Questions about Neurontin

    • Anonymous
      October 30, 2010 at 2:26 am

      Hi all! ๐Ÿ™‚

      I wanted to ask a question about Neurontin to those of you who are taking it (or have taken it in the past) for those sharp/shooting/burning nerve pains. My daughter is having (non-GBS-related) nerve pains in her arms & sometimes her legs too. They started after she suffered a concussion a little over a year ago. We are on our 2nd neurologist & still running tests to try & find out WHAT exactly this is.

      Annnnnyway, the 1st neuro had no idea why it was happening, but prescribed Neurontin (Gabapentin – generic) and it has been helping to ease the “electric-shock” pain. In the past few months though, her regular dose wasn’t cutting it any more so the new neuro upped her milligrams.

      [B]Question #1[/B]
      [I]Does/Did Neurontin cause drowsiness or fatigue for you?[/I]

      I had always heard it caused people to feel “fuzzy” and/or sleepy. With her it seems to be the opposite! She says she can concentrate better in school now that she’s taking it. (Of course, that could be because it is dulling the shocking pain that may have distracted her from paying attention before.) Her grades are definitely better so I don’t believe she just [I]thinks[/I] she’s doing better – I can see the improvement on the report card! ๐Ÿ˜€

      [B]Question #2[/B]
      [I]Is it possible to take Neurontin for a few years, then get off & still feel fine?[/I]

      This may sound kinda weird, but I’ve heard that somehow your brain “learns” a different way of operating after being on Neurontin for so long & that a patient can actually get off of it eventually & still have relief. It’s sorta like rewiring the brain signals. Is this possible?

      [B]Question #3[/B]
      [I]Have you ever noticed a difference in effectiveness from bottle to bottle? Or between brand name Neurontin & generic Gabapentin?[/I]

      She has noticed differences in effectiveness between bottles – but we are getting the generic, not brand. [B]Four[/B] neurologists have told me that they will only prescribe brand for their seizure patients because even though the generic has the same active ingredient, the availability of the active ingredient can fluctuate by as much as 20%.

      She is not taking this for seizures, obviously, so the doc said it would probably be ok for her to take generic. But if she noticed a HUGE difference between bottles filled a month apart, maybe we should fork out for the brand? I don’t know, I’m torn. [B]Opinions???[/B]

      Thanks so much for any & all advice! ๐Ÿ™‚

      [I]{Edited to clear up some wording}[/I]

    • Anonymous
      October 30, 2010 at 8:54 am

      I only took gabapentin for a little over 1 year. In the beginning, it helped. By the end, when I was weaning off, I didn’t notice any difference between taking it and not taking it. I no longer need pain meds for nerve pain.

      Yes, it can cause drowsiness. That is why most doctors incresase the dosage slowly to help prevent that side effect as much as possible. I didn’t notice it, but I was in the hospital during the upswing in the dosages and on morphine to boot. They took me off the morphine as they increased the dosage of gabapenten. I don’t think I noticed any difference between bottles, but right out of the hospital, I was also taking vicodin.

      I can’t answer to the difference between brand and generic, I was always on the generic. If it helps your daughters pain, I would continue to give it to her. If you think you want to try the brand, I don’t see what it could hurt, if you can afford to try it.

      I hope this has helped.

      God bless,
      Tonya Correll

    • Anonymous
      October 30, 2010 at 9:15 am


      Question #1.
      I am taking lyrica for nerve pain with GBS. Lyrica and Neurontin are both prescribed for nerve pain.
      One of the side effects is drowsiness. Those with GBS/CIDP usually do get drowsy and will sleep more but a lot of the sleeping also comes from increased fatigue associated with GBS/CIDP.
      In your daughters case, she may be right in saying she can concentrate better when taking it. Those nerve pains in her arms and legs are getting signals from the brain. When she is taking the Gabapentin that lessens the pain, I am [U]guessing[/U] that it helps the brain from overworking trying to regulate those signals to the arms and legs,therefor she can think better.

      Don’t know about your question # 2.

      Question # 3.
      The active ingredient should be the same in generic as it in the brand name.
      the differences may be in color and shape. Generics can be absorbed slower in the gut depending on what ingredients they are made with and in some cases it can make a difference in getting enough of the active ingredient absorbed by the gut. You can talk to pharmacist about this, maybe he could recommend different brand of generic for Dr. to prescribe.

