kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Just curious. I assume we are all different as with other meds.
I am taking 2 at night, one in the morning and will start taking one at noon soon.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I couldn't tolerate that stuff. The steering wheel got REAL big when I tried to drive.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
I am not taking any right now, as I am in my first attempt at treating with abx and want to keep track of how my symptoms are responding.
Before my diagnosis, I was Rx-ed neurontin (generic name gabapentin) in various amounts. The pills come in different sizes, so it's not just how many you take.
At first I took 300 mg pills 1-3 times a day, but eventually starting taking 400 mg pills 4 times a day. The max dose is 3,600 mg per day to my knowledge.
It helped, in particular I slept better while on it. I also tried Lyrica, I think I took 300 mg a day of that, but it made me feel too loopy.
The "trick" to neurontin, IMO, is to start small and give it time to find what dose is the most effective without causing too many side effects.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I take 1200mg daily. 600mg in the morning and 600mg in the evening. I take it for my severe neuropathy pain.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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posted
I assume you know the history of neurontin and how it was developed for seizures then the drug companies started promoting it for all kinds of things. Some have died on it best of my memory but not sure of the dose.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
I trust my LLMD and I do not believe he would have prescribed it for me if I didn't need it. As far as some people having died from taking it, I'm sure that statement could be made about most medications if they researched them thoroughly enough. Yes, Neurontin is indicated for seizure control but it is also frequently used to help relieve neuropathic pain.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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posted
My neighbor's father has been on 2400 mg for neuropathy for years and he'd done really well on it. His neuro doesn't see any reason to taper him off it and it has been a life-saver for him.
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I was told by my Neuro that neurontin is a safe drug in comparision to some others. People have died from asprin, sold over the counter.
As with all drugs, risk vs. benefit should be considered.
It infuriates me when I see responses to someones inquiry that initiates a "scare" response. Such as the insinuation that you may die.
Again, risk vs. benefit.
Seziure drugs used off label are helpful for many neuropathies, CNS agitation etc....and have personally been life saving for me.
Despite the possibility of dependancy.
I have not used Gabapentin Kam, but I think that Wonko gave you some excellent advice.
Good Luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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I learned that a poster here mini-monkey was taking the abx ketek and getting monthly test to see how her liver was doing.
Still with monthly testing she got liver damage.
I personally want to hear all sides of the story on drugs.
If others don't that okay. Not trying to cause fear just educating people.
Posts: 805 | From Utopia | Registered: Feb 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
everyone who has tbi's knows real soon about the possibility of Ketek causing liver damage. It has a black box warning.
Gabapentin does not. Educating is done by stating facts, citing references, etc.
Not posting "scare information" that you, yourself, stated you weren't sure about.
I have no personal dispute with you Jarjar, it IS wise to educate ourselves and to be aware of potential interactions and side effects of the drugs that we are taking.
Along with potential drug warnings. The way that we educate, however, makes a world of difference.
I hope that you find some relief with the Gabapentin Kam. Everyone DOES react differently.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Once again just educating for people that may want to read it. I try not to stick my head in the sand when I take many drugs. My doc and I had a long talk about this drug.
If it works for people thats great stay with it.
One of the most flagrant examples of unscrupulous and dangerous behavior is the May 13, 2004 announcement that Pfizer, Inc. has pleaded guilty to criminal charges involving the illegal and fraudulent promotion of their epilepsy drug Neurontin (generic name: gabapentin). If you were prescribed Neurontin, or its generic form gabapentin, for a medical condition other than epilepsy, you may be eligible for damages.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
well stated fellfit...education is paramount when dealing with any disease process. in our cases --- i say ours in meaning those of us here with TDB's of similar nature and in different stages, types, length of various tx's.And not to mention our loved ones as well.
i now take 800 mg 3xday with baclofen. my case is a matter of treating lyme induced MS. also take cymbalta
my neuropathy pain has signif. decreased with these meds.For me the benifet has out weighed the risk.
Any and all medications esp. any prescripitive rx will have information listed for side effect,adverse reaction and risk of allergic reaction. There are many ways to educate oneself on rx. most pharmacy's give a pre-printed page now days.
there are informative sites like drugs.com, rxlist.com, drugdigest.org, pdrhealth.com, fda.gov- then are many option to search. There are lots of sites, reputable ones as i listed for anyone looking for more rx info.
Maybe those sites can give you the info. your seeking.
I am always grateful for the great info i have gotten here from this site and enjoy learning other tx options, how others have resonded, remission stories esp.
Great to have a place for one to support and educate each other.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
The controversy that Jarjar speaks of is Gabapentins use off-label for the treatment of bi-polar disorder. It was found to be as effective as placebo.
The drug company was touting it as a good med for bi-polar when actually it had little effect.
Gabapentin has beenfound to be wonderfully useful for neuropathies,migraines, seziures etc.
It was the psychiatric use that was questionable.
I would hate to see Kam ditch this potentially theraputic drug based on mis-information.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Feelfit several years ago neurontin was in all the news as a questionable drug. One can research all they want thanks to the net.
