Posted , 8 users are following.
All I get is horror reports. The drug is for people with seizers....does it HELP them? My Dr. put me on the med. for nerve damage from my butt to my feet. ANYBODY where this med has helped for seizers/nerve pain?
I started a thread about a week ago.....only yo get horror stories. My brothers girlfriend had a seizer and takes the med. Loved it....no seazers since.
0 likes, 29 replies
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rita52071 james56587
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G.Allyn james56587
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Some people swear by gabapentin. To my understanding, off-label use started in the mid-1990's while the drug was still marketed as Neurontin in the U.S. I do not remember when the generic became available.
The point I am trying to make, is the company felt they had a drug, they could use as a money maker for off- label use. This resulted in a multi-million dollar lawsuit (north of 400 million dollars).
Before I discontinued gabapentin, I swore it was helping me, because being even a little late with my next dose caused so much pain. I thought this was my underlying pain. With this medications short half-life, it leads some patients to believe this is what is providing relief and it is really the problem.
The reason patients are so vocal about the problems, is because the drug manufactures will not tell the truth and physicians will not admit to problems for medications they prescribe.
I want someone in medicine to BE A HERO. I wish a medical researcher would research and publish the problems with gabapentin many of us describe. A Nobel prize for medicine should be awarded. If a study is available when I die I want my husband to donate my corpse. Go ahead, cut up my brain, spinal cord and examine my nerve endings. They are sure to find something post mortum.
Recently, I noticed TV commercials where a physician discusses whether a patient feels comfortable being prescribed opioid medication. Physician's need to warn patients about the incident of painful withdrawal. It is far and away much longer and painful than any opioid withdrawal. Patients deserve frank information from their health care provider and should be able to make an informed choice.
For those who feel this anti-seizure medication is working off-label for them; I wish them only good luck and hope they never develop side-effects serious enough to need to discontinue gabapentin. Because if the time comes, they may be in for a serious and prolonged ordeal.
I know I did not help with a good report on gabapentin, but since July 2016, I have nothing good to say about this medication. It should have stayed as a drug to prevent seizures.
Cunderthunt G.Allyn
Posted
My point is this. Your experience might not have been a pleasurable one but understand that a doctor is prescribing it with the intention of it working. If it does not work you simply ask to be taken off medicine or the doctor will suggest discontinuance of gabapentin en lieu of another similar agent. It has been shown to decrease nerve pain in patients and also has been shown to not work in others. The person in question will simply never know until the medicine is used and continued or discontinued.
G.Allyn Cunderthunt
Posted
Thank you for giving input with your last paragraph. I am a critical care RN. I believe firmly patients deserve to be heard. I complained of side-effects from the beginning. When I stated I didn't notice any benefits from gabapentin, my dose was steadily increased to the point where I was at max dosage.
When you state patients will not know the efficacy of medication until it is used and you will not know the problems with discontinuation until weaning off medication this is also true, but patients deserve to be given proper information to make an educated decision about their health care.
I have suffered greatly from this medication. I am still suffering from the withdrawal. I know the side-effects can cause other problems with organ systems and pose a safety issue. Taking my time to post here is because I wish someone had warned me. My postings are accurate and true experiences of what happened to me. My effort is to provide feedback. Pointing out my educational background is done only to explain my educational level, career experience and explain my understanding of the medical culture and system.
If my time and effort has not provided food for thought with other patients; I have other things to do with my time and I am done posting here.
