View Full Version : trileptal trouble
For the last few months, I've been on trileptal (an anti-seizure med like neurontin), in the latest attempt to find some pain relief. The dosage at which it is supposed to be effective, if it helps, is 900-1200 mg. twice a day. I couldn't get past 300 mg. at a time, because every time I went higher my bladder voiding decreased. Doctor wanted me to keep using the low dose, hoping my body would get used to it and we could get to the recommended dose.
About two weeks ago, still at only 300 mg. twice a day, my legs started swelling up like tree trunks, and my bladder completely stopped voiding spontaneously. I thought I had killed off my kidneys. Looking at the side effects list of trileptal, leg edema was listed as a rare side effect (also a rare side effect of neurontin.) Started elevating my legs and wearing ted hose, and tapering off the trileptal. The leg swelling went away after a few days, and all I'm left with is the normal postural edema that disappears by morning. Took the last 150 mg. pill a couple of days ago.. Today, bladder started voiding on its own again. Hopefully, that will return to "normal" as the trileptal totally leaves my system.
So, I still have no life due to pains, and no idea what to do about that, but at least my kidneys still work.
[This message was edited by alan on Dec 28, 2002 at 09:16 PM.]
duramater
12-28-2002, 01:21 AM
Alan,
I'm glad you suffered no permanent damage...all you can do is try things and sometimes it does not work out. I'm sorry to hear that this latest attempt did not work out for you. I hope you find something to take the edge off soon.
Mary
...and she lived happily ever after...
I've pretty much run out of medications to try. The pains keep intensifying, though - they don't care. My MRIs apparently show no syrinx - just the empty area where the cord was damaged. I'm stuck home by pain, can barely even type any more (my right shoulder blade is getting as bad as my left), and have't been able to exercise for years. Each year, I've been able to eat less and less, as my abdominal pain keeps getting worse with time.
I'm ready to be reincarnated, and start over. http://sci.rutgers.edu/forum/images/smilies/frown.gif
David Berg
12-28-2002, 10:54 PM
alan,
I hate to say it, but you're a virtual "poster child" of pain. You have had incredibly bad luck with the side effects woth most drugs that stand some hope of helping to relieve your suffering. I sincerely hope that you find something (and soon!!) that will afford some level of relief.
Phillis
12-29-2002, 01:00 PM
Sorry to hear about your troubles with Trileptal. If it makes you feel any better, I never went above 300 mg either and it didn't help a bit. I'm responding to this post because I wondered if you have tried Dextromethorphan? It's the "DM" in Robitussin DM but has been found to help with pain when combined with Neurontin. I'm not sure what your experience has been with Neurontin. I also don't know if it works alone. I've been taking it for the past month-30mg 3 times a day along with 300 mg of Neurontin 3 times a day. It has helped a lot with my squeezing and burning pain. Just something else for you to try or at least discuss with your doctor. My SCI doctor told me it is relatively new in the treatment of nerve pain. Hope this helps you or at the least gives you some more hope that new drugs seem to be found that help. Sorry you suffer so much. I know how bad it can be! Take care.
Keep hope alive.
Neurontin gave me hallucinations - i had conversations with people who weren't there (they were company during a sleepless night, I admit.) Seems all the antiseizure meds have similar side effect profiles. I actually have some DM cough syrup here - forget what the doc at the time wanted it coupled with.
David, don't put my picture on a poster - we'll get no funds for research that way.
I'm getting near the end of my rope, not that there's anything I can do besides go nuts. There's so little I'm able to do, because of all the pain. It stinks. Depresses the hell out of me. And I have no idea what the future holds, but I'm sure it ain't good. This mess upsets my mother, which upsets me. I miss being able to get away from home, but I'm barely able to even get out of bed these days. http://sci.rutgers.edu/forum/images/smilies/frown.gif I feel like a whiner, especially when I see the active lives led by my fellow posters here.
No wonder Saddam uses torture - it's quite effective. Before this central pain nonsense, I actually had a high pain tolerance. Severe chronic pain is a whole different story.
[This message was edited by alan on Dec 30, 2002 at 12:31 PM.]
Dann21
01-03-2003, 09:18 AM
Why don't you look into a spinal. cord stimulator I hear they have great results.
Just a suggustion
Thanks for the thought, but I had one 15 years ago. Stimulator position was revised three times. Never had a minute of relief from it. Did have one setting that paralyzed my face and neck - that was a scary night, as we waited for that effect to disappear after turning the stim off.