Neurontin - siezure medication/off label use

Discussion in 'Fibromyalgia Main Forum' started by twjen, Dec 17, 2002.

  1. twjen

    twjen New Member

    It is interesting to see that several people are using neurontin for sleep. I have a family member who has been taking it for several months for the off label use of treating manic depression/bipolar disorder. Since being on this med. my family members episodes are extremely milder,
    relations and rational are much better, and does sleep somewhat better when in a manic state, and not as low low's.
    I am surprised to see it being used off label to treat fms
    though. I am interested to know how anyone taking it for fms is doing on it and in what ways it has helped you.
    Thanks alot, Jen

  2. BethM

    BethM New Member

    can be used for neuromuscular and neurogenic pain. I tried it, but it didn't help me at all. For pain, it is used in much lower doses than for seizure control. We're all unique in our med reactions. Many meds are used 'off label' for interesting purposes.

    Beth.
  3. Bratnut

    Bratnut New Member

    Hi there,

    I started taking it about 1 month ago. Very low dose so far. I find it very helpful for sleep. Not pain yet though my doc is hopeful. What I can't abide is the extremely dry mouth that I get. I won't take it in the morning because of this, but the sleep...yum!! I do worry about long term effects though and increased dosage amount as my doctor wants to do. I'm only taking 200mg at night right now.

    Patricia
  4. Mikie

    Mikie Moderator

    We are not using it for off-label use. CFS and FMS can cause a slight seizure state in the brain and that is what keeps us from sleeping. It also is the cause of RLS, anxiety, and sensory overload. The Neuronton (or Klonopin, another antiseizure med) quiets the overfiring of the neurons in the brain and allows us to sleep. Read Dr. Cheney's article on Klonopin in our library. It explains it very well.

    Love, Mikie
  5. twjen

    twjen New Member

    neurontin I am told was invented for people with epilepsy and all other uses are off label. This doesnt mean they wont work well for off label uses, and many meds that come out are often used for off label uses and eventually become named for these uses also when they are effective. The meds prescribed for me arent helping much at all and I was curious how this med works for others and mabey it would be one I would consider trying if my Doc agree's. It seems to have little side effects if any for most and my family member. I am not trying to be "mean" by calling it off label use. Its just a fact that if you dont have epilepsy, and are prescribed it, it is an off label use. THanks,
    Jen
  6. epicurean

    epicurean New Member

    I have FM,have been on Neurontin for over three years.I ran out this past week.I guess I was having a foggy week,and forgot to send it in-get RX's by mail.
    I can not tell you how awfull I felt-for three days I felt just like I did before I was diag.with fibro!!
    Had no idea it was making such a difference-will never be without it again-could not function at all without it.
    Good-luck!!
  7. Mikie

    Mikie Moderator

    A drug by any other name. Epilepsy is a seizure disorder and Neurontin and Klonopin are both antiseizure medications, so to me, it is not an off-label use to use them to treat our seizure symptoms. Perhaps, technically, to a pharmacist, if a medication is developed to treat a specific disorder, then using it to treat the same symptom in another disorder is an off-label use.

    In my mind, off-label use is when a medication is used to treat a symptom for which the drug was not developed when it was found that the medication also improved that symptom. It really doesn't matter, but many people do not understand the slight seizure state produced in people with FMS/CFS and do not understand that's why Neurontin and Klonopin work for us.

    Love, Mikie
  8. kuntryhart

    kuntryhart New Member

    for almost a month. It is only 100 mg.and my DR precribed 1 capsule 2 times a day. I tried taking it in the morning once, and had to take a nap to "sleep it off", so have only taken it of the evening when I get home from work. I try to take it before 7. When I take it, I rest quite a bit better.I've been forgetting to take it, and now I'm wondering if that's why I feel so terribly tired. I reeeally didn't want to come to work today. I felt so bad this morning, I just didn't feel like getting up, much less going to work. But, here I am. I have felt so bad lately, and have had so much pain. It started about 3 months ago in my calf and the muscles in the back of my thigh. Now it's into the soft part of the cheeks of my "sitter", and across the top of my "sitter", and sometimes it's just all over my cheeks back there. I am sick of hurting so much! I've hired someone to come in and clean my house every two weeks. I just can't work outside the home and keep the house up, too. Vacuming, mopping floors, and such make me sick for days afterward. I work as a secretary, but sometimes I don't even feel like doing that! I'm tired of being a whiny old woman!! kuntryhart
    [This Message was Edited on 12/18/2002]
  9. PAT

