Discussion in 'Fibromyalgia Main Forum' started by Zuben, Jun 18, 2005.

  1. Zuben

    Zuben New Member

    Hi Everyone,

    I have CFS and Fybro. I forgot both my sign in name and password, but finally made it back. I've lived in almost constant high level pain for a decade. Some days it all seems to be more than I can bear.

    Recently, a neurologist suggested that I take Neurontin for the pain and muscle spasms (actually minor seizures)that began at the onset of the dd.

    I have worked my way up to 9000 mgs, but apparently I can take up to 4,000 as I begun accustomed to the drug. So far the pain has not diminished.

    Have any of you used this drug? In you opinion, is it worth the side effects? Most importantly, has it reduced pain for you?

    Wishing you all the best,
  2. Zuben

    Zuben New Member

    That should read 900, not 9000! ~ Zuben
  3. sharon5650

    sharon5650 New Member

    I take up to 1200mg of it too, but to me it works better when combined with a narcotic...I take it with "statax" a narcotic. We had a report here in Canada, "when combined with a narcotic it helps, for shingles and neurophathic pain. I have recently started this, to soon to tell, but I don't get excited anymore about treatments, cause I always get let down.....sharon5650
  4. Ancient1

    Ancient1 New Member

    Neurontin in the past made me violent and short tempered. It probably alleveated the seisures, but left so many side effects I couldn't tolerate it long.

    This time around when the seizures returned a decade later and the Neurologist I now have started talk about this drug I researched it and found an alternative, which is working great for me. Valerian Root with Rhisomes!

    I take the tincture drops, I started off slowly 6 drops not dropperfuls, in the morning at 11 am. 6 more at 5pm. and 12 at bedtime. It reduces my pain, breakthrough seizures, and calms me down. Read my bio...10 kids plus it's summer and they multiply!

    I take it with a magnesium supplement, which also has a little iron and calcium. I am up to three supplements taken at the same time as the tincture which I mix with water. Until the Valerian Root I have been unable to tolerate supplements at all.

    In an emergency I have taken the tincture a drop of two directly under my tongue for quick relief off schedule and it is a miracle I swear. Tastes nasty! Then I wash my mouth out with water or whatever is handy!

    It does stink like sweat socks, but no side effects!

    The Neurologist was thrilled with the research he came up with as well. Check it out and see if this may be an alternative for you some day.

    It also only costs me $15 a month for both items, verses my high co-pay for the medication, and the high cost of suffering with side effects.

    I also take other seizure medications. Topamax sprinkles 3x a day, narcotic pain medication/w Tylenol 1-3 x a day, anti spasm medications 4x a day, allergy medications at this time. Sorry to be so vague, memory isn't so sharp tonight! So I'm not just a health nut! Wish somedays I could be...

    I went from having 3-4 seisues (serious)even lost consciousness, a week and at least 1 TIA a week to 1 seisure in 5 weeks and 0 TIA's, since beginning the new regimine! Looks promising! I rarely tremor or head bob anymore. I have had two days of vertigo which is much less than before. My headaches and migraines have disappeared! I wakeup refreshed at 6:30 am. even though I don't have to and enjoy the morning with the birds chirping in my lovely back yard while everyone sleeps! I need fewer naps and rest periods, and I sleep less in general.

    My new wheelchair, the Neurologist swore I would be in any day just sits at the end of my bedroom unused for now. It makes me smile! No major stroke here! Although, I am cautious and will take it out when we go to the Zoo or a museum, or anywhere that requires endurance. No sense overdoing it and triggering a fibro flare in the meantime!

    Love and Appreciation,
    Susan (28 years and hanging in there)
  5. Zuben

    Zuben New Member

    Hi All,

    Thanks so much for this plethora of useful information! It's VERY much appreciated and the sense of community here is really encouraging. This dd can be SO isolating, even when around others. It seems (no it's definite) that only others with this damn thing can really understand the level of pain and the absurdity of limitations. That in itself is pretty hard on the old self-esteem. It's very hard to feel good about oneself when the pain is constant.

    The Neurontin is not yet having the desired effect, but I have only just moved to 900 mgs with the intent to increase. The side effects I have noticed are minimal, such as feeling like I'm stuffed with lead ! I say minimal because anyone with this condition will at least have some days like that.

