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Neurology  (Expert Forum)
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Alternative to Neurontin
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MedHelp Member's Question

Alternative to Neurontin

by jean, Nov 30, 2000 12:00AM
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!
Doctor's Answer

by CCF Neuro[P] MD, RPS, Nov 30, 2000 12:00AM
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
Member Comments (26)

by Enid, Nov 30, 2000 12:00AM
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.

by Christine Jenkins, Nov 30, 2000 12:00AM
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.

by jean, Nov 30, 2000 12:00AM
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.

by Lady Jay, Nov 30, 2000 12:00AM
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.

by ARTB, Dec 01, 2000 12:00AM
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.

by Reenie, Dec 01, 2000 12:00AM
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.

by ARTB, Dec 01, 2000 12:00AM
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