      These are only my thoughts on this, hope it helps.

    • Anonymous
      October 30, 2010 at 10:30 pm

      Question #1
      Does/Did Neurontin cause drowsiness or fatigue for you?
      [COLOR=”Blue”][/COLOR]Yes it does cause fatigue but slowly increase dosage and the fatigue can also be caused by the illness especially if it is CIDP!

      Question #2
      Is it possible to take Neurontin for a few years, then get off & still feel fine?
      [COLOR=”blue”][/COLOR]I tried to go off of it but was in too much pain…ended up crawling to the bottle in the middle of the night!

      Question #3
      Have you ever noticed a difference in effectiveness from bottle to bottle? Or between brand name Neurontin & generic Gabapentin?
      [COLOR=”blue”][/COLOR] Always had Gabapentin, becasue of the costs.

    • Anonymous
      October 31, 2010 at 4:24 pm

      Looks like most of your questions have been answered so I will just touch on a few things.
      I was on Neurontin for 10 years (always brand name). In the beginning it was very difficult to tolerate due to drowsiness and dizziness. However, within a year or so I got up to my maximum dose. The effects did not last longer than going off of the medication. Meaning, my symptoms are back the same as they were (plus/minus) the 10 year difference.

      My husband was on the generic gabapentin. He noticed huge differences in the dose and even from bottle to bottle and ended up going to the brand name before he was taken off of it. The 20% difference can vary either way, so it can really be 80%-120% of the active ingredient. The fillers from generic company to company can also vary, perhaps the pharmacy changed generic suppliers on you, which isn’t something you really have control over.

      My suggestion would be to go to the brand and see how much you really need it and what results you should get from it, then decide if going back to a generic is worth it, financially and in results.

    • Anonymous
      November 1, 2010 at 4:29 am

      [quote=Matteyrae]Generics can be absorbed slower in the gut depending on what ingredients they are made with and in some cases it can make a difference in getting enough of the active ingredient absorbed by the gut. You can talk to pharmacist about this, maybe he could recommend different brand of generic for Dr. to prescribe.[/quote]
      You know what I’ve found to be odd? Most people who are very knowledgeable about pharmaceutical drugs and have read the studies understand the (sometimes vast) difference between bio equivalence and [B]bio availability[/B], but pharmacists will argue til the cows come home that they are bio identical drugs and imply that you are crazy if you say they work differently. I wonder why they do this? Perhaps they are under a lot of pressure from the drug companies or their own pharmacy chain to push generics.

      Most of the time, a generic will do just fine. But there are some cases where the 20% difference in bio availability & efficacy is unacceptable. My youngest daughter had a weird bacterial pneumonia that wasn’t responding well to meds. Her doctor INSISTED that I only get the brand name because the 20% change could be the difference in whether or not she got well or if the infection merely got beat back a bit, only to rebound worse later.

      I have a real issue with pharmacists, drug companies, insurance companies, and others telling the public that generics are [B]exactly the same[/B] as brand. [U]They’re NOT[/U]. Some may work just as well. Some may not. They do not have to pass the same standard as brand name drugs and their bio availability can vary between 80% – 120%. That’s a swing of 40%. Imagine taking a generic medicine for months that works in the 120% range for your body, then suddenly being switched to one that only worked at 80% for you. You would noticed a huge HUGE difference in the way you felt. But if you ask a pharmacist about it, they will tell you the drugs are identical and it’s all in your head. That is not fair to the public.

      Sorry – I tend to get on a rant when discussing this issue! lol :p

      [quote=dolphnlvr8]By the end, when I was weaning off, I didn’t notice any difference between taking it and not taking it. I no longer need pain meds for nerve pain.[/quote] Well that’s encouraging at least. Now it may be that your nerves merely healed on their own, just like they are supposed to do in GBS. But if it did help the pain & eventually “numb” those signals to your brain, allowing you to stop taking the gabapentin & still get relief, that would be great!

      I guess I’m just worried about her being on this medicine long term & what the effects might be.

