neurontin medicine

Discussion in 'Fibromyalgia Main Forum' started by granmaw09, Feb 26, 2010.

  1. granmaw09

    granmaw09 Member

    I would like to know how this drug has helped anyone. I know the doctor told me that alot of people take up to 1000 mg. of it daily. I am only currently taking 300mg. daily. I have a sensitive stomach so had to start out slowly. I have only been taking it since December.
    So far, no difference, which I know probably there won't be until I take more of a dosage. The doctor would like me to take at least 500mg. daily. I was wondering if it made a difference in anyone of you, how did it do that? What did you start noticing? I was on Savella for 6 mos. no help there except some side effects. Please if anyone has any idea, I would appreciate it.
  2. rocky76

    rocky76 Member

    300 mg a day is a low dose...

    I take 300 mg 4 x aday.....

    Hubby takes 800 mg 4 x aday for seizure control...

    I have a very very sensitive stomach and it never bothered me...

    Its been a life saver for me...It doesn't take all the pain away ...but it makes it tolerable...

    Bad part is .....weight gain....40 pounds....
  3. granmaw09

    granmaw09 Member

    I CERTAINLY DON"T NEED THE WEIGHT GAIN!! I know I ahve some fluid retention like the dr. said I would have from it. How do you function with the side effect of tiredness? By the time 5-6 p.m. rolls around I can hardly keep my eyes open so I close them for an hour. We have fatigue anyway with Fibro. Are you taking anything else besides the neurontin for Fibro? granmaw09
  4. rocky76

    rocky76 Member

    It took about a month before I adjusted to the Meds...

    Now I don't even notice any drowsiness....

    I take
    Carbamazepine for Trigeminal Neuralgia....Daily
    Ibuprofen for Inflammation...Once in awhile...
    Valium if my stress level is off the chart....Ha...
  5. AuntTammie

    AuntTammie New Member

    I was on this yrs ago and the tiredness not only did NOT go away for me, but it seemed to have a cumulative effect - getting worse the longer I was on it....between being so tired from it and having problems with balance and some other issues, I decided it was not worth it (we are all different in how we react to meds....I am generally extremely sensitive to most meds - this was actually one of the least bad ones for me, but it still wound up making it almost impossible for me to function)
    [This Message was Edited on 02/26/2010]
  6. Janalynn

    Janalynn New Member

    Hi Granmaw -
    I don't take Neurontin. I tried it and can't remember exactly why I couldn't take it. (too many to remember why things didn't work for me! LOL)

    Anyway, my Mom takes Neurontin for severe spinal stenosis and basically 'raw nerves'.

    She hasn't gained any weight at all, so it's not that everyone does. She has gotten sleepy from it, so her Dr. recommend that she take the majority of her dose before bed.

    She also tends to retain fluid (and all of us daughters got that from her too, yippee), and has been on a very low dose of a water pill for years. She hasn't had any problematic water retention.

    I do remember that I swelled up with the Neurontin. Everyone is SO different! If you're having a lot of fluid retention and dont have other health problems that would proclude it, maybe your Dr. could help you with a mild diuretic on days when it's really bad. I swelled up where it would hurt.

    If it's causing you lots of fatigue, maybe you could take most of your dose before bed? Is that a possibility?

    BTW- by 5 - 6 pm, I can't keep my eyes open at all. =)

  7. AllWXRider

    AllWXRider New Member

    An earlier ProHealth article described CFS sufferers as having low brain GABA levels. It has been long known that synthetic GABA doesn't cross the Blood-Brain-Barrier (BBB).

    Pharmacetical grade or natural GABA does and is assisted by using other amino acids like Theanine and Taurine. I got naturally fermented GABA from Its fermented using the same bacteria (probiotic) as found in a Korean sauce called "Kim-Chee".

    Kim-Chee fermentation involves burying cabbage and fish sauce in the earth. Sounds gross, but that's where penicillin was discovered. A bacteria that eats bacteria...what a wonderful concept!!!

    In theory, if you can get and maintain the Kim-chee probiotic in the colon, you can make your own GABA.

    Fish is the best natural source of GABA, fish really is brain food. The probiotic must be working on the fish sauce.

    As a minimum, Natural GABA should help your Neurotin work better and lower your dosage need.
    GABA is an inhibitory neurotransmitter. Helps with anxiety and OCD.
  8. JLH

    JLH New Member

    I take Neurontin 2 times a day. I take 300 mg in the morning and 600 mg at bedtime. I take my biggest dose at bedtime as it helps me sleep better. At one time, I thought I would switch over to Lyrica because it was newer and I thought it was better. Well, for me, it was not better. It kept me in a fog all day long, so I went back to Neurontin.

    The Neurontin really helps me. Like someone else said, it doesn't take the pain away, but it does help. I also have diabetic neuropathy, and it helps it. The basic way to know it helps, is to quit taking it!! I take so many pills daily that I thought I would cut some out and see if I could tell a difference, and Neurontin was one of them! Wow, could I see a difference! I could tell that it definitely helped me, so I started back on it and won't ever quit it again!!

    My daughter also has fibo and she is on it too. She tried Savella once and it made her really sick and she told me to never try it! So, I don't think I will.

    I also take Cymbalta for my fibro. I really helps me. The usual dose for fibro is 60 mg. daily; however, taking that much in the morning would make me too sleepy all day, so now my doctor prescribes the 30 mg capsules and I take one in the AM and one before bed. That works for me so much better, no more sleepiness during the day from it.

    For the fibro--well, really to help me sleep--I take a muscle relaxer called Zanaflex at bedtime. I take 6 mg of it a few hours before I go to bed. I also take Aleve or 600 mg of Ibuprofen (Advil) as needed.

