I QUIT THE NEUROTIN

Discussion in 'Fibromyalgia Main Forum' started by CATLADY912, Feb 2, 2003.

  1. CATLADY912

    CATLADY912 New Member

    I WAS ONLY TAKING NEUROTIN 1OOMG 3X A TIME AND THE APPETITE INCREASE, NEARLY DROVE ME INSANE. I CAN'T STAND THIS NOR COULD I STAND THE ACHES IN MY LEGS AND FEET. I JUST QUIT COLD TURKEY BECAUSE I WAS ONLY ON IT FOR ABOUT 4 DAYS, BUT IT CERTAIN INCREASED THE PAIN IN MY LEGS AND I FELT FLU-LIKE. NOW I DO FEEL BETTER SINCE I SPENT THE ENTIRE WEEKEND IN BED WITH MY COLD PACK AND HEATING PAD.

    I ALSO THING THE NEUROTIN WAS DURING SOMETHING TO MY BRAIN. I FELT VERY ILL AND WANTED TO STRIKE OUT AT SOMETHING.

    HAS ANYONE ELSE HAD A MOOD CHANGE BEING ON NEUROTIN????
    HAVE A BLESS DAY AND A PAIN FREE DAY. JANICE
  2. SuzieQ

    SuzieQ New Member

    My neurologist put me on neurontin for headaches. I didn't stay on it long enough to find out if it would help that. I didn't notice mood changes. What I did have was debilitating leg cramps, where I couldn't walk for almost an hour. When I finally got into the dr that afternoon, my calf muscles were still spasming. I had to call into work because of it. And nobody there could understand missing work for leg cramps. Just wish people could understand what we go through. I was only taking half the dose she told me to start on, and had been taking it for almost a week when it happened, started getting cramps after about 2 days, then it just kept getting worse and worse.
    Susan

  3. Achy-shaky

    Achy-shaky New Member

    I didn't notice any mood change but did seem to get the munchies more. I know someone else who takes it who says it causes more memory loss. When I first took it my prescription was for 300 at bedtime which was ok until I noticed during the day my pain seemed worse - I found out that you really need it in your system all the time to be effective and it usually takes a week or more to mellow out so I called doc and got some 100 mg. & started out with 100 2/day which gave me a sort of dizzy headache for a few days but no pain relief so then I upped it to 200 2/day which made me more dizzy and a bit sleepy but I figured I can handle that if it's just for a few days because I was desparate for something that worked on my nerve pain. The side effects are better now...In fact, today I felt some of the brain fog lift which was wonderful. I have restless leg syndrome and it helps it too even though my neuro insists I continue to take a dopamine agonist (Mirapex) for that. It's weird that you got leg pain from it and sorry to hear you had to quit.
    It's true that since it's an anti-convulsant it does something to your brain but everyone's brain is different.

