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Neurontin

Discussion in 'General Treatment' started by bakercape, Sep 17, 2010.

  1. bakercape

    bakercape Senior Member

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    My doctor wants me to try Neurontin.

    Does anybody know anything about this Med in regards to CFS? How it could help?

    HAs anyone here tried it? If you don't mind could you share your experience with it?

    Thank YOU.
     
  2. LaurelW

    LaurelW Senior Member

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    I've tried it during periods of intense pain. It seems to help, and according to the doctors I've talked to, is pretty well tolerated. You can easily titrate your dose to what is optimum for you.
     
  3. bakercape

    bakercape Senior Member

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    the price

    was right too Laurel. I only had a 7 dollar co-pay. I guess it must be a vey old med. I'm noticing a little less muscle pain today. Maybe it's the med. Could be placebo who knows.
    thanks
     
  4. camas

    camas Senior Member

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    I take 100mg at night to help me fall asleep. My pain's not very bad so this is enough to relax my legs and make me sleepy. I sometimes take a 100mg during the day too if I'm having more pain than usual. These are tiny doses, but I'm a lightweight.

    In comparison my boyfriend takes 3,000mg a day for neuropathy in his feet without any apparent side effects. Shows you just how well tolerated the drug is. Hope it helps you!
     
  5. Nielk

    Nielk

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    I tried it a few years back and it didn't do much for me but, I met a cfs patient last time I went to my doctor
    and he was singing the praises of Neurontin (Gabapentin).
    He claimed that for five years, he couldn't get out of bed and Neurontin saved him. He now feels almost 100% and is very active, travels all over
    the world. He is apparently a writer and he resumed his profession full force.
    I was very impressed with his story.
    I spoke to the nurse about it and she said that not everyone has such great results (obviously) but some patients are helped
    to different degrees.

    It's definitely worth trying out for a while.
    It does get titrated to higher levels to see how much you can tolerate and what level shows results.

    Good luck.

    Nielk
     
  6. bakercape

    bakercape Senior Member

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    Interesting

    All the patient reports I could find on the internet had a wide range of reported responses. From uncomfortableside effectsand no positive response to it was life changing.

    Well I'll just hope for the best. Thanks you guys and gals
     
  7. Mya Symons

    Mya Symons Mya Symons

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    I was on Neurotin. It was a horrible experience for me. Yes, it did help for nerve pain; however, it made me angry and the brain fog was 100 times worse. As I understand, nerve medication slows down the firing in your brain, so any type of nerve medicine will probably slow down the thinking process. I have tried 3 different nerve medications. I have hated them all because of what they do to the brain; and I refuse to take any of them or try any new nerve medications. Everyone is different though. You might not experience those side effects.
     
  8. bakercape

    bakercape Senior Member

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    sorry

    it did not help you Mya. I read some reviews like yours on a cfs treatment site. I don't understand why some seem helped and others don't. My doctor was honest at least and said it only helps 10-20 percent of the time but when it does he said it can be really helpful.

    I'm staring on a small dose. 100mg twice a day. I actually just poured half the capsule in some yogurt so I guess I'm really starting on 50mg twice a day. I'm going to try to keep posting about it on here to let people know how my trial with it goes. I have pretty classic CCC CFS.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    neurontin has helped me with lower leg pains i get, but didnt help with lower back for which lyrica helps. I use 600mg of neurontin and have never had any side effects at all, no sedation but does seem to improve sedation when taken with other sleep meds. I usually only take it at night but have taken it through the day with no side effects at all. I have found it to be a good drug.

    cheers!!!
     
  10. bakercape

    bakercape Senior Member

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    do

    you have a CCC case of CFS heapsreal if you don't mind me asking. Did you have a sudden viral onset? I'm trying to gather a little data on people with a similiar case of CFS as myself in regard to trying the Nuerontin.
    Thank you:Retro smile:
     
  11. taniaaust1

    taniaaust1

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    Neurontin I dont know if it still is, but used to be used by many of the famous CFS/ME specialists (treating CC CFS).

    Not all drugs which slow down the central nervous system are sedatives.
     
