Neurontin - anybody take it?

Discussion in 'Fibromyalgia Main Forum' started by Mountainlover, Jan 21, 2006.

  1. Mountainlover

    Mountainlover New Member

    I hsve had a really bad FM flareup and the pain is so bad. I talked with a friend who was bed ridden, almost destroyed her life when she had a huge flareup of FM. Her doctor put her on Neurontin and she says she almost feels normal again, it had given back her life. I am going to ask my Rheumy about this drug. She says that you cannot Overdose on it. She takes 600 mg three times a day.

    She also told me that I need to stay off Gluton, sugar, caffeine and wheat products.

    My sister tells me that she heard of a new drug on the market that could help FM - called Lyrica. I can't find any info on it.

    I am moving back to the USA around the first of March for at least a year. I have to find a Rheumy and I want to ask about these things.

  2. Cromwell

    Cromwell New Member

    Personally I had a very bad side effect like having a stroke from low dose of Neurontin. Others here really like it. Some found it made no difference. The only advice I can give you is trial and error method at your own choice of weighing up risk v benefit. Lyrica has not been on the market long enough to see what the side effects really are, but maybe people on the board here witll differ from my opinion and give you better feedback. Good luck. Re Caffeine: I went right off caffeine(never had much, just light tea) and I just said this morning that I was going to try and have a little in the mornings just because I have been so fatigued since I gave it up completely. Caffeine, is after all, a drug, used to boost energy. Feel well.
  3. momwinterwhite

    momwinterwhite New Member

    hello mountianlover me to.any way I have been on neutotian
    for several months now also on cymbalta and elavil.
    sometimes skelaxin I was in bad shape when my doctor
    decided to try the neurotion and it helped so much even
    the guys I work with could not believe it they said
    I was like a diffrent person.I still have alot of problems
    but it gave me some degree of relief. so I hope it will help
    you also.momwinterwhite, gg
  4. Rosiebud

    Rosiebud New Member

    didnt agree with me ML but it's different for everyone.

    Many people have had good results with them.

  5. Smiffy

    Smiffy Member

    This gave me really bad visual migraines, but lots of people have found it very helpful.
  6. shan1078

    shan1078 New Member

    Hi, I know a few things about Neurontin, I took it for quite some time. I know that it has, in the past two years, been given to folks who suffer chronic pain, but is mainly used as a drug for people with seizures. I took about 1200mg a day. It did help dull the pain. My main side effect was that it made me feel very light headed. Unable to concentrate. I used to people it made me "stupid". I don't mean that ulgy, I just laughed alot. It's worth trying, but I think 1800mg's a day is a very high dose. I'm sure it effects are different on everybody, mine weren't too bad. Good luck!!
  7. guardianangel54166

    guardianangel54166 New Member

    I have been on Neurontin for about a year. It took away the feeling that my hands were in scalding water, also the cat can now walk across me without it feelig like she weighs 2 tons. Good side effect is that my grandchildren used to torture me because I was sooooo ticklish. Not anymore, poor babies:)
    It was such a relief not to feel the burning most of the time, however the traveling deep pain is still a problem and I am scheduled with the doctor next week to try some med adjustments. I am also on amytriptyline but still do not sleep well despite live style adjustments, so we'll see.
  8. Mountainlover

    Mountainlover New Member

    I am feeling that the downside of Neurontin is too dangerous for me to consider taking it right now. I think that I will wait on that and not ask the doctor to put me on it. There are plenty of other meds that I could take instead.

    Thanks 2painful4words, for appreciating my profile and my photo of my BIG KITTY !! Thanks for the WELCOME to the boards and sharing about how I can search for info on this site. In just two days I have learned so much about FM that I did not know. This message board has been a blessing so guickly, that I have been amazed.

    It is so great that others will share on these boards so that the rest of us won't suffer needlessly; that we will be aware of the effects certains meds etc can have on our bodies.

    I hope that I can be an encouragement and helpful to others on the board.

    Thanks so much to all of you for your help and encouragement!! I have FM, Ankylosing Spondylitis and Osteo Arthritis in my knee. I see others using the electric carts at Walmart and using canes to walk and never thought this would happen to me. It has made me notice others that are suffering quietly in public and we walk by them, never knowing the agonies of their lives. I always was considerate of others, but NOW I am so much more considerate and I take the time to smile a BIG one when I see others who are disabled.

    Have a great day everybody and take good care of yourselves!

  9. brie

    brie New Member

    I was put on neurontin 3 years ago for extreme muscle spasms.My Dr. started me on a small dose and gradually increased it to 900 mgs aday. I have no side effects and it has controlled muscle spasms that were so painful you just wanted to die if they continued. So I imagine it is as with every drug....what can your body tolerate .It is a wonderful drug if you can take it . Good luck.
  10. JLH

    JLH New Member

    Yes, I have taken it for a couple years. I love it! It has really made a big difference in my pain level. I don't know about the statement that "you can't overdose on it" .... I would question that!

    I also take Cymbalta which has helped tremendously.

    You'll have to ask your rheumy about both of them.

    Wow! I read your bio .... what an interesting life! An your pic!! I am afraid of my cat biting me .... but if I had YOUR cat, I definitley would be afraid!!!! Love the pic!!!

