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Neurontin is NOT my friend

daisy maeddaisy mae Posts: 109
edited 06/11/2012 - 8:55 AM in Pain Medications
So I have been up at 900mg now for a few weeks. I am losing my mind. I don't make any sense when I talk, I cannot for the life of me remember a thing I'm supposed to and I have gained like 8 pounds! I was so afraid of gaining weight and now look. No pain relief and now..I am all poofy and miserable. My dr is gone for 2 months..so I'm sos I suppose. Just wanted to vent a bit. Thanks


  • I'm sorry to hear that you are having trouble with the medicine...

    You are still on a pretty low dosage as others go up to 3600mg per day...The side effects are why a Dr. starts on a low dosage and then slowly moves up.

    Many medicines do take about a month or so to get better with the side effects..Of course if there are any life threatening one's, then you should contact your Dr. or go to the ER...These should be listed on the information that came from the Pharmacy with the prescription..

    The reason that some people gain weight on this type of medicine (Neurontin, Lyrica, Cymbalta)...is that it sometimes causes fluid retention...as well as it makes people crave carbohydrates and salt. All of this together 'can' cause weight gain but doesn't have to..

    While on this med..you need to actually make sure you are drinking 10-12 glasses of water a day to flush out your system..People here water retention and do the opposite and drink less...that is counterintuitive...

    Also..it's important to eat only complex carbohydrates...like whole grain (wheat germ, brown rice, wild rice, buckwheat, corn meal) There are now many things that include whole grain in cereals, pasta, breads, bagels, etc. As well as fruits like apricots, pears, oranges, plums, grapefruit and prunes.

    There are a bunch of veggies that have complex carbs as well.

    You need to have a diet in lean meats, eggs, poultry and fish.

    As well as trying to walk 30-45 minutes a day...Even if it's very slow...but it's very important to get daily exercise that is approved by your Dr.

    Now..if you are doing all of these things and then still have a rapid weight gain..then contacting your Dr. is appropriate.

    This particular medicine as I'm sure you know is specific for nerve pain...And as I wrote...you are on a lower dosage to start so you may get better relief as your Dr. raises the mg later on...

    Or...it may be that he decides to switch you to another choice like Lyrica or Cymbalta that may have less side effects for you. I couldn't take Neurontin as I had serious complications after the first pill...So I was switched to Cymbalta for a few years...this helped my nerve pain and then after my last surgery...I was blessed to not have severe nerve pain to need it anymore..

    I see in your signature that you take Dilaudid as well...Is this on a daily basis to help with other pain? As well as I see you are on the generic for Flexeril....does this help your muscle pain? I use this too.

    It's really about using a combination of medicine and other modalities to help manage our pain...I live with a 5-7 daily depending on activities...

    Obviously I am not a Dr. and these are just suggestions based on living with CP for 10 years...so it's important to always discuss things with your Dr.

    I wish you luck!!

  • Drinking 10-12 glasses of fluids a day should you have any health issues, that amount of fluid might not be appropriate for you. Please check with your medical doctor if so.


  • Yep...that's why I say at the end of my post that one should ALWAYS check with their Dr.

    My whole point was that once cleared...this type of medication...tends to cause water retention..and that is because the body is holding on to sodium...so with both changing the diet..as well as having proper water intake...it can keep people from gaining weight on these meds...It doesn't have to be an inevitable..

    There is really only extremely rare conditions where a Dr. would not recommend getting enough water each day..Too many people drink too much coffee, sodas (diet or regular) all the fake sugar drinks..

    But of course I absolutely agree that it should always be with the Dr.s ok based on one's total health history.
  • Thank you for the advive :)
    I also suffer from severe IC nd I cannot drink that much fluid. My bladder is on fire as it is.
    I do exercise everyday.
    I am 5'6 and I now weigh 130. Not terrible but when I was lifting I was firm and weighed less. Now I'm just flabby.
    I am just feeling yucky I suppose. Depressed even, yes the dr is aware as I have told 3 of them I have felt this way for months now.
    I have tried Lyrica, terrible side effects. I don't know. We'll see how this goes. I am terribly sensitive to these types of meds so getting up to 900mg was a long process and was hard on me nd my family.
    Flexeril is for my back and bladder and vaginal pain (surgery gone wrong)
    Thanks again for the insight. Have a blessed day :)
  • I didn't like neurontin.. make me very spacey. Couldnt remember things to save my life.. little things like simple words in a sentence.

