Trileptal?

[jbeth71]

I am very newly diagnosed - 2 months - and I'm not taking shots yet. Supposed to go back to neuro in Dec to talk about which one although I'm not sure yet I'm going to start one. Most of my initial symptoms have gone away, other than some numbness on left side of my tongue. I am having major pain though that doesn't seem to fit ms or maybe someone can give me some advice on it. It starts in my head, right in the center, and runs down my spine and in my shoulders. It's a cramping pain like tension but nothing seems to help. I called the Neuro's office and he prescribed trileptal. First of all, I did some research and this does not sound fitting for the pain I'm having and 2nd, I've not seen nor heard anyone else talk about being this med that has ms. Can someone shed some light on this for me? I haven't started taking the med yet because it looks like it is for people who have seizures which I do not have. Anyone have any advice?

[SNOOPY]

There are very few symptom management medications specifically for MS, most symptom management meds are used "off label" for MS.

Yes, Trileptal is a seizure medication. It is also used for depression and pain.

I have used Trileptal, briefly, to try and treat pain which may or may not have been MS related.

My experience with Trileptal was not a good one but I am extremely med sensitive, I have problems with medications in general.

You won't know if it helps unless you try.

[jbeth71]

Thanks for response! I guess I will try it and see if it helps at all. What can it hurt right???

[mjan]

HI and welcome~!

My concern is WHY you are having this knd of pain? Whats the source and have you had an MRI for it?

And why Trileptal..did you ask the doctor why he chose that med? I was on it but at the time they thought I had seizures. For ME, I had a reaction, headache that got worse and then a rash. Turns out I did not have seizures but still, like Snoopy, I am very sensitive to meds.

Just curious why that med for pain. It may work and yes many Neuros will not use Opiates for pain because of the possibility of addiction.

Good luck on this med and yes I would like to know how this Medication works for you.

Please let us know how you are doing.

Warmly, Jan

[StephanieG]

Trileptal

My five year-old son takes Trileptal twice a day. He has for almost a year now because he was diagnosed with a mild seizure disorder. He was having Petite Mall (?sp) seizures so they gave him Trileptal....he hasn't had another seizure since he started taking it. However, he also had a good 2-3 months of being tired and very cranky after he started the medicaton.

I have M.S., but my neuro has never even mentioned Trileptal to me. I can't imagine why your neuro would be describing you Trileptal if you aren't having seizures of some sort? Be sure he's got the right patient....something doesn't sound right....Good Luck!

[MrsBones]

I have M.S., but my neuro has never even mentioned Trileptal to me. I can't imagine why your neuro would be describing you Trileptal if you aren't having seizures of some sort? Be sure he's got the right patient....something doesn't sound right....Good Luck!

As SNOOPY mentioned, except for Ampyra, there are no MS specific symptomatic medications. They are mainly drugs used off label for one symptom or another that they were not intended or approved to treat.

The two you might be most familiar with are Provigil ( approved for narcolepsy and shift work disorder) and Gabapentin/Neurontin (a seizure med). As long as there is nothing else to contraindicate the drug's use in a patient, they may safely be used. In fact, many people take doses far greater than used to treat the disease/disorder/symptom they were originally developed to treat.

The anti-seizure meds tend to work much better than traditional pain killers on nerve pain for most people. This may be why the doctor chose this particular med. Different types of pain would require different types of treatment.

[MyGirlsMom]

jbeth, I was on Trileptal for about 4-5 years before my MS dx. It was prescribed for mood and depression. I recently got off it (want to see if I did have any MS sxs) and found that I had major/burning tingling and numbness in my jaw and right leg. My plan was to be off all meds for a month, but I only made it five days. I immediately started neurontin and my pain (plus some new pain that started while on the Tripleptal) is much better.

To my limited understanding, Trileptal is a neuropathic pain medication and can be used for MS; however, more success is typically recognized with neurontin and that seems to be the neuropathic pain medication of choice.