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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Gabapentin use for neuropathy

Posted by @techi, Nov 3, 2017

I just want to know if anyone has used or is still using gabapentin for neuropathy. I had foot surgery in 2015 and l had nerve pain so my surgeon put me on gabapentin and it wasn’t once a day or twice a day. He said 3times a day.. So this Monday on the doctors Dr. Stock was talking about the gabapentin and how he was taking it after his surgery and he read about people who were trying to wean themselves off off it and it was hard to do it and if you are taking an opioid it intensify the opoid has anyone had that problem. Because l sometimes take tramadol and l always ask if it’s an opioid and everyone says no but when l went online they said it was so l am trying to not take them and when l went to the doctor this week l told them l am only taking the gabapentin 2times a day because l forget the third dose. I told her l am only use to taking meds twice a day so l want to know if anyone had a reaction or difficulty get off gabapentin?

REPLY

I’ve used Gabapenten for 15 years. I take 300 in the morn & afternoon & 400 at night. The night dose is the only one I’ve had to increase. I also take methadone 10 mg a day. I use lidocaine patches also. It doesn’t stop the pain but most of the time makes it bearable. I have non medical tricks I try. I wouldn’t be afraid to take gabapenten but you have to do it regularly as with all meds for pain so you have it working all the time. Your quality of life is important. I hope you find what works for you

Thank you so much.

John the reason l asked that question is because our state is number1 in opiot distribution and deaths.

@techi

John the reason l asked that question is because our state is number1 in opiot distribution and deaths.

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Hi Lisa, last year before I got my diagnosis for small fiber PN and I just had numb feet with no pain my doctor prescribed gabapentin and I took it for about a month with no results – didn’t help with the numbness at all. I met with the doctor again and she had a consult with another doctor who I again explained my symptoms – numbness, no pain. He said well gabapentin won’t work for that…it only addresses pain, not numbness. So I just stopped taking it. I have read discussions between other members in one of the closed groups I belong to that were taking gabapentin and it was difficult to get off of it. By tapering slowly they were able to get off of the gabapentin. Gabapentin was made to treat seizures and not PN. IMHO it just tricks the brain into not feeling the pain and it can require a higher and higher dosage the longer you are on it to keep the pain at bay.

You are right about the opiods. I really feel for those folks that suffer from chronic pain and really need something to get back their quality of life.

Hope you have a pain free day! John

John how did you wean yourself off the gabapentin because even though l am taking it l still am having numbness. So far l have gotten off of 4 medicine and my mind is so much clearer. I am remembering so much more since l was given all these meds in 2014. So l will be going to the Mayo clinic in 10 days and maybe they will take me off so more or tell me which ones l should tell my doctors which is affecting my health.

@techi

John how did you wean yourself off the gabapentin because even though l am taking it l still am having numbness. So far l have gotten off of 4 medicine and my mind is so much clearer. I am remembering so much more since l was given all these meds in 2014. So l will be going to the Mayo clinic in 10 days and maybe they will take me off so more or tell me which ones l should tell my doctors which is affecting my health.

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I didn’t have any pain in my feet and legs just the numbness so basically the gabapentin wasn’t doing anything for me. That and I don’t think I was on it long enough to have it mess with my mind. The gabapentin only helps with the pain. Do you have pain associated with your PN?

I do sometimes bit more numbness. I think l can tolerate the pain just as long as l can get off of it because it really isn’t helping. So it’s really defeating it’s purpose. So that’s why he gave me tramadol also.And the tramadol can be addictive. That’s the only pain med l can take so l don’t want to take that and l can’t take any NASID. I am trying to slowly decrease the meds but when l tell the doctors what meds l stopped taking they get a little frustrated with me because they can’t keep up when l tell them which one l am not taking.

I have been taking Gabapentin for 8 years for a pinched nerve in my spine. Now I have Mono Neuritis Multiplex and i take 800mg four x a day. Gabapentin is the only thing that helps the pain but it will do nothing for the numbness. Even Lyrica can’t do that. I also take 9mg time release dilaudid 2 x a day and 2 mg dilaudid 2 to 4 times a day depending on pain. I usually take 2 but I have had bad days that have required extra. I was told when I started the gabapentin and opioids that I would be on them forever, so no point in worring about addiction. I am only able to be at home because I have a caregiver without him I would be in long term care as at this point I can manage my personal care but can’t even open the fridge let alone any packaging that may be in there.

