No, I've had good results from Carbamazepine chewables, they come in 100mg, Right now I'm taking the 200mg extended release version. I think & hope that this latest episode is coming to a close. Thanks for your concern.
My prayers are with your son. Rick
ac said:
Rick, have you tried Baclofen. it seemed to work for my son who is only 10 years old.
Hi Foxycita,
I'm 98% pain free with low dose Carbamazepine and hopefully no meds in the near future.
I'm going to NYU Langone Center which is a top hospital in NYC on 11/5/14 This Dr. is the head on the Neurology Dept. and I'm being told not your average Dr. The consultation is 2 hrs.so I'm expecting some hopefully valuable info.
I'll post my results at that time ! Thanks for your concern, Rick
Foxycita said:
Rick I have had a lot of help with topamax. I have severe GPN as well. It greatly reduced my symptoms. The heat that felt like a blow torch out my right ear is now spread across my head and down my neck at a much more tolerable level and is constant so I don't even notice it. The pain is also spread out diminished and consistent so I don't feel the shock of someone stabbing me with an ice pick at random times so it is a lot more tolerable to. Of course I am still looking for something more so I am not in any pain but this medicine has been successful for others in smaller doses I am just maxed out. Good luck on your search
I'll remember that RX Lee, I'm just about pain free right now so I'll keep you posted.
LEE said:
Hi Rick,
I've had two Mvd surgeries, acupressure numerous meds but the only thing that helps me if Tegretol every 3-4 hrs, 200 mg each tablet. Please try this until the nerve calms down.
After my 2nd Mvd and the monster came back again 2 months ago I realized Tegretol works. Set your phone alarm and take it every 3-4 hrs!! Needs to be 200 mg xr
Trust me, 500 mg will not work.
I had met someone online and that was his advice and it worked.
Hang in there!!!
Lee
Hi Vic
Great to hear that You woke Up painfree. Did You have a MVD Or Rhizotomy?
You MIGHT be Right THAT The nerve Nerds time to recover. I will at least wait 6 month before I try The next Surgery.
Ciao
MIKE
I woke up pain free. But recovery was a mountain to climb.
Remember the nerve has been compressed for a long time and the damage can take a long time to heal. Nerves are fragile. Hope yours recovers.
My surgeon told me he never does rhyzotomies, so it was an MVD of the PICA and Vertebral arteries, involving the 9th and 10th nerves. He put in a Teflon bridge stopper and 2 slings to keep the vessels away from the nerves. At least that’s my understanding from reading the discharge summary.
Hi Vic
I had the same procedure done.
Who is your surgeon OR which hospital?
Dr. Fukushima, Duke Raleigh in NC.
Ok … I don’t know him.
I have seen 3 surgeons in NYC and IT seems that Rhizotomy is not that popular. I think it’s like the last resort solution if everything else fails.
Hi Rick, I’ve been in situations similar to yours. My GPN started some serious 6 years ago. After the first diagnosis, I was put on tegretol. At the time, I was on under 300mg a day, and was doing mighty fine. Over the years, it would flare for about two to four weeks and with increasing dosage of Tegretol, I was able to bring it under control.
Unfortunately, over the years the flare periods have increased and with them the daily tegretol dosage. I’m currently suffering a flare that’s been going for some two months. The tegretol dosage per day is now at 1,800mg.
My Neurosurgeon is not keen on surgery. Eventually I guess I will have to consider it more seriously. For now, I’m happy to go with tegretol and hope that it goes away, as it has done over the years! I find reducing stress factors helps.
I’m in Cambridge, UK.
Regards
Max
If I was on your shoes I’d ask other neurosurgeons for their opinions. There are many who are keen on MVD. I’d do it again if the pain comes back. I wouldn’t have my surgery by someone who isn’t keen on a procedure. But it’s your brain, your choice! Best of luck to you and I wish you pain free days!