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trying a new combo drug therapy

Neuropathy | Last Active: Jul 23, 2023 | Replies (16)

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@jimhd

@notborntoburn

Hi, Marianne. I have idiopathic small fiber peripheral polyneuropathy, which sounds like what you describe. I worked for 7 or 8 hours today in my yard and gardens, and I'm paying for it with burning pain in my feet and ankles, creeping up my legs. If I don't do much the pain is 4-6, but on days like today, it's 7-9. Not much fun, is it.

When I started trying to find a medication for neuropathy, I tried ones my PCP prescribed, then I moved on to the list of medications the neurologist prescribed, and then the pain specialist. He's been going through a long list of medications, and last September he came to the last one, Imipramine, and for a few months it made a big difference in my pain. I'm still taking it, 75mg at bedtime. Until last week I was taking 100mg, but because of the sedating effect of several of my meds, he wanted me to see if 75 would be enough. It's hard to say.

Several years ago I tried carbamazipine, and I don't remember why I didn't keep taking it. You know the drill - try a new medication long enough to know either that it did nothing, or that it did nothing and had unacceptable side effects, or that it helped the pain but had unacceptable side effects. Lyrica was starting to reduce my pain, but I had such a bad reaction, I was in the hospital for a few days.

Early on, I found that morphine sulfate contin reduced the pain enough to keep me from being suicidal. I was taking 30mg 3 times a day. At one point I thought I'd taper off the morphine, but when I got off it, I knew that it was working, and I started taking it again, but only went up to 15mg 3 times a day.

I had a Burst DR spinal cord stimulator implant in June of 2015. During the week of trial, I had 80% pain reduction! It was wonderful. I'd forgotten what it was like not to be in pain. The first two years, the SCS really did help me. In the 3rd year, it was gradually decreasing, and I had to have the Abbott rep adjust it every 3 months. That was the routine for two years. But at the end of last year the adjustments did nothing, and I turned it off in March, to see if it was doing anything. I didn't feel any change, with it off or on.

So, I'm pretty much out of options. I have an appointment with a neurospecialist on the 26th. We're going to be seeing if she has any other options to try before getting a DRG implant. I'm not certain yet that I want to get it. @lorirenee1 is in the process of getting one, and I want to know more about real life experiences before I make a decision.

Kind of a long way around to answer your question. The short answer is that I have taken both Imipramine and Carbamazipine, but not at the same time. I don't know how much longer I can deal with the pain. It wouldn't be as bad if I were to sit in my recliner all day, but I don't have that option. Maybe the day will come, hopefully in my lifetime, when a cure is discovered for pn.

Jim

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Replies to "@notborntoburn Hi, Marianne. I have idiopathic small fiber peripheral polyneuropathy, which sounds like what you describe...."

I am experiencing similar symptoms. The pain, numbness, tingling started in one foot, then went to the other. Recently it has affected my ankles and calves. I'm on Lyrin=ca and Oxcarbazepine prescribed by by neurologist who is head of neurology at Columbia Hospital in NYC. It does tend to take the edge off and I don't wan to take more than the 300mg of each I've been on for a few years but it may become necessary. Generally, I feel less discomfort when I'm walking or working out. It hits like a ton of bricks when I lie down. I have a spinal cord stimulator but a got this due to a Morton's neuroma in one foot. It worked great during the trial bu not much afterwards, Plus you have to be careful not to turn it up to high or can overstimulate the nerves and make things worse. If you have the GRG implant, I'd be very interested in your opinion.

Gabapentin helps me, unfortunately it also makes me very tired. My PCP recommended vitamin B injections, I thought it was crazy until I did some research and discovered that vitamin B helps repair nerves. It took a few weeks before I had any relief, then I noticed I had fewer level 9 pain episodes. Vitamin B is not and end all, be all cure, however, it's given me some relief without side effects. Talk to your doctor, try taking injections every 2 weeks for 6 weeks. Worst case scenario is it does nothing. It's not expensive drug.