Trileptal
 

I'm just wondering if anyone has used this for pain and if you have did it or does it help?

Yep, I'm still trying to find something that will help with pain and obviously not having a lot of luck :rolleyes:

Not tried it, but sorry you are still having to search! :hug: Snoops!

Hi
 

Hi Snoopy,

I actually had to look at my pill bottles to make sure thats what I'm taking. My first Neuro. gave me Gabapentin for pain but my last Neuro gave me this stuff - Trileptal. I had to use 7 days of 1/2 a pill (twice a day) and now I just started the full dose of two pills daily. I think it works a little, but hasn't taken away all my pain on the left side. I really don't know which worked better, the Gabapentin or this. If this doesn't get better I might go back to the Gabapentin since this is $170 since my insurance is capped out. I just started using this about 8 days ago but it has made my left side a little better but not sure if other pain killers might be better :eek:

Monique

I don't know about the Med, just wanted to give you a Gental healing hug..:hug:

Sorry for your continued pain Snoopy! :hug: I have pain too, and I think it's controlled somewhat by Cymbalta. I'm trying to cut down to 30mg from 60 and my pain is more intense. I doubt my pain is as bad as yours though.

I'm also down to one Baclofen a day. I don't like that they all make me so foggy. I wish they'd come up with something that would just block the pain, and leave all the other senses intact with no side effects. That would be a best seller.

I hope Trileptal will work for you. I have a friend with TN who takes Tegretol and it's all that helps. She doesn't like to take it, but doesn't like the TN pain more. :-(

My mom takes this in combination with another med and it works great for her. She has Trigeminal neuralgia and it causes extreme pain. This is the only thing that's worked for her.

I am taking it for TN and have had relief. My TN is not severe. It comes and goes.

So far it has helped a great deal with the soreness and aching I have in the right side of my face. I can actually put my head on a pillow at night to sleep now.

But it is not doing a great job on the sharp break through pains I get once in a while. But over all I am happy with it.


As for the rest of my body I have noticed an decrease in the edgy uncomfortable feeling I get in my legs and lower back.

It has taken things down to a low roar right now. We'll see if it stays that way. I assume it is all nerve pain I am getting a bit of relief from.


I am on a low dose right now. As long as that works well enough to make me happy I am not going to increase what I am taking.



LA

Monique, thanks for the laugh although I'm sure that wasn't your intention :D ( I have a strange sense of humor :rolleyes:)

I'm starting Trileptal like you - half a pill (300mg) twice a day for 1 week then 1 pill twice a day. I don't usually take much medication so I need to go through all the different meds and start throwing out what hasn't helped before I get confused :eek: :rolleyes:

LA, I'm glad Trileptal is helping. At this point I would be happy with a med that would take the edge off but if I find a med that takes the pain completely away I'm throwing a party :D

Wouldn't that be great Wiz - no side affects and no pain. We can dream :)

Here's a list of what I have tried so far and either the med has not helped or I have had trouble with side affects:

Cymbalta
Lyrica
MJ
Nortriptyline
Klonopin - I get some relief but only for a couple of hours

I've been on Trileptal for siezures since, Jan '07. I wanted to go off it, but since the doc believes the MS is making me susceptable to them, I'll be on it forever.

Last month, I had run out and didn't realize it for a few days. The darn tinglies, heaviness and numbness in my hands had gotten unbearable. When I realized the lapse, I doubled the doses that day. I was amazed that it really made a difference in my pain level. Now I'm willing to take more in hopes of more relief.

I take 150mg 2xday and 300mg at bedtime. It does make me a bit sleepy, but I take Amantadine in the AM to help.

I hope you get some relief. I swear the sensory stuff is pure HE!!. Let us know.

:hug:

Thanks, Beth.

I will let you and everyone else know if Trileptal or any med helps. In fact I will probably shout it from the roof tops :D

I'm glad Triletal has helped you :hug:

Darn Trileptal
 

Well..
I went to the UGA doctor today about the dizziness and headaches and all the other funky symptoms I've been having the past week and thought was due to low blood pressure.

He thinks it's probably the Trileptal since I've been on that about 10 days and just bumped up the full dose 2-3 days ago. So, now I have to try and taper myself down and see if that makes me feel better to get off this stuff.

I will probably have to go back to Gabapentin, ouch my brain hurts. I just wanted to give an update that the Trileptal has only helped a little bit but if its causing the side effects it's not worth it, for me. So.. now have to see if something else works.. darnit :hissyfit:

Monique

On it too
 

I've been on Trileptal since diagnosed PPMS in Dec. 2007. Am now up to 600 mg. twice daily and I don't know if it's doing anything.

I was on Neurontin with it, and that gave me intestinal problems when I got to the higher levels so I got off of it.

Then I was put on Lyrica and am up to 150 mg. twice daily. No difference.

I just asked for Cymbalta and will begin at 15 mg. at bedtime.

All this time, I'm continuing on the Trileptal cause the doctor wants to only change one thing at a time to see if it works...which makes sense.

I'm just being hopeful, but it seems as if nothing wants to help my tough pins and needles in my feet, all day and night. But I'm not giving up until I have to!

Good Luck to you!
Kippy

Thanks for the update, Monique.

Dontcha just love side affects....NOT! I know how you feel - it's very frustrating trying to find a med that helps but not make you feel worse.

