Hopeful with oxcarbazepine

General General TN & GPN (Old Site)
1

I've been dealing with headache/facial pain for about two years now after an unsuccessful sinus surgery. I think I fit into the Atypical Trigeminal Neuralgia, aka TN Type 2. My pain is a persistent dull ache just below the skin on my left temple. It's triggered by irritation inside my left nostril.

I've been on the med merry go round and nothing has worked except oral steroids which can't be taken for more than a few days. But then, yesterday, I started oxcarbazepine. The pain disappeared in about an hour. It's been about 18 hours now since I started it and the pain is improved. I've had several other meds seem like the work at first and then fail so I'm just crossing my fingers on this one. If this fails then I think I'll try tryleptal and trigger point injections. I'm also trying to get some lidocaine spray.

Does anyone find these triggers familiar:

  • Heat wave
  • Sinus infection
  • Alcohol
  • No real relief from opiods. (they help me cope with the pain but its still there)

I would ask that anyone with a similar profile reply with what has worked and what hasn't.

Thanks,

Robert

2

Hi Robert. I currently take trileptal and it has helped to keep the pain tamped down. It took an agonizing month to get in my system. But still have flare ups. Just started the neurontin yesterday. Barometric pressure changes effect mine. Wind of course. I don’t drink any alcohol any more cause of being too scared of effects from meds. I also take opiates when the drs will give them. The only one that has helped is Percocet 5mg. I split them in half and take every four hours. May just coping. Much luck to ya

3

Hey Ryan,

I take Trileptal and it works great for me. Over the past 6 yrs I've had to keep upping the dose and I'm up to 2400mg a day which is the max and my docs get all antsy about me taking that much but my blood tests are fine. Clearly the more you take the longer it lasts. I usually take 1200mg right when I wake up then another 600 around 3-4pm and if necessary the last 600 around 8pm. The regime varies some days as to when I take them but I'm getting by quite well that way.

Of course the side effects suck, sleepy, lack of motivation, shitty memory and such but nothing that's impacted my job too much.

My trigger points move around a bit every few months but I'm intimately familiar with the nostril point. It's the worst for me by far.

Best of luck man. Hang in there.