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Alternative to Neurontin
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Alternative to Neurontin

My mother has been taking neurontin for her neuropathy for approximately 6 months.  During the past month has developed demenia, extreme weakness & is now in a wheelchair, sleeps so sound during day that she cannot be awakened, and a severe mouth inflammation that makes it difficult for her to eat.  She has high blood pressure & takes medication for it, along with high cholesterol.  Her weakness has really progressed to the point where care is needed just for routine bathing & daily hygiene.  A few weeks ago, she was using a walker & going to church without much problem.  She is now confined to her wheelchair and very depressed & about to give up completely.  I feel the neurontin may have caused some of this, but her neurologist offers little alternative to the drug.  Is there any other treatments/drugs available?  She is 77 years old & it is difficult to get her to therapies & appointments now.  How can I make her more comfortable to deal with this disease & still help to keep her from having so much pain?  I am afraid we are running out of time to help her!
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Dear Jean:

Sorry to hear about your mother.  Most of the symptoms you are telling me are not prominent side effects of neurontin.  We have seen changes in weight and fatigue as the most prominent symptoms.  Why is she on neurontin, as it is not a medication we generally use for neuropathies without paraesthesias of pain.  What is the dose? as most medication side effects are dose related?  How long has she been on neurontin, as early on in the initial dosing, side effects are more pronounced.  Changing the medication would depend alot on why she is taking the neurontin.  I would speak to whomever prescribed the medication and for what reason, then one can make a rational choice.

Sincerely,

CCF Neuro MD
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My pain specialist put me on neurontin for back pain (ruptured disk) and, as the dosage was increased, I began having private 2 way conversations in my head.  At one point, I would turn to my husband and out of the blue ask him if he wanted white or dark meat.  He had no idea what I was talking about.  I got to the point where I would just say "nevermind", because I knew I was the only person involved in that conversation.  At the time, it seemed to me that this was the way I had always been, but I thought I was now losing my mind and wasn't sharp enough to realize that I needed to get off this drug.  My neurosurgeon took me off prior to surgery when he saw the dosage I was taking, and my mind became sharp again.  My sister had similar reactions when she took this drug, and my mother, who died in Jan., was really out of  it at times.  I can't help but think she had a reaction also to neurontin.  It is not as innocent as it is made out to be.  I now always list it as the only known drug to which I am allergic.
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I've heard so many horror stories about Neurontin.  Yes... there are side effects, but only from a lack of understanding on how this drug operates.  It is a good drug... when adjusted properly to fit the condition.  The horror show plays when the dose is too high for the job it is assigned to "help".  The finale will be "talking to yourself" and near disability.  I know.  I've been on this drug almost 5 years now and can tell you honestly that it is neither a "spur-of-the-moment" type of drug like aspirin or tylenol.  Scheduling on a near-accurate scale compounded with an "accurate" dose will honestly suprise you.  Voices in your head is a dead-giveaway for reduction.  The inability to get the "motor functions" going is pretty bad.  Probably the worst.  I can't take more than 900 mgs per dose with a maximum daily intake of 3600 mgs.  Even that is too much, so I take 900 mgs 3 times a day with the 4th dose reduced to 600 mgs.  If I took the entire 3600 mgs, I'd be hearing voices in my head, talking out loud and twitching as if I was about to have a seizure.  When a person has these kinds of side affects... call the physician AFTER you call the pharmacist and report it.  Understand the drug and go about making it work.  It's a seizure medication... and what is a flash of pain down your spine, or leg, or arm?  It's a pain "seizure".  So... stop them.  It's no different in concept than epileptic-type seizures.  Neurontin is a controller-type drug that is designed to inhibit.  The nerve impulse may go out... but it can't return... so mom can't walk because of overkill.  Don't go around saying you are allergic if you've never used it in correct capacity for the condition suffered.  One good thing about this is it's a "pushable" and a "retractable" med.  Condemnation is a bad thing via lack of understanding.
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She was given the neurontin for the paraesthesias of pain associated to her neuropathy.  She is currently taking 2/400 mgs per day and has been taking this for about 6 months.  My brother was also taking it for before his back surgery, and he had similar memory problems that developed over time.  He was unable to just quit taking it, and had to reduce his intake slowly.  Is it addictive or not?  I have heard of people just stopping & others that had to gradually quit taking it.
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I feel for your mother.  The pain associated with paralysis is almost always continual.  Whenever she moves, or tries to... it can be almost unbearable.  This is why the doc put her on the "workhorse".  It's continual.  Has the doctor ever mentioned drugs like MS-Contin, MSIR, or Methadone for that kind of pain?  The drawback is they are all controlled substances.  Morphine Sulfate.  The MS-Contin is a continual sustained action (works over so many hours), Methadone is similar, but the MSIR is immediate release for those times when pain is so terrific that you need help right now!  I take neurontin, ms-contin and the msir for my paralysis and tumor pain.  Your mother takes a mere 800 mgs per day.  Any more, due to her side effects, would be the ultimate no no.  This is why I mentioned the other meds.  It could be that 800 mgs is too strong for your mothers system.

