Can Gabapentin make neuropathy pain worse?

Posted by cwallen9 @cwallen9, Tue, Apr 16 2:25pm

I started getting peripheral neuropathy pain about nine months ago in my feet and hands right after I received a cervical steroid injection. I started taking gabapentin about 7 months ago. I have gradually increased my dose from 100 mg a day to 1500 mg. I can't say that it has decreased my pain at all. In fact, my pain has gotten steadily worse. I was just wondering if it is possible that gabapentin can sometimes make neuropathy pain worse. My EMG and biopsy results are negative for short fiber neuropathy so far.

Liked by Dee, Leonard

@cwallen9 — I don't know the answer to your question but I think it's always good to ask questions so I'm hoping someone will be able to respond and share more information. I did find an interesting article that sheds a little light on the topic of drugs being used for treating conditions that are not related to what they were originally approved for by the FDA.

American Council on Science and Health — Neurontin: Over-Hyped And Underwhelming
https://www.acsh.org/news/2017/12/26/neurontin-over-hyped-and-underwhelming-12242

Liked by Leonard

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Obviously every case is different, but in mine I take 2700 mg a day. Alot I know, but before it my episodes would last an hour or so, it was brutal. Now, I still get my episodes but they last maybe 10 minutes to 15 minutes max. I don't like being on it, but my neurologist at the Mayo assures me it is ok. I always looking for other options, but no luck so far. Maybe an increase would help, as for me I would say taking it has not increased my pain, but has been a help in reducing episode length. Good luck to you, I hope you find some answers.

Liked by Leonard

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Hi @salsa, welcome to Connect. Thank you for posting and sharing your experience with gabapentin. It sounds like the drug is helping you manage your pain. What type of neuropathy do you have?

Liked by Leonard

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I have idiopathic peripheral nueropthy. Although I do have uneducated guesses as to the cause such as a bad back, three surgeries in two years. I also have Spinal Bulbar Muscle Atrophy which is causing some of my major muscles to die. In the end I have it, I think I speak for all of us when I say I wish I didn't.

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@salsa

I have idiopathic peripheral nueropthy. Although I do have uneducated guesses as to the cause such as a bad back, three surgeries in two years. I also have Spinal Bulbar Muscle Atrophy which is causing some of my major muscles to die. In the end I have it, I think I speak for all of us when I say I wish I didn't.

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I also have idiopathic small fiber peripheral neuropathy which I've had over 20+ years. The only plus if you can call it that is I only have numbness with my PN and no pain. I agree with you, I wish none of us had this awful stuff.

Liked by Leonard

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A few members who may have some thoughts on whether gabapentin can make neuropathy worse whom I'd like to invite into this conversation are @jakedduck1 @lauraj155 @jackkdh @jmjlove @ahendershot.

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@lisalucier

A few members who may have some thoughts on whether gabapentin can make neuropathy worse whom I'd like to invite into this conversation are @jakedduck1 @lauraj155 @jackkdh @jmjlove @ahendershot.

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@cwallen9, did you have the skin biopsy for sfn? It sounds as if your EMG was normal for large fiber? I haven’t heard of neurontin making neuropathy worse but maybe it is not the correct medication for you? Other meds used are Pregablin(Lyrica) which is an epileptic like neurontin and also an antidepressant called Cymbalta. I take a combo of Amitriptyline(an older antidepressant used for nerve pain) and Neurontin. They work somewhat on me for pain however I am on a low dose of neurontin due to its sedating effects. Everyone reacts so differently to medications and can be trial and error determining what works for you. You may also need to add Cymbalta or Amitriptyline with the neurontin for a synergistic effect. Good luck to you! -Laura

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@lauraj155

@cwallen9, did you have the skin biopsy for sfn? It sounds as if your EMG was normal for large fiber? I haven’t heard of neurontin making neuropathy worse but maybe it is not the correct medication for you? Other meds used are Pregablin(Lyrica) which is an epileptic like neurontin and also an antidepressant called Cymbalta. I take a combo of Amitriptyline(an older antidepressant used for nerve pain) and Neurontin. They work somewhat on me for pain however I am on a low dose of neurontin due to its sedating effects. Everyone reacts so differently to medications and can be trial and error determining what works for you. You may also need to add Cymbalta or Amitriptyline with the neurontin for a synergistic effect. Good luck to you! -Laura