@techi

I do sometimes bit more numbness. I think l can tolerate the pain just as long as l can get off of it because it really isn’t helping. So it’s really defeating it’s purpose. So that’s why he gave me tramadol also.And the tramadol can be addictive. That’s the only pain med l can take so l don’t want to take that and l can’t take any NASID. I am trying to slowly decrease the meds but when l tell the doctors what meds l stopped taking they get a little frustrated with me because they can’t keep up when l tell them which one l am not taking.

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Hi Lisa, I would talk to your doctor. If the side effects of the gabapentin are making it difficult for you to function and you can think more clearly without it. Then if you can manage the pain without gabapentin, I would get off of it. I would talk to your doctor to make sure he knows how you feel about the gabapentin and that it’s not helping you. It’s really your decision, not his. He’s there to help you not the other way around.

Thank John will do.

@confused1955

I have been taking Gabapentin for 8 years for a pinched nerve in my spine. Now I have Mono Neuritis Multiplex and i take 800mg four x a day. Gabapentin is the only thing that helps the pain but it will do nothing for the numbness. Even Lyrica can’t do that. I also take 9mg time release dilaudid 2 x a day and 2 mg dilaudid 2 to 4 times a day depending on pain. I usually take 2 but I have had bad days that have required extra. I was told when I started the gabapentin and opioids that I would be on them forever, so no point in worring about addiction. I am only able to be at home because I have a caregiver without him I would be in long term care as at this point I can manage my personal care but can’t even open the fridge let alone any packaging that may be in there.

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Hello @confused1955, I’m sorry you are in so much pain. Do the doctors think all of the pain is caused by the pinched nerve in your spine? Did they offer any other treatments that might relieve the pinched nerve to reduce the pain? I’m sure it very difficult for you and it is good you have a caregiver to help you. The numbness alone is enough to deal with but add pain and it makes it that much more difficult. Hoping you have a pain free weekend.

John

For those exploring Gabapentin, I will just add a bit of my experience with this medication in the hope that it might be helpful. Once my SFN was diagnosed, I began using Gabapentin for pain relief from the “needles” that ravaged my hands, wrists and lower arms with pain. After the first 6 months as my condition progressed, more of the medication was prescribed for night time to go along with the lidocaine based topical compound LPKA which works to take the edge off the pain as I prepare for sleep. So after experimentation, this is what works for me at this stage — 300 mg in the a.m. and 900 mg one hour before bedtime. That allows me to drift off pretty easily and sleep well until the electrical pain zappers start at dawn. One day I got the dosages mixed up and took the 900 mg in the morning. And now I know why it works……although my pain was significantly reduced, I became a bit fuzzy and was struggling to remember things until it wore off. That’s o.k. for night time but can be disconcerting during the day. I don’t think I would want to be taking it 4 times a day. I will be meeting with my neurologist this month to discuss my future needs and options as the SFN has appeared to have added pain to the numbness in my feet. I also know that my partner has taken it for Restless Leg and it is also prescribed for dogs with a nerve condition called Syringomyelia (SM). So just because the medication was developed for seizures, doesn’t mean that it won’t work for other nerve related disorders. So it may be that each of us has different needs, different experiences, and different tolerances. There are no easy answers or road maps for this journey…..just lots of challenges and the will to cope with them as best we can.

