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    Old 06-13-2004, 11:32 AM   #46
    sugarleaf
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    Re: Neurontin

    Hi codycoco

    There has been a lot of discussion on Neurontin and I think it is well known to all users and medical providers that Pfizer got the punishment they deserved for off label recommendations. However there has not been a recall of the drug. Were there to be, the suicide rate would hit the roof and the hospital wards would be full to overflowing with very sick patients. It would in some cases be similar to a sudden withdrawal of morphine from a patient who had been taking it for pain for a length of time.

    Neurontin has been a Godsend to many and a nightmare to some. The main problem stems from doctors who prescribe it in ever increasing quantities. Especially to neuropathic patients. I myself have been taking 2400mg of Neurontin for about 2 years after a slow work up. Here in the UK that is the maximum dose. In the US I understand that 3600mg is the accepted max. But having said that I know from people on other websites that the sky is the limit for some doctors. People like mollybrown whos posting follows yours are thankful for the relief the drug brings. With me and many others it just takes the edge off the otherwise unbearable pain.

    Doctors must be made aware of the possible side effects of the drug. In my case which it seems is typical, I get memory problems and some degree of fatigue. If after starting with Neurontin the patient feels bad then the doctor shold bring them off whatever dose they are on slowly and prescribe something else. In many cases an antidepressant is prescribed along with it. This seems to be all that is on offer for sufferers like us, which I think is a disgrace. However until something better comes along for many of us, Neurontin is all that is on offer, other of course than narcotics.

    Jake

     
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    Old 06-19-2004, 04:34 PM   #47
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    Smile Re: Neurontin

    I have been taking Neurontin for about a month for nerve pain (I worked up to 300 mg. 3 times a day), and I would say that it helps, but not enough. I am going to ask my Dr. to increase it to 1200 mg. - three times during the day and another 300 mg. at night. At first it made me drowsy and dizzy (to the point of running into things), but the dizziness subsided and the drowsiness decreased. I sleep better now, but when I wake up early, I have trouble going back to sleep. I can tell when it's time for another dose of Neurontin, since the pain increases. I am also taking Norpramin, which helps, but is much less effective than Neurontin. Sometimes I still take Vicodin, a half pill at a time (which offers the best relief of all, with one side effect - constipation - too bad the Drs. are so reluctant to prescribe it), but that is mostly due to root canals which are still painful (another story!). So I am positive about Neurontin, since I appreciate any pain relief.

     
    Old 06-19-2004, 11:40 PM   #48
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    Re: Neurontin

    I wish I'd have seen this thread before I took Neurontin. Bad news. Long story short, it seriously riled up my auto-immune system [hyper-]sensitivities, eg strep, staph, etc (PANDAS). Pretty much all the negative side-effects, including resurgence of tics, which my doc was surprised about because she said it was supposed to do the opposite. But N apparently rebalances the biochems that happen to trigger tics that are common with PANDAS/ADD, OCD and TS primarily. I think it was being Rx'd for anti-seizure but it was like walking into a beehive for me; fortunately, I got really drowsy, although that doesn't go over big at work. Good luck to you all around, and thanks for providing all this info; it's really hard to get a victim's eye view of meds like this.

     
    Old 06-20-2004, 05:49 PM   #49
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    Re: Neurontin

    I just stumbled across this site and am wishing I'd found it sooner!!!!

    I have been on neurontin for a year and am not a fan of the drug whatsoever. The specialist I was seeing had me taking 3200 mg per day (two 400mg tables, four times per day). It made me feel zombie-like and I was still in pain! I was positive it wasn't doing anything till I went off of it and started getting killer migraines and I wasn't able to sleep at night. I was talking to someone who told me Pfizer offered doctors money etc. to prescribe their drug. That didn't really surprise me as the specialist I went to would prescribe NOTHING else to me BUT neurontin. When there are so many drugs out there why limit me to one?!

     
    Old 06-21-2004, 05:33 PM   #50
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    Question Re: Neurontin

    Hi canadachik

    What have you been diagnosed with? Have you had tests and if so what did they show?
    I have peripheral neuropathy and take Neurontin 2400mg per day and find it takes the edge of my pain. However this is not always the case, there are as you say other drugs.

    I await to hear from you. In the meantime take care of yourself.