  12. Sing

    Sing Senior Member

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    Some years on Gabapentin

    Gapapentin/Neurotin has been very useful to me for pain and sleep. I started at 300 mg before bed, I think, then have gradually needed to increase the dose for the same effect, and now too my first pill is after lunch, then around supper, then at bedtime. It has made all the aching manageable. I was already doing loads of stretching every day to the point where it seemed as though my life was about stretching and pain. So this drug has made a big difference to me. It enabled me to sleep much better at night because of pain relief.

    The body becomes tolerant so the dose needs to go up. I believe my neurologist said 4,800 mg was the maximum allowable daily dose, so there is a long way to go. This drug isn't addicting but there is tolerance--a difference. You don't crave it or go through withdrawal symptoms in other words. It doesn't need to go through the liver to be broken down either but is kicked out by the kidneys--so isn't a burden on the liver (like alcohol or acetaminophin, etc.)

    Find a dose to start with which is helpful for sleep and pain but doesn't cause morning drowsiness, etc--that means the dose is too high for you.

    My views + experience,

    Sing
     
  13. Mya Symons

    Mya Symons Mya Symons

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    This is from http://neurontinlawsuit.lawinfo.com/frequently-asked-neurontin-questions.html
    Apparently Pfizer is having or had a lawsuit against them for not listing the following side effects of Neurontin:
    Other Neurontin side effects listed by these sources are more serious, such as viral infections, convulsions, memory loss, and vomiting/diarrhea. The most severe of the potential Neurontin side effects is a suicidal tendency. It has also been indicated that children are more susceptible to Neurontin side effects than adults, and that children taking are far more likely to experience the behavioral Neurontin side effects such as mood swings, hyperactivity, aggression and lack of concentration.

    Memory loss and difficulty concentrating while taking Neurontin was a big problem for me (added on to the CFS and FMS memory loss and difficulty concentrating). Who knows, however, if this lawsuit is legit. Maybe some lawyers just saw an opportunity to make money.

    This is from epilepsy.com: We don't completely understand how Neurontin works in the brain to stop seizures. It probably causes brain cells to make more of a chemical (called GABA) that stops brain cells from firing.

    It was such a bad experience for me that I thought you should know about the side effects not listed in case you experience them. I also know others who have experienced difficulty concentrating and severe memory loss on neurontin. I am suprised that Pfizer did not list these as side effects. However, I do understand that when you find something that finally eases the pain or fatigue, sometimes the side effects don't really matter.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi bakercape,
    yes i had a viral onset, actually 2 viruses at once, leg pains started with cfs, legs pains actually use to be a predictor of when i was going to crash, but now it just happens whenever.

    cheers!!!
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi tania, for some people sedative type meds in low dose help with energy and brain fog, probably for the cfsers who are tired but wired. I think sometimes certain inflammatory cytokines stimulate the brain in a bad way and these meds help slow down the brains over excitability from these cytokines.
     
  16. taniaaust1

    taniaaust1

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    Probably a legit lawsuit... Pfizer has got quite a reputation and has been involved in quite a few law suits.. Usually paying people to kept quiet.
     
  17. taniaaust1

    taniaaust1

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    Yeah i know. I myself cant take sedating drugs.. for me to be able to take enough for them to actually work in some way, I then get an over sedating effect from them as well even at less then minimum dosage.
     
  18. Kalebleo

    Kalebleo

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    I took neurontin for 3 days. It gave me a rapid heart beat and I felt like I couldn't breathe. I quit taking it. So, my answer would be yes.
     
  19. Sing

    Sing Senior Member

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    I haven't had any of those side effects, so for me it has balanced out whatever my brain is doing--I took it after reading that it is one of the most highly recommended drugs for pain, and also sleep, for those with CFS.
     
  20. *GG*

    *GG* Senior Member

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    I have tried both up to the highest doses with no good effects. What I have found most helpful for my pain is the Pain Clinic, and perhaps since my Major Flare up with Pain, high Dose Vitamin D, a Quality Fish Oil, OTC pain killers pretty much 24/7. And much more rest and doing less in my life!

    GG
     

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