      Thanks everyone for your answers!!! ๐Ÿ™‚

    • Anonymous
      November 2, 2010 at 11:21 am

      I have been on gabapentin for just over a year. I have taken both the neurontin and the generic and noticed no difference. The pain never goes away but the nerves calm down somewhat for a short period of time which is a good thing. I was on a higher dose than I am now and tried to wean off altogether because of the fatigue and weight gain and swelling that are all side effects. I have a very high tolerance for pain and thought I could handle it. I could not. I went right back on by the time I got to the one pill a day taper down and I am not thinking anything about getting off it again! I am at a lower dose than before but its ok. getting off it is not an option. I tried topamax which did nothing for me so i am sticking with the gabapentin. HInt: rx filled at costco are the cheapest you can get, so if you can go there, it is the best way to save some money. you dont have to be a member. Re: fatigue….yes, the med does increase the fatigue, but not to the point where it debilitates you.

    • Anonymous
      November 2, 2010 at 7:42 pm

      A side note for taking much of any kind of medicine… When I was first sick the neuro put me on Neurontin and Pepcid (which I really didn’t take much of). I now experience acid reflux, etc. and believe it was the Neurontin that did my stomach in. Be aware and take care of yourselves!

Questions about Neurontin

    • Anonymous
      August 1, 2006 at 12:30 pm

      I’ve posted only once before but all the info I’ve read from this forum has finally got me some treatment. My doctors have told me for the last 4 years that my symptoms were not GBS related. I’ve been through test after test and I finally found a doctor that believes my symptoms are GBS related. So I thank you for all that you post here.

      I just started Neurontin last night. I was told to start in the evening for a few days before I take it in the morning. It’s only 300mg (?) to start. What are the “actual” side effects that you experience? Is there anything else that I can supplement with? How long before you get relief? Do you continue it even when you are feeling better?

      I’ve also found out, after having my cobra insurance run out, that I am uninsurable with a GBS history. I have my own business and am not sure what I will do now. Does anyone know if you can qualify for SSD insurance?


    • Anonymous
      August 1, 2006 at 1:37 pm


      My name is Angela, and I take Neurontin. I take 600mg three times a day. I have not experienced any side effects from it as of yet. I have been on it three months now. I go see my rehab Dr. soon, and he will tell me how long I will need to continue my meds. I have a feeling it will be a while, considering that I still feel as if I need it. My nerves are still all out of whack. I don’t skip any doses. My body tells me when I need it also… I can tell if I am running late on taking it.

      Good Luck.

      <333 angee

    • Anonymous
      August 1, 2006 at 2:47 pm

      I have been taking it for a little over a year now…3600 per day (I started at 900 per day and worked my way up)…I did feel a litttle sleepy at the begging but that past quickly. It has worked great for me…if you keep taking it for a while and it is not noticbly helping ask your Dr to up the dose….3600 per day is supposedly the max your body can absorb and it is important to stay on your dosage as it takes some time to build up in your system. As for how long….some folks on the boards hav ebeen taking it for years…..Did I miss anything Jerimy, Gene, Ali and the rest???

      All the best

    • Anonymous
      August 1, 2006 at 6:01 pm

      [FONT=”Comic Sans MS”][/FONT] Hi Kyliz and Anyone Else out there. I’m a first-time poster, and not at all computer literate, so hope you’ll all bear with me as I find my way. :confused:

      I’ve had GBS exactly 3 years now. One day I was perfectly fine, and before I knew it, GBS had completely destroyed my life as I knew it, and for no apparent reason!

      [COLOR=”Red”]Beginning:[/COLOR] I had a cold the day my husband and I left for a vacation in Cancun, and while in Mexico, had diarrhea from the food/water. I felt lousy while on vaca, and after returning home, I thought for a brief time I was getting better. The next week back at work, I began to notice numbness and tingling in both of my hands – weird. The next day the sensations were more pronounced, and continued to get stronger as each day passed. By Fri., I knew I had to get to the Dr. because I was having symptoms that made no sense. The Dr. had no clue – I spent Sat. & Sun. in bed, no energy, weird sensations everywhere…Monday came and I was in so much pain – in my back. At this point, my Dr. had my husband take me to the ER immediately. By the time we got there, I could no longer walk on my own. So my journey began.

