Is there a substitute for Neurontin?

[martha]

Sorry if this has been asked already. Husband takes Neurontin (up to 3600mg/day) and elavil for neuropathic pain. His pain is getting worse and the side effects of the neurontin are also getting worse, including bad headaches, what he describes as snow blindness, etc. Has anyone found anything to substitute for the neurontin that is effective with neuropathic pain?
thanks,

martha

[alan]

There are other similar drugs like trileptal, keppra, gabitril, lamictal. All have a long list of side effects, like every drug, but that doesn't necessarily mean they'll be troublesome to a specific individual.

[Joe B]

Martha,

There isn't much documentation on other drugs for neuropathic pain. Neurontin was hailed as a breakthrough when it first was prescribed. It does seem to lessen the pain somewhat. Elavil was prescribed for me in 1988 and I believe it helped lower the pain in a different way than neurontin, I still felt the but sort of didnt care as much.

Anecdotally, I tell people that, for me, the combination of a low amount of baclofen (20 mg 4xday) and diazepam (Valium 2mg 4xday) lowers my pain levels significantly. Taken with neurontin (1600mg a day) I seem to be able to function. I have taken arginine, an amino acid available from many drug stores and have felt some strengthening effect and slight improvement in pain tolerance as a result. Arginine is a precursor to agmatine which research studies have found to be effective on neuropathic pain in rats.

Because there are so few drug combinations available to treat neuropathic or central pain it is important to focus on the causes or initiators that make the pain levels rise. For me, dry, hot weather or a desert like climate such as in Arizona make my pain levels drop dramatically. I actually feel good. Weather fronts, cold, damp make me so miserable I crawl into bed and pull the covers over my head. I have found that certain clothing is better than others. In winter I wear longjohns they seem to provide a cushion between me and adverse stimulus from touch. Moving in my chair also seems to make the pain worse. Oddly, when I eat, I get very antsy because the pain rises and I start to move and have to tell myself to sit still.

Pain management clinics can teach skills such as visualization and relaxation that can help deal with the pain. I found that by a few minutes of relaxation technique I could lower pain one level. That's a lot and gives me some sense of control.

Those are things that have helped me, I think it was KLD though who reminded me that not all central pain sufferers respond to touch the way I do. Many do but a few seem not to connect pain level with touch or movement.

I hope others post there coping techniques.

Joe B
C6-7
1988

[martha]

Joe & Alan,
Thanks for your replies. Husband doesn't seem to be sensitive to touch, but we have been trying to pay attention to other things that could be stimuli. He's been having a lot of pain this week and whether it's coincidence or not, he's been cathing huge volumes this week. We can't get a handle on the cath deal since his fluid intake is basically the same every day. He also noticed reduced pain yesterday after a huge bowel movement. Sorry to be so graphic, but discussing these things has kind of become a part of life.

He's never been put on baclofen, but I'm wondering with the inscrease in spasticity if this might be something to talk to the doctor about. We have an appt next week for his one year (late) check up. Think I'll mention it.

Overall, he has a high tolerance for pain, so I know with his recent complaints that this must be bad. I appreciate your suggestions and insights.

martha

[krajaxa]

I hope you still get to read this even it's almost a month from your post.

My hubby has been having the same problem for last six months. We tried Neurontin (4800mg/day), tried Zonogran (should be same as Neurontin) to relieve the pain plus side effects. He tried some other pain Rx pain killers in combination with above meds. After his 1yr check-up the doc suggested another MRI since he said there might be a cyst or a scar tissue forming on the spinal cord and creating more pressure. He also lost some of his sensation he regained in first six months.
Big BMs seem to lower the pain somewhat, but they always come back...

Good luck!!

[alan]

Has he tried methadone? It helps some people with nerve pain. It's constipating, so he'd have to take more laxatives. Ask his doc about it.