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Question about nerve pain meds

hotcoffee29hhotcoffee29 Posts: 327
edited 06/11/2012 - 8:47 AM in Pain Management
Its been a while since I checked in....since my last post, I have continued dodgng bullets at work and trying not to get hurt from the students but it's been unavoidable a couple of times, being pulled and twisted, and bruises up and down my legs from a chair being kicked at me, however things are improving and I hope it stays that way!!

I have continued to have low back pain and horrible pain down my left leg again just like before surgery. All the way into my foot, the numbness tingling and pain, it's constant and gets worse as the day progresses. My surgeon says there is no reason for my pain, but I'll always have some degree of pain due to scolliosis and 2 back srgeries and the DDD, so I understand that, he did another steroid injection about a month ago and it really helped initially, it felt like he nailed the pain in my back but within a week all my pain had returned.

I finally decided to follow up with a neurologist, he did a full work up and sent me for a brain MRI, which was normal, and then he performed another EMG and nerve conduction test, he told me that my left leg is abnormal and permanantly damaged from nerve damage and it's chronic, this is it for the rest of my life!! He said he can't tell me when the injury occured but it has and nothing can fix it. My choices are physical therapy, steroid injections (which don't last) and medications. So I just started Gabapentin a few days ago, so far I don't notice any change so I was curious about other peoples experience with this medication is and I am concerned if it causes weight gain?? I have worked hard to loose my weight so I don't want this medication to contribute to putting the weight back on??

My other concern is, do I have to stay on this medication forever? My pain and disabling effects in my left side is permanant, how do you cope with that?

Atleast now I know why I have this pain, and why it never goes away, any advice from others dealing with this side of back problems is appreciated.




  • Neurontin (gabapentin) causes weight gain for some people. Doesn't seem to be as bad as Lyrica. Watch your eating!

    But these meds do really work, especially if you're having symptoms such as tingling or pins and needles or nerve pain.

    As for staying on it forever- you'll have to discuss this with your doctor. The meds do not repair or fix anything, they simply alter the messages to the brain so that you feel better. But, in life, many things change- new treatments, new surgeries, PT might help build some new connections- so don't give up hope!
  • Your right, new treatments are always on the horizon.
    For the last year I have searched and been through tests to find the cause of this pain and then I did another surgery which was in hope of fixing the pain, I am just now learning that there is no fix and the damage is done, it's just frustrating and I don't have the stamina like I used to to keep up with my family and it bothers me.

    My next appointment is in 3 weeks with the neurologist to see how the medication is working and go from there. I will continue to watch my diet and stay positive. Thanks so much for kind advice.

  • I tried Gabapentin and I think every other med out there for nerve pain and none of them worked or I had horrible side efects :(

    I did some research on my own and found an "old" med that was first created for bed wetters and moved forward to helping people with migraines and /or depression and now nerve pain - amitriptyline.

    It has been my God sent :) However it does make me very sleepy and I have to force myself to get up in the mornings. BUT I have NO nerve pains.

    Keep it in mind in case the Gabapentin does not work out for you.

    feel free to PM me if you want any more info or my experiences on my nerve med... as there is not a lot of info out there on this med for nerve pain.

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I am on Lyrica (yep, gained gobs of weight - slowly coming off) for my neuropathy. The side effects only last a few days, and I had a night and day difference in pain relief! A lot of these nerve pain medications have to have time to build up in your body to be efficient. Maybe that is the case with what you're taking now? I hope you feel better soon. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I have been on Neurontin (Gabapentin) for over 10 years and until such time as it looses its therapeutic ability for me or some new and awesome treatment or drug comes out to replace it, I will take it for many years to come. As far as weight gain, I have not had that problem from the Neurontin however it does really give me cravings for certain sweets. I have to watch my diet in that regard. Also it is a medication that according to the printed guidelines should be taken with lots of water. Having the increased water intake also helps control the appetite and always seems to help me keep the weight off.

    I have been offered a second SCS to control the pain that the Neurontin helps me with, but until such time as it becomes ineffective I'll pass on a second SCS.

