PDA

View Full Version : Running out of options

mike
06-20-2004, 02:35 PM
I am a c5 walking quad and have had increasing central pain over the last two years. Specifically I have severe burning and alloydnia from my feet up to my chest with the condition worsening almost daily. I have had an MRI recently and it shows no changes from the time of my injury.

I am presently on 1800mg of Neurontin and 450mg of Trileptal daily without a lot of relief. The Neurontin causes weight gain and edema. When I wear compression stockings for the edema the touch of the stockings increases the pain.

I am interested if any other participants in this community have this type of pain and have had any relief from any type of drug.

It causes me a great deal of concern when I think of how much worse the problem is then it was a year ago and what it will be like a year from now.

mike
alan
06-20-2004, 06:07 PM
Wish I could tell you something positive. http://sci.rutgers.edu/forum/images/smilies/frown.gif

Alan

"Was it over when the Germans bombed Pearl Harbor?"
metronycguy
06-21-2004, 04:12 AM
did the neurontin and trileptal every give any relief?
mike
06-21-2004, 05:50 AM
In the beginning I got some relief from the Neurontin and Trileptal. I suspect although it is hard to believe that if I stop taking those drugs now the pain would be even worse.

mike
metronycguy
06-22-2004, 05:09 AM
my pain management doc would raise the neurontin levels and try other combinations of tricyclics for my pain. i went up to 3200 4 x 800 a day of neurontin plus a low dose of a tricyclic, i think your body adjust to the neurontin until you reach a level to stabilize on. i think elavil is supposed to work well with the burning, but everybody is different.
mike
06-22-2004, 06:53 AM
I have been afraid to increase the Neurontin doses because of the side effects. My edema increases, and also I have a problem with weight gain. I might give Elavil another try. It caused urinary retention problems the last time I took it but so does Trileptal.

mike
metronycguy
06-22-2004, 06:00 PM
yes i had retention with elavil, also with neurontin, in fact when i stopped neurontin i was able to stop cathing, for 6 months before i still had to cath in morning and before bed.
doc had told me to stop fluids at 8pm and suck on ice if real thirsty to keep bladder from filling during night.
i am using 25 mg desiprmaine now, it causes retention, but less sleepiness in am