Neurotin contreversy

Discussion in 'Fibromyalgia Main Forum' started by Sissy123, Jun 28, 2003.

  1. Sissy123

    Sissy123 New Member

    I have recently learned through an article in the New York Times, that Neurotin is under scrutinty because Pfizer has paid docs a great deal of money to push the drug to docs for uses other than what the FDA has approved the drug to be used for. It is only to be used for epilepsy. I have been taking it for mood, RLS, and pain for years. I am concerned about the effects it could have on those of us that have taken it. Does anyone have anymore information on the use of it for those of us that dont have epilepsy? Thanks Sis
  2. baybe

    baybe New Member

    I took neurontin and woke up believing I was paralyzed my brain couldn't connect with my body it was very scarey. I called in and the doctor on duty , just told me to let it wear off. She didn't tell my primary, who later recalled I was unwilling to try something new. I am afraid that sometimes doctors play the "throw something at the wall and hope it sticks way of medicine. We'll try something that doesn't necessarily work, but what the heck maybe it will mode of medicine. This puts us through hell, but if nothing else we fibromites are resilient and willing to believe we will be better, I just wish the doctors would realize what a strong group of fighters we actually are. Much luck and love
  3. KayL

    KayL New Member

    My neurosurgeon had me on Neurontin both times I had ruptured disks in my back and surgery for them. He kept increasing my dosage because it wasn't helping my pain any; on the contrary, I experienced just about every side effect they had published and felt absolutely awful the entire time I was on it.

    Also, in suppressing *pain* messages, this drug sometimes suppresses *pleasure* messages. Both years I took it, it was months before I could have an orgasm after I went off of it.

    I know some people here have had great results with Neurontin, and I know a lot of docs like to push it for nerve pain, but this is one med I will never take again for any reason.

    Just my thoughts on it.......

    Karen
    [This Message was Edited on 06/28/2003]
  4. Mikie

    Mikie Moderator

    It is not uncommon for docs to prescribe drugs for reasons other than what they were developed to do. Take Elavil. It is an antidepressant. Docs prescribe it in low doses, not as an antidepressant, but to help with sleep and chronic pain. This is very common.

    I take Klonopin, the benzo version of Neurontin; both are antiseizure meds. They help stop the misfiring in our brains which keep us in a slight state of seizure all the time. Both will help with sleep, anxiety, sensory overload, and muscle spasms like RLS. Mine also helps greatly with tinnitus and the running brain thing.

    If this is true, the FDA will become an even worse impediment to people than it already is. I wouldn't worry too much though. Docs will most likely continue to prescribe the meds we need unless they are banned by law from doing so. Geez! Just what our overworked docs need, more interference in their ability to treat us.

    Love, Mikie
  5. sofy

    sofy New Member

    If drug companies were required to do studies for every single symptom a drug is prescribed for then we would be so limited to what drugs we could get because it costs millions of dollars for every study.
    Leave the system alone and be greatful doctors have some latitude to treat us with drugs that might be helpful even tho our test dont show any real problem.
    Btw it wasnt Pfeizer, it was the original drug company who made it. Pfeizer just bought them out or they merged. Cant remember all the details.
  6. Seagull

    Seagull New Member

    your doc put you on? Was it a really high amount per day?

    My doc gave me a prescrip for Neurontin, but only 100 mgs, 1 to 2 times per day, to help with sleep. He told me the usual daily amount is about 3,000 mgs, but thought that with my severe chemical sensitivities it was better to start it at a very low dose. I have not yet filled it because of all that I am reading here about its effects, but would really like to see if 100 mgs would give me better quality sleep.
  7. pearls

    pearls New Member

    I take 1500 MG Neurontin total each day, with 300 each for breakfast and lunch, and 900 at dinner. It has helped me a lot with sleep problems and keeping my chest pain at bay. My husband and I both take drugs for off label uses, which is perfectly legitimate.