    Hope you find something else that works.
  4. booklover

    booklover New Member

    Hello Catlady912 and everyone else. I am relatively new to this board. I was diagnosed with Fibro last week. My doctor started me on Nuerontin for the wild, loud dreams, the numbness and tingling in my feet and the jerking limbs that woke me up. The first night I took it I had the first decent night of sleep in 10 years! I went back the next week because I was still having fibro pain during the day and he gave me some sample packs of Bextra. It worked wonders. I felt like a new person. I could do housework, go to the store, etc. I ran out of the samples and went back to him to let him know it worked and he wrote a prescription. The only problem is that he now has to pre-authorize it with my insurance company. The pharmacist told me the process can take a week. I was diagnosed with Endometriosis a decade ago sand had laprascopy to remove most of the ednometrial growths. The surgeon/ob-gyn couldn't remove some near the colon region for fear of puncturing the colon. I was still in terrible pain for the next 4 months. Went back to the surgeon/ob-gyn and he had me take 6 injections (one a month for 6 months) of Depot Lupron. I was in even worse pain. I couldn't believe I could hurt so bad. Went back to the surgeon/ob-gyn and he told me the pain couldn't be from the endometriosis and told me to go back to my primary physician. She put me on birth control pills and that did help some. But I spent all of my weekends for one whole year in bed in a great deal of pain. The HMO where my doctor practiced wouldn't let doctors prescribe any really useful pain medications, so all I could do was OTC medications (the green liquid stuff that takes care of stuffy noses all night long was the most effective), Midrin(a prescription) and Valerian herbal drops. During the worst times, if my husband hadn't seen to it that I ate, I think I might have stayed in bed and wasted away. I spent the next 10 years terrified that I would lose my job. I was a good worker and had a good track record, but I was afraid every day that I would fall apart from lack of decent sleep, inability to be as alert as I used to be and because of pain. I knew that there was a likelihood that when I finally went through menopause, the endo would disappear or at least become a minimal problem, so I waited out those years. Two years ago I was about at my wit's end. Although I had been very open with my boss about the endo (his reaction when I first, gently, explained what it was was "UGGHHH!"), over time he would ask me things like "when is this thing going to go away?"
    Considering I was a reference librarian in a large law firm and he was a librarian/attorney, you would have though he would have used his skills to educate himself on the internet or with some reference books, but apparently he didn't bother. In December of 2000, I fell over some wooden beams that were being used in a remodeling job for our house and smashed my right wrist to smithereens. A wonderful surgeon performed a miracle and in two operations, put it back together. This was the last straw. I decided to retire after 22 years of full-time employment at the same law firm. I was worn out, tired of being in pain and always exhausted. I knew I was probably close to being menopausal and looked forward to the end of the endo. pain. But it didn't go away. Even though I could sleep when I needed to and pace myself, I was still exhausted and the pain was with me every day. While researching endometriosis, I had run across information in CFS and Fibro. Over two years' time, I began to wonder if I had either one, but I was afraid to mention it to my new doctor. He didn't know me and I didn't know him very well. But I finally described my pain and exhaustion and told him I knew it sounded crazy, but I hadn't slept well in 10 years. He listened carefully, asked me questions and then looked at me and said "I think you have fibromyalgia". I was so relieved to hear him give it a name, I almost cried. I asked him if he needed to poke me to find tender points, and he said no. He said that not everyone with Fibro. will have the tenderpoints and my list of my other symptoms made it clear what was wrong. He also said he isn't concerned about differentiating between CFS and Fibro; his main concern is working with me to relieve the pain and to help me get good sleep. He emphasized that this is a chronic condition and there is no cure, but there are lots of things we can try. As I left his office, he looked at me and said "Don't give up". I told him I won't. He is an internist, and I feel so lucky. I will never know how much of the pain the last 10 years was endo. and how much was fibro., but I feel hopeful. I have lots of indicators for being a fibro. patient. Before I went to kindergarten, I had Encephalitis and Rheumatic Fever. The whole family has allergies, although I have outgrown most of mine. I had "walking pneumonia" about 12 years ago. I know I am the very beginning of a long journey, but having read messages posted here has been helpful already. I'm sorry if I have gone on too long, but it just sort of spilled out.
    Thank you for listening.
  5. Cactuslil

    Cactuslil New Member

    Neurotin was a "miracle" med for me; not so for all. Not by a long shot. However there are other meds that are for petit mal seizures and that is the reason we have cognitive deficits. The art is to find the correct area of the brain causing the activity and then lay it to rest. I am sorry they missed yours. Atleast now it isn't guess work like when I began; they knew it did "something" now they know what!

    Another "bugger" in the closet let lease is the family of SSRI's. After probably 7-years of a rare side effect called Tardives Dystonia/kinesia I, with the help of TX Rose, found by myself the SSRI's were giving it to me! I was a basket case which reversed itself within 24-hrs. My psychiatrist said "hump"; don't usually see this w/SSRI's usually with anti-psychotics. Good for him, right?

    I believe SSRI's will find their place in medicine but it may be in area's other than depression or pain augmentation. CactusLil'