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Thanks for responding. I did have a skin biopsy that was negative for SFN, but positive for autonomic neuropathy (sweat glands). I just had another one taken at Johns Hopkins and am waiting on results. I did take Cymbalta with Neurontin, which may have helped, but I developed a bad case of tinnitus and I wanted to see if the Cymbalta was causing it. The tinnitus did get better, so I stayed off the Cymbalta. I am now taking Elavil with the Neurontin, but I haven't noticed any difference in symptoms. I am taking 1200 to 1500 mg per day of Neurontin – how much do you take? I have been told I need to take at least 1800mg, but I get very foggy with what I am taking now. Since I haven't really noticed a decrease of my symptoms (pain keeps spreading and getting worse, I thought maybe I should stop the Neurontin since it doesn't seem to help and maybe, just maybe, it has been making it worse. Maybe that is just wishful thinking, but I thought it might be worth a try.

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@cwallen9, I take only 600 mg. of neurontin with 50 mg. of elavil and have been asked to increase it but unfortunately I am so sensitive to meds and get very groggy with fuzzy thinking during the day. But, I hope if you decide to decrease the neurontin to tell your doctor and of course do it very gradually as you probably already know. I so hope you can get some additional answers and it’s great that you could get additional testing at John’s Hopkins. -Laura

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@lisalucier

A few members who may have some thoughts on whether gabapentin can make neuropathy worse whom I'd like to invite into this conversation are @jakedduck1 @lauraj155 @jackkdh @jmjlove @ahendershot.

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Lisa,

For myself Gabapentin made my PN worse and made my arms jump and twitch basically controllable, as soon as I quite taking it that was gone.

I can see where some people would benefit from Gabapentin or Pregablin (Lyrica types), but it is not for me.

I do feel that Pharma and the medical community really needs to look at less use of single molecule (man made) internal drug therapy of treating PN, as people are getting tired of treating only symptoms of PN. It maybe that possibly incorporating some of the eastern primary as an more interrogative approach maybe a benefit. Less Opiates (new FDA rules) is good, but at least give us a quality replacement for PN. PN is within the reachable sub-dermal regions even in the feet (dead skin layers) therefore a topical pain relief treatment approach should be very beneficial for people with PN, at least that is my view after living with PN for ~15 years.

Off my soap box, the answer for myself is Gabapentin and Pregablin (Lyrica) simply made things far worse, as it seem to affect the whole CNS and not the PN issue.

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@mictim

Lisa,

For myself Gabapentin made my PN worse and made my arms jump and twitch basically controllable, as soon as I quite taking it that was gone.

I can see where some people would benefit from Gabapentin or Pregablin (Lyrica types), but it is not for me.

I do feel that Pharma and the medical community really needs to look at less use of single molecule (man made) internal drug therapy of treating PN, as people are getting tired of treating only symptoms of PN. It maybe that possibly incorporating some of the eastern primary as an more interrogative approach maybe a benefit. Less Opiates (new FDA rules) is good, but at least give us a quality replacement for PN. PN is within the reachable sub-dermal regions even in the feet (dead skin layers) therefore a topical pain relief treatment approach should be very beneficial for people with PN, at least that is my view after living with PN for ~15 years.

Off my soap box, the answer for myself is Gabapentin and Pregablin (Lyrica) simply made things far worse, as it seem to affect the whole CNS and not the PN issue.

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If you don't mind me asking, what to you take or do for your PN now?

Liked by Leonard

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@lisalucier

A few members who may have some thoughts on whether gabapentin can make neuropathy worse whom I'd like to invite into this conversation are @jakedduck1 @lauraj155 @jackkdh @jmjlove @ahendershot.

