Neuropathy: Anyone have any experience with gabapentin?

Posted by sjhedcon @sjhedcon, Mar 21, 2020

I have loss of feeling in my feet and tingling sensation. My doctor prescribed gabapentin. I read the side effects and decided not to take this med.
Anyone have any experience with gabapentin?

Yes, almost destroyed my memory! Got off it!

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Different things work for different people. Please don't criticize gabapentin in any public forum. Criticism makes politicians control harder which makes it even harder for me to get. If it wasn't for gabapentin, I would have looked for something sharp to cut my wrists with. Humans can only take so much pain for so long, then, we break. I cannot live without it. I hope someone invents something that works well for you. Thanks! Peggy

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@helennicola

you’re very welcome Chris I’m happy it has helped and you are doing better. I think sometimes people give up on the gabapentin when maybe their body just needs time to adjust, of course it doesn’t work for everyone but the stated side effects are just possibilities not probabilities. Helen

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I have been on 600 mg 3 times daily and Cymbalta 600 mg 2 times daily and am getting very very little improvement in my foot and leg pain from idiopathic small fiber neuropathy. I tolerate the gab with only minor memory loss. I am still looking for something to help with the pain and cold feet. I have been on different meds for about 3-4 yrs. I can sympathize with all of you going thru this terrible disease and wish I could share something positive.

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My pain management doctor tried both of those medications and neither of them worked for me either. Fortunately, my pain management doctor continuously provided me with pain pills so I could still reduce the pain. I found out that not all pain management doctors will prescribe pain pills. I recently had to change pain management doctors and the first 4 doctors I tried to see said they would not take me as a patient because I was prescribe pain pills and I have been pain pills for 4 years. I recommend calling the doctor and telling them the medication is not working, you are in a lot of pain and as them what you should do about it. They are supposed to relieve you of pain.

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@fredjan2016

My pain management doctor tried both of those medications and neither of them worked for me either. Fortunately, my pain management doctor continuously provided me with pain pills so I could still reduce the pain. I found out that not all pain management doctors will prescribe pain pills. I recently had to change pain management doctors and the first 4 doctors I tried to see said they would not take me as a patient because I was prescribe pain pills and I have been pain pills for 4 years. I recommend calling the doctor and telling them the medication is not working, you are in a lot of pain and as them what you should do about it. They are supposed to relieve you of pain.

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@fredjan2016

When I set up my first appointment with my pain specialist I was told that he wouldn't prescribe. My PCP already had me on ms contin. The pain specialist did suggest meds to my PCP for a while, but eventually he did start prescribing for me, and if what he prescribed reduced my pain, he passed the prescription over to my PCP after I was taking the target dosage. The psychiatrist follows the same procedure.

I have a concern that when my PCP retires his replacement won't let me continue my meds.

Jim

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I agree with @pfbacon that "different things work for different people." All the posts in the Connect Neuropathy group discussions make that clear. I do not have neuropathy, but I personally took gabapentin for postherpetic neuralgia after shingles. It worked very well for controlling my pain and itching, and I don't recall any problems at all tapering off of it 7 or so weeks later.

I also agree with @fredjan2016 that it would be wise to call your prescribing doctor, @cmartinjr, and tell them the medication is not working, explain you are in a lot of pain and ask them what you should do about it. A second opinion also may be beneficial.

What pain management medication and/or technique did work for you, @fredjan2016?

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@lisalucier

I agree with @pfbacon that "different things work for different people." All the posts in the Connect Neuropathy group discussions make that clear. I do not have neuropathy, but I personally took gabapentin for postherpetic neuralgia after shingles. It worked very well for controlling my pain and itching, and I don't recall any problems at all tapering off of it 7 or so weeks later.

I also agree with @fredjan2016 that it would be wise to call your prescribing doctor, @cmartinjr, and tell them the medication is not working, explain you are in a lot of pain and ask them what you should do about it. A second opinion also may be beneficial.

What pain management medication and/or technique did work for you, @fredjan2016?

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I have not found anything that really works. I have been to 2 neurologists and a pain clinic. I have used lazar therapy, electro therapy and some other therapies with out seeing improvement. Currently, I am taking B12, ALA, Magnesium, Omega 3s, Epa,Dha,Gla,Oleic acid, and am having a few more days (pain level 5 or less). Thanks to A nurse practice friend that made this recommendation.

