Seeking Experienced

[GermanyC4]

Neurontin Users ... !
Understanding each person responds a little differently, on the average how does it take before a person shows any benefit from Neurontin? My husband titrated up to 1200 mg over the past two weeks and has been at this dosage for several days ... he seems to have no side effects, but also has not seen any siginificant benefit to taking Neurontin - no decrease in pain or tolerance of pain. As always, thanks - Beth

[calico]

Beth, I titrated up to 3,600 mgs but I don't remember over what period. Probably several months. The Neurontin never helped the pain for me but it does for some people. It put me in a foggy escape which was probably a good place for me to be at the time. I had problems with word recall and thinking clearly. I slept really deeply so if your husband has problems with sleeping it might help that.
I was fully ambulatory, just felt like I'd lost quite a few IQ points.

A new doctor I started seeing felt I would have a better quality of life if I got off of the Neurontin, which was affecting my thinking and not improving my pain, and started a low, slow-release dose of Dexedrine combined with a low dose of compazine, plus continue with Wellbutrin and Tegretol. This combination has helped me think through the pain. I know that's one heck of a consolation prize, but being able to think more clearly through the pain has improved my functionality a good deal. My quality of life and emotional self are significantly better using this approach.

Some people's pain is helped by Neurontin. There's nothing to do but gradually escalate the dose and see. If it had significantly decreased my pain I would have happily traded the IQ points (not that I could really spare them).

Calico

[Joe B]

You will want to consider your husbands size/weight in figuring out a good dose for him. As has been said, people respond differently to neurontin but I would titrate up to 2600 mg before deciding no benefit. Also, some people have reported that they notice the benefit more when they stop taking neurontin.

Myself, I get some relief at 1200 mg but am taking 1600 (400 mg 4xdaily). This works well with my other med schedules which is every 4 hrs. I weigh about 150 lbs.

I also found that I personally get some relief from central pain by taking a very low dose of diazepam (valium) (1 mg 4xdaily) and baclofen (20 mg 4xdaily). These seem to help me. I took amitrytiline for years before switching to neurontin, slept like a rock but after several years my short term memory was badly affected.

Good luck in finding what helps, CP is a tough adversary.

Joe B
C6-7
1988

[Joe B]

I noticed from your profile that it has been only 3 mos since the bike injury. Please say hello to your husband and wish him well. 3 mos is sort of an anniversary, many newly SCI get released and get to go home at 3 mos. Have you and Sue Pendleton exchanged notes on the area of Germany you are in? I know wshe spent time there in the military.

Again
Best wishes http://sci.rutgers.edu/forum/images/smilies/smile.gif

Joe B
C6-7
1988

[GermanyC4]

Joe B - Thanks for the words of advice ... on the average how long does it take to realize benefits from Neurontin before discussing/deciding with our doctor to titrate up? He's been on for 3 weeks now with no noticeable benefit. We are educating our doctor along with ourselves. As an aside, we should be meeting sometime in the next week with his neurosurgeons, who should be more familiar with the meds, etc. I'll let you know how it goes. I have been in communication with Sue on one of the other forums, and just a little with Mike C. also. Thanks again.

Calico - Thanks also for letting us know what works/hasn't worked for you. Finding the right path through this maze is so difficult.

Beth

[TD]

your husband will need to overcome his central pain. I suffer from severe spasms and spacticity so have a baclofen pump to supplement my neurontin dosage (1200 mg - 300 mg/4x per day). I cannot tolerate more neurontin because it makes me drowsy so hubby should ramp it up as high as he can tolerate it until he: a) gets the relief he needs or: b) gets too drowsy to function.

If he takes oral baclofen watch for changes in attitude. I found that when I began taking high doses I became very aggressive, even combative.

"And so it begins."

[Joe B]

I believe your husband should notice some change within days of reaching an effective dose. You should not have to wait weeks to titrate up. If you increase too slowly it gets very difficult to notice changes. Take into account your husbands normal sensitivity to medicines. Some people just need higher doses than others. Keep posting.

Joe B
C6-7
1988