Is there an alternative to Neurontin?

Discussion in 'Fibromyalgia Main Forum' started by karenanne, Oct 10, 2002.

  1. karenanne

    karenanne New Member

    I was taking Neurontin 300mg which was very effective for the symptoms and actually relieved some other symptoms also. After just 1 week I began getting some symptoms that were rather unpleasant. A sense of 'other-worldiness', of feeling not altogether 'with it' or 'right'. I tried for a while longer and these feelings got worse and rather scarey.

    I contacted the doctor who said to take 100mg. Did that. No use. All the symptoms are back and I feel dreadful. Still muzzy headed and slightly 'other' though less so.

    It looks like I will need to seek out some other meds for neuropathic pain. Klonipin doesn't touch the symptoms (sadly).

    Does anyone know of anything that is as, or nearly as, effective as Neurontin without that effect?

    If anyone did get that peculiar sensation with Neurontin, did it ever stop or did it stay?

    I would really appreciate your input,
    Bright Blessings,
    Karenanne
  2. karenanne

    karenanne New Member

    I was taking Neurontin 300mg which was very effective for the symptoms and actually relieved some other symptoms also. After just 1 week I began getting some symptoms that were rather unpleasant. A sense of 'other-worldiness', of feeling not altogether 'with it' or 'right'. I tried for a while longer and these feelings got worse and rather scarey.

    I contacted the doctor who said to take 100mg. Did that. No use. All the symptoms are back and I feel dreadful. Still muzzy headed and slightly 'other' though less so.

    It looks like I will need to seek out some other meds for neuropathic pain. Klonipin doesn't touch the symptoms (sadly).

    Does anyone know of anything that is as, or nearly as, effective as Neurontin without that effect?

    If anyone did get that peculiar sensation with Neurontin, did it ever stop or did it stay?

    I would really appreciate your input,
    Bright Blessings,
    Karenanne
  3. Cactuslil

    Cactuslil New Member

    Medications are wonderful revelations from the higher power but we must use them to their best advantage!

    Neurotin is an antiseizure agent and sometimes used as a mood stabilizer. I also noted briefly in one abstract that there was some experimentation with it off-label as a muscular pain reliever in conjunction with meds specifically FDA approved for muscular pain.

    Karenanne: I have not heard directly from anyone having side-effects as you describe but hey, how many people run around with Tardive's Dystonia as a side effect, though rare, from taking SSRI's for years and years!! Still off those nasties and still no dystonia...and I had to dig this up by myself!!

    There are some really good abstracts on the Web about neurotin. I started three years ago on 1200mg. with the docs intent to increase that amount; however, lost any ins. coverage and never was able to return to that doc. I am now on disability (SSI) but must use a GP as a primary and I hope to address this and other matters manana. Lil'
  4. karenanne

    karenanne New Member

    Nice to hear from you...how's things?

    I've spent a lot of time ferreting through abstracts on the web and a lot of them now do refer to the fact that neuropathic pain, peripheral neuropathies, nerve pains, severe pain and similar do respond very positively to Neurontin.

    They do now mention the symptoms I had, or something pretty close to it, on the RX list but dont say if it is one of the some that will eventually wear off.

    The symptoms seemed to be getting progressively worse but it's hard to tell without doing it all again. I'm currently taking 100mg, and I might try 200mg...maybe pulse the dose a bit.

    I dont especially want to stop it but I dont want to feel so 'removed' from myself and my ability to concetrate. it felt like mental and emotional numbness but I became, conversely, rather reactive!

    It also had wonderful effects on my IBS, Irritable bladder and I slept through for 5 hours which is the first time in maybe 8 years....that has to be worth persevering with. But the side symptoms I had were pretty unpleasant.

    I will never ever take SSRI's again. They did damage to me which cant be undone or, to my knowledge, remedied. Pity, because for anxiety they are pretty good.

    Back to the Neurontin. My docs are unhappy about it because it is expensive and every time I mention it, they mention the cost. demoralising.

    Thanks for your input Cactus.
    Take care.
    Karenanne
  5. chknmama

    chknmama New Member

    I have been taking Neurontin for about 4 months now.My doc started with 900mgs a day and gradually increased it to 3600 a day. It is quit a bit but it does help with the neuropathy.But lately I have had the symptoms coming back. The pain is getting worse and I don't know what to do about it.I definetly don't want to increase it again as my quality of life isn't what it used to be since Iv'e been on it. I was warned that this may happen using Neurontin. And like you I don't know any other alternative. I hope there is a answer to this for your sake and mine.
    Good luck to you
    Jeri
  6. karenanne

    karenanne New Member

    jeri, I'm sorry to learn that your symptoms have begun to reappear. I was told that 1800mg is the expected dose to be worked up to for PN or neuropathic pain. Would you consider an increase in dosage?

    I wasn't aware that Neurontin could become less effective over time. That's interesting. I'm very interested to know in what ways your quality of life has been reduced, if you don't mind sharing that. I perfectly understand if you don't.

    Mel, what is GABA? Is it a drug? I have never heard of it!

    I've just been scouring through my book which mentions Peripheral Neuropathy and the some of the various treatments and there are some others though in very different categories to Neurontin. There is one other anti-seizure med. mentioned though.

    Peripheral Neuropathy and Neuropathic Pain appear to be different things though I am uncertain of the where and the why and the how of it. Also, how and in what way it has anything to do with CFS and FM I really do not understand.

    Seems that there is more not known than ever is.....aint that just the way?
    Karenanne
  7. karenanne

    karenanne New Member

    Thanks, Mel.
    I'll go and research this one.
    All the very best to you,
    Karenanne
  8. lindasue

    lindasue New Member

    my doc put me on neurontin a few weeks ago and i COULD not take the stuff......it made me feel like i was from another planet.....and i had these electrical currents feeling going throughout my body many times a day. SOOOOO, someone here suggested Klonopin and my doc started me on a .5mg dose twice daily....It has helped along with the ultram (100mg four times a day). The Klonopin i usually break one in half and take .2mg twice during the day and that helps take some of the edge off the pain.....of course along with Ultram. The .5mg at bedtime helps me sleep for more than just 2 or 3 hours.
    anyway, that's what is working for me.....for now. i'm sure i'll probably need more as time goes on. but for now...i'm somewhat more comfortable and able to cope with this a little better.
    Sure hope this helps,
    Love,
    Linda
  9. karenanne

    karenanne New Member

    I have klonipin at night, and I have tried it during the day but while it helps other things it doesn't touch the neuropathic pain. I'm reluctant to take too much during the day time since they make me drowsy at the best of time.

    I could try again.

    Do you find they make you drowsy, or does that wear off after a while?

    Are you taking them for neuropathic pain?

    Food for further thought, definitely. I have only ever taken a full dose at night and the 1/4 tablet as recommended by Mikie for over-sensitivity, and that really does help that.

    Hmmmm!
    Thankyou.
    Karenanne