    -Pearl
  8. Wolverine

    Wolverine Member

    and have still got the whole box nearly. Because of my MCS i tried small doses - 1/4 100mg capsule. slept better than i have in ages, but body felt very disconnected the whole next day and weakish - like next day sedation. not as bad as klonopin tho, i felt terrible on that, felt so awful but couldnt make my body move to get up and tell anyone! that was on a tiny dose too. Elavil in small doses worked better for me a while back now. (like 2 or 3mg! all i could take i think) Im waiting on something called serenity which is mineral natural lithium apparently no side effects. have to keep trying hey. :)

    Chris.
  9. franners

    franners New Member

    If it wasn't for neurontin I would be in sooooo much pain. I am up to 1200mg's at night and 900mg in the daytime for a total of 2100mg in 24 hours. I still am having some pain and after my body becomes accustomed to it I will increase it. Yes I have a druggy feeling in the am and typing this correctly is hard, but I can't and wont live with the pain. I know everyone is different and reacts to drugs differently but I do take wellbutrin with mine and the wellbutrin gives me a little pep so it helps ease the druggy feeling after it kicks in. And from what my doc says it will increase my sexual desires. He even asked me if I still lived with my boyfriend. Like what would he do if I didn't live with anyone. Perscribe toys??
    I do know my honey hates me being druggy and wants me to not take it if I want to drive some where, but I think it is time I stopped driving any ways cause I get something with my sensory....
  10. schnoodle

    schnoodle New Member

    I was also scared to death to try ANYTHING new. From what I understand Neurontin very rarely has reactions. Anyways, I have Multiple Chemical Sensativities and reactions to a lot of meds but nothing bad happened. I am on a very low dose. Started at 100 at night and now am up to 300 at night. Just take it slow. Also, if you feel a little drousy in the daytime it will go away as your body adjusts. Then you can up the dosage.
  11. Sissy123

    Sissy123 New Member

    I have had no side effects from the drug, but I have graduated to a whopping 2400 mg for the burning pain I have. I can put the heat pad on high, which is how I got my burns, and it feels better than the burning in my back. Even with the Nuerotin. I am so tired of the meds I take being attacked by someone, somewhere at any given time. We have enough to deal with without someone causing me anxiety about taking meds to try and feel better. I was only concerned about the long term effects of nuerotin on us. It doesnt even make me sleepy. I have to take klonipin for RLS anyway and that helps with sleep. Thanks for all the information. You guys are great. Love Sis
  12. Fibromiester

    Fibromiester New Member

    I've been on Neurontin for years--Topping off at 800mg, 5x's a day. I also have Psychological problems, and my shrink started me on it. This was like in 1998! My pain has been getting worse, so I've asked my New Dr. to decrease the high dose. now I'm on 400mg Twice a day.
    I also talked to a New Pain Specialist I saw this week, and she said They will "top out" Neurontin at 4000 a day.
    Well, anyway, It did nothing for my pain...and the controversy, the side effects, Eh, I'll get off it...
    Love
    Fibromiester
  13. Achy-shaky

    Achy-shaky New Member

    When are people going to wise up and realize that FM is a seizure related condition? Just because we don't usually get to the point of seizure and don't have epilepsy doesn't mean we should not be allowed to use this drug.

    I'm a fairly new user of it but was so happy to find something that worked on my horrible nerve pain. I started out on low dosage of 100 mg at night due to my sensitivity about 7 months ago and now taking 300 at night, 300 2 x day. Apparently this is all I need even though it doesn't stop the pain completely because I've tried to increase it but get a numb feeling all over if taking more than 300mg at a time so I'm not going to push it. I also have to allow 7-8 hours between dosages or I get that numb feeling...I'm so sensitive!

    Until they come out with something else that helps nerve pain other than narcotics which I can't take either, I will continue to take it unless the nerve pain miraculously goes away!

    Blessings,
    Shaky