    There are other meds that work great for neuropathy as well. I have used

    Tegretol (Carbamazepine) Worked awesome for several years
    Trileptal (Oxycarbazepine) Caused horrible ear infections
    Lamictal (Lamotrigine) Worked great for a couple years
    Elavil (Amitriptyline) Didn't do a thing for me

    There are still others, but I have no experience with them. As far as the Neurontin (Gabapentin), I went through a brief adjustment where I had a bit of drowsiness but that passed in about 2 weeks and dosage increases from there went really fast and easy. I get zero side effects from it and it blows my mind how it can effect others to the point they can't function.

    I hope your neurologist dials things in for you so that you can be as comfortable as possible and get back to doing things with the family and feeling like a member of the human race once again.

    Best wishes

  • I just put a call into my NS to see if there is any way I can take the Gapaptenin differently that may help with the dizzy side effects I have been getting so that I can feel normal at work.

    I am encouraged to see that "C" has not had an issue of weight gain on this medication, but there is so many, many who say it does cause weight gain and that concerns me. What is it about the medication that causes the weight gain, the increased appetite? or the metabolic change?

    I have noticed a decrease in my pain, so I do believe this medication can be very useful is treating my symptoms and hopefully get me active again.

    How does the SCS work? My follow up visit to actually see the NS is a few weeks away. I really would like to find a successful treatment so that I could be pain free and not have to count on pain meds.

    I still wonder why my orthopedic surgeon didn't tell me I had permanent nerve damage, instead of trying the injections and telling me that there was really no reason for my leg pain.

    As long as I can go trick or treating with my children this weekend I will be happy!

    "C" - I am really encouraged that you stay active, keep things in perspective and manage with the pain and the meds.

    I just got the call back from my NS while typing this letter, his recommendation is for me to cut back to one pill 100mg at bedtime and see if it reduces the dizzy feeling I have, so I will try that.

    Kind regards,
  • I can only respond regarding Lyrica, which is a similar med, but it was definitely an appetite issue, not some sort of gaining weight out of air issue. I could seriously sit down and eat a whole meal at Claim Jumper and still want dessert, it was crazy!

    So if you were to log your calories, you should be able to counteract it.
  • have a similar story, where I was told I was fine until the EMG where the docs all changed how they treated me dramatically. Sad eyes.....

    I cannot tolerate any of the nerve meds - I am one who becomes completely incapacitated. I was immediately given 2 options and 2 options only - SCS (spinal cord stimulation) and implanted pain pump. I went with the SCS to start and have been very lucky in how much it has helped. Should it stop working, I will move on the implanted pain pump.

    Did your doc no mention the SCS or implanted pain pump? Maybe they don't if you respond and can take the nerve meds?

    Good luck to you = that 24/7 burning/searing pain with no break is not fun.

  • Hi Sandra,

    First, I'm sorry to hear that you're faced with permanent nerve damage, however that came about. Do keep courage, though, because new advances are always being made and the medications we are using today may be obsolete in a few years and something better may take their place--we can always hope!

    I'm on Lyrica and was told I should see almost immediate results, which I did. I noticed that you were questioning the length of time until you got relief with the Neurontin. I don't know, it may be a different enough medication to not be related to Lyrica in that regard, but it seems like you should see results fairly soon, if you're taking enough, but you may know that already by now.

    Also, the dizziness and loopy feeling (as I put it) do go away if you can just work through them. It may take a few days but once you've become accustomed to the drug it no longer affects you like that (I'm speaking for Lyrica and assuming gabapentin would do the same). I hope you can get past the side effects because these medications do have the potential to give you significant relief, if your pain is the kind that can be relieved by nerve medications. I can't speak to the SCS but there are numerous members here who will fill you in on that technology. My best to you--keep posting--allow us to share a little of your burden by being good listeners, if nothing else. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • I have taken both Lyrica and Gabapentin. I had horrible side effects on the lyrica and weight gain. I am now taking the Gabapentin and have had not trouble with weight gain. It MADE A HUGE DIFFERENCE! However, made me very loopy and it did not go away. Felt like I was forgetting things all the time. BUT it was worth it for the pain relief. I recently stopped taking it and am sick as a dog so don't stop cold turkey!

