I just wish I knew where this pain came from and why! My husband is going with me to the appointment so he can help me ask questions and take notes. The constant burning completely sucks but what a relief to know that others go through it. The gabapentin dulls it a bit (except for today; it's not helping at all) and the tooth pain is just awful. That's for your advice and support. I'll let you know how it goes with the Doc.
Jennifer Muir said:
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 was taking 2400 mg of gabapentin per day, and still had some pain. I hope your neurologist will listen to you, and has some experience with TN. Finding the right doctor can take some time, but you need to find one who will really work with you. I always tried to take someone with me to my appointments, since I would often have trouble remembering what the doctor said!
Best of luck
Christine/>
rooroo said:
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?
Can someone please help me I’ve been in constant pain for nine months and NOBODY will help me I’m in sooooo much pain. I don’t understand why nobody will help. Neurosurgeon called and said he won’t do gamma knife rhizotomys or nerve blocks. I’ve seen 15 drs!! He sending me to a oral surgeon for possible injections in the mouth but said he can’t guarantee she will. Please I’m begging for help what do I do?? I have no other options I cannot live like this. Nobody understands please help I can’t stop crying. He was my last hope and now he won’t BC I’m atypical
I’ve also had the toothache with TN and was sided say 90mg per day. I upped the dosage myself to a few more at a time till it was working and I didn’t feel like a total zombie. I think this round of TN is about done(which in so excited for! No more meds)… But I was talking 600mm every 4 hours @ 4 times per day. And done days more than that… Up to about 3000mg a day… And uh, that was without a doctor’s supervision. But, I know when my body has had enough and when to stop. I hope they dose you more appropriately then I dosed myself!