    PAT New Member

    I haven't been here in a while. I have been seeing a neuro doc for some 'spots' that showed up on an MRI of my brain. After numerous tests, she concluded that there is vascular damage due to migraines. I have them severely, though not really often.
    I have arthritis and bone spurs in my spine that cause a lot of pain and probably trigger the migraines.
    ANYWAY, she prescribed Neurotonin, and I was surprised. I knew it to be a seizure med, and still have not taken any yet.She said it should prevent the migraines, and help with pain due to spinal issues. I had seen mention of it on this board before, and wanted to find out what some of you took it for.
    Do you have any other side effects than the mention of dry mouth, and being tired?
    Here is my fear; I have 5 kids.I cannot go through the day in a haze. I take 100mg of Ultram at least twice a day for pain. Is this going to make me a zombie?
    I would LOVE to sleep at night!! I guess I will look around for some more posts on it, and go ahead and try it, if I don't read any horror stories!
    Thanks, Patti G
  10. twjen

    twjen New Member

    My family member that takes it takes 400 mg's a day and is not a zombie. Keep in mind he takes it for bipolar/manic depression. It is working well for him and has little if any side effects at all. I have been taking diazepam for about 8 years now, it is addictive, but ive never increased my dose. Originally starting taking it for panic attacks.
    Then Doc said to continue it because of a couple years of myclonic seizures. I would like to try something else though for fms. I was on this diazepam when I developed the seizure problem and fms, but I dont think it caused it.
    Anyway, sounds like its worth a try and if not a huge dose. My family member that takes 400mgs a day, his doc said that it is a lower dose than would be given to control seizures, so sounds like your pretty safe. Everyone is different and drugs effect them differently.
    I myself am very sensitive to meds, and some have opposite effect on me as desired, and many allergies to drugs also.
    Start out slow and let us know how it works for you. I am trying trazodone right now and it makes me feel a little funny and queezy, but going to keep trying it for awhile and see how I feel. Have a Merry Christmas, Jen
    [This Message was Edited on 12/18/2002]
  11. Kika

    Kika New Member

    I was switched to neurontin about 2 months ago for bi-polar. Since I have had a couple of seizures in the past (from way too much wellbutrin), the docs are hoping it will be a good choice for me. So far I have not seen that it helps me sleep any better, nor does it help any of the chronic pain that I'm in. I have degeneration in my neck/spine called cervical spondylosis. But the neurontin does seem to stabilize my mood swings beter than anything else I've taken. I take 100 mg, 3 times a day.

    Good luck, Kika
  12. Kelly12

    Kelly12 New Member

    Hello everyone, I have been lurking for awhile and think this is a really good place for FM patients. Thank you all so much for contributing.

    I take 500mg 3 x day. It was ordered as a mood stabilizer and is supposed to help my Fibro Pain. I still have plenty of pain brought on by activity. So I really don't know if it is helping or not. I would like to go off it because of the severe dry mouth it causes. The dry mouth causes tooth decay. My mouth is so dry I choke when I am trying to nap. I understand it is hard to go off of and has to be done very slowly. I think it is contributing to my fog.

    So, as you can see, I really don't like it. However, I've read where many people have great success from it. Everyone reacts differently to meds. For me, the dry mouth is enough to cause me to plan on going off it.

    Kelly
  13. Mikie

    Mikie Moderator

    Klonopin works better than Neurontin for many people and we do not seem to build the tolerance as with the Neurontin.

    I do not suffer dry mouth or tiredness. On the contrary, I have much more energy and less pain now because I get good quality sleep.

    Love, Mikie