  • Thanks Happy!

    I better watch out, lol

    I started the medication a week ago, I gained a couple of pounds, whicy I was concerned was due to the Gabaptenin, so fast though?? I have been loosing weight for so long that to gain a few pounds won't hurt me, but when would it stop?? But maybe it was the bucket of popcorn I ate at the movies!

    I stopped it for a few days, weight has stayed the same and tonight I will go back on the med. My pain is back with a vengance, throbbing all the way through the sole of my foot, it starts in my low back, right through the buttock, down my leg and through my foot. It is relentless, so I know I need to give this medication a second chance.

    Thanks for the smile :-)

  • My NS basically told me that my pain is for the rest of my life, it's chronic from the injury. When did the injury occur, no one can tell but I have my suspicions. My left sided pain started the day of my first surgery, for over a year I kept going back to my surgeon, he did every test available and then went back into my back in May to clean out around my nerves and my pain was gone itially but it has all returned and he said its just a flare, no reason for it.

    I finally went to a NS for a second opinion and he confirmed the nerve damage,so who knows exactly how it happened but it is awful and constant, my whole half side of my body just hurts from my back down.

    I basically got 3 options, PT, injections or nerve pain meds..............I have done PT and injections so the last thing for me for now is to try the meds.

    How exactly does the SCS work? I am not sure if it can ever be an option for me. My NS is against any more surgery due to scar tissue and he could not do the EMG in my lower back due to my surgeries.

    I wish you continued success with relief from your pain.

  • thank you Angela and Linda for kind comments and concern.

    I am interested to hear how others have faired on these nerve pain medications. I believe that Lyrica and Gabapentin are very similar as all these meds for nerve pain are in the anticonvulsants family.

    I tried Lyrica very briefly after my first surgery but stopped due to dizz, spacey feelings. I am getting the same from Gabapentin but I have only been on it for a week but I was starting to feel some relief that is so welcomed. I stopped for 2 days and will resume it again tonight. My pain is back, so the medication must be doing something, I have to give it a fair chance before I write it off, I just fear the weight gain!!

    Angela, why did you stop cold turkey? I hope you start to feel better soon.

    Thanks everyone!
  • HotCoffee,

    I posted earlier about my weight gain. The first 4 or 5 days I was on it (max 150mg 2x a day) I was buzzy, dizzy or way tired! A friend of mine of similar weight told me he went through it, but give it a little time. Aside from the weight, all those side affects stopped, and now I sometimes forget if I took it or not. Lyrica for me, knocked the pain down like 80-85%! I hope you have similar or better results!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Sandra,

    I hate to see you have permanent nerve damage. That is so hard to hear from the Dr. We seem to be in similar boats. I took Gabaptenin and it gave me awful hives. I was obviously having an allergic reaction. I was switched to Lyrica, it seems to be working for me, but the weight gain is awful. I am hungry all the time. And it's so disheartening since I too, have worked very hard to lose a great deal of weight. I am hoping this medication is temporary and I can get back on the weight loss track.

    Good luck with the new meds. I hope they work well for you and can help control the pain.

  • we are all so similar in our in search for something that works to help control our symptoms from pain.

    Brenda, I am glad to hear that Lyrica has worked for your pain control but obviously you pay the price by the weight you gained, its a tough place to be in. I hope your weight comes off eventually and you continue with the relief that has been working for you.

    Traci, I wish you luck in your weight loss journey. If you lost the weight once, hopefully you will be able to do it again. I took the Gabapentin last night and it definately made a difference. I did not have the dizzy feeling today and I have a reduction in pain compared to yesterday. I am amazed at the difference with one pill, but If I continue to pack on pounds, I may have to stop, despite the pain relief because I'd not be happy about that either!!

    It is difficult to learn that this nerve damage is permanenet and it won't get better....it really makes me question the effectivness of 2 surgeries but I have to accept it and just manage it the best I can.

    Thanks to all for your shared experiences, ot really helps.