    Also made me get really dark sometimes and think what it would be like if I wasn't around any more.. not suicidal but just thinking about what would happen..

    Bad stuff for me.
  • I agree wholly with Sleepgirl, 10-12 glasses is a bit on the high side - even for a person without external medical issues Daisy mea. But too, what 'oz' size are we talking about?

    I'm on Lyrica, and I drink 5-8 16 oz bottles of water a day. Last I heard (and I am over), it is normal to drink 8-10 8 oz glasses of water a day! Oh, and my water retention doesn't change, but I do feel better. (G)

    Is there a 'standby' doctor that you can talk to about what you are feeling and going through? I lucked out on most of the 'bad' side affects with Lyrica - edema and retention are there most times, otherwise it has been very helpful for me.

    I've not tried other nerve meds as me and Lyrica seem to be a good fit so far (2 years this coming December - max recommended dose). I hope you have answers soon. Gentle *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I drink 10-12 8oz glassed of water a day...

    The 'normal' required amount of water per day is 8-10 glasses (8oz each)...

    So I am drinking 80-96 oz a day...While Aviatrix...you are drinking 80-128 oz a day...

    I was just stating that those on certain medications that cause dehydration or water rentention ....who do not have health issues that prevent them from drinking this...should be upping their normal intake a bit to help combat the side effects from the medicine...

    Obviously it's up to people to discuss this with their DR. but those with IC are actually recommended to drink the normal 8-10 glasses a day...

    My main point is that too many people don't drink enough water...they drink soft drinks...where both the sugar and the substitute sugar one's are detrmental to their health.

    And for those on medications like Neurontin, Lyrica, or Cymbalta...do not 'have' to gain weight....there are many ways (like adding water), exercise, eating less simple carbs, less sodium, etc. to stop this from happening...

    It's just about talking to your Dr. and finding the other non medicinal modailities to help manage the side effects from some medications.
  • I was advised by my dr to NOT overdo the water and no more than 6 cups a day. Not all of us suffering from IC can be lumped into the same pile.
    It's silly..me complaining about what..6 pounds? I am a size 5-6. I was having a terrible day. My deacon just called and we had a lovel talk about life.
    I will say this, I don't think it is a good idea to suggest that everyone who *does* gain weight while on these meds is not drinking enough water. Dietary changes are obvious things, we should always watch what we put in our mouth and careful preperation is key. I am a huge advocate of fresh foods and not using any dressings or sauces other than fresh garlic...(and I'm a big believer in breastfeeding)
    I'm just saying that it can be taken rather harshly and possibly offend someone who is going through this. Chronic pain is terrible enough without always feeling horrible how we look, especially if you are stuck on a heating pad on the couch while your babies are playing. :(
  • Hi Daisy...I really apologize that my post came across as saying that you 'have' to be drinking more water...It was an initial suggestion before you mentioned the IC...and then I was just writing in general about IC as my best friend suffers from this...and that 'some' people with IC can drink 8 glasses a day...some can't..

    I was focusing more on the intake that someone is allowed...to not be sodas and such..that's all

    That it's all about talking to your (collective you) Dr.

    So whenever I post on these boards...I am just giving general suggestions...like we all do..as none of us are DRs...it's up to each person to work with their own Dr...

    I was trying to give help on the weight gain issue and through out all the suggestions that I tried when I was on Cymbalta...

    So my second post was not saying at all that you should go against your Dr...And again..I talk in generalities to all people who read these boards and posts and may get helpful hints as some may have trouble with nerve meds and not have IC...I completely realize that you are limited in what you can drink..

    Where in the world did I speak harshly about how you look?

    I also never said it was 'all' about water...I wrote about many different things to help combat weight gain...Again..I've been there..

    All of us on these boards are suffering from chronic pain...I've been doing it for 10 years and numerous surgeries...

    I was truly trying to help in all my posts...I'm sorry for such a minsunderstanding...

    We are all here to share our suggestions..hints/tips...and empathy..I learn a lot from others on here about different things..

    That is why I took so long to compose my first post to you...to try and help..just like I do for anyone who comes on here...

    I hope that you can get some rest and some relief a bit from your pain this weekend...

  • Sorry to hear it's not agreeing with you. I have taken it off and on for about eight years now, and have never had any trouble with weight gain. Amitryptilene, however, was a different story! I had the most incredible sugar cravings and gained 35 pounds; when I switched to Neurontin/Gabapentin, that weight melted right off.

