Trileptal

[Suzy003]

Hi. I was diagnosed with ATN 14 years ago. The pain has been well-controlled with neurontin until 3 weeks ago. I had an exacerbation of pain, most likely brought on by dental work. The pain was an 11 on the 0-10 scale. Since the pain has only calmed down to a 7, my neuro added trileptal with the neurontin. The trileptal is being titrated and I'm at 750 mgs per day right now. Can anyone tell me at what dose of trileptal you got some relief from the constant crawling, burning, crushing type pains? Also does the side effect of nausea and just feeling crappy all over from trileptal eventually subside. I also have MS. Thank you. I am hoping and praying that this drug will help. I am scared that there may not be another option as my MS neuro is advising against surgery, including gamma knife.

[Suzy003]

I am getting pain relief on tegretol. I currently am taking 100 mgs. 3x's a day. Not experiencing the zombie.. I did try acupuncture 14 yrs. ago when I first started experiencing the pain. I found the effects to last for about 1 hour. Any relief is well worth it when you are in crisis but eventually I couldn't keep up with the cost of the treatments (insurance did not cover).

[nancy99n]

That's the problem with TN, what works for one person doesn't work for the next person.

My experience with Tegretol is it made me a zombie. Hope you're doing okay on it.

Have you investigated the other options like Accupuncture or a stim (implant)?

[Suzy003]

Thank you for your response. Unfortunately two weeks after I started Trileptal I developed a rash. Now I'm on Tegretol. I did feel like I was getting a little pain relief while on the Trileptal. Just hoping Tegretol works for me. Want to get out of this constant pain so I can get back to doing the everyday things I used to enjoy.

[nancy99n]

Sorry to hear your pain has gotten worse after 14 years.

I also have MS and experienced TN1 (electric shock-type pains) about 5 years ago.

I was on six 300 mg tablets of Trileptal (daily) at my worst.  It completely controlled the pain.  But my doctor and I found that the generics didn't work as well and I was on brand-name only  

Trileptal, like all these meds, can cause depression -- so be aware of that.

As for the nausea side effects -- I found that taking it right before I ate was the best timing.  Also I used candied ginger (found in the health food aisle at the supermarket) helped cut back on the nausea.

I also found that my MS neuro -- while fine with diagnosing TN, was not very helpful.  I went to a teaching hospital in a large city nearby and found a Facial Pain specialist who deals with facial pain patients on a daily basis.  He helped me tremendously and I have been pain free and medication free for the last 4 years.

Take care and let us know how you are doing.  Your story may help others here on the site.
Nancy