  11. DFL

    DFL New Member

    I've been on it for years, for burning in my arms and shoulders, and being so sore when I was verly touched, I've tryed going off it but get back in the same shape. so I love it.
  12. blkkat

    blkkat New Member

    i too didn't want to take it but tried it and you'll have to pry it from my dead body's hand- i can only take a very low dose a day 400mgs, 100 morn, 200 mgs late afternoon and 100 mg at night. because 500mgs i'm toooo loopy!!!!!it makes the non stop stabbing, tingling, numbness ,ice cold pain feeling alot more bearable!!! good luck this DD bites!!!!! HUGS!! MONA
  13. jaltair

    jaltair New Member

    With FMS, sleep cycles are disturbed. Something about the pineal gland and melatonin ... our days are our nights, etc. Anyway, after starting the Neurontin, I take 1200 mg at night, I am sleeping through the night and getting rest. It makes me functional during the day. If I wasn't taking it at night, I doubt that I'd be able to work.

    Now, if I could find something to help with the mental fog I get, I would be even more functional at work. The pain is manageable, and I think that it's due to getting the better sleep from the Neurontin.

    Healthier eating by staying away from the processed type of foods and eating fresh foods and uncooked veggies, etc. is better for all of us. Many of us can't tolerate additives in our food products.
  14. Bren5

    Bren5 New Member

    I have MS and Fibro and started on Neurontin back the late 90's for stabbing pain and tingling due to MS. It's been the only thing that keeps nerve pain under control for me. I only need to take 300 mg each morning & night, I've not had any side effects, probably due to the low dose.

    I'm also on Lexapro, Nexium, Lorazepam and a multi vitamin. I've tried the MS injectable drugs, had to stop each of them due to side effects.
  15. tngirl

    tngirl New Member

    My pain had increased dramatically because I had to wean off Cymbalta and stopped taking my arthritis meds at the same time. I was ready to try just about anything, so I started on Lyrica about 7 wks ago. I started out at 50 mg. 3 times daily and slowly built up over a 4 week period to 200 mg. 3 times a day.

    My pain has decreased. The only side effect is I noticed food tastes good again! My appetite has increased. I have not gained but I have really been watching it. My weight has stabilized. Last year I lost 75 pounds, I don't want to gain it back. I need to lose more.

    But not I can function more normally.
  16. athome

    athome New Member

    Hi Mntnlover!
    Loved yr picture; we could be twins! Let me know when and where you come to the States.

    Have taken Neurontin for YEARS, but2 summers ago an extremely bad case of shingles put me to bed for four months and now I have bad trigeminal nerve pain. Docs upped my Neurontin to 3600 a day. Recenty I decreased this on my own but after reading how it as helped others with their FM pain, I am remmbering that it DID have that effect for me in handling my FM pain with no noticeable side effects. I am now going back on a lower daily dose my pain doc has prescribed.

    I have now been on Lyrica for a week and it has had a great effect of "damping down"the horrible and constant trigeminal nerve pain.I am taking 75mg am and 150mg pm. I am to gradually go up to 150mg am and pm. Then we will see. Pain doc thinks she may have to go much higher, but also thinks we can reduce the Neurontin dose which is now supposed to be 3200/day. I have also been on a 75mcg Duragesic patch every 3 days.

    So far I only have moderately painful stinging and burning on the nervesite (4 out of 10 intensity) and breakthru pain.Lyrica first made me sleepy but no longer. Wish that would continue as the 18 months of horrible pain have left me with lousy sleep pattern.

    Am concerned about what I've read on this board about taking Lyrica indefinitely, so am going to look into a Chinese doc mentioned on another site who has had good success at curing trigeminal nerve pain.

    Good luck to you! Nana[This Message was Edited on 01/27/2006]
    [This Message was Edited on 01/27/2006]
  17. Mountainlover

    Mountainlover New Member

    Wow, thanks everybody !! I have read so many positive responses about Neurontin, that I think I will mention it to my Rheumy. All, I know is that the muscle spasms are getting worse and I can barely walk. I didn't have any muscle spasms until about a month ago.

    Glad that you like my BIG KITTY!! These wild animals are what I love about South Africa!! I was bent over patting a white lion one time and two bengal tigers that were in the same area were playing with each other behind me. One of them decided I was a toy when I turned my back on them. The one lept on my back and almost knocked me down so the white lion I was patting decided I was a toy also, and wrap its mouth around my ankle at the same time. I was able to get out of the mess because they were only playing, but it sure scared me !!

  18. roseylisa

    roseylisa New Member

    I take 900 mg of neurontin and seroquel at nite it helps me sleep. I also take mirapex for restless legs syndrome, cymbalta for depression, atenol for blood pressure and taycardia, I take vicodin when the pain gets really bad.
    I cannot sleep with out the neurontin, and the better sleep you get the better you will feel. I tried taking it during the day and I couldnt stay awake!
  19. PainSux

    PainSux New Member

    I saw my workmens comp doc today & he put me on Neurontin starting tonight @ 300mgs for 5-7 days & then increase it to another dose @ 4-5PM & in another 7-14 days, depending on how I feel another dose around noon. My total daily dose being 900 mg.

    I'm hesitant to take it. I have to take it. I had carpal tunnel release on my right hand in the fall & the doc told me today that it apparently was not successful & my other hand which is worse won't be considered for surgery since the outcome of this surgery was unacceptable. I'm very frightened for my job. I don't know what I'm going to do. I had the doc do my dominant hand first as the symptoms weren't as bad & I thought it would rehab fast & I could get the second, left hand, done fairly quickly & be back to work by now. Not looking that way. I have no idea when I'll be back to work. I'm really concerned.

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