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@lisalucier
Neurontin/Gabapentin never helped my Seizures, pain or Neuropathic pain. I took various doses from 900-34 or 3600mg. The doctor said I could increase it as long as I was non-symptomatic for side effects. Since I got zero benefits from any dose I choose to discontinue it. Sorry I couldn’t be more helpful.
Best of luck,
Jake

Liked by Lisa Lucier

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@lisalucier

A few members who may have some thoughts on whether gabapentin can make neuropathy worse whom I'd like to invite into this conversation are @jakedduck1 @lauraj155 @jackkdh @jmjlove @ahendershot.

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@salsa, @cwallen9, @lauraj155, @johnbishop, @lisalucier This is a great discussion on Neurontin/gabapentin. It makes me realize that all of us have unique medication challenges and different reactions which must make it difficult for our medical providers to help us choose our treatments and medications wisely. The one thing they need is good feedback. Not only are we our own advocates, but we also have a responsibility to take notes and then inform our medical team accurately so they can modify dosages and medications based upon how our bodies responded. I remember my first few days on gabapentin. I was pretty fuzzy. My neurologist changed the time for taking the gabapentin to an evening dosage to ensure a restful sleep because I was consistently awakened by the zaps or electric shocks throughout my body almost daily at 5:30 a.m.

My body, within a few weeks, settled down and responded to that dosage and time with the eradication of the zaps and unfortunately, an introduction of the burning across the abdomen and chest. And so I requested the addition of one more 300 mg of gabapentin at bedtime. So far so good…..I am sleeping right through my hurdle of 5:30 a.m. I would never have gotten to this point based on my first experience with gabapentin.

I am now thinking that my providers have gotten it right. Introduce a medication "gently" as in starting with the minimum dosage.. Give my body time to adjust to the new medication. That may be 2 or 3 weeks. Or at least that has been my experience with everything including my MM program. After giving my feedback, the dosage and time may be adjusted as necessary by my provider. I think what I am advocating is to find providers who introduce medications gently, evaluating reactions which just might include symptom relief over a certain time and then adjust, eliminate or increase with attention to side effect management. It might also be the case that a new medication has been introduced which might be more beneficial and so a replacement plan is delineated.

In the case of medical marijuana for pain control, I have been my own provider and have had to evaluate, modify, enhance, increase, decrease, as my condition changed and the available products increased amazingly. Good luck on your journey, just don't try to take a short cut or give up on an option too soon. And please be free of suffering today. Chris

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@artscaping

@salsa, @cwallen9, @lauraj155, @johnbishop, @lisalucier This is a great discussion on Neurontin/gabapentin. It makes me realize that all of us have unique medication challenges and different reactions which must make it difficult for our medical providers to help us choose our treatments and medications wisely. The one thing they need is good feedback. Not only are we our own advocates, but we also have a responsibility to take notes and then inform our medical team accurately so they can modify dosages and medications based upon how our bodies responded. I remember my first few days on gabapentin. I was pretty fuzzy. My neurologist changed the time for taking the gabapentin to an evening dosage to ensure a restful sleep because I was consistently awakened by the zaps or electric shocks throughout my body almost daily at 5:30 a.m.

My body, within a few weeks, settled down and responded to that dosage and time with the eradication of the zaps and unfortunately, an introduction of the burning across the abdomen and chest. And so I requested the addition of one more 300 mg of gabapentin at bedtime. So far so good…..I am sleeping right through my hurdle of 5:30 a.m. I would never have gotten to this point based on my first experience with gabapentin.

I am now thinking that my providers have gotten it right. Introduce a medication "gently" as in starting with the minimum dosage.. Give my body time to adjust to the new medication. That may be 2 or 3 weeks. Or at least that has been my experience with everything including my MM program. After giving my feedback, the dosage and time may be adjusted as necessary by my provider. I think what I am advocating is to find providers who introduce medications gently, evaluating reactions which just might include symptom relief over a certain time and then adjust, eliminate or increase with attention to side effect management. It might also be the case that a new medication has been introduced which might be more beneficial and so a replacement plan is delineated.

