neurontin side effects

    • Anonymous
      August 26, 2007 at 12:20 am

      Just wondering what kinda side effects any of yall have had with neurontin. I started a low dose 3 weeks ago(100mg) and at first thought it was helping and went to 200 mg (baby dose). Pain at night improved but I didn’t know if it was just me being very careful with my activities or if it was really helping. I started getting more hungry and read weight gain was a side effect. So, naturally being female, I stopped it last week. Now, pain is worse(progressive over last few days) . Was up till 3 am and only slept post ambian. I guess it was really helping more than I thought. Have any of you experienced weight gain? I would like to push the dose up but really really don’t want to risk gaining weight. Any better luck with Lyrica?
      Oh, by the way I’ve been working 7 hours 5 days a week. Never thought I would appreciate that but I do count my blessings. The true challenge will be in 2 weeks when I have to pull an 11 day straight(back on call). Forced by hospital administration to take call or loose hosp priviledges. I wish I could get Rocker on these people.Even aggravating as it is to have to do more than I can(my legs make me pay), I still feel blessed to be doing this well considering 8 months ago I was paralysed.
      Any input on neurontin would be helpful. That and an AFO will have to perform miracles. I would also like to thank everybody for their support the last 8 months. The real experiences of the GBS forum is so much better than any info that literature/doctors/books have provided. Dr. Shawn

    • Anonymous
      August 26, 2007 at 3:18 am

      Dr. Shawn, Lyrica has side effects also. Its just different for everybody. I have gained weight, not only due to neurontin though. The weight comes and goes with every passing day, it just depends on other factors for me. My only side effect is a little sleepiness when I increase the dose, other then that I’m good with it until my body gets use to it, then I have to either raise the dose or lower it for a while. My usual drug reactions. If it was helping then by all means go back on it. You need to have good control of your pain to be able to do your job. A little weight never hurt anyone, alot of pain can have a bad affect on your body(the dreaded R word) That is great that you are able to work 7 hour days! Congrats!! Take Care.

    • August 26, 2007 at 3:44 am

      the site affect of Lyrica is gain weight and lot of appetite, I’m on lyrica and are changing to neorotine again, I felt it when I started on Lyrica how my weight got up, and the doctor at the rehab center did not listen to me, and I got now my doctor that I had when I was dx and he wants to pull me out of the Lyrica because the first site affect is gain weight, but it is many other site affect with lyrica, and more it is working on you more site affect you get.

    • Anonymous
      August 26, 2007 at 8:25 am

      Dr Shawn you may try Lyrica. I am on Lyrica and I can’t say if I gain weight because I didn’t but the reason might be that I am also on Concerta for my ADHD and that made me lose weight because I didn’t feel the need to snack all the time.
      But maybe Lyrica would work for you. But the list of side effect is weight gain.
      But if the Neurontin works for you even though there is weight gain you have to decide how much weight you are gaining versus the fact it is helping you.
      I was on 1800mg a day before I switched to Lyrica.
      I am glad you are working 7 hour days. But for your 11 day rotation you might consider going back on Neurontin to help you get through it then worry about switching medication.
      Good Luck


    • Anonymous
      August 26, 2007 at 11:21 pm

      Thank you all for your advise. I started back last night and it helped. But, I’m curious if anybody is taking that has not gained weight? Oh, the vanity. Going to Florida next month(ya know bathing suit and all). Looks like Lyrica is just as bad as neurontin for weight gain. Anybody else with experience with both? Shawn

    • Anonymous
      August 26, 2007 at 11:39 pm

      I have been following this string with great interest. My pain level has been increasing and sleep has become a problem. Now that school has started I have to appear somewhat alert. Middle-schoolers can sense any weakness [just kidding].

      At 6″6″ 325 lbs I don’t want to try anything that is going to increase my appetite. Has anyone found anything that works?

    • Anonymous
      August 26, 2007 at 11:53 pm

      I have been on Neurotin and Elavil since June. I have not noticed weight gain. I have noticed an increased sweet tooth. I try to keep it in check.
      I also thought it was the elavil that caused the sweet tooth.
      Both meds though make me sleepy tired. So it is hard for me to tell whether it is the medication or the GBS/CIDP that is causing the fatigue/sleepy/tired.

    • Anonymous
      August 27, 2007 at 1:28 am

      dr. shawn, nuerontin made me gain alot of weight but did help the pain. i was taking 2400 mg. per day. the elavil also helps but increases the sweet tooth. i liked cymbalta and was able to lose a little weight on it but the price was too much for me. now the elavil and darvacet and naproxen keep the pain at a tolorable i have a fatty liver and high cholesterol due to the weight gain. guess its always boils down to the lesser of two evils. lots of luck. barbara

    • Anonymous
      August 27, 2007 at 9:17 am

      I noticed an increase in appetite too. Also, I seem to have violent dreams. they are scary, and they seem so real. But the neurontin seems to keep the vertigo, lightheaded feeling I get away so I keep taking it. (100 mg baby dose does the trick.)