      GBS is so rare…it requires a lot of research, and as everyone in these Discussion Boards says, it’s different for each of us. I was lucky that I never had to go on a vent, but I was paralyzed almost everywhere else – my legs, feet, arms, hands…and even muscles in my mouth and eyes were affected.

      [COLOR=”Blue”]Middle:[/COLOR] I spent 4 months in hospitals/rehab hospitals/nursing homes (I was only 50!)…and when my husband brought me home, I did not have the use of my legs at all, and was wheelchair-bound. During the first weeks of my illness, I had several IVIG treatments, and plasmapheresis once. My pain was intense during the first 2 yrs.; I was on Dilaudid (a narcotic) w/a Phenegran “chaser” to coat the stomach, and Duragesic Transderm Patch (a.k.a. Fentanyl – a less potent narcotic). Eventually I was able to tolerate the pain with just the Duragesic patch and Neurontin. Neurontin made me extremely drowsy at first…so I couldn’t use it in higher dosages for the pain, ’cause it made me comatose and I wasn’t able to participate in physical and occupational therapy.

      [COLOR=”Red”]Ending:[/COLOR] But this is a disease with far more happy endings than bad ones, and I am delighted to say that I can now function (almost) normally in many respects -I can walk without a walker or cane, speak clearly, my vision is back, I can do light shopping, most household tasks, and even drive short distances. And my pain is manageable now with only 600 mg of Neurontin daily, and nothing else. My main problem now is residual fatigue – it’s a big issue for me, even after 3 years. But considering where I started, and where I am today, I’m so thankful for the progress and recovery I’ve made so far.

      As for insurance and such, I was working for a corporation (for over 22 yrs.) when I got sick, so my health insurance was very good. I also had short-term disability provided by the company, and when that ran out, I had long-term disability from the company. When I had been disabled 1 1/2 yr., Social Security Disability kicked in, and after 2 years of continued disability, I was eligible for Medicare, even though I’m “only” 53 right now. I don’t know if that helps you or not, but I would contact Soc. Security to see what they can do for you.

      One thing for sure about the Neurontin – you and your Dr. have to keep adjusting your dosage until you find just the right amount. I hope your pain is nothing like what I went through.

      Good luck to you – I hope my story was somewhat helpful. I mean, we have to count our blessings, ’cause no matter how bad you have it, it could always be worse, right? I’m living proof that even a nasty dose of GBS can be overcome with time, [COLOR=”Red”]lots[/COLOR] of rest, nerve regeneration, therapy for the body, mind and soul, good (appropriate) drugs, and lots of love, patience and understanding from our family and friends!

      Be well,

      Kathie (Mutt Nut in Las Vegas) ๐Ÿ™‚

    • Anonymous
      August 1, 2006 at 6:29 pm

      I was on it for about 2 1/2 months, with no noticeable side effects. I was taking 1200 mg/day, but I’m about 200 lb and according to my doctors very “drug resistant”. It seemed to at least knock the edge off the nerve pain, and my father was put on it for neuropathy after he hurt his hip and sciatic nerve. It worked OK for him too.

    • Anonymous
      August 1, 2006 at 9:31 pm

      It can take up to 6 weeks for the body to get use to neurontin, it can take less, also. just take it 3 to 4 times a day as directed by your dr and you should do fine. if you don’t get good relief by the end of 6 weeks, let your dr know, there are other meds that can be tried. i’ve been on it for almost 1 year now and have had no problems, and that is rare for me! i have increased as needed, and now take 600 in the a.m. and p.m. and 900 at bedtime, along with diazepam and zanaflex.

      ya done good Stephen!!!!:)

    • Anonymous
      August 2, 2006 at 8:40 am

      Hi: I have had chronic pain since onset in May 2005. I have been on neurontin since then and have just gone up to 2700mg with little side-effects(makes me a little sleepy but it is hard to tell as I have a lot of fatigue as a residual) and think it is very effective. As for insurance, if you have your own business, I wonder if you can get it not as an individual but as a business. I am a therapist and incorporated and get my insurance as a business of one since I could never get it as an indivdual either. Might be worth looking into. Good luck, Jeff

    • Anonymous
      August 2, 2006 at 8:51 am


      stephen covered it quite well. sleepiness at the beginning is the only major downside.

      many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it.