Your brother recovered (I take it), so he didn't need it anymore.  Neurontin isn't addictive.  It's not a controlled substance.  There comes a time when you don't need it anymore... like your brother.  Since it's a seizure med, the weaning process is the only safe way to make an exit.  If someone just quits, they apparently weren't taking it on any kind of recommended schedule.
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Interesting.  I dont know if the doctor would care to reply, but do you find that people tend to gain or lose weight with neurontin?  Is the weight gain proprotional to the dosage?  
I have been taking neurontin for just over a year.  Within a few months I had gained over 25lbs.  My weight had been stable for years prior to that.  I now feel better but am on a low dosage, run 3-4 miles 4-5 times a week but still cannot get back to my original weight.
I have had very little other problems with the drug.  I remember being a little lightheaded with the first 100mg dosage but never had any problem after that.  I was up to 2700 mg a day without any problems but cut back with doctors approval after finding that a larger dosage did not necessarily bring larger relief.
Thank you for this forum.  
If anyone would care to respond I would be curious to see others reactions in this area.
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I also took neurotin.  I had a lot of trouble adjusting to it at first.  Some people are more sensitive than others.  If you are considering it, ask for the 100 mg. increments.  They usually prescribe 300 mg. size pills.  With this advice, several people I e-mail with have been able to actually handle the drug and the titrations and get some relief.  Neurontin definitely made me fat!  I never got great relief with it either -- it was only marginal.  I now take effexor -- which has relieved my parasthesias, twitching, and burning pains greatly.  Plus, it tends to inhibit the appetite and is a bit of a "happy pill" for me.  It was my idea to give it a go as I read it was being tried with some success for diabetic neuropathy.  My doctor said fine.  It has really worked out well for me.
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It is good to know that neurontin was a "fat pill" for someone else. You are correct on the gradual build up of dosage.  I started with 200 mg a day and worked up to 2700mg over a period of a couple of months with no adverse reaction(besides the weight gain).
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Do you think perhaps being female has anything to do with "no-weight-gain"?  I weighed 124 when I went on it back in 96 and weigh 119 at present.  I have you all beat though.  I take 3600 mgs per day.  3 - 300mg caps 4 x daily.  I do have days when I HAVE to decrease 300mgs in order to divert the side effects.  You know... twitching mostly, because it affects articulation in the speech department.  Man!  Lingual twitching is the pits too!  So I just reduce (no... not weight!) the neurontin and sit on 3300 most of the time.  The stuff works, when you understand properties.

I have been a long-time advocate of Neurontin and make no bones about it.  In previous posts over the past year I've given it the title "workhorse" because that is precisely what it is.  A "pushable" "retractable" workhorse, according to your needs.  It can, however, clash with other meds at times, so maybe Jean needs to have a look at the other meds that her mother takes and re-evaluate with the assistance of her pharmacist.  You all have a great day!
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I too have taken neurontin  300mg 4times a day. I had so me weight gain.     It is a great medication for the pain a person has but the side affects, were killers for me.  After about 3yrs
I stopped taking it . I could not function feeling like a drunk everyday , I also became withdrawn because my mind was slower to think. I knew in my mind what I wanted to say but it always came out wrong.
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My neurologist put me on a new med in September, to replace Neurontin.  It is call Trileptal.  It is in the same family as Neurontin, an anti-seizure medication, but without some of the horrid side effects.  Weight gain being one of them for me as well. Trileptal just became availble in the US in Januray of 2000.