    • August 27, 2007 at 12:55 pm

      Hi Shawn,
      Grandpa Bob took neurotnin for his trigeminal neuralgia, he did gain weight and it made him very tired, as well it was not enough for the pain. He currently take Lyrica, for the first time in years, the pain is manageable. He has gained weight, but he does snack alot! Alot of the weight also seems to be water retention in his legs, as he is on hydrochlorot max dose. There is no congestive heart failure causing the water retention, they feel it is a side affect of the lyrica. I should mention he is on a higher than reccommended dose.

      He also is very tired and takes naps often and he is a little spacey some times. Who is to say this just isn’t age. Regarding his pain however, he thanks God every day for the person that came up with this drug!

      Try to take it easy with the 11 hour days! Maybe you could get a cleaning lady twice a week that week! Take out dinners and a babysitter to help with the kids after school! Ahhhh would that be nice!!! Well, I will say a prayer for you and for all of the doctors that you work with so that one day they can better understand! Have a great day!

      Dawn Kevies mom ๐Ÿ˜ฎ

    • Anonymous
      August 27, 2007 at 11:40 pm

      I want to think everybody for their responses. Weight gain does seem to be an issue. It really does seem to make me hungry. My husband says “TAKE IT – you really complain less when your taking neurontin”.
      Dawn, I will admit- I already for years have had a twice a week house cleaner. She is a godsend and I really couldn’t do without her. When I worked 11 hours days she was necessary and now with GBS it is all I can do to make it at work(even with my decreased scheduled). I can’t even walk normally when I get home. We also eat take out alot. I’m the queen of “strategic utilatization of resources”. With my decreased income we have made changes but I’m fortunate to be able to keep my housecleaner.
      I would still like to hear from more people about their neurontin/lyrica experience. Hopefully this will help me/others to decide about these meds.Thank you! Shawn

    • Anonymous
      August 28, 2007 at 12:17 am

      Hi Dr. Shawn: I have been on neurontin since my diagnosis and have gained a lot of weight since getting out of the hospital. I wouldn’t give up the neurontin as it makes me feel much better and wonder if the weight loss is also due to the difficulty I have getting good exercise. When I watch my diet and get exercise, such as water walking, I do loose weight. I think I would say I gain it a lot more easily than before GBS but can’t say why for sure.
      I think it is great you are hanging in there trying to do what you think is right. If the neurontin helps, why not take it? It sounds like you are on a minimum dose anyway. I am on 2700mgs now. Anything less and the pain came back. Now that I am on oxycontin I may try to lower the neurontin in a while and see what happens, though my pain doc says that now that I have finally gotten pain free don’t mess with anything for now. Jeff

    • Anonymous
      August 29, 2007 at 11:12 pm

      I took neurontin in 2004 when I was having a lot of numbness in my feet and deveolped restless leg syndrome. At first it was a godsend. I took 300 mg before I went to bed. Within a few weeks, the numbness was gone and I felt great. After about six months, though, I started to get this strange side effect….my tongue felt thick. I stopped the neurontin and it went away. I have never taken anything stronger than Advil for pain. I have gotten myself use to the occasional leg , feet and back pain. I think I have a high tolerance.
      Good luck and I hope that one day the other doctors come to understand your illness. The problem with GBS is that most of us show no outward signs of our residuals and people don’t understand.

    • Anonymous
      August 30, 2007 at 10:34 pm

      Jeff – I agree that it is so hard to exercise and this may have alot to do with weight gain. I used to run 5 days a week and ride horses every weekend. Now, I do good to walk slowly around the block and I have to sometimes be careful of even this.
      Boomerbabe, I agree that it is so frustrating to hear “you look great-I’m so glad you are well” when I know it is so far from the truth. I haven’t had tongue problems but I did notice I got sleepy but had trouble falling asleep after being on it for a few days. I have been off again for 3 days and finally got to sleep last night without the help of 1/4 ambian. This may not be the neurontin – lots of stress at work- but it seemed to get better off the neurontin.
      Anybody else with experience? Shawn

    • Anonymous
      September 6, 2007 at 4:36 am

      I have been on 5400mg of Neurontin daily for three years. I have gained fifty pounds and holding. I could blame it on my diabetes type 1 so not sure where it came from. Sometimes it makes me sleepy but not often. Then again there are times that I can’t hold my eyes open and just fall asleep for no reason. For sure it gives me gas but I live in my room and seldom go out so it offends no one. I once cut back to 900mg a day for a month but the pain was horrendous so I’ll never experiment again. I thank God for Neurontin. My residuals constantly fluctuate but my diabetic neuropathies surely contribute. Wish there was a pill for that. I almost consider my GBS next to nothing when compared to diabetes. Would like to find someone else with Juvenile Diabetes Type 1 and GBS just to compare notes. Good luck finding what will help you for the rest of your life.