I haven't had a problem with side affects....yet. But I haven't increased yet :rolleyes:

Kippy,
Yeah.. I have been put on so much different medication in the past four months I can't keep them all straight. I am used to meds not working, it's when they cause side effects *lol* in addition to all the other symptoms that I have, then I have to drop them. So, time to say goodbye to Trileptal and see if I should go back on Gabapentin. I guess I'll have to get used to the pain, cause the headaches/dizziness/low blood pressure, etc. is really starting to stink! I hope your pain goes away!!

Monique

:Wave-Hello: Hello Kippy and welcome to NeuroTalk!


Well, if your not sure the Triletal is helping it's probably not :(

Your doctor is right in only trying one thing at a time. I hope Cymbalta helps you.

Snoopy,

I am hoping and praying it works out for you!! I don't know why its giving me side effects or if it even is.. but the doctor thinks thats the reason I have been messed up the past week. It's hard juggling between my Neuro. and my PCP. I wish I could just clear all my MS symptoms with hot chocolate or something.

Monique

Monique, haven't you heard - chocolate cures everything :D

( where is our dear monkey when you need her)

If only Choccy were the answer, Snoops~~ I'd be pain free, footloose and fancy free!! I'm w/you on the side effects. Sometimes I don't know which is worse, those or the pain.

Right now I'm trying to find something that will ease my pain, yet not harm my organs, knock me out, make me see double or give me a sex change.

(ok, I threw the sex change in just to see if you were paying attention):D

trigeminal neuralgia
 

Hi, I'm doing trileptal for trigeminal neuralgia, currently up to 1800/day, will be going up to 2100 shortly. Maybe a little confusion / tiredness, and it hasn't entirely relieved the pain, but anything that helps is good... tried gabapentin at first and it didn't seem to do anything, or at least enough. I've been fighting with this stuff for 2 1/2 years now, believe it was set off by an exam following a root canal in a left side molar.

Just took a 900 evening dose about half an hour ago, and it seems like it started helping in about half an hour, but we'll see. O thoml a typical dose works for maybe 8-10 hours, and there are periods (up to a couple months) where the pain goes away altogether. The Mrs. has become pretty frustrated with this going on for so long, and we're about ready to find out what comes next after pills and try that. Most frustrating thing about this whole neuralgia business is that my pain doctor doesn't do anything dental (even though he's a DDS), my dentist keeps sending me to endodontists, and I wind up going to all sorts of different doctors... apparently even my dentist doesn't do extractions anymore, there's a whole separate doctor for that.

Anyway, I seem to be tolerating the 1500-1800 doses okay, I'm also doing tramadol (pain medication) sometimes, haven't quite figured out if that's helping or not.

Charles16

Well, I may be giving up on the trileptal and trying a different medication pretty soon. The doctor is trying moving me up to a higher dose, and taking four pills in the morning (1200 mg at once) just seems like it's too much for me. I've been too drowsy to drive and certainly confused and not a good judge of what's going on... the Mrs. has stepped in and is going to be coordinating my care because I'm just making bad decisions (and not just about my neuralgia, either).

One of my ongoing things has been wondering whether this really is neuralgia or a "root canal gone bad" problem, but we just got back from another dentist consultation this morning, who came to the same conclusion - this really is a neuralgia problem, even if it feels like a terrible toothache sometimes. This has been one of the things that I've been back and forth on way too much, just hoping that there is a dental solution that will provide a quick relief from the pain... but the general opinion of the experts seems to be that this really is neuralgia, and needs to be treated as such; pulling a tooth isn't going to fix it and could make it worth.

Sorry if this is kinda confused, the trileptal seems to be doing that to me...

I'm so sorry for your pain, Charlie. There is nothing worse than nerve pain.:eek:

I hope you can find the right med to help you and please feel better soon..:hug::hug:

Trileptal
 

Just an update...

The higher dose of trileptal seemed like it helped for a while, then didn't any more. This seems like it's what has happened with various medications I've tried, they help for a while, then they don't.

I have now had an MRI and an MRI-A, and it seems like my deal is sorta like this: I have a blood vessel which is sitting very close to the trigeminal nerve on the left side of my face, and there seems to be general agreement that, yeah, if that vessel was rubbing against the nerve, that would indeed hurt like heck. It would also be one of those things that would "come and go," again, typical of neuralgia.

I am scheduled for surgery at Barrows Neurological Institute here in Phoenix on February 23rd. Basically, they're going to move the blood vessel aside and then put some sort of a teflon pad between the vessel and the nerve. Word is that about 80% of people who have this surgery (meaning they have this "cause" for their TN) find pretty much instant and permanent relief. So I've got my hopes up. It's not quite "brain surgery," but it's still pretty cool :-)

By the way, for anyone using trileptal, in some poeple it can cause your "blood sodium" level to go pretty low... one of my doctors had this tested, and it turns out I'm a little below what's considered "low." So that's been another reason for backing off the trileptal and adding the lyrica. I was also on a blood pressure medicine that included a "water pill" (lisinoprene-HCTZ) and this water pill stuff apparently makes the low sodium level problem worse, so I'm now on just plain lisinoprene. Not sure yet whether this is helping the blood sodium problem and whether it is helping the blood pressure as much or not. As far as I can figure out, when you drink lots of water, and then get rid of lots of water, it washes the sodium out of your system... so in this case the doctor actually suggested NOT being quite so diligent about drinking lots of water..

In any case, hoping that the surgery does the trick for me... of late, the face pain has been sort of constant, worse at times... bearable, I guess, but bad enough that it interferes with most normal activities. Hangin' in as best I can...

Good wishes for your surgery at the end of the month. Please let us know how it goes..:hug: