1. < Neuropathy

trying a new combo drug therapy

Posted by notborntoburn @notborntoburn, Jun 19, 2020

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

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daj3333 | @daj3333 | Jul 20, 2023
In reply to @foxylloyd "I have constant burning pain and tingling all over my body and agonizing burning pain all..." + (show)
@foxylloyd

I have constant burning pain and tingling all over my body and agonizing burning pain all over my face and I’m opioid intolerant and nothing works at all. Not pain medication or Lyrica or Gabapentin or Antidepressants or anything.

Jump to this post

I’m so sorry to read you are in constant pain. I hope you find some relief.

REPLY
pfbacon | @pfbacon | Jul 21, 2023

I am taking one Horizant 600 at night. I order it from St. Louis with an rx from my pain doctor. It's helping. Plus, I take Gabapentin 600 morning and afternoon. I was taking 800 mg Gabapentin 3x a day before we added Horizant. I am gradually cutting the gabapentin as my body gets used to the Horizant. I still feel burning in my toes, feet, legs, almost constantly. I can take a Tramadol 50 as needed but it doesn't completely kill the pain either.

I was diagnosed in 2018 with Axonal Sensory Neuropathy (it's much worse than PN - when unmedicated, it feels like the bonfire, electrocution, wasps, and swords all at once and all worsening each moment). It also exaggerates pain from scratches, cuts, surgery, etc. We started with the lowest dose of Gabapentin and have increased it as the condition worsens. There isn't any cure for what I have, just mitigating the pain.

Sometimes I ask my brain to command my nervous system to relax. That works - it only lasts while I'm thinking about it but it does give me a short break.

Thank you all for your input - we're all in the same boat - looking for relief from constant pain. Peggy

REPLY
1 reply
kingfish1952 | @kingfish1952 | Jul 21, 2023
In reply to @jimhd "@notborntoburn Hi, Marianne. I have idiopathic small fiber peripheral polyneuropathy, which sounds like what you describe...." + (show)
@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

Jump to this post

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.

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Jul 21, 2023
In reply to @kingfish1952 "I am experiencing similar symptoms. The pain, numbness, tingling started in one foot, then went to..." + (show)
@kingfish1952

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.

Jump to this post

@kingfish1952 and others

I did a DRG (dorsal root ganglion) trial but it was ineffective.

I switched from morphine to buprenorphine for 2 reasons. My doctor wouldn't prescribe a therapeutic dose, and it was a hassle getting a fresh prescription every 28 days. And Medicare gave me a hard time because I take Clonazepam for anxiety - only 1mg twice a day. But buprenorphine requires a visit to a pain doctor every 3 months. I titrated off it recently to assess it's effectiveness, and can't feel any change in the level of my pain. So, the doctor is now trying Topamax. I took 50mg last night and had the most pain relief I've had in years for 4 hours. Unfortunately, I contracted c-diff somewhere, so I'm in bed a lot, which is when my feet and ankles hurt the most. After 2 days of antibiotics I'm starting to regain a little strength, so I'm going to try to get outside and start a sprinkler and move it every hour. That doesn't take a ton of energy.

I have have high hopes for Topamax. I haven't yet studied up on it but I will soon. I only hope I don't have to go to a pain doctor to get it because that's an hour away.

People have done well with a DRG implant. I don't adjust my SCS - the Abbott rep does that when it's not doing its job. He's also looking into the possibility of extending the leads downward because of my height. You'd think they'd have thought of that in the first place.

About Mirtazapine - it may have off label uses, but I take as an adjunct to my primary antidepressant, Wellbutrin.

There are several things that sustain me. A God of great grace and love, time spent working in the yard when I don't notice the pain, a bunch of good, caring doctors, among many other things.

Jim

REPLY
tonyde | @tonyde | Jul 22, 2023
In reply to @jimhd "@notborntoburn Hi, Marianne. I have idiopathic small fiber peripheral polyneuropathy, which sounds like what you describe...." + (show)
@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

Jump to this post

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.

REPLY
pacer3702 | @pacer3702 | Jul 23, 2023
In reply to @pfbacon "I am taking one Horizant 600 at night. I order it from St. Louis with an..." + (show)
@pfbacon

I am taking one Horizant 600 at night. I order it from St. Louis with an rx from my pain doctor. It's helping. Plus, I take Gabapentin 600 morning and afternoon. I was taking 800 mg Gabapentin 3x a day before we added Horizant. I am gradually cutting the gabapentin as my body gets used to the Horizant. I still feel burning in my toes, feet, legs, almost constantly. I can take a Tramadol 50 as needed but it doesn't completely kill the pain either.

I was diagnosed in 2018 with Axonal Sensory Neuropathy (it's much worse than PN - when unmedicated, it feels like the bonfire, electrocution, wasps, and swords all at once and all worsening each moment). It also exaggerates pain from scratches, cuts, surgery, etc. We started with the lowest dose of Gabapentin and have increased it as the condition worsens. There isn't any cure for what I have, just mitigating the pain.

Sometimes I ask my brain to command my nervous system to relax. That works - it only lasts while I'm thinking about it but it does give me a short break.

Thank you all for your input - we're all in the same boat - looking for relief from constant pain. Peggy

Jump to this post

I recently discovered that making a deliberate effort to mentally relax when driving resulted in a dramatic improvement in the discomfort I experience sporadically in my accelerator foot when driving long distances. The discomfort seems more due to the motor rather than the sensory component of my neuropathy. It's as though my muscles aren't responding properly to signals from my brain. I was amazed and relieved by the improvement from this simple mental trick.

REPLY
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