    Jake

     
    Old 06-21-2004, 06:12 PM   #51
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    Re: Neurontin

    Hi Jake nice to meet you

    I haven't really had a clear diagnosis as to what's wrong with me. The problems in my neck stem from a car accident in 2001 in which I suffered a whiplash plus got smacked up by an airbag in the chest and left shoulder. I've really been given the rounds thanks to the canadian healthcare system. My doctor waited 6 months after the accident before he decided it was time to actually believe I was in pain and do something about it. Other than having X-rays I'd had no other tests up till that point. I actually just posted my story in a thread called "myelomalacia" so it's probably easier for you to read that.

    The specialist I was eventually referred to had me use a home traction unit for my neck and he gave me cortisone shots in the neck and shoulder. I really don't know how he remained a "specialist" because he was very old and definetely not at the top of his game. Everytime I went to him he would have me raise the amount of neurontin I was taking until I was at 3200 mg (that's when I told him NO MORE!!!). He tried to do nerve testing on the back of my neck (I forget the technical name) but he told me he couldn't do it because I wouldn't relax enough. I get a tingling pain feeling down my left arm quite often and sometimes it goes into the side of my face. This specialist actually died a couple months ago so I haven't had any doctor since then. I'm thinking it wouldn't be a bad idea to see a neurologist to find out what's really going on. I'm only 21 and I'd rather not live with this problem for the rest of my life!

    ~Naomi

     
    Old 06-21-2004, 06:50 PM   #52
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    Re: Neurontin

    Glad you posted back Naomi

    Yes you must see a neurologist as soon as you can get an appointment. You do need nerve conduction tests and I would have thought a further MRI scan. You canít go on suffering as you are, the longer you leave it the more damage you are probably doing. You also want to make sure that the surgeon (whoever) knows exactly whatís wrong before consenting. A really good neuro should get a good idea of what is wrong. I have just read your other posting and realise just how much you have been thro. Do seek help quickly. You donít deserve to go on suffering. My advice would be do nothing until you have seen a neuro.

    I take Neurontin 2400mg daily and finds it does help a little. I also take a cocktail of supplements, perhaps you do too. Do let us all know how you get on.

    Take care and I hope you soon have less pain

    Jake

     
    Old 07-14-2004, 03:21 AM   #53
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    Re: Neurontin

    I am recovering from GBS (Guillain Barre Syndrome) and have been taking Neurontin for years now. I am currently on 3200mg (800mgx4). If I have over done it and cause my residuals to flare up then I have been approved to take up to 1600mg more a day.

    Neurontin has NEVER caused any ill effects for me. It has done nothing but keep my nerve pain under control. There is nothing more painfull than a nerve "re firing" after being off line for awhile.

    As far as Pfizer spending/making alot of money off of this drug, well that is a double edged sword. YES it is expensive if you have no prescription coverage BUT Pfizer does have a program where you can receive this medication and others (including Zoloft) FREE. Yes I said FREE. $600.00 worth of my medicine a month is GIVEN to me by the company that makes it!

    Each individual is different. Each persons neuropathy is different. Each person reacts differently to medication. Just because one person had a bad reaction doesn't mean EVERYONE should not take it. To alot of us it has been sent straight from heaven.

    There is a reason why POSSIBLE side-effects are listed with your medication. Read them, watch out for the symptoms, if you have them call your doctor ASAP.


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    Old 07-15-2004, 09:27 AM   #54
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    Re: Neurontin

    I have been taken Neurontin for a couple weeks now (1200 mg/day) and it has definitly helped the worst of my nerve pain especially the "electric shock" shooting pains with certain movements. Don't get me wrong, it has not eliminated it, but it has reduced it. My only side effect (so far) is insomnia. All the drugs that are supposed to make you drowsy do just the opposite for me.

    Now taking Celebrex, Neurontin and 10/650 mg Percocet every 6 hours (another one that keeps me awake). 80% of my constant pain is gone along with the "shooting" pains being dulled and this I can live with till I see my NS in 2 weeks. At that time I will probably be scheduled for ACDF surgery which will hopefully eliminate all (please God) of my pain.