I have been on Trileptals since September 21st and I have to say that it has worked will for me.  I was taking 2000 mg Neurontin. I now take one 300 mg capsule twice a day.  Sometimes, if I am very active, I have to take an extra pill, but usually the total of 600 mg daily works fine for me.

I took the Neurontin for the burning type pain associated with nerve damage.  Even with the side effects I would have stayed on Neurontin because the burning was not something I would be able to stand every day.  I am just so thankful that my neurologist kept up to date on the new medications and had me try the Trileptal.

I can recommend anyone who takes Neurontin to give Trileptal a try.

Warmly,

vickie
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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I took Neurontin on and off about five different time to assist in a seizure disorder and eaxh time I became suicically depressed. At first I throught it was coindidence but after the fifth time I
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realized it was no coincidence, as I was alright in between, depressed but hopeful and not suicidal. I almost killed myself last week and had to go to mental health to stop myself. As soon as I stopped the Neuronin I am fine again. I was able to stop over three days as I was only on 300 mg three times a day.

I take 8 mg's of Klonopin for anxiety and ther seizures and will just stick to that even though I have break through seizures every few days. I may raise the Klonopin if my Doc will allow it.
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Klonopin is related to Xanax.  Wonderful.  Maybe you ought to try taking the superb seizure medication in tandem with the addictively sedative powers of the klonopin?  Did you know that klonopin is a drug used in mental health facilities to quell certain depression-related anxiety tendencies such as suicidal ones?  It's not the neurontin making you like this.  It's the depression.  Also, the menopause does a trip on a woman's mind.  But that's hormonal.  Your doc, I am not sad to say, will not let you boost the klonopin.  Better you ask your seizure doc about the tandem thing.  Wouldn't it be nice to suffer from neither one?  And at the same time???
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Thanks for the imput, but my Neurologist was the one who initially suggested to my Psychiatrist to continue the regimen of Klonopin, Neurontin and the anti-depressant- Celexa. Yes, I am familiar with mental wards because that is where I detoxed off the booze.

You may want to read up on Klonopin as it is used for epilepsy and it does a very good job of it for me. The Neurontin definately affected my moods and I was on an extremly low dose of it.

First of all, I am not in menopause! Hormones?????HA,HA,HA That's a good one, too easy to blame for all womens physical and mental woes!!!!!! I say (DUH) to that comment. Didn't you know that all drugs can be addictive mentally if they make you feel good? That's another (DUH). Oh, by the way I lost 20 pounds after my historectomy two months ago! I plan to lose  10-20 more and stay at that level.

Since quitting the Neurontin I am back to normal moods and can work like before all day long without stopping. The Neurontin is too sedating and apparently has a bad affect on something in my brain. All I wanted to do was sleep or die when I was on it.

Now I can't wait to get off of work and start my hobbies and other home renovation projects.

Everyone is different. Maybe you need to learn that first before posting things that you have no idea of what you are talking about! Thanks again for the other opinion, we are all entitled!

Neurontin's your baby! Klonopin and Ultram are mine, together they work miracles!
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So you take more than just the Klonopin?  You take Ultram and Celexa too.  Oh... Neurontin isn't my only baby.  It's part of it.  It aides and assists in my "pain seizures".  I tried Ultram... it was a joke.  It couldn't cut it.  I've been on Klonopin too.  All it did was alter my state of mind.  It made the world look different mentally.  I didn't need it to "look" different mentally.  I needed it to "feel" different physiologically.  Know what I mean?  My mind is sound.  A Psychiatrist is not part of my entourage.

If you think that menopause doesn't play around with you then you need to "learn things first before you go posting.  You have no idea what you're talking about." I hope you make it through mentally.  Hormones!!!!  DUH!!!!  Powerful things that they are.  One doesn't know and cannot comment on that which she does not understand.  Duh!  "Hotflash City- throw back a bottle of beer!"  Occasionally.  It's survival of the fittest.

