Trileptal

[Harpist]

Hi folks,

I just got back from my check-up at Holy Family MS Clinic in Spokane WA. Dr. Kanter has put me on trileptal (oxcarbazepine) in hopes of controlling some of the central neurogenic pain. Anyone have experience with trileptal? From some of the posts I've read here, I know it is sometimes used as an off-label treatment for TN, but don't have much info past that.

I'll be using it along with Neurontin (5400 mg/day) and hydrocodone (30 mg/day) in hopes of dropping the hydrocodone usage to zero. Any info/suggestions are welcome.

Good Roads

Harpist

[jena1225]

Hi Harpist and welcome. I am sorry, I do not know anything about that med, but thought I would give you a "bump" :)

[bygodde]

I think it is wonderful. I take it PRN when the TGN hits.

Good luck,

If it works, let us know. Maybe I could use that instead of Neurontin, which makes me really sleepy, as opposed to sort of sleepy with Trileptal.

Jessica

[Virginia]

I hope someone comes along who has some knowledge or has used this drug. If they do not please let us know how it works for you and the side effects. I use Cymbalta, but I can't use it very often. It helps the MS symptoms, but I can't sleep when I am on it, and that means even if I take it in the morning. It also causes the tremor to be worse.

Good Luck,
Virginia

[Abby2006]

I have never heard of the drug but
http://img206.**********.us/img206/314/welcome2yg1.gif to the board


Abbyhttp://img388.**********.us/img388/6650/ebible3sz3.gif

[Harpist]

I think it is wonderful. I take it PRN when the TGN hits.

Good luck,

If it works, let us know. Maybe I could use that instead of Neurontin, which makes me really sleepy, as opposed to sort of sleepy with Trileptal.

Jessica

Hi Jessica,

My first dosage of Trileptal made me sleepy (but then so did Neurontin when I started it seven years ago). I'll let you know how well it works.

Good Roads

Harpist

[Harpist]

I hope someone comes along who has some knowledge or has used this drug. If they do not please let us know how it works for you and the side effects. I use Cymbalta, but I can't use it very often. It helps the MS symptoms, but I can't sleep when I am on it, and that means even if I take it in the morning. It also causes the tremor to be worse.

Good Luck,
Virginia

Hi Virginia,

Cymbalta didn't do anything for me so Trileptal is my next try. Elavil was the one that gave me the shakes. One cup of coffee and I couldn't control my hands.

Good Roads

Harpist

[Harpist]

I have never heard of the drug but
http://img206.**********.us/img206/314/welcome2yg1.gif to the board


Abbyhttp://img388.**********.us/img388/6650/ebible3sz3.gif

Hi Abby,

Thanks for the welcome. I haven't posted much since the board when down last year and reset all the post counters. But the "oldtimers" probably remember me from the original MGH starting back in '98.

Good Roads

Harpist

[K969]

Hi Harpist,
I have not heard of the drug you mentioned but then that happens alot here with me being in Australia and you lot the States.

I can only assume that it is in the same family of drugs as Carbamazepine???????????????

I am on that for TN in my right arm. To begin with I was put on Tegretol but the side effects were just too much to handle so down to Carba was the next best shot. In the beginning I had to change the dosage coz it was knocking me out in the middle of the day and so i only took the night time one. Now I am back on to morning and night. Looks like it might be Upped again too as the pain in the right arm is terrible. Have just received my new Glove that was made to help with the hand side of things. So here's hoping.

Love to all
Tracey

[Harpist]

Hi Harpist,
I have not heard of the drug you mentioned but then that happens alot here with me being in Australia and you lot the States.

I can only assume that it is in the same family of drugs as Carbamazepine???????????????

I am on that for TN in my right arm. To begin with I was put on Tegretol but the side effects were just too much to handle so down to Carba was the next best shot. In the beginning I had to change the dosage coz it was knocking me out in the middle of the day and so i only took the night time one. Now I am back on to morning and night. Looks like it might be Upped again too as the pain in the right arm is terrible. Have just received my new Glove that was made to help with the hand side of things. So here's hoping.

Love to all
Tracey


Tracey,

Trileptal (oxcarbazepine) is indeed of the same family as Tegretol although it works on a different set of pain receptors. I am a bit confused by your post. Carbamazepine is the generic name for Tegretol. Was it a different dosage you changed to?

Hope the glove works out for you.

Good Roads

Harpist

[mbsews]

Hi folks,
Anyone have experience with trileptal? From some of the posts I've read here, I know it is sometimes used as an off-label treatment for TN, but don't have much info past that.

I'll be using it along with Neurontin (5400 mg/day) and hydrocodone (30 mg/day) in hopes of dropping the hydrocodone usage to zero. Any info/suggestions are welcome.

Good Roads

Harpist
Trileptal is almost the same as Tegretol with a longer half life and fewer side effects (no blood count monitoring needed). I have used Trileptal to supplement neurontin and now Lyrica instead of neurontin. It has been extremely helpful in controlling my nerve pain when it flares.

I still need hydrocodone sometimes but not on a regular basis.

I also don't perceive any side effects at all from Trileptal...unlike neurontin which stimulates my appetite at higher doses and Lyrica which makes me dizzy at higher doses.

[NattyNat11]

I was on Trileptal for about a year and a half before I did my surgery. I found it made me a bit groggy but it helped diminish the pain for a long time. Gradually it stopped working for me and I switched to Topamax (which I was severely allergic to). I have heard it is the lesser evil of all the meds. I bit the bullet and did the MVD surgery. I have no regrets, thrilled the nightmare has ENDED finally...