     
    Old 07-18-2004, 08:51 PM   #55
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    Re: Neurontin

    I had severe nerve damage during plantar fascial release last summer. I found an orthopaedic surgeon who specializes in foot and ankle disorders, and on 17 May 2004, he operated on my foot, removing a ton of scar tissue, the previously released plantar fascia, and part of the lateral plantar nerve that the podiatrist cut (it was far too damaged to repair). I'm currently in physical therapy, strengthening my leg so I can walk agin (now in a removable cast, still using crutches).

    The nerve pain has come back, and my OS has been trying to treat it for a couple months now. We started with Elavil, which made me really jittery, switched to Zoloft, which was almost as bad, then stayed with Vicodin and Ambien to help me sleep at night. Finally, he prescribed me Neurontin right before the 4th of July holiday. We were travelling out of town, so I didn't want to start it in case in made me feel crappy, so I didn't--and then never started! I was a little afraid of how it would make me feel! My PT urged me to start taking it, so on Friday, I did. What is a typical maintenance dose?

    I am happy to say that at 100 mg twice a day, I'm not feeling as jumpy as I did with the antidepressants. I'm a little forgetful and sleepy, but mostly sleepy, and I like that at night! I am just concerned that taking the Neurontin covers up the pain... There is potential that a stump neuroma will form from the cut end of the nerve, and if that's the case, I want the neuroma cut out. I do not want to take Neurontin for years to cover it up. My PT thinks that the Neurontin will just help us get farther in therapy for now; helping with the pain so we can do more before I say "Don't touch that part of my foot!" A few other questions: is anyone using anything to supplement the Neurontin? My OS said to use Lidoderm patches directly over the incision, and Vicodin as needed. How about Ambien? I asked his nurse, but she said to call my pharmacy--and they said to call him! I'm not taking it until I get a straight answer though!

     
    Old 07-18-2004, 09:44 PM   #56
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    Re: Neurontin

    I have Lidoderm patches and when my leg pain gets to the point that nothing else will help I use them. They are wonderful. It is like a mild anesthetic that soaks into the skin. You normally wear the patch for 12 hrs on and then 12 hrs off. I think it is worth giving it a try.

    The neurotin can make you feel hazy and sleepy but these symptoms usually wear off after about a couple of weeks. You are on such a low dose that I don't think it would "cover up" any extra pain you may have in the future.



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    Old 07-18-2004, 09:57 PM   #57
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    Re: Neurontin

    I never got the feeling Neurontin was covering up the pain like a narcotic does. It's not a narcotic. Keep up on the boards though about the memory issues with Neurontin and consider them. Experiences with Neurontin very greatly from person to person, but the most common thread is memory problems. I've been off Neurontin now since October and am convinced it caused a chemical imbalance making me have terrible anxiety problems that haven't cleared up yet. I'm controlling it with Zoloft. Memory continues to be a problem too. I thought Neurontin was a god-send for my neuropathy, but if these residual effects don't clear up I will forever regret having taken it.

    Last edited by riceneuroni; 07-18-2004 at 10:00 PM.

     
    Old 07-18-2004, 10:01 PM   #58
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    Re: Neurontin

    Just consider me another Neurontin user. I've been on it for 4 years now. There once was a time when the pain was so minor I'd forget to take them, now things have progressed to a point that instead of the 3 a day, I take four 400 mg. a day and know when I've forgetten them. This pain is the pits. How do we live like this?? At 54 I'm having a hard time thinking about the future full of such pain, amazing!

    Cathy
    In So. Calif.

     
    Old 07-19-2004, 02:04 PM   #59
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    Thumbs up Re: Neurontin

    Cathy

    Donít worry about your Neurontin dose. I have been taking 2400 mg per day for years which helps a lot with the pain. Some people are taking up to 4000mg per day.
    Just ask your doctor to prescribe what you feel you need per day to keep your pain under control. Even looking at the worst scenario for people like you and me (and there are tens of thousands) there are always narcotics such as the Duragesic patch which has given life back to many. However that is a long way ahead if necessary.

    Just donít worry Cathy there is plenty of help and worrying only makes your symptoms worse.

    Take care and post whenever you feel you need to talk.

    Jake

     
    Old 07-24-2004, 01:40 AM   #60
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    Re: Neurontin

    hi there, i was on neurotin for 2 years , for the first 2 years it helped a little but then i started gaining wieght and the pain got worse , so my nero put me on trileptal so far so good , dont know how long it will last.

     
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