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 2, 2006 at 10:09 am

      Thanks so much! It’s nice to know there are others out there who understand what I’m going through. Even family doesn’t quite get it-they don’t see me in pain so they think I’m fine. They think that I’ve made a “full” recovery from the GBS since it’s been over 4 years. When I’m tired I have difficulty writing my name or getting a thought out or dropping things-I’m told I’m just getting old!

      I’ve been a runner for over 20 years and there are times I can run fairly well now-better than I can walk. Right now I couldn’t run to my mailbox. I’m very grateful for every day that I can put one foot in front of the other (no matter what the speed)


    • Anonymous
      August 4, 2006 at 3:35 pm

      I was diagnosised with GBS in Dec 2005 and was advised by my nuerologist that I was fully recovered on May 31,2006. A doctor from this website before it was hacked into posted that Vitamin B complex would help with the pain and neuropathy. It worked with me for part of the day (approx 10-12 hours). I religously took a 100mg Vitamin B complex, a Biotin vitamin, and Niaspan and made my life tolorable. This was my option over taking Neurontin which my employer would not let me work while taking. I am also trying Anodyne treatments which seems to help. Anodyne is infared treatments on the feet to heal the nerves quicker.

    • Anonymous
      August 4, 2006 at 5:22 pm

      shadowrider, does your insurance pay for the light therapy? is it working well?

      i don’t understand how your employer can discriminate like that and get away with it. neurontin is not a narcotic.:confused: ๐Ÿ˜ก

    • Anonymous
      August 4, 2006 at 9:35 pm

      I’m new to this as well. I just start acupunture. As far as being self employed, check with your human services, ecomic support, you may get medicaid, I did. I’m 1 of 4 in yhe area with this. I have a “MILD” case, LOL. I’m the only 1 that didnt end up in the hospital. I did have in home care ontil I could walk down the 4 steps with a cane. I do PT 2 times per week. At this point, I have been able to take the pain, no meds. I DO NOT RECOMEND IT TO ANYONE. I’m a stubber, blonde, polish person. Good luck to you.

    • Anonymous
      August 4, 2006 at 10:57 pm

      I’m hoping to start a new job next week and am concerned as well about the insurance covering things. I know it’s dishonest however I am going in for interviews tomorrow and I intend on doing my best to act as if everything is normal with me. If I land the job, once insurance takes hold I’ll probably doctor shop as much as I need to in order to find someone who can get me on w/out a pre-existing claim issue. There is no way I can afford things besides lying and I think it’s horrible that the system is set up that way.

      Here in the Republik of Kaliforniastan, I was told that Medi-Cal won’t cover me for things b/c I’m 29 instead of 65 years old, I don’t have children, my unemployment status to date means squat to them as well. The worker at the Medi-Cal office told me that I can try to petition things, but since I’m not a parent, elderly and toung in cheekly she said “since you’re not an illegal immigrant” I most likely won’t get any relief from the expense. So far I’m at about 20 thousand dollars and climbing. Dr’s don’t really want to talk to me about what’s going on. One even told me that b/c of the expenses involved in treatment and since I don’t have insurance that he’d rather just prescribe me pain killers instead of pro-active treatments.

      As for your meds, you can get those on the cheap. Go get your Rx’s filled at Costco or a Sam’s Club. You don’t need a membership for the pharmacy and as an example, my usual pharm. wanted close to 70 USD for a 2wk supply of Neurontin but Costco only charged me 22.04.

      As for side effects; I’ve been tired as this is my first week and a half of taking it however I did feel almost immediate relief from pain. After a few days the pain came back but not nearly to the degree that it was before Neurontin. Driving is still tough but doable although since I’m presently driving a manual transmission automobile my legs do get rather fatigued, especially when I’m fortunate enough to get stuck in the rolling parking lots also known as Southern Kaliforniastan highways during rush hour.

      So far, Neurontin has been a godsend for me. Lyrica didn’t do squat but I was also on a low dosage of it. Best of luck to ya.

    • Anonymous
      August 5, 2006 at 7:15 pm

      Welcome to the forums Kathie. Glad you found us.

      Hope you keep on posting.

      Best Wishes