Has anyone tried Trileptal for atypical facial pain or Trigeminal Neuralgia? If so what was the outcome and side effects? I will be doing a trial of this for 5 weeks and I am quite worried about its side effects, liver damage? etc.???

I haven't taken Trileptal, but I have taken Tegretol, and they are very similar.

Tegretol made me very tired and dizzy at first, but I adjusted to those side effects within about a week, I'd say. When I was on it I did think more slowly, but not less astutely. I think this experience is pretty common. A lot of folks here have taken Tegretol.

When on Tegretol, my neurologist did periodic blood tests to make sure everything was alright with my liver- there were never any problems. Trileptal is not as harsh on the liver as Tegretol. From wikipedia:

"Oxcarbazepine [Trileptal] is a structural derivative of carbamazepine [Tegretol], with a ketone in place of the carbon-carbon double bond on the dibenzazepine ring. This difference helps reduce the impact on the liver of metabolizing the drug, and also prevents the serious forms of anemia [lack of iron] or agranulocytosis [deficiency of some immune system cells] occasionally associated with carbamazepine."

If you are female (sorry, I don't know if you are or not) it is important to know the Trileptal can interfere with hormonal birth control, and also probably increases the risk of birth defects. When I was on Tegretol, the neurologist was adamant that I take extra Folic Acid to offset some of that risk.

In summary, you're probably going to feel tired and dizzy and a bit stupid for a while, but other than that, you'll probably be just fine. And even better, it will help the pain go away! Don't be afraid!

Oh. It's probably also worthwhile for me to say that if I could, I'd be happy to take Tegretol again. It was very effective, and I adjusted to the side effects. The only reason I no longer take it is because of its interference with birth control- my husband and I don't want kids, at the moment.

From personal experience, I found that worrying too much about taking a medication makes it much harder for me to see the good effects it is having. I take Tegtretol--the "parent" drug of Trileptal. I was worried at first about the liver problems--but that is being watched with blood tests.

Honestly, I was very worried about some of the side-effects. I am very med sensitive and have bad experiences with a lot of drugs. I was apprehensive, but desperate for pain relief. I tried Lyrica and Neurontin--too many side effects. All I know is that I wanted this drug to work and my body to tolerate it. I didn't know how I was going to make it through much more pain if it didn't work. For me, desperation outweighed my worries.

I have been on Tegretol about 9 weeks now and it is working very well for me. My pain is mostly at a 0-2 level, with fewer breakthrough episodes the longer I take it. I do not drink any alcohol or take any Tylenol--both bad for the liver even when not taking Tegretol. I would avoid them even if I was on Trileptal. No need to add any more health risks to the table.

Your doctor will titrate your dosage--you will start with a very small dose and increase it gradually. I do suggest that you give it more than 5 weeks to see if it works. It will take 2-3 weeks just to reach the dose your doctor wants you on. Then you have to find the theraputic level that works for you. It takes time to get to the right dose for many people. I noticed my pain levels went down quite a bit when I had been on my therapeutic dosage for a good month.

My Neurologist described the actions of anticonvulsants as "dampening down" the nerves that conduct the pain. It takes them a bit of time to fully respond to that "dampening" effect of the med.

When you start the Trileptal, keep a pain level chart so you can see a bit more objectively how your TN pain is responding to the medication.

Are you modifying your diet and managing other triggers? I stay on a semi-soft diet and that helps me a lot. I also try to avoid the things that trigger pain episodes. I have a polar fleece hat and scarf ready for winter winds, keep my hair pulled back, avoid loud noisy places-if possible, and so on.

I am so sorry you have TN, it is not something I would wish on anyone. Thank goodness Neurotalk is here for support and information. Having any chronic illness can be isolating, try and stay in touch with people who understand your illness, it makes all the difference in the world.

If I ever have to stop the Tegretol, I am very glad Trileptal is there to take its place. I hope very much that Trileptal will work for you--no one should have to live with that much pain.

from lifesaver54

Thanks for the replies. The thing I am concerned about is that I have atypical facial pain(constant throbbing in upper right molar #2) and I have not found much research that trileptal will help with this. I have tried Lyrica, Tramodol, and Baclofen with no results other than Tramodol helps somewhat but is way too sedating. One thing about my neurologist and facial pain specialist is that I don't think they are good listeners, to my history, to my symptoms, etc. I still believe as my dentist does that I have an unresolved dental issue(for over two years now) but since I have been under the primary care of the neurologist and facial pain specialist I have been following their opinions and going that route. With the trileptal, one approach I am taking is that yes I will take the medicine for a month or so and if it helps than maybe it is really atypical facial pain and I need to decide if I want a lifetime of trileptal, but what will that do to my body over time?..that is why I probably would not take it long term. If Trileptal does not work than it shows that even a gold standard medicine such as this(and Lyrica, etc.) is not working and that maybe I really do have a dental issue that I will pursue with my dentist going forward. Does this make sense? The neurologist and facial pain specialist are worried that any more dental work may cause more problems which I completely understand, but maybe that would be the solution after all...i.e. extraction or root canal surgery , etc. Tough decision. Thanks.

Alex

Alex

Any news to the Trileptal? is it working for you?
I just started taking tegretol but a baby dose of 100mg and will work my way up to a threapeutic level.
What are you guys taking in addition to Tegretol for the atypical pain?

Thank you

Alex,

I am currently experiencing a situation VERY similar to what you have described. I am curious to know if you have been able to make any progress or find relief from your facial pain.

Thank you,
Ginny