In the case of medical marijuana for pain control, I have been my own provider and have had to evaluate, modify, enhance, increase, decrease, as my condition changed and the available products increased amazingly. Good luck on your journey, just don't try to take a short cut or give up on an option too soon. And please be free of suffering today. Chris

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After reading the experiences, I now understand why the doctor probably thinks I am hopeless because I reject the drugs for my problems. If I can't stay awake enough to get out of bed, I quit the pills and don't try to stay on them. living alone means I must take care of myself and I can't do that if I am not awake. I can't stay on drugs that drug me for weeks waiting for me to get used to them. I don't intend to check into a nursing home so I can lay in an expensive place half asleep waiting for problems to improve. No, no, that is not the answer. I was diagnosed with trigeminal neuropathy, and prescribed 12 months of gabapentin after one painful attack. The pain went away and I have only had a couple of attacks in the past several years which I control with hand pressure on my face. The doctor never checked to see how I was getting along, and I have not mentioned it to him since. I have no problems with the face now, but have no idea why I am getting along well. I do have neuropathy in my left foot and take nothing for it nor do I mention it to my primary doctor.
The neurologist I saw said to take a wait and see attitude about the future. I eat carefully and exercise some, but not enough. My numbness never lasts very long, and is mostly at night or early in the morning. I wear socks to bed which seems to help. I have an uncharted future, I know, and take it one day at a time. I only took two gabapentin pills with that first encounter. I intend to be a tough old lady in the end rather than try to live half awake and unfed, unclean, and on drugs. Let me know when the docs learn how to successfully treat some of these neuropathies. I had back surgery and I can walk and bend over with a cage in my back. That's it for now. Dorisena

Liked by Leonard, hotfooted

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@cwallen9

If you don't mind me asking, what to you take or do for your PN now?

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Hi cwallen9:

If you can find it , I use a PN anti-pain lotion called NeuroFreezee. I finley went to from michaels amazing botanicals website and if I remember her name correctly is Katelan. Sometimes it fully takes away the PN pain in my feet when I use it only 2X per day, however that is not typical.

I have to put it on a lot and many times today or when I walk alot, as I planted some shrubs for my lovely wife this morning, my feet r really hurting tonight. I think I used it about 5 times so far and one or two more before the day is over. But I am very thankful for fineding it as I have been using it for about 3 years now.

But I live a fairly productive life style, but I do get a few looks wearing my old Birkenstock sandals.

Anyway, without that pain lotion I would not like to continue anymore as the pain is so great, I would just have to increase my Tramadhal and oxycodone opioid pain meds a lot. Whowever the problem with that is FDA is making doctors cut people way back. That is very stupid as the druggies will get what they want on the street anyway and we who have pain like we do get less ….."HOW DUMB". Education on the use of Opiate/opioid drugs is a good very good idea as more information is good, but what are we to do for the severe pain like some of us have. When I read about others, I think maybe my pain is not as great as some have, which really hurts my heart a lot.

Anyway, you asked like several do what I do for my PN and if you can get them to send you a sample I would greatly recommend it for a much far lasting pain lotion. I heard that they even make it with THC in an extra streangth version including lidocane and benzocane in the lotion. I would like to try that! I use the cooling lotion for my knees, muscle pain and even my arthritis pain as well. Works well and good!

Right now I have gone from 6 tablets of Tramadhal a day down to only 4 tablets, which makes me have a better day and I can function and live a more productive life style.

Lets see; 6 tablets a day with a even stronger HD 2 opioids and about $600.00 a month for a prescrition pain lotion that works fairly well and a life laying down and a lot of drugged sleep time OR "the Pain Lotion that I use for about $40/month and 4 Tramadahl a day and I can function and have a near normal life at 72. Very Simple choice!! I use the Nerufreese lotion any day and I have tried most every combination of stuff and prescritions including Gabs!

Because of the Nreuofreeze, I can now work 8-12 hours most days and my wife and I still travel a lot and I still have (now better) snuggle time as I am not dead yet.

Like others, I can not find it on Amazon but it was there. Just go to that website as that is what I do. I am not really complaining about my PN, it just hurts a lot but I am very very thankful for that lotioon. I have a bad headache coming on so I can not speell very well right now. Everyone have a great or at least a better day! MicTim

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