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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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10-12-2006, 12:10 AM | #11 | |||
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Pfizer, the makers of Neurontion are in hot water with the FDA for marketing the drug off label, much like Vioxx was marketed.
Just run a search for neurontin lawsuits and you get a whole LOT of interesting links. http://bipolar.about.com/cs/neuronti...ontin_suit.htm http://www.legalnewswatch.com/news_351.html
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"Thanks for this!" says: | lookingup58 (06-17-2008) |
03-31-2007, 09:19 PM | #12 | ||
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I was on neurontin for over 10 years. Over this time I was advised by 3 different doctors as to what amount to take--all opinions differed. I never felt that it was monitored properly for side effects, no one ever checked metabolic levels or warned about what problems it might cause, and I always wondered how they came up with the dosages that they did. At one time it was too high and I had problems with feeling thick headed and almost slurring my words. The thing that I wasn't told was that a lot of antiseizure medications can wipe out vitamin B in your body and I ended up with a B12 deficiency. One of my friends who still takes one of those drugs takes a B-complex as well. I finally got off of the drug because I heard some things about lawsuits and it being toxic. I know that it works for some people, and that's great, but personally I would be concerned about taking a high dose for a long period of time. Right now I am working with a nutritionist and am off of all pain meds.
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"Thanks for this!" says: | lookingup58 (06-17-2008) |
05-24-2007, 11:36 PM | #13 | ||
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My daughter has been on this med for 5 months. I just I checked out the FDA sites, and those are old. It has been two years since they have investigated Neurontin and suicide rates. I am not interested in a lawsuit, but getting her off of this med and going with a more natural approach is my goal.
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"Thanks for this!" says: | lookingup58 (06-17-2008) |
11-26-2010, 03:40 PM | #14 | ||
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...especially to those linking Neurontin with severe pulmonary problems.
I have been taking Neurontin for about a year now in an attempt to relieve intractable pain caused by occipital & trigeminal neuralgia. While my pain certainly hasn't disappeared, I would say that there has been notable relief achieved...before beginning Neurontin I would experience extreme pain (on a 1-10 scale) anywhere from 8-10 on a daily basis, often for the majority of the day. Since my dosage has been increased to 1600mg/day most days my pain doesn't hit 8+ for any measurable period of time. Usually it stays anywhere from a 3-7. As I mentioned earlier, it's, unfortunately, almost never gone but for brief moments. However, the difference Neurontin has made to my life is that had you asked me a year ago if nothing were to change regarding my pain could I go on with any quality of life I would have answered no way...now, while I certainly would prefer less pain, I can say that I think I could go on if I had to endure this degree of pain on a daily basis. I would think that's a significant difference. Sure, as with most drugs there are some side effects...the most marked of those being clouded/slowed thinking...there seems to be a delayed response when looking for a particular word usually several times a day...a bit frustrating, albeit somewhat humorous and something I can certainly live with...additional side effects I've noticed are clumsiness and increased salivation, both mild...two effects of this med that have certainly turned out to be bonuses are that I now fall asleep easier and a virtual disappearance of my restless leg syndrome, which used to be a real irritant. Oddly, perhaps, I haven't noticed that I am drowsy during the day at all, nor can I really tell I've taken it beyond the typical decrease in my pain about 2 hours after ingesting it. Now, as to those posting regarding lung problems...much of what I've read is someone assigning cause and effect to something that happened to them with no proof whatsoever that the neurontin was, indeed, the culprit...they could just as easily have contracted a virus, which often progresses to bronchitis, and then suffered ensuing recurrences or repeated bacterial infections. The reason I felt compelled to respond to those allegations is that when I was 18 I was diagnosed with a very rare lung condition called Histiocytosis X or Langerhans Cell Hystiocytosis which severely scarred my lungs and which, over time, led to COPD and emphysema. I have been, more or less, a respiratory cripple for quite some time. I would think that with my severely compromised respiratory status that I might be especially prone to related side effects if neurontin were that prone to causing lung problems, but in the entire year since starting this drug I have suffered nothing whatsoever related to my pulmonary deficits... ...all I am saying is please take such claims with a grain of salt and don't jump to conclusions and make connections where there aren't necessarily any to be made...there are ambulance chasers out there only too ready to pounce on any drug for nearly any possible side effect given an opportunity and their motivation is, well, rather obvious. |
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"Thanks for this!" says: | TRESA (11-26-2010) |
11-26-2010, 07:38 PM | #15 | ||
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Hi alassnsane,
I'm glad to hear that the neurontin is working well for you. I can remember when I was taking the drug it made me tired and that was a side effect from the drug. I wanted you to know that I'm not making any conclusions on my own it was my Epileptologist and neurosurgeon who felt that the neurontin was not helping me after I told them I was having TC sz. (grand mal) and status sz. where a person can be out of it for 40 min. to 3 days. After doing tests on me they found that the neurontin caused more brain damage to me so I'm not only going by what happened to me but I have medical proof that the drug messed me up. I am very greatful that it's working for you and I wish you only the best on the drug. Here's wishing you well and May God Bless You! Sue |
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06-11-2011, 01:56 PM | #16 | ||
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my husband was put on neurotin because of chronic back pain. He was started at 100mg 3x a day for 1 week then increased to 200mg 3x a day.