  • Thanks! For me on and off Lyrica was literally "Night and Day" as they say. :) Believe it or not, I wasn't even mad about the weight gain! I'd rather have the extra pounds (lots of em!!) than that horrible pain. I am or course happy it is slowly coming off.

    The funny thing though is my appetite is low, yet the weight came anyways?!? I actually have to make myself eat. Not sure what's up with that. I did actually tonight with the hubby out to eat...eat a "normal" portion! I felt stuffed of course, but pleased. Appetites are weird sometimes I guess.

    So glad that you are now getting relief! One thing I've seen on here Sandra? Some folks find that if they are lowered a little bit on the dose, the weight gain stops or even better, the weight starts to come off? I guess once you're stabilized, you can ask your doctor if that would work? Fingers crossed you don't gain bunches. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Maybe my brain isn't wired quite right, but when I heard that I was left with permanent nerve damage and would have to take meds for it until further notice ... well ... I was actually relieved, because all the other "functional" issues that I could have been facing had been resolved with the surgery. I guess to me it was a fair trade off.

    Until I came to the realization that I would never really be totally pain free, I kept searching for answers and doing the "why me" stuff. I was fortunate to find a way to move on and now even though I hurt, I am happy with life once again.

    I hope this makes sense and by no means is it a jab at you to learn to live with it or anything of that nature. I just don't know any other way to share what I have done in order to get on with living my life despite the junk my body has been through.

    Keep putting one foot in front of the other and pretty soon you will find that you have walked miles towards getting back into life.

  • I have been on numerous amounts of medication for pain relief. I have been prescribed the strongest dosage of Gabapentin 3200mg and that still doesn't work. I have nerve damage from L1-S1 Degenerated Disc and L4-S1 ( full herniation )Spinal steno-sis, spinal arthritis, degenerative disk, scoliosis.
    The spacers in my back are gone/going, spinal nerve damage.
    No surgeries as Dr's. don't think it will help and may make things worse. So I am now on a waiting list to be seen by a Neurologist and on a waiting list for, Pain Management... Waiting list is about two months long. While in Hospital I was given 30 unit IV drip Morphine and was switched over to 20 unit IV drip Dilaudid. Upon discharge I received Norcos... Is there anything that will help ease the pain? Most days pain level is around 12-15... I have tried Lyrica. Have tried Vicodin and did not like side effects... Recovering Addict so I'm kinda limited to my intake. Except when Doctor prescribes the Medication... Is there anything that helps???
    Trying to Smile Always
  • Hi Dino,

    I hope some others read your comment and can offer some help.

    I have alot of pain every day but have yet to find relief but I have not been on many narcotics and I am only on Tramadol right now and as of today no more gebapentin. I saw a rheumatologist who diagnosed me with Fibromyalgia and has put me on Savella and gave me 2 cortosone shots, one in my hip and one in my lower back to help get my pain under control but I am in more pain than I could imagine right now and I am praying within a few days I feel some relief.

    Good luck, I don't have any answers but I can empathise and I truly wish you the best and this is one place where you can get alot of support.

  • Dino, for more help you might want to start your own topic under "chronic pain." We all use many methods to control pain and our tools might help.

    When you say your pain is 12-15, that's out of what? usually we use a 0-10 point scale. It's tempting to believe that if you have severe pain you must be a level 10, but actually 8-10 are usually used severe pain, with 10 being pain that is completely disabling.

    Other people use a visual scale or faces scale, whatever works for you.

    As for meds, I take Cymbalta and just recently stopped taking Topamax for nerve pain. I also have both long acting and rescue opiates. I would say that the nerve pain meds are most effective, if you can find one that works for you.

    NSAIDS can be helpful as well, although many of us have found that prolonged treatment causes permanent damage to the stomach- I know I am one of many who can no longer take NSAIDS at all.

    And finally, physical therapy can be very effective! Not all helps come in the form of a pill.
  • I take Cymbalta also and it helps with my nerve pain in my leg as well as heat and ice. Also muscle relaxants like Flexeril helps me and Voltaran. I hope you get into see the Drs soon and ask them to put you on a cancellation list in case something comes up sooner. Aqua therapy with your Physiotherapist may help also. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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