I am taking three of the 1 mg B12 sublingual supplements. Is there a maximum, especially for those with TN?
I'm trying to see my neurologist to change my tegretol to something else, hopefully with less side effects. Is there a normal progression from one drug to another? I've been on tegretol since 11/23, and even on a low dose the side effects are getting hard to tolerate. Or is it possible I'm expecting too much?
Thank you. I'm new to TN and have learned a lot on this site.
Unfortunately you sound like me you just want it to be gone. I have been on gabapentin and recently had a spinal cord stim placed. I was so hopeful that it would all be gone and it’s not. It’s better but I still have pain and burning. I hope you find something that works.
Hi Liz,
Yes Tegretol does have a number of side effects and I've read it can be difficult to tolerate, I have got a supply of it on standby but haven't taken any yet. When we have this pain we are often asked to "weigh up" the pro's and cons of each medication. Often the drive to lessen the pain means people will put up with all manner of side effects but the good news is that your body will acclimatize to many side effects eventually. That said, you are right to be asking questions on whether this is the right drug for you.
If you and your GP both feel that you've given Carbamazepine a good chance and cost/benefit is not favourable, then Oxcarbamazepine (A close cousin) might be one to consider as it often has less side effects. Like Stephanie I'm taking Gabapenitn, this or Pregabalin (It's cousin) may also work better for you. If one drug doesn't work, or stops working you have many other options to explore with your GP including the combining of drugs. I'm on Gabapentin along with Amityptaline but I have also recourse to Diazepam or codeine if needed for muscle spasms or breakthrough pain respectively (My condition is tied in with a Jaw Joint/TMD problem)
While AED's, TCA's and Opiates are the mainstay drugs for treating the condition many have reported success with Lidocaine or Capcaisin patches. The former is an strong nerve anaesthetic and the latter a substance-P depletion agent. Both extremely promising treatments if you've not yet tried them.
I'll have to leave someone else to answer the question about B12 supplements - this is not something I've had direct experience with but it's something to add to the list to try ;)
May tomorrow be a lower pain day than today.
Lukey.
Thank you Lukey. I've been on Neurontin for quite a while. My neurologist added tegretol when it started to get worse. I've been spacing the doses out equally. The memory loss and inability to comprehend can be pretty bad, but I haven't had any nausea. I'm sticking with it until I see the doctor. I guess I should give it more time anyway. He really hasn't given me an official diagnosis of type 1 or 2, but I think it's atypical.