    I also use ice packs (or bags of frozen peas!) at the base of my neck and between my shoulder blades for pain and a heating pad on my low back.

    For my sleep problems, I had a sleep study done, and found out that I have obstructive sleep apnea. I now sleep with a CPAP machine with oxygen fed into it--and the CPAP machine has a humidifer on it, which is so very necessary to keep your nose and throat from drying out! I could never sleep without this machine now!!! Oh, it's heaven after you get used to it!!

    Hope you begin to feel better.

  9. granmaw09

    granmaw09 Member

    Like I said in my previous note, I only so far take 300 mg. daily of Neurontin. What I am finding out now is after I take the two pills at night about 2 hrs. before going to bed, it makes me sleep until way later in the morning, later than I like to really. In my mind too is when I start taking another dose, will I be able to stay awake or will it make me sleep even longer a night time? The dr. said he can adjust the mg. in each pill when I get up to at least 500 mg. Cost wise that is. Remember I have a sensitive stomach is why the dr. started me out at a low dosage. With taking 3 pills daily, I have to refill alot sooner in a month. It's enough just with my husband's meds. monthly.
    After reading all the side effects of taking Lyrica & Cymbalta, I thought it wouldn't be worth the risk of it. A friend of mine took Cymbalta for awhile. She felt like she was in a state of mind of she didn't care what went on in her life. She stopped taking it. We all know everyone is different and has different bodies and different reactions to meds. I thought taking this Neurontin is suppose to help lessen the pain of fibro? So you take Cymbalta & Neurontin? If you're taking Cymbalta for fibro. why the Neurontin then? You say you take a muscle relaxer. If I took one of those at night, I'd be gone quickly, out nite, nite! I'm such a wuss I guess! I usually would only take 1/2 of a relaxer if needed. Thanks for replying to my note anyway. granmaw09
  10. JLH

    JLH New Member

    I may be lucky that I have taken Cymbalta and never did have any stomach problems with it.

    Yes, I take both Cymbalta and Neurontin. The Cymbalta is an anti-depressant that helps a bit on my depression (which isn't severe to begin with, just mild) and has a side effect of helping with my diabetic neuropathy). The Neurontin is also supposed to help my diabetic neuropathy, my sciatic nerve pain, as well as an added benefit of helping my fibro.

    I have a hard time sleeping at night due to my pain level from my fibro, lupus, diabetes, and a host of severe back problems; so taking the Zanaflex at night is supposed to help me sleep.

    I don't know if I could get by without one of the meds or not, but the combination of all three still don't help all of my problems. But, I do have a lot of problems besides the FM.

    Hope you find something that helps you!

  11. Didoe

    Didoe New Member

    big pink horse pills, was on it, gained 75 lbs thats been following me for almost a decade-my hair got thick and curly that's the only good thing, but thick curly hair on a fat bee-atch aint much to look at:)

    extreme fatigue, mental dullness

    Neurontin is one of the most powerful drugs capable of altering brain function-it is a frontline seizure medicine. gaba shmaba, docs dont know what they're doing w/this drug and alot of other meds they're experimenting with, we're a bunch of unwitting subjects in research studies who are not getting paid, so pharms and docs can try out these meds. Elavil!! can you imagine passing around this old monster now for FM saying in a teeny weeny dose its good for sleep? What happened, the pharmacuetical co. making Elavil complained because Prozac took over?

    I'm all for drugs, use a truckload for FM/RA but very picky and do not react well physically to much of what is currently fashionable. Every new RA med that comes out, people are running to be first in line to try them out. Then same people complain how awful or ineffective the new meds are, well you not get it that we are the first real-time study for FDA to see how the stuff REALLY works? That's why FDA 'approved' meds are constatnly being recalled, law firms are advertising constantly asking "Were you prescribed-----?, call use, we can help"

    gran-if you dont see results soon and feel like cwap, tell ur dr. to take neurontin himself and see how he feels on it.

  12. granmaw09

    granmaw09 Member

    So what meds. are you taking then for your Fibro? What's your current situation with your Fibro? I am just asking these different questions to get a grasp on what other people are going through too. Thanks, granmaw09
  13. Didoe

    Didoe New Member

    Hi granma
    first let me apologize for my neurontin rant, it works for some, but I remain concerned how meds are dispensed to us without full knowledge of either disease or drug efficacy.

    My doctor has me on
    Lyrica 3x daily and at bedtime (200mg)
    Vit D 10K weekly (deficiency can effect pain levels)
    ambien CR (I dont fall asleep and have a record of 5 days awake)
    clonazepam at night if needed (works w/ambien to keep me asleep thru REM phase which I was missing for years)
    I have stronger pain med which I am careful to use only when desperate from pain.

    Also have severe psoriatic arthritis, initially though to be RA, ydegenerative disc disease as well as IBS, so my medical issues are tissue/muscle and bone/joints. But the meds I use, thankfully are specific in treatment to each problem.

    I've also learned from this website how important it is to cut back if not do away with excess sugar and refined foods-its hard, but losing weight and the stress it causes on the body is important.

    so enuf from me lol, if hyou have the luxury of seeing a second opinion, it make make a big difference in how another dr. views FM and what meds are appropriate. That's what happened in my case-it took over 2 decades to find a dr. who listened and carefully went thru tests head to toe. Of course it turned out to be a woman rhuematologist-men still easily consider FM a 'mental' issue as its prevalent in women and often prescribe from that perspective-hence Elavil, neurontin, antidepressants...

    antidepressants are often necessary because of chronic pain and being medically dismissed-but they are not frontline for FM.

    I wish you the best of luck and strength, dont be afraid to argue, if you cant speak frankly to a dr. its because he's insecure and lazy.