trying a new combo drug therapy

Posted by notborntoburn @notborntoburn, Jun 19 9:59pm

HI my fellow feet on fire friends! I have been given Imipramine 50mg 2x day and Carbamazepine 200mg 2x a day increase to 400mg.
I am not doing well with the Carbamaazepine it seems to zap my energy and I feel no relief from my constant burning. I have been on it a month and have not increased the dose. The Imipramine is a real culprit for weight gain as is a lot of antidepressants. I have been through all the suggested drugs there is just nothing that helps. My feet symptoms seem to be moving up my legs, the summer heat makes it worse but i said that about the cold winter too! If anyone has taken this new combination I would appreciate your thoughts.
Thank You
Marianne

@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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@notborntoburn I have this too, and have not found anything that works much to stop the burning except for a product called Wiseman Healing Balm that is sold on Amazon. It is pure frankincense and Myrr, and it does calm the burning. Another thing that helps is hot water foot baths. I have a massaging water, foot spa, and I place my feet in very HOT water. Now this sounds rather counter productive, but the heat of water, and the heat of the burning feet are not the same. Something about the hot water soothes the feet. However, once I take my feet out, it can start up again. Sometimes the burning leaves. What a curse of an illness. Hope I helped. Lori Renee

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