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

Monique

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

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

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

( 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)

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...