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@pfbacon

I take gabapentin twice a day because it doesn't make me sleepy or dizzy or anything – it works – the pain subsides. I take Lyrica at night – it does make me sleepy but it also works. They don't give me any other side effects that I know of, I've been taking them since July 2018. I do not want to take prescription pain killers – they make me so sleepy I can't do anything. Peggy

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I have intense pain all day and nigh from neuropathy toes to thigh and now my fingers. I have tried the normal ones, and Lyrica gives me the most relief with the least side effects. Gabapentin did nothing, Cymbalta took my short term memory and Lyrica works well with just a little dizziness, I tried Nucynta, which worked very well, but I felt completely numb. My doctors recommend medical marijuana to help me tolerate pain better, but I have not made that move. Tramadol does not bother me at all and does help the pain—it just seems like taking a stronger ibuprofen. Are the neurologists helping you? I have given up on them and have not needing the Pain doctor, because my podiatrist prescribes exactly the same treatments. I do find that stretching throughout the day dulls foot and ankle pain.

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@pfbacon

Different things work for different people. Please don't criticize gabapentin in any public forum. Criticism makes politicians control harder which makes it even harder for me to get. If it wasn't for gabapentin, I would have looked for something sharp to cut my wrists with. Humans can only take so much pain for so long, then, we break. I cannot live without it. I hope someone invents something that works well for you. Thanks! Peggy

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@pfbacon You are so right we shouldn't speak negatively about anything What med works for one person well wont for another its out body chemistry . Mine is not good with it at times but then at other times it does help me .So Im still off and on with it . My Dr. just gave me something for my allergies and the drug interaction with gabapentin is moderate so will take them a couple hours apart I think

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@jimhd

@fredjan2016

When I set up my first appointment with my pain specialist I was told that he wouldn't prescribe. My PCP already had me on ms contin. The pain specialist did suggest meds to my PCP for a while, but eventually he did start prescribing for me, and if what he prescribed reduced my pain, he passed the prescription over to my PCP after I was taking the target dosage. The psychiatrist follows the same procedure.

I have a concern that when my PCP retires his replacement won't let me continue my meds.

Jim

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Retirement of physicians who have been working with you successfully for many years is a huge and legitimate concern. My doctor is over 70 and still going strong, but he won't go on forever. My pain specialist is AWESOME and young, very dedicated and a knowledgeable perfectionist. I hope he doesn't move out of this area.

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@dckuke

I have intense pain all day and nigh from neuropathy toes to thigh and now my fingers. I have tried the normal ones, and Lyrica gives me the most relief with the least side effects. Gabapentin did nothing, Cymbalta took my short term memory and Lyrica works well with just a little dizziness, I tried Nucynta, which worked very well, but I felt completely numb. My doctors recommend medical marijuana to help me tolerate pain better, but I have not made that move. Tramadol does not bother me at all and does help the pain—it just seems like taking a stronger ibuprofen. Are the neurologists helping you? I have given up on them and have not needing the Pain doctor, because my podiatrist prescribes exactly the same treatments. I do find that stretching throughout the day dulls foot and ankle pain.

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@dckuke My neuropathy began in the balls and heels of my feet. A year or so ago my toes started hurting, then the pain moved to the top of my feet, and most recently moved up to my ankles. It's a burning pain. It's strange that even though my feet hurt, they're also numb. And the numbness doesn't include being numb to painful stimuli. I have a blanket lifter so the sheet and blankets don't touch my feet. Shoes have been an issue for a long time, but until a few months ago I could wear socks as long as they're loose. Now I have pain from socks, which is ok in the house, but I can't walk without socks and shoes.

I haven't yet felt pain anywhere else. Did it start for you in just one area and then spread? Did it start out with numbness and tingling? The one thing I've learned is that neuropathy progresses differently with each person.

Jim

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Jim
I have had the same basic course of illness that you describe.
A couple of tricks have helped me. Maybe they will help you too.
I've found that Ugg boots are the easiest shoes to wear, because of the shearling lining. Other brands like them may work.
I bought a few Ugg products (they don't only make boots). I've also bought Ugg insoles, which I use in my biking and other shoes. I even glued them on a pair of flip-flops.
I live in the SF Bay area, so winters aren't severe. I wear flip-flops and shorts. Everyone thinks I'm crazy.
Sometimes, when forced to wear shoes (almost never anymore), I carry frozen gel to put on my feet for a couple of minutes to cool them off.
Walking is better for me than standing still.
Distraction (meditation, conversing, etc.) works for a short while, until I become undistracted.
I've used at least 20 different topicals, including various cannabis products. None seem to work for me. See my post above about my latest cream containing ketamine and amitriptyline.
Marijuana and alcohol also work, probably by distraction (see above).
Good luck, and keep that Amazon password handy.
Jeff

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