Good luck everyone.
babs99203 G.Allyn
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G. Allyn, I've found your comments to be very helpful and in line with the research I'm doing. I used to think that there was an over-reaction or even ant-med component, like the anti-vax movement to the criticisms of gab. Well I know better now. I get so frustrated by the ignorance of doctors regarding this medication, the articles about cover-ups and lawsuits that aren't discussed, then the long term effects research has shown about the drug. Informed Consent. That's all we're looking for. I willingly took the drug because of the pain of shingles, but every time the doctor said, your pain is still too great, let's raise it again, I wanted to cry. I should have stopped at 1800, as that's the highest dose that is medically effective for pain. So, instead, I'm trying to educate myself, help others and slowly get off it. Keep up the good fight and the information campaign.
sue44752 G.Allyn
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I am so glad I found your post. I was leary of this medication and have only taken 3. They make me feel extremely strange and haven't helped my nerve pain. I thought maybe I needed to let them get into my system. Instead they're going into the sewer system!!
babs99203 sue44752
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Sue, what is the cause of your pain? It's approved by the FDA for only two conditions, epilepsy and PHN (nerve pain after shingles) even then, it may not work for everyone. Doctors prescribe it for all kinds of other things it was never intended for and it may not work. However, despite the miserable side effects and problems getting off it, it does often help shingles pain (which is incredible). It can take a while to work, it's not like taking aspirin for a headache. Tho many of us with PHN regret taking the drug, the pain was so bad there was not capability for having a real life.
sue44752 babs99203
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I have peripheral neuropathy in both ankles and feet, also severe nerve damage in L arm and chest from a botched mastectomy and nerve damage to my scalp from a dr? taking me off my anxiety med that I had taken for years. So to put it mildly, I'm a mess. The last thing I need is a med that doesn't help and is also addictive. I have disposed of it.
babs99203 sue44752
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I think it has limited success with neuropathy. It's commonly prescribed for it, so you're not alone in that. You still may have some side effects from withdrawal, so don't be surprised if you feel off etc. for the next few days. Or you may be lucky and notice nothing at all!
babs99203 james56587
Posted
OK, I'll bite. First, I agree with what others have said about the drug, but my situation wasn't nearly as bad. I have had PHN for 18 months from shingles. I started at a very low dose, ended up at 2700 mg and started January 2017 to taper. I'm now down to 1000 mg. I had two dozen miserable symptoms caused by it at the high dosage (you already know them) and have miserable problems as I taper. So yeah, the dang drug totally sucks.
However, it DID help me with the pain (along with Aspercreme with 4% Lidocaine, extra strength Tylenol,my prescription NSAID and careful activity and rest). PLEASE know I am NOT advocating the drug, but there ARE some things that improved. I was less anxious and more calm on the drug. OR you could just say numb and doped up! Seriously, as I'm planning a major trip, I know that I'll be able to think straighter on the lower dosage, but I have to make sure I don't got too stressed out now.
Ahhh, I'm trying to think of anything else positive...I did sleep better on it (many get insomnia). Hmm. that may be about it.
Remember it IS a seizure medication-- it changes the way the brain works. It stops the seizures but also affects the neurons. It is a VERY powerful drug, much more so than many doctors know. They also don't understand the side effects or the problems of withdrawal. DO YOUR RESEARCH and don't take anymore than 1800 mg/day. It won't help the pain. Make sure it's the correct type of drug and that other treatments aren't available. Question your doctor as to why he wants you on this drug and not others. What caused your never pain, was it shingles? Chemo? Or is it related to sciatica, if so, it may not help.
james56587
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babs99203 james56587
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I STRONGLY recommend you find a different medication than this. Are you seeing an orthopedic specialist? Have you had an MRI or CT? Have you taken physical therapy? Sciatica is miserable but there may be other treatments beside this medication. Do NOT just trust your doctor. I am not anti-medical field or anti-medication. I worked in healthcare as a medical secretary for 30 years and I realize people often don't look for other solutions. Please, this drug has FDA approval for limited conditions with very few other options for treatment and pain relief. Talk to you doctor and do some research.
rita52071 babs99203
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james56587 babs99203
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devin_bob james56587
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mrs_susan74280 devin_bob
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james56587 mrs_susan74280
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I started at 1 a day then 2...then 3 a day at 300mg each. Three weeks later I'm now on 4 day at a total of 1200mg per day. This usually goes away on it's own in 3 months time. I just thought these meds. would speed that process up.