    • Anonymous
      September 6, 2007 at 9:24 pm

      Hi Michael, Welcome to The Family. Sorry to hear you are having such a rough time of it with the dn, neurontin should help that pain as well. Is there a chance you could add an anti depressant or Lyrica to help control the dn? Take care.

    • Anonymous
      September 7, 2007 at 3:29 am

      Hello Cheryl. For 3 years I’ve been taking Neurontin, Prozac, Zocor, Inderal, Enalapril, Flexaril, and Prilosec. All these seem to be doing their jobs. My Dr. still isn’t happy that my A1C is 9.5. He wants it a 6. It’s hard to make them all happy.

    • Anonymous
      September 7, 2007 at 8:03 am

      michael, what are you taking for your pain? whoops, i see it is neurontin. how much do you take? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 7, 2007 at 8:20 am

      You got that right Michael.;) Have you been able to try the inhaled form of insulin? Are you on any supplements? or diet restrictions that might be causing some problems? I understand how frustrating it must be for you, I wish there was an easy answer for everything. Take it easy.

    • Anonymous
      September 7, 2007 at 6:07 pm

      Michael, Have you tried an insulin pump? This and the long acting insulins such as Levimir and Lantus are awesome. Also there is the new Exubra(sp?) which is the inhaled insulin-this is short acting like the regular insulin. Used with meals in conjunction with the long acting insulins. You need HbAic at least below 7.0 to decrease your complications(ie neuropathy). I agree with you diabetes(especially Type 1) is a horendous disease but if you are savy with your care you can really extend your quality of life. So glad to meet you. I wonder is there is a conection between the automune/genetic theory for Type 1 diabetes and GBS? Dr. Shawn

    • Anonymous
      September 7, 2007 at 6:09 pm

      Michael, Also be careful with Inderal and fragile diabetes since it can blount the symptom response to hypoglycemia.Dr. Shawn

    • September 9, 2007 at 4:19 pm

      Im getting of the Lyrica and taking neurotin, and for me it is a relief, why Im awake for long time, I got so sleepy of Lyrica, but yet Im not on same level on the neurotin that is im only taking 900 mg and I have bad pain when Im walking more then few meters. But my apertide have are not as much as it was on Lyrica, I think we all have diffrent side affect of each med. But for me neurotin is better, less water on my feet, feeling much better in my head ๐Ÿ™‚ and that is sure good

    • Anonymous
      September 9, 2007 at 10:16 pm


      trying to compare the amount of neurontin & lyrica doesn’t work. the max of each is so different, but more important is that 900 mg of neurontin sounds like too little for you. try doubling it or tripling it. and/or take 400 mg 4 hours before you plan on walking. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 9, 2007 at 10:53 pm

      Just wanted to let you know you are not alone. I am a 33 year veteran of Type I Diabetes. It is such a drag trying to manage the two together. I have the pump and still struggle to get my A1C down. It’s around 8 and that is because I can’t exercise the way I should. Dr.Shawn, there seems to be a higher incidence of CIDP in people with diabetes. Of course there has not been enough research on this to make any definite connections but the autoimmune response is similar and would seem to make the connection sensible. Neurontin is a great drug for blocking nerve pain and does make one tired and hungry. I went off it as soon as I could but would use it again in a heartbeat for the kind of pain I was having so weigh the pros and cons and do whats best for your pain management. That is the priority. Be well.

    • Anonymous
      September 10, 2007 at 1:32 am

      Hi Dr Shawn,
      I’ve Been Spending Alot Of Time Reading In These Forums. Usually Late Because I Too Have Difficulty Sleeping. I’m Finding My Limitations, Which Is Hard For Me Because I Don’t Have Time Really To Be Limited. I Worked Last Thurs. X 4 Hrs. And Had To Remove My Shoes @ 10:00am. Dr J And The Other Nurse Is Allowing Me To Do Call-backs, Computer Work… I’d Rather Be Running, Which Was The Norm For Me Before This Started. I Am Going To Work Tues And Thurs At Least 4 Hrs Maybe 8. Then Slowly, Hopefully Go Back To 8 Hrs Daily. It’s Really Hard To Know What To Expect From Day To Day. These Forums Have Helped Me To Realize I’m Not Alone! Hope To Hear From You Soon.