Rennovate something.
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You realy sound whacked out! I don't think you need Klonopin to see another perspective I think you are already there. If you meant menopause for yourself you should have made that clear (DUH), you seemed to indicate I was in menopause. Not so, not quite yet anyhow!

So what is your baby if it's not only Neurontin? Please tell all of us nosey people looking for a little entertainment along with our more serious subjects. Maybe you should be on the addiction forum as well. There are plenty of great pain killers out of there. Ultram is not the only one.(DUH)

In the meantime it sounds like you threw alot more then one beer back. MAYBE A CASE IN YOUR CASE?????????? Sober up and you may make some sense next time. Or try Zyprexa, I hear it's good for those out of touch days!
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I'm not going to fight with you anymore.  Why?  Because I know what is going on with you.  I'm going to say this only once, because it only needs said once.  I know what your trouble is and I pray that you can remain sober for another 7 months.  Everyone has different situations and different situations call for different tactics.  What works for me ain't going to work for you... and viceversa.  I've been taking what I've been taking (it's listed earlier in this thread) for years now.  I've been down the road and back when it comes to medications.  I'm glad that Klonopin does a job for you.  You haven't been on it long, but you've been on it long enough to know that it works.  It's the King.  Take it.  It declares war on the seizures you will suffer with for the rest of your life because of alcohol.  I have to give you a "high 5" for sticking to your guns in your war against alcoholism.  I've been over in the Addiction Forum (even posted several over the past 3 years) concerning my own morphine addiction made worse by using "speed" to counter the "morphine nod".  Hell, I shook.  I puked.  I cried.  I seized.  I've done it too!  It's all hell!  You know it... and I know it.  I make sense 99% of the time.  I've done tons of research because of all the **** I've been through... which began with the Guillain Barre Syndrome way back in 72, a parotidectomy in 93, canthoplasty resection of my eyelids on one eye, a massive craniotomy to remove networks of schwannoma from the orbit of my left eye and from my optic nerve... excision of tumor networks from my temporal lobe and the last...... stereotactic radiosurgery to slow down a schwannoma growing in my deep cavernous sinus (they can't operate there).  So... I make sense 99% of the time.  I want you to be a success in your battle against alcohol.  If it takes klonopin to acheive it, then take it.  But please do me a favor?  Don't see how long you can go between doses.  For you, Klonopin has taken on a schedule.  It's gone "time release".  It calls for strick regimentation to maintain a certain "level" in your body in order to do the job you want it to do.  Kick alcoholism in the ***.  Make 7 months 7 years.  You can do it.  If it takes the meds you take, I ain't gonna argue about it.  Just take em.

The menopause is part of a journey.  You can't avoid it... as long as you still have your ovaries.  If you don't have them... HORMONES, hormones, and more hormones or you'll start growing a beard!!!!  hahahahahaha!

Truce?
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There's that 1%, Barbara.  I failed to mention my meds earlier in this thread.  Whoops!  Here they are:  Neurontin 3600 mgs daily (3-300mg caps 4 x day)... MS-Contin 120 mgs daily (1-30mg tab 4 x day)... Baclofen 80 mgs daily (1-20mg tab 4 x day)...  Mexiletine 1400 mgs daily (2-150 mg caps 4 x day).  There you have it.  I take all this and refuse to take Methylphenidate (Ritalin) or Cylert or whatever upper is out there on a daily basis because it is, by far, the ugliest to get off of.  Reducing the MS-Contin prior to my cranie was a piece of cake next to it.  Still... my pain is bad enough to warrant a list like that.  And... no antidepressants (because I don't need them) and I forgot to list my meds.  1% ain't bad when you consider.

Truce.
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There was no competing or war intended. I already admitted complete addiction to Klonopin because it is an addictive benzo. I don't care about that. I need it for the rest of my life along with a pain killer, I take Ultram now. The anti-depressant I did not ask for and it doesn't seem to do anything , in fact the Doc said she may have me stop taking it. At least on Klonopin I can drive and work. booze you cannot!!!! Booze doesn't stop seizures either, it causes them.

I don't want to bore you with my surgeries and stuff so I'll skip those.

Menopause is still a few years away but I am sure it will kick in someday if I am still alive by that time. No one knows these days.

Truce accepted.
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