@artscaping

For those exploring Gabapentin, I will just add a bit of my experience with this medication in the hope that it might be helpful. Once my SFN was diagnosed, I began using Gabapentin for pain relief from the “needles” that ravaged my hands, wrists and lower arms with pain. After the first 6 months as my condition progressed, more of the medication was prescribed for night time to go along with the lidocaine based topical compound LPKA which works to take the edge off the pain as I prepare for sleep. So after experimentation, this is what works for me at this stage — 300 mg in the a.m. and 900 mg one hour before bedtime. That allows me to drift off pretty easily and sleep well until the electrical pain zappers start at dawn. One day I got the dosages mixed up and took the 900 mg in the morning. And now I know why it works……although my pain was significantly reduced, I became a bit fuzzy and was struggling to remember things until it wore off. That’s o.k. for night time but can be disconcerting during the day. I don’t think I would want to be taking it 4 times a day. I will be meeting with my neurologist this month to discuss my future needs and options as the SFN has appeared to have added pain to the numbness in my feet. I also know that my partner has taken it for Restless Leg and it is also prescribed for dogs with a nerve condition called Syringomyelia (SM). So just because the medication was developed for seizures, doesn’t mean that it won’t work for other nerve related disorders. So it may be that each of us has different needs, different experiences, and different tolerances. There are no easy answers or road maps for this journey…..just lots of challenges and the will to cope with them as best we can.

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Chris (@artscaping), Thank you for sharing your experience with gapabentin. It helps a lot. Are you getting ready to head west or are you still here in Minnesota? Wished I could escape the winter sometimes although I think it makes me appreciate the other seasons a little more.

Have a great weekend! John

@artscaping

For those exploring Gabapentin, I will just add a bit of my experience with this medication in the hope that it might be helpful. Once my SFN was diagnosed, I began using Gabapentin for pain relief from the “needles” that ravaged my hands, wrists and lower arms with pain. After the first 6 months as my condition progressed, more of the medication was prescribed for night time to go along with the lidocaine based topical compound LPKA which works to take the edge off the pain as I prepare for sleep. So after experimentation, this is what works for me at this stage — 300 mg in the a.m. and 900 mg one hour before bedtime. That allows me to drift off pretty easily and sleep well until the electrical pain zappers start at dawn. One day I got the dosages mixed up and took the 900 mg in the morning. And now I know why it works……although my pain was significantly reduced, I became a bit fuzzy and was struggling to remember things until it wore off. That’s o.k. for night time but can be disconcerting during the day. I don’t think I would want to be taking it 4 times a day. I will be meeting with my neurologist this month to discuss my future needs and options as the SFN has appeared to have added pain to the numbness in my feet. I also know that my partner has taken it for Restless Leg and it is also prescribed for dogs with a nerve condition called Syringomyelia (SM). So just because the medication was developed for seizures, doesn’t mean that it won’t work for other nerve related disorders. So it may be that each of us has different needs, different experiences, and different tolerances. There are no easy answers or road maps for this journey…..just lots of challenges and the will to cope with them as best we can.

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Just arrived in Idyllwild——sunny on the mountain. I really like MN and I LOVE my mountain. Best of both worlds.

@artscaping

For those exploring Gabapentin, I will just add a bit of my experience with this medication in the hope that it might be helpful. Once my SFN was diagnosed, I began using Gabapentin for pain relief from the “needles” that ravaged my hands, wrists and lower arms with pain. After the first 6 months as my condition progressed, more of the medication was prescribed for night time to go along with the lidocaine based topical compound LPKA which works to take the edge off the pain as I prepare for sleep. So after experimentation, this is what works for me at this stage — 300 mg in the a.m. and 900 mg one hour before bedtime. That allows me to drift off pretty easily and sleep well until the electrical pain zappers start at dawn. One day I got the dosages mixed up and took the 900 mg in the morning. And now I know why it works……although my pain was significantly reduced, I became a bit fuzzy and was struggling to remember things until it wore off. That’s o.k. for night time but can be disconcerting during the day. I don’t think I would want to be taking it 4 times a day. I will be meeting with my neurologist this month to discuss my future needs and options as the SFN has appeared to have added pain to the numbness in my feet. I also know that my partner has taken it for Restless Leg and it is also prescribed for dogs with a nerve condition called Syringomyelia (SM). So just because the medication was developed for seizures, doesn’t mean that it won’t work for other nerve related disorders. So it may be that each of us has different needs, different experiences, and different tolerances. There are no easy answers or road maps for this journey…..just lots of challenges and the will to cope with them as best we can.

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I spent a couple of summers at a church camp in Idyllwild – beautiful area. If I remember right we use to take a drive through the mountains on the Rim of World Highway in the summer and it was a real treat for us kids.

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