    • Anonymous
      September 10, 2007 at 5:11 am

      Jerrie, I’m so glad you found this forum. I can’t believe you are already back to work. It was so good to talk with you the other day. It really helps me to talk with someone going through the same. Just take it easy and go slow at work. I would overdo frequently and set myself back. I also notice that I try to reserve all my energy for my work and this is not good for my family. I just don’t know how to fix that. I feel guilty about not being available to my patients as much as I used to and I feel guilty about not being as active with my family. Call me anytime! Shawn

    • Anonymous
      September 10, 2007 at 3:32 pm

      Hi Jerrie, Welcome to The Family. Don’t overdo it, don’t rush into long hours, your recovery can’t be pushed. Linits are best, overdoing it can cause a relapse, and believe me those aren’t any fun. Take care.

    • Anonymous
      September 11, 2007 at 1:48 am

      Dr. Shawn,

      Does Neuronton have anything to do with “hemochromatosis”?? Which…….My Dr. is diagnosing me with (preliminary).

      See this email from my Doctor inre to this:

      …………………”From: Gregory Hanson
      Date: 2007/09/08 Sat PM 02:11:32 CDT
      To: [email][/email]
      Subject: Update

      Hi Mr. Leach:

      Ferritin 1329 Very high
      TIBC 275
      Iron 212 High
      Transferrin Saturation (TS) (212/275=) 77% Very high


      Try this website. We need to confirm the diagnosis of elevated iron,
      so will do a repeat fasting iron levels test Tuesday or later at
      Labcorp. We will enter this Monday, and you can tell the lab persons
      entered on the computer.

      Explore the website, and you will not that some of the non-specific
      symptoms could be related to the iron overload. Actually diagnosis
      is usually worked up through the GI doctors.

      I think this is a positive finding and we usually have good treatment
      outcomes (Don’t get ahead of ourselves, we still need to make a
      diagnosis, but hemochromatosis is the most common).

      Thank you.
      Greg Hanson “”………………………..

      Could you please give me some of your opinion on this……………as a “second opinion”, if you will.??? I am really worried about these blood results and the preliminary diag. from my Dr.



    • Anonymous
      September 11, 2007 at 4:20 am

      Since there was nothing like a current cold or flu shot there was nothing they could pin it on. Then 30 days later I have 800 blood sugar. I was hardly ever sick my whole life. My matabolism was high. I totally know that the GBS made way for the Diabetes. All the neuropathies seldom fluctuate unless my blood sugar drops below 90. Then I’m really hurtin’ and don’t have much time. You want to know about panic? So, I am 58 and can’t drive. I lost my job as a civilian working for the Air Force. Got early Social Security for being totally disabled. Just sorta spinning my wheels. My daughter in law has the pump. I don’t like a machine telling me when to eat. I use Novalog and Lantus. I have direct control with the syringe. Besides, what else do I have to do?

    • Anonymous
      September 11, 2007 at 8:12 pm

      I know of no connection. Dr. Shawn

    • Anonymous
      September 11, 2007 at 10:32 pm

      I’m am going to take a leave from the forum. Work and family are making large demands of me. I just wanted to thank everyone for all their support and encouragement. I have learned so much from this site and all the experiences of others- especially that we are not alone in the struggle. Best wishes! Dr. Shawn

    • Anonymous
      September 12, 2007 at 7:09 am

      Good luck in your recovery DR Shawn. Take Care
      We understand completely come back down the road and give us an update.


    • Anonymous
      September 12, 2007 at 10:51 am

      You will be missed! Would love to hear from you any time ๐Ÿ™‚ I wish you “well”.

    • Anonymous
      September 12, 2007 at 9:37 pm

      I want to thank everybody for all their support. I’m working almost full time and you know “stragic utilization of resources”. I don’t think I could have come through this time as well without the encouragement of this forum. Bless you all and stay strong in the struggle. Shawn

    • September 15, 2007 at 7:48 am

      [quote=tofraljos]Im getting of the Lyrica and taking neurotin, and for me it is a relief, why Im awake for long time, I got so sleepy of Lyrica, but yet Im not on same level on the neurotin that is im only taking 900 mg and I have bad pain when Im walking more then few meters. But my apertide have are not as much as it was on Lyrica, I think we all have diffrent side affect of each med. But for me neurotin is better, less water on my feet, feeling much better in my head ๐Ÿ™‚ and that is sure good[/quote]

      well I though it was 100 mg per capsule but it is 300mg and Im talking 4 in the morning and 3 in afternoon and then 4 in the evening.. no wonder Im feeling good. im talkin there for 3300 mg per day. not 900mg. *LOL*