doesn’t anybody have any problems on Trileptal ?
I’m not having any problems on trileptil, so far it is the best med I have tried but I still do get some pain. I’m starting to give up the idea that I will ever be totally pain free.
Both lyrica and tegretol left me wiped out and I just couldn’t function cognitively.
Hope you can find something that works for you.
How many mg you ? I don’t think any medicine is going to take it completely away… I just came off of the Gab it caused my ankles to swell and blurred vision which I still have…I’m hoping it’s not the Trileptal causing it I’m sick of switching meds…
I have only been on it a month. I feel like a zombie, but it's better than the pain. I AM noticing it works better for me if I don't take it with food. I took it this morning right after I ate and now I'm having a few shocks. I don't think I can increase it because the side effects are too debilitating. I'm on 750 in the morning and 750 in the evening. I keep going on it because many meds side effects will lessen over time. If I can hang on until then....
Trying one med at a time is best --- that way you know what is what from side effects.
Most of us just get cognitive impairment --- that seems to be #1 -- but everhybody is different ---- I think the highest I was on was 900 per day. I could not work.
Now - MVD and going well --- going off the last 150 that I've held on to daily since Oct.!
Donna, I have been using Trileptal for over 16 months and it has been the med with the least side effects. It controls most of the facial pain, but you do have some break through pain along with fatigue. This means you will need to monitor your activity. Your neurologist might prescribe another med for the break through pain if needed. Some of the side effects I have experienced are: fatigue(biggest one), dizziness or balance issues, headaches if I do a lot of reading or computer work, concentration issues, mouth sores and minor blurry vision.
I agree that you will never be totally free of pain, but the majority of the pain is controlled effectively by this drug. Best of luck.
Jim
Donna said:
How many mg you ? I don't think any medicine is going to take it completely away.. I just came off of the Gab it caused my ankles to swell and blurred vision which I still have...I'm hoping it's not the Trileptal causing it I'm sick of switching meds..
Donna, I’m on 600mg per day so I guess not a very big dose. The last few days the pain has increased so it will be interesting to see what the neuro says when inseenhim again in 5 weeks.
The blurred vision would freak me out so I hope you are now doing ok.
Trish
I've been on Trileptal for 4 yrs - worked like a charm but I've pretty much maxed out and gotten used to it. My doctor added Zonegran - not there's a med that will eff you up. I can function better after drinking a 5th of whiskey haha.
Yes Todd it has worked for my pain also… I just can’t sleep at night… I do miss my glass of wine at night 
Have your glass of wine I say :)
Hi Donna. I was on a daily 2700 mg of Gabapentin/Neurontin for a while but I was a complete zombie with way too many side effects (dizziness, blurred vision, fatigue, short-term memory, some lack of coordination, etc.). Worked quite well to stop the stabbing pains...but no quality of life in that I wouldn't be able to work or play softball (a passion). And my body never got used to it. The switch to a daily 600 mg of Trileptal brought lesser side effects, although pretty much the same ones, but was far less effective with the symptoms than Gabapentin. My neurologist decided to lower the daily dose of Trileptal to 300 mg and add a daily dose of 1.0 mg of Clonazepam. The med-combo-plate cleared up some of the dizziness and blurry vision but added more fatigue, short-term memory and lack of coordination. Regarding symptoms on the Trileptal and Clonazepam, I had "nothing" for 6 complete days until the 4th of July when I had about 150 of my own explosions (stabbing pains) go off in my head. I will be calling my neurologist early this week. Bottom line, it hasn't mattered what meds I have been on over the past 4 months, I still don't see how I could work at a job with my brain experiencing the side effects. I guess we're all trying to find that balance of acceptable pain with minimal drug side effects. Hope that helped in some way. I know as I here of other peoples experiences it helps me.
I keep hearing about all these various medications screwing (effing) people up. That is way I started a discussion asking if people are actually able to function well enough to be able to work at a job. As a consultant, I don't have a contract right now but don't see how I could function if I did have an opportunity. I hope some of you contribute to that discussion thread . thanks.
Brad, I have had TN since January 2010 and I have went through the same med issues as you have. I was a claim manager with State Farm for 23 years and my job required a high degree of analytical work. I had to go on partial disability for 18 months and eventual long term disability due to the issues with lack of concentration, blurry vision, fatigue and the facial pain. I wish you well trying to get the right meds, consider MVD surgery or other options that your specialist recommends. If you are young and need to work, this may be a good option for you. Our TN family will provide you with support and valuable feedback on your options. Keep me informed and I will keep you in my prayers.
Jim
Brad said:
I keep hearing about all these various medications screwing (effing) people up. That is way I started a discussion asking if people are actually able to function well enough to be able to work at a job. As a consultant, I don't have a contract right now but don't see how I could function if I did have an opportunity. I hope some of you contribute to that discussion thread . thanks.
Hi James. Well, I am going to be 58 in a few months and had planned on retiring, or at least semi-retiring, at 60. With the questionable economy, that may extend to 62...or more? I guess none of us know how bad it is going to get post-election and in 2013. So that is part of my predicament. Do I reduce my lifestyle, limp along on my wife's salary, live in a fog and avoid anything resembling brain surgery (MVD), or something else? I'm still in the learning stages to know what the something else really means.
James M. Radford said:
Brad, I have had TN since January 2010 and I have went through the same med issues as you have. I was a claim manager with State Farm for 23 years and my job required a high degree of analytical work. I had to go on partial disability for 18 months and eventual long term disability due to the issues with lack of concentration, blurry vision, fatigue and the facial pain. I wish you well trying to get the right meds, consider MVD surgery or other options that your specialist recommends. If you are young and need to work, this may be a good option for you. Our TN family will provide you with support and valuable feedback on your options. Keep me informed and I will keep you in my prayers.
Jim
Brad said:I keep hearing about all these various medications screwing (effing) people up. That is way I started a discussion asking if people are actually able to function well enough to be able to work at a job. As a consultant, I don't have a contract right now but don't see how I could function if I did have an opportunity. I hope some of you contribute to that discussion thread . thanks.
I am having issues with how I taste and mild ataxia.
Brad, when I was in your shoes back in January 2010 I continued to work at probably 50%-60% capacity until April 2011. My company accommodated my work schedules from 20- 30 hours per week using partial disability(pad sick leave benefit. Finally, they asked me to go on long term disability around June 2011 and I am still on LTD . I would check with your HR rep to see if you have short term & long term disability. This will help ease some of your anxiety. I will keep you in prayer. Keep in touch. Things will work out. Peace of the Lord be with you during this difficult time.
Jim