    I am concerned that I still need Tylenol 3s to get even remote relief and the idea of using Neurontin was to obviate the need for narcotics. The neurologist offered me slow acting morphine, but my fear is becoming addicted to something that may end up not working anyway.

    Again, man, many thanks to all who have responded. It shows real caring and the information has been invaluable. Keep it coming! I hope it helps others also.

    Much love to all of you!


    P.S. Sharon. I live in Canada also, but on the other side!
  6. JLH

    JLH New Member

    The Neurotin has helped my fibro pain a lot. I just take 300 mg., 3 x day. My sister is on twice that much!

    I also take Cymbalta which also helps tremendously!!!!!!!!

  7. fibromaster

    fibromaster New Member

    I tried to take it but it made me terribly nauseous.
    Neurontin (pronounced NUHR-on-tin) is a prescription anticonvulsant medication used as a supplementary treatment for partial seizures, most commonly epileptic seizures, as well as the burning nerve pain that sometimes persists for months or even years after an attack of shingles (herpes zoster) in adults. The generic name of Neurontin is gabapentin, and the drug is chemically unrelated to any other anticonvulsant or mood-regulating medication, and there is no generic form of gabapentin as the manufacturer, Pfizer Inc., has patent protection for Neurontin. (Gabapentin was originally sold by Parke-Davis – a subsidiary of Warner-Lambert, which was acquired by Pfizer Inc. in 2000.)

    The drug was approved for sale in the U.S. in 1993 as a treatment for epileptic seizures. When taken for epilepsy, clinical studies showed the most common side effects included blurred, dimmed, or double vision; bronchitis (in children); dizziness; drowsiness; fatigue; fever (in children); involuntary eye movement; itchy; runny nose; lack of muscular coordination; nausea; tremor; viral infection (in children); vomiting, and weight increase (in children).

    For nerve pain, the most common side effects included accidental injury; constipation; diarrhea; dizziness; drowsiness; dry mouth; headache; infection; lack of muscular coordination; nausea; swelling in arms and legs; vomiting, and weakness.

    Though gabapentin (Neurontin) was approved by the Food and Drug Administration only as a supplementary treatment for seizures, Pfizer Inc. is being sued by a number of litigants who claim the drug maker illegally promoted the medication for at least 11 unapproved medical conditions, and used their own employees and paid physicians to promote the drug for these “off-label” conditions. The 11 illegally promoted, unapproved uses for gabapentin as outlined in court documents are:

    Bipolar disorder

    Pain syndromes, peripheral neuropathy, diabetic neuropathy

    Treatment of epilepsy alone

    Reflex sympathetic dystrophy

    Reflex sympathetic dystrophy (RSD)

    Attention deficit disorder (ADD)

    Restless leg syndrome (RLS)

    Trigeminal neuralgia

    Post-hepatic neuralgia (PHN)

    Essential tremor periodic limb movement


    Drug and alcohol withdrawal seizures

    Though it is not illegal for a doctor to prescribe a drug for unapproved conditions, it is illegal for drug companies like Pfizer Inc. to market a medication for unapproved uses.

    The generic name of Neurontin is gabapentin, and the drug is chemically unrelated to any other anticonvulsant or mood-regulating medication, and there is no generic form of Neurontin.

    The drug was approved for sale in the U.S. in 1993 as a supplementary treatment for epileptic seizures.

    Pfizer Inc., has pleaded guilty to illegally marketing Neurontin for unapproved illnesses.

    Doctors can legally prescribe drugs for off-label purposes, but it's illegal for drug companies to market them that way. Medicaid spending on the epilepsy drug increased more than tenfold from 1996 to 2000.

    Neurontin can result in suicidal tendencies, hostility and increased anxiety when used for 'off-label' illnesses. More Neurontin Side Effects >

    Pfizer has paid over $430 million in penalties for illegally marketing Neurontin, and Medicaid fraud.

    Approximately 90% of Neurontin usage is for off-label purposes.