Like I said I had a long talk with this drug with my doc and everyone else is welcome to talk to theirs.
This is not I'm right your wrong thread...I'm just pointing out that Neurontin was a controversial drug several years ago and one might want to read up on it.
Personally I did not feel safe to take neurotin during the daytime and drive. Others may not have that side effect. But if one person notices their driving skills are impaired and turns around and goes home this post was worth it.
So I'm letting go of this thread and people can go to thier docs and do thier research and come to their own conclusion. That was my intention all along.
Posts: 805 | From Utopia | Registered: Feb 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Nope not an "I'm right, you're wrong thread" at all. We are both saying the same thing but differently.
I don't think that giving Kam the idea that she could potentially "die" from this drug in the way that you did was supportive....
Risk vs. benefit. Every drug that we ingest should be weighed with this in mind. That's all.
Posts: 3975 | From usa | Registered: Aug 2007
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The last lawsuit against pfizer and neurontin was having to do with a group of people having heart attacks. I don't know if they settled out of court are what. I do remember my brother was taking it at the time and we had a long conversation.
But as I said I like to know these things but perhaps you don't.
posted
My doc told me that several tests were run by pharmacy researchers to determine the LLD (lowest lethal dose) for gabapentin. The result was they couldn't find a lethal dose.
My pharmicist @ CVS said the same thing. Told me i could take 20 100 mg gabapentin pills @ one time & it wouldn't do any damage, EXCEPT, i would probably sleep for 30 hours.
Neither my Doc nor my pharmicist believe gabapentin causes any damage, let alone any risk of death.
I take 2 to 3 100 mg pills @ bedtime & occassionaly 1 or 2 during the day. Since i have been taking them @ bedtime, i sleep quite well.
Posts: 213 | From ohio | Registered: Jul 2006
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jt345
Unregistered
posted
I was up too 3000 mgs per day. But then I switched too Lyrica,but that was the start of my heart problems.
It made Me retain water to the point there it would collect in the sack around my heart.
Each time I would get resting engina. It was so bad that I ended in up in the hospital,with what was thouhgt to be a heartattack waiting too happen.
Be very careful of water retintion while taking this drug. I am not sure but at times I get resting engina,so maybe there was some perament damage. Or the engina could be causeed of my stiffing center wall of my heart.
Just watch out for the water retention. appleseed
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks for the replies. I am starting off slowly and increasing.
And the thing about the steering wheel...does that mean you gained a lot of weight on it??
I have noticed that I have gained 20 pounds in the month and a half I have been on it or two months...something like that.
But, at this point...it is nice to be able to drive further than 5 or 10 min from my home and to be able to be on my feet for a bit to clean up the kitchen and sleep through the night.
I have had at least 2 months of sleeping through the night after years of not getting sleep.
As for me, I would prefer not to be on any drugs....but....
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Common Side Effects of Neurontin neurontin, medication, kidneys, jank, weight gain, dizziness, seizures, nerve pain, meds, memory loss, medicine, headaches, constipation, medications, legs, fibromyalgia, paxil, neuropathy, nerve damage, headache, short term memory loss, short term memory, anxiety, gabapentin, 3x, migraines, seizure, stroke, wean, bloating, neck pain, drugs, depression, muscle pain, severe pain, teeth, lbs, knees, aol, bloated, marsh, neurologist, kauffman, arthritis, head pain, insomnia, bi polar, restless leg syndrome, memory, concentrate
Also the steering wheel was about me feeling loopy while taking it during the daytime. I felt impaired driving and could not take it in the daytime.
Posts: 805 | From Utopia | Registered: Feb 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Well, I am taking one at breakfast and one at lunch and then 2 at night now.
Sorry, don't know the dosage...not up to getting up right now and walking into other room to see.
I just know that I have been sleeping through the night for the most part since starting on it.
Which is a big benefit.
And I seem to be able to do more as far as multi tasking and movement and driving.
But, still have a long ways to go.
Body seems to be in pain a bit more but I think it is because I can move about a bit more now.
Time will tell if I am just going through a good cycle with lyme and company or if it is the gabapentin helping.
Negative's are the weight gain and the loopiness.
Haven't figured out why it happens at times and why it does not at other times.
I seem to be Ok lately. Taking it after eating seems to help or just a coincidence.
Still taking 2 excedrin before I get up in the am.
Thinking I would like to try taking the gabapentin instead but need to also find a way to have some food by the bed to eat first.
I know it is not just the gabapentin that has helped improved things. It is also the abx and supplements.
Seems to need to be a combo of things to help improve with this.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Hi, Just lost message. I started out slow after 6 tries. DID only 50 at begin. Lyrica for FM is GABA/also get at health store. It is given also for people with neuropathy/ or Diabetics because it is. It took care about 6 of my 100 symptom's, grateful for anything that helps. Hope will for you ?Migraines not as bad for 1, also almost unable to speak sentence prior. Take Care, Huggsss, to ALL in Need/Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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