamazepine, then pregabalin, gabapentin, and finally oxcarbazepine which I only stopped taking when I became pregnant and switched to lamotrigine. Oxcarbazepine worked the best for me with the balance of pain relief and lack of side effects. I was also on a low dose of amitriptyline alongside the different anti-convulsants, 75mg, which helped me to sleep and took away the aching and tenderness pain where the anticonvulsants helped with the electric shock pain.

@addler

When j was first diagnosed I was on carbamazepine, then pregabalin, gabapentin, and finally oxcarbazepine which I only stopped taking when I became pregnant and switched to lamotrigine. Oxcarbazepine worked the best for me with the balance of pain relief and lack of side effects. I was also on a low dose of amitriptyline alongside the different anti-convulsants, 75mg, which helped me to sleep and took away the aching and tenderness pain where the anticonvulsants helped with the electric shock pain.

Thank you for your response. May I ask you if you take meds permanently?

I don't actually. I was diagnosed 7 years ago and it's fluctuated a lot since then- luckily it's never been as bad as when I first got it. Once I found the right meds for me my neurologist was happy for me to self adjust the dosage slowly, as I don't want to be on meds if I don't need to be (if it's in remission) as I don't like the side effects.

So I take enough that it gets rid of the majority of the electric shocks (although they've never completely gone) and there's just some breakthrough pain every so often but not enough to affect my daily life. If I've noticed things have been better for a while I'll bring my dose down slowly mix and have even come off them completely for months at a time. Then if it starts to come back and seems to be lasting longer than a few days I'll slowly reintroduce them, first amitriptyline and then the anti convulsants.

But this is something that's been agreed to with my neurologist over the last few years, it's definitely not an approach that will work for everyone.

Great. I'm happy for you:))

Hi OP. I was diagnosed with TN about 7 years ago.

Carbamazepine knocked me for six. I couldn't take it due to a wild range of side effects. So I've been put on gabapentin, which is similar to pregablin.

I had to raise the dose to 3 x 600mg a day before the majority of the pain stopped and have been at that dose ever since, dropping a middle of the day dose when I'm having a good run and taking the full 3 doses when it's less good.

Hi, thanks a lot for telling your experience. I wish you more good days than bad ones.

@InnaN hi how are you now ?
Im going through investigation for this. But the oral max thinks its tmj! could u please tell me what helped etc

I suffer with neuralgia a lot but mine is in my scalp. My gp put me straight on gabapentin. Night be worth speaking to your doctors about changing meds.

My dose is 200mg twice a day as needed. I normally only need 1 dose to take the edge off.

Thank you ladies for your concern. In my case it turned out to be trigeminal neuropathy from the face injury. The options slightly vary from the trigeminal neuralgia.
I was on pregabalin maximum dose for 9 months. It helped a lot though at times I felt like a zombie. Then my dr insisted I should change the meds. So now I'm on Gabapentin min.dose and duloxetine min.dose. I still feel some pain/discomfort almost every day but thankfully no more electrical shocks.
I also had a nerve block (no effect) and botox injection (no effect).

@Terminallysleepdeprived how was u on the gaba? Ive just been prescribed it and abit nervous with side effects. Im due back to work from having my baby. Worried that it may not be able
To work/drive xx