After some wonderful people on this site recommended my mom take gabapentin, we got a prescription immediately. Now I’m sad to say that medication is no longer working for her. She cannot eat talk or hardly move for the pain is too gruesome. I am wondering if anyone has any recommendations for treatment options other than gabapentin. Thank you so much for your time in responding. Does anyone have any success stories with a certain treatment option?
Hi mymomrocks,
When my pain started to get out of control my dr put me on gabapentin. Within the first year I kept needing the medication to be upped. I ended the year on 3200mg gabapentin and 600mg tegratol a day. I was still experiencing pain and ended up having a successful MVD at MGH in Boston. I have seen that many people have luck with lidocaine patches and creams though.
Best of luck,
Merrrra
Thank you so much for your response I will look into those options for her
Gabapentin alone was fine for me in the beginning, then they added Oxcarbapezine (Tripetal). For me the combo has been great.
I’ve heard that tripetal works well! Thank you very much for taking the time to respond
Can you tell us how she is taking her gabapentin? i.e. 300mg 3 times a day? It works best when taken at regular intervals
and some found it helpful to take 4 times a day. I take mine 3 times a day and have had to increase quite a bit this year. Originally it helped me at a very low dose for the first 2 years. It also helps to combine with another med or even two. Very often the combination is more effective than a single med.
btw, you might want to consider purchasing the book "Striking Back!" by Dr. Kenneth Casey. There is a wealth of information about TN that will be right at your fingertips.
She’s taking 600mg 4 times a day at this moment
Wow. Is she type 1 or 2? Is she being treated by a neurologist or gp? Some here go to a pain management doctor (pref. anesthesiologist).
I don’t know what type she is… She sees a neurologist, cranial sacral doctor, chiropractor and two family doctors. She is nervous about the surgeries like the gamma knife. She thinks it will paralyze her face. She has had MRI’s countless times just nothing is giving results. It’s to the point she can’t speak, eat or get out of bed because the pain is so horrible.
Has she tried Lidocaine patches? Some here swear by them. Is her neurologist familiar with TN? Sometimes we have to get second and third opinions. If you don't think she is getting the help she needs there is a list of doctors that have been recommended by LWTN members and you could also call the FPA for a recommendation. Do you or are you able to go to her doctor appointments with her?
Not yet I think I’ll tell her about them and see if they will help! Thank you so much for your help