Just looking for opinions or experiences from other with ATYPICAL tn. What options do you think I will be offered? Do you think there’s a chance I won’t be offered any? The dr is supposed to be one of the best in the area. I’ve tried numerous medications which I either can’t tolerate or don’t work. I’m currently on 800 mg 3x a day of nuerotin which helps a bit but not enough and I’m just done with it. Willing to try anything to move on with my life get off meds and have a baby. Comments please
Hello
I feel for you I have had the same issue over the years. I know your frustrated. Go in with an open mind, the Neuro Doc may recommend gamma, balloon compression or even MVD surgery. All these three tend to have there unique pros and cons. The reality is simple you may have to follow through with a procedure to get off medication:however, there is no guarantee...sometimes procedures don't go as planned and the condition may worsen so go in and gather information. Whatever you do,please do not try and tapper off the meds without close MD monitoring because it can be dangerous. Please keep us informed
Stay well
~E.
Neurontin is basically Gabapentin? and I was dosed 300mg 3x a day, but have upped it to 600mg 4-5 a day - between 2400-3000mg a day now and it's starting to NOT work.
Please let us know what recommendations the doctor gives you, I'd be interested in knowing as well.
Yes neurotin is gabapentin. And I will definitely keep everyone informed on what he says. Edster you think even though I’m only atypical he will still offer those? I’m so scared he won’t.
Evening here in UK…good luck with your appointment today! Let us know what happens…can appreciate you being scared as you have ATN like me.I would be too!
Well good and bad news…he didn’t want to go forth with any surgeries, but has colleagues in Ohio ( I’m in fl) who he thinks may be able to help with implanting device known as a pns like a nerve stimulator. He’s going to get in contact with them . this is all just so confusing
That sounds like a good option. I read a little here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482565/
But, don’t have time to research it’s success rate…
Thanx for the article
I have had a PNS for two and a half years, and it works very well on my ATN pain.
Please ask me any questions you may have.
Christine
Thank you so much Christine please tell me what your symptoms were before the pns?
I have bilateral TN, with both the shocks and chronic burning boring pain. I have all three branches affected on both sides. I had MVD on my right side, which stopped the shocks, but not the burning boring pain. Seven months later, my doctor suggested the PNS, and that has worked very well on controlling the pain in my scalp, eye, nose, face and teeth on the right side. Three months later, I had MVD on my left side, and that stopped both the shocks and burning boring pain on that side. Within two months I was no longer taking gabapentin, ( I was taking 2400 mg per day) and have remained medication free since then.
If you are a candidate, I would definitley recommend the PNS! Although I live in Georgia, I traveled to NY to see my neurosurgeon. There are not many doctors that use the PNS for TN, so be sure to see one with a lot of experience. It will make all the difference.
Christine
Christine was the pain in your teeth a constant pain like you wanted to rip them out?
I had a constant ache in my teeth, especially the upper ones. Sometimes, it would get worse, and I couldn’t eat or speak for a while.
Sorry so many questions but was it like a major surgery did you really hurt afterwards? What was recovery like?
It is not major surgery at all. In my case both the trial and the perm were done under heavy sedation and were outpatient. You will be sore, especially around your chest, where the battery is, but I did not find it extremely painful. You will have to be careful with your chest and neck muscles for about 6 weeks, and not lift anything heavier than five pounds. Otherwise, you won’t have too many restrictions. I was feeling really good within a week.
Please keep asking questions, I am happy to help if I can.
Happy New Year!
Christine
Christine said:
It is not major surgery at all. In my case both the trial and the perm were done under heavy sedation and were outpatient. You will be sore, especially around your chest, where the battery is, but I did not find it extremely painful. You will have to be careful with your chest and neck muscles for about 6 weeks, and not lift anything heavier than five pounds. Otherwise, you won't have too many restrictions. I was feeling really good within a week.
Please keep asking questions, I am happy to help if I can.
Happy New Year!
Christine
Hi Dan,
My neurosurgeon is Jeffrey Brown in NY. He is one of the few NS who uses the PNS for TN , and his practice is focused on facial pain. If at all possible, I would encourage you to meet with him.
Please feel free to ask me any questions!
Christine
OSUBUCKS1 said:
Hi Christine,
I’ve had failed MVD and GR. I asked my neurosurgeon about PNS, and he said that because my pain is in the lower jaw, there was no place “to anchor it.” I’m not sure what he was really talking about it, and he didn’t provide any details. I’m not sure what to do, but I have to keep looking for a solution. Which doctor did your PNS?
-Dan
I also have atypical TN (left side of face, tingly on nose, burning left side of tongue and deep constant tooth ache).
Today is a rough day as the Gabapentin doesn't seem to be working. I currently am on 900mg/day and need to have the dosage increased.
I am seeing a neurologist on Tues 1/12 and I feel overwhelmed. But it's good to read these posts so I somewhat know what to expect. I just hope the Dr. takes the time to listen to me as I explain what I've been going through since July. Took 2 months to get in!
Does anyone have any recommendations for what I should ask the Dr. about?
A neurologist is just going to try to either increase your meds or your change your meds. Meds don’t work very well for me but I am on gabapentin as well with very little relief. I’m not working with a neurosurgeon but having trouble getting him to commit to anything since I’m atypical. I have constant burning and throbbing teeth on the left just like you. Being atypical makes it so much Harder to find help it sucks. But just be adamit that you need something done. Please let us know how your apointment goes
I’m now working with*