    I have been on 900 mg forever, only at night, and it definitely helps me with sleep. I initially had a little bit of that "spacey" feeling but seem to have gotten over it. I wonder if it is the combination of everything you are on that contributes to the weight gain, etc. - have you talked to your pharmacist at all? I find I get much more info from her than the doctor, as she is the one who is knowledgeable about the meds.

    Take care and hope you get some relief soon.

  • I've been on 3200mg of gabapentin for about 3 years. Shrinking from multiple spinal problems has brought me down from 5' 3 1/2" to 5' 2" , I'm approaching 50 & had been a size 3 from my freshman year in high school until 3 years ago except during pregnancy. I've worked hard, eaten right & exercised my whole life to keep my weight down. Due to overwhelming medical conditions my exercise has become non existent, I get around with a power chair & due to chronic severe pain most of my days are spent in bed. When I started gaining weight I cut my caffeine intake down to 1-2 cups of hot tea per day and drink nothing else but water, about 2 liters a day. When I started retaining fluid my doctor put me on a fluid pill which is also a medication to reduce high blood pressure although I've never had blood pressure issues. Unfortunately I continued gaining weight & surprisingly my blood pressure even started to increase. I reached 172 pounds on my very small frame and even eating salads everyday I lost a little but I couldn't get the weight to come off. I gradually started coming off the gabapentin about 10 days ago & I'm already down to 145. I never would have thought it possible to gain and subsequently loose so much weight with this medication. I've had some pretty bad withdrawal symptoms & my doctor is going to try an alternate medication. I don't ever want to take gabapentin again.
  • daisy mae said:
    So I have been up at 900mg now for a few weeks. I am losing my mind. I don't make any sense when I talk, I cannot for the life of me remember a thing I'm supposed to and I have gained like 8 pounds! I was so afraid of gaining weight and now look. No pain relief and now..I am all poofy and miserable. My dr is gone for 2 months..so I'm sos I suppose. Just wanted to vent a bit. Thanks
    I am up to 2,400 mg neurotin ... I too have no memory. Its sad my conversations are embarrassing. I have severe pain/ 2 surgeries in 2 months going in a 3 soon. My therapist just told me neurotin can cause depression which i am already depressed and on med for that. I feel your pain :( i just keep hanging in there bc all meds have side effects and many are worse than others. We cant jnow untill we try the meds which sucks.
  • popartpeteppopartpete Posts: 1
    edited 11/03/2015 - 5:53 PM
    8 to 12 glasses of water per day is far from too much. I can drink a gallon or more and I'm still alive and kicking. You'd have to consume a vast amount of water before you would have negative effects. You'd have to guzzle down water non-stop all day and who could do that? And as far as medicines and weight gain. If Neurotin causes some water retention and a few pounds that way, that's that. It's impossible to gain a bunch of weight by just taking a medicine. Your weight is determined by calories in and calories out. It's a balance of how many calories that are eaten, calories used for your body to operate, and exercise. If you remain at the same balance, you wouldn't gain weight. Weight gain comes from overeating and lack of exercise.

    There are no medical professionals on the forum side of this site. Therefore everything you read is based on the personal experiences and/or research done by the individual member. Comments should never be taken as pure medical facts. You need to discuss this with your doctor. They are the only ones that can provide you with detailed information about you, the patient.

  • SavageSavage United StatesPosts: 5,422
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  • SavageSavage United StatesPosts: 5,422
    I, too, gained weight from neurotin. Because of that, with doctor's permission, I stopped it for awhile.
    It didn't take long and I decided the weight gain was worth it to be able to control some pain. So doctor ordered again.

    When I resumed taking the nuerotin, I did not have the problem with weight gain.
    Maybe it took getting used to and that side effect left me. I dunno....

    Side effects of other meds have literature that reads there can be weight gain.
    Ex:...My son needed daily prednisone for life, for kidney transplant, and that caused immediate weight gain, before he had time to increase any eating habits vs exercise.
    First transplant was when he was five, and he was active and running around average kid.

    Re water intake, I have friend with certain conditions, and one symptom was she drank the water non stop.
    That led her to medical treatment for seizures and electrolytes and other off balances in the system.

    Everyone is so different and symptoms may need to be treated as doctor tests for cause.
    Side effects of meds need to be weighed against the benefits, I think.
    My experience is that most side effects are relieved or lessened as my body becomes accustomed to the medication.
    Spine-Health Moderator
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