My drs have had me on gabapentin for my trigeminal neuralgia since basically the beginning of my diagnosis. I randomly have periods of time were even 900mg 3xs a day doesnt help with the pain is this normal for medications not to work randomly? The pain has been getting a lot worse more often ive been in the er twice in the last month because my normal treatment isnt helping. I feel like im at the end of my rope I dont know how much more I can take
Hello Tracey,
You should ask your doctor to either add another medication or try a different one altogether..You are having break through pain..The doctor can prescribe something for that..You may have to experiment with different medication to see what works the best..Hope you find something that works..
That was happening to me so my Doctor added baclofen with the gabapentin and it worked. I still feel pain but it's bearable . I'm looking forward to MVD surgery.
Hi Tracey, I am so sorry you have been having so much pain. Under the face pain info tab, at the top right of page, is a great section on coping with a pain crisis. It is good to have a plan in place for times such as this. Perhaps the next time you see your neuro or regular doctor you will want to discuss this. Also a pain specialist can help with this. I am not sure where you live but if you google oral pain specialist hopefully you will find someone. Where I live I need a referral from my doctor. That referral might also be something that should be started at your next doctor appt. I am so sorry for dumping all this info on you when you are not feeling great but you are your best advocate. Knowledge is power my friend. I hope you get relief soon.
Thank you all for your help and advice…I have been on the baclofen before it didn’t help me unfortunately. My pain I thought was the worst thing I would ever experience but lately its getting worse…I definitely need to see if theres a pain specialist around me or if my new neurologist can try to switch my treatment. My previous dr wanted an mri of my head because my symptoms seem like I might have a tumor as well I was too scared to find out so I put off going I finally went today so hopefully I will have news soon
Hi Blessed I am also looking forward to my MVD I was wondering do you have TN1 and the baclofen worked for you what branch is you tn in V1 V2 V3 just curious because i need to ask my doctor for a medical to help get to my MVD just had bad reaction to trileptal and had to stop taking and Gabapentin is not working and I am on 4000mg a day
Thank you for your response and God Bless
Blessed no matter what said:
That was happening to me so my Doctor added baclofen with the gabapentin and it worked. I still feel pain but it's bearable . I'm looking forward to MVD surgery.
Hi Tracey and KATTHOMPSON, TN pain is indescribable, unbearable, it’s the most hideous thing… I’ve had it now since 2009, Tegretol has worked the best for me, although the dosage is getting higher and higher, even then there are times when my 800mg a day don’t work, then other meds have to be taken, it’s not unusual to have weeks/months when the pain is too much to bare…
I’ve had an MVD, so don’t be scared, it’s the most invasive but the best thing to have done…
I encourage everyone to have it done, if their a candidate for it… Mine didn’t work unfortunately, but yours might, it’s worth a chance, hope you all go well, let us know how it goes, hugs Anne