Started taking neurotonin...

Discussion in 'Fibromyalgia Main Forum' started by Mar19, Jun 25, 2003.

  1. Mar19

    Mar19 New Member

    ...and it seems promising. Today is the first time I'm taking it in the daytime. I've been on it for a week, 400mg at night, and starting today another 400 mg in the daytime. Since starting it, I have had a few really good night's of sleep, which is a blessing in itself, and my pain seems like it MAY be abating somewhat (can't tell for sure yet, does that sound dumb?). Today I feel a bit "spacey", but I'm not sure it that's from the Neurotonin or because I didn't sleep well last night, and overdid yesterday. I'd appreciate anyone sharing their experience with this med. Does the daytime "spacey-ness" go away after awhile? After being in constant pain for years, I'd really hate to give up on a promising therapy.

    How long did it take your body to adjust, and what dosage are you on? I realize everyone is different, I'm just trying to get a general idea of what's in store. I'm hoping that the future will bring diminished pain, wouldn't that be nice.......
    Mar
  2. judywhit

    judywhit New Member

    to try this drug twice. both times I was too loopy. Was on it for 2 wks about a month ago and I started to get this nasty backache. It was right in the middle of the back and it felt like someone was waking me with a board. very odd indeed. needless to say I stopped. do a search on this drug and you will find lots of good info.
  3. RedB

    RedB New Member

    thanks to the info on this board, and a wonderful Neurologist.

    I started out with a 300 mg dose per day, and after about the 5th week, I started spacing out.

    I am now only taking a low dose of 100 mgs twice a day. It only does small things -- cuts the neurological pain somewhat, eases the leg tightness, and helps the pain in my back left shoulderblade. That's enough for me! :eek:)

    Kathy
  4. Annette2

    Annette2 New Member

    I've been taking Neurontin for a few months. I like it because I have Restless Leg Syndrome and that helps it not occur every night. It also helps me sleep. If I take it too late at night I do wake up a bit spacy, but I don't mind because the benefits outweight everything else. I only take 600 mg. at night. I don't take it during the day. It has also helped decrease the pain.

    Annette2
  5. toots2

    toots2 New Member

    Couldn't take the neurontin as it made me feel spacy too. Also did not do a thing for my pain. Because it also made me so tired during the day and did not eleviate one bit of my pain, I quit taking it. Feeling all the better for it, I would say. I'm tired enough without taking something that makes me sleepy all day. Toots
  6. bakron

    bakron New Member

    I've been taking Neurontin for a few months. I started with 2 100mg caps at night, increased to 3 100mg caps after about 3 weeks, then up to 4 100mgs (total 400 mg) each night. I am taking it only at night along with my Celexa and Ultracet. My routine, I take Celexa at about 8PM, Ultracet at the same time, then the Neurontin at about 10 PM. I am sleeping very well these days, and am not drowsy during the day at all.

    My mother was taking the Neurontin during the day and stopped using it because of the drowsy/spacey feeling.

    Talk with your MD about using it only at night to prevent the spacey feeling. If I can get a good night sleep, the Ultracet once during the day seems to do the job with any pain that I have.
  7. Wolverine

    Wolverine Member

    Well, because im MCS and react to many meds, i opened the cap and put smaller doses in gel caps. I got much better sleep for once but the effect dragged onto the next day and i could barely stay vertical most of the day after taking it the night before - quite spaced all day and a bit out of it - theres no way i could take it in the daytime.

    Chris
  8. Mikie

    Mikie Moderator

    From what I have read here, Neurontin is much more tricky to get the dose adjusted than with the Klonopin. You need to start out slowly and take it only at night or at least take the larger dose at night. If you are loopy during the day, you are taking too much and need to cut back. As your body learns to tolerate the drug, the side effects should go away and then the drug can be gradually increased.

    With both Neurontin and Klonopin, one should take the lowest dose which gets the job done; i.e., good sleep awakening refreshed, diminished anxiety, and diminished sensory overload. Also diminished RLS if you have that.

    Neither Neurontin nor Klonopin is a pain medication. Research suggests that both may interfere with pain signals in the brain, thus helping with pain relief. Also, getting better quality sleep will help with pain. If one needs pain meds, however, one should not rely on these antiseizure medications alone.

    Both these medications are good, but one must be willing to be patient and to tweak the dose.

    Love, Mikie
  9. Mar19

    Mar19 New Member

    I really appreciate all your comments. Since starting the Neurotonin I have been sleeping pretty good. And that's a small miracle in itself. Yesterday was my first daytime dose, the spacey-ness or light-headedness lasted only a few hours, and then a few hours later the pain seemed to come back full force. I think I'll stick with it for awhile and see what happens. I haven't been able to work for years because of the pain -- also had two back surgeries, broken pelvis, and rotator cuff surgery during that time. I stay around the house most of the time, so I can put up with feeling a bit lightheaded or whatever if it will abate in time. I find I don't need to take nearly as many pain meds with the neurotonin, so that's a plus as well.
    Thanks again!
    Love and blessings
    Mar
    [This Message was Edited on 06/26/2003]
  10. jkd7058

    jkd7058 New Member

    I had been taking it for nerve damage I received during surgery. I was then weaning myself off when I was diagnosised with FMS. My doctor did not take me off but increased my dosage. I now take 1600mg before bed, 800mg in the morning and another 800mg at mid-day. She believed that I should be active in deciding how much I should be taking. Only I know how I really feel. I was feeling so good I decided to try to lower the dosage - bad idea. I do need the 3200mg a day. When I started back on the original dose I did experience the "light headed" feeling but it went away in just a few days.

    We are all differnt. We can lean what others have done, but it is what works for us that is important.
  11. franners

    franners New Member

    I love my neurontin too, especially now that I get more. Was just taking 300mg at night with celebrex and ultracet and zanaflex but would be up in a couple of hours for good in pain, Now I have enough That I can titrate my doses as it fits my needs. Doc wrote me a script that says I can take up to 16 caps of 400mg a day and the pharmasist had bricks in her shorts. As long as it stops the pain, I don't care. Heck I get spacey and lost without it. Speaking of spacey, I don't know what I did or didn't add to the meatloaf last night, but it wasn't a good dining experience.
  12. Mar19

    Mar19 New Member

    ...jkd, I'd tend to agree with you. After only a week and and a half I see improvement. Still have pain, but at least I'm moving in the right direction, right? You mentioned nerve damage from surgery. I think that's at least part of my problem. I had two back surgeries in 6 months. One was 4 hrs long, the second 8 hrs. The surgeon told me that there may have been some nerve damage from having to push away the bundle of nerves to get to my vertebrae, but he never offered much help for the pain. My primary doc has been wonderful in working with me over the past years. I sure hope he never retires. Whenever I mentioned the pain to the surgeon he acted like I was drug seeking or questioning his abilies as a surgeon. I don't need that attitude!! I've stopped dealing with him completely.

    Surprisingly, yesterday was the only day I had the "spacey" feeling. I took the Neurotonin this morning and all I feel is "better". I think I'm going to be loving my neurotonin too! Even was able to cut back on my pain meds with it.
    Mar
  13. Mar19

    Mar19 New Member

    ...about the pharmacist. I'm on a truckload of meds; I've always had a very high tolerance to medication. Last time I went to the doc I came back with FIVE written prescriptions! Oy vay! You always get "that look", don't you? I don't care....if he hurt as much as I do, he'd take anything to stop it too! Thanks for your input.
    Mar

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