At the end fo the 5th day he started with severe memory loss and reverting back to childish behavior and not knowing who family members were. I became concerned and Dr. stated take him off if this cotinues. At the end of the 3rd day on the 2oomg dosage 3x a day I called again be cause he was forgetting he could even use his rt hand and his walking became shuffled as a child learning how to walk. Dr. said to take him off . This has been 2 weeks and no improvement has been made. Will these side effects be permanant? |
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06-12-2011, 01:58 PM | #17 | ||
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Senior Member
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Quote:
Your husband must go off the neurontin very slowly. Neurontin was only approved by the FDA for epilepsy so your husbands Dr. is illegally giving him the drug. They have done a lot of off market labeling with this drug. This is how I started taking it. I had a concussion and my Dr. gave it to me for headaches and from that point on my short term memory got worse, it increased my seizures, and it messed up my spelling not to mention looking at a person but not remembering their name. Tell your husband to slowly go off the drug and if he's seeing a neurosurgeon you might want to see a different Dr. and get a 2nd opinion. Tell your husband to start taking vitamin B12 1000 mcg. once a day along with perscription muscle relaxers. My husband had back surgery twice and this is what helped him. If your husband is using a cell phone tell him to stay off the phone because cell phones cause memory problems and personalilty probems also after using them a lot. It shrinks the hippocampus of a persons brain where the learning and memory are. I would get to a different neurosurgeon and get a 2nd opionion if I were in your husbands place. Neurontin can be very hard on a person depending on their body chemistry and a lot more info. had been reported to the FDA about the drug and it's not good. I wish you and your husband the best of luck and May God Bless You both! Sue |
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06-15-2011, 04:25 PM | #18 | ||
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Junior Member
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I was on Neurontin for I guess 3-4 years for RSD, doses as high as 5400mg/day. The doctors denied it caused memory problems; I have very little clear recollection of that time period, had occassionally nasty aphasia while on it, and my memory hasn't been quite up to par since. They denied it caused weight gain; I gained over 100 lbs. on it, which didn't start coming off until I switched to Gabitril. And though I had no known history of seizures before taking it, I had at least one (possibly two) full-blown tonic-clonic seizure after I had been on it for a couple years.
God, I hate that drug. |
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06-20-2011, 09:40 PM | #19 | |||
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Quote:
After a couple of weeks I stabilised and came good. I still take it, I have bilateral myclonus (which I had before I took it), and nightime TC which I had before the Neurontin too, Just uncontrolled seizures, simple partial, complex partial, myoclonus and night time TC. All of those were apparent years before I took neurontin so I guess I'm lucky really. A safe dose level was advised so my doc reduced me to 800mg a day. My pain is worse since then and it is awful burning nerve pain. I do have peripheral neuralgia and fibromyalgia but had that for 20 yrs. I think too that because we are individuals what suits one will not suit another. But I would NEVER give medical advice, I'm not a doctor. Best of luck with your treatment.
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08-29-2012, 08:13 PM | #20 | ||
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Hi Julie,
I've had the same problem. Were your docs able to confirm the connection between the Neurontin and your lung problems? John |
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