    Neurontin generated in excess of $1.3 billion in worldwide revenues in 2000, a substantial portion of which was derived from sales within the United States. Pfizer reported Neurontin sales of $432 million for the last quarter of 2000 and sales of $812 million for the first two quarters of 2001.

    Pfizer is currently in litigation with multiple drug manufacturers to prevent the production of a generic drug form of Neurontin.

  8. tamoley

    tamoley New Member

    for almost a year now. It has helped me a lot for pain. I take 900 mg three times a day. If I am late taking it I notice right away. I have had no side effects and only need to take the occasional Advil on the bad days. For me it has made the differance between functioning or just sitting around unable to move. It took about 4 months to work my way up to a dose that worked for me. I do notice that I have a little trouble with memory but I will gladly make the trade for the relife I get.

  9. Zuben

    Zuben New Member

    It is early days yet on this drug. The worst side effect is the dizziness and general light headeness. I notice that most of you are using the drug in combination with others. Do you think that is just the way it is wiuth this drug? ~ Zuben
  10. Zuben

    Zuben New Member

    The only effect this drug seems to have with me is to cause serious dizziness, lightheadedness and accompanying nausea. The pain is still there. I have also noticed that my reflexes are slower periodically. Has anyone else had this experience. I realize it may not even be the neurontin, as these symptoms are part of the dd anyway.
  11. eggshel344

    eggshel344 New Member


    I took Neurontin for migraines and cluster headaches about 5 years ago. I was on a relatively low dose, I think 500mg? a day- I was taking a bunch of other meds at the same time too. All I remember about it was that the Neurontin seemed to do nothing for me, good or bad. I don't recall any side effects, but I also don't recall any releive either.

    I am not big on taking a bunch of pills, particularly if I don't think they are helping, so I stopped taking it and didn't miss it at all.

  12. Zuben

    Zuben New Member

    Thanks for all the valuable feedback, Everyone!

    I stopped taking Neurontin when my cognitive symptoms became so bad I had problems with simple word recognition. I would be in a store, unable to remember why or even how I was there. Again, this has occured begore as part of the dd, but the frequency and intensity was MUCH worse when I was taking that drug. I did not notice any beneficial results from it at all. I actually feel a bit better without it!

  13. WoodstocksMusic

    WoodstocksMusic New Member


    I have posted in the past about all my experience with neurontin. I took it for about a year.

    I stopped taking it because of the side effects it was causing me. But I must say that I think the neurontin was what got me back on my feet so to speak. It helped to level off the pain for me and that helped me to be able to do more.

    I think the key to this DD (Fibromyalgia) is to get exercise. I think getting exercise is impossible by the time you get the diagnosis of Fibro. You have dealt with it for 10 or more years before you realize what you have and your body is so worn out from trying to push through it that you have crashed and burned at this point.

    So the steps back from "crash and burn" are first getting enough restfull/restorative sleep (this could take a year to do!) Next you start venturing out again in forms of light exercise (heck just getting out and walking through a grocery store was all the exercise I could handle for months.)

    I remember taking a shower and laying naked across my bed for a nap because I was too exhausted to even dress.

    Now I swim with my kids again and do light yard work and light housework.

    I have learned not to stress when the house becomes strown but just to chill and do what has to be done and let the rest wait for another day (or week)

    Good luck as you try to crawl back into the real will take time but you can do it, I am living proof of that.
  14. lilaclover30

    lilaclover30 New Member

    I have been on Gabapentin for probably 3 months. I take 300 mg. 3x daily. I also take Effexor 100 mg 2x daily and a low dose of Klonopin. Yes, sometimes I do have bad pain but just found out that some back and leg pain is coming from scoliosus and spinal stenosis.

    Have had no bad side effects - but do have bad short term memory. But you have to remember that short term memory is a part of the FMS symptoms. My hubby prompts me when necessary and I laugh about it with good friends. A thought can leave as I start to say something but it always comes back in a bit.

    I also take Tylenol #3 when I am going somewhere or have a special occasion. My Dr. said not to suffer if you can help it and does not believe that you can become addicted to #3. I never take more than 3 at a time once a day.

    There are so many things that are symptoms - look some of them up on Internet. You will be surprised.!!

    Gentle Hugs and keep your chin up.

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