Neurontin, long term use

[maxj]

I have been taking Neurontin for 12 months now, since nerve damage occurred during total hip replacement surgery last year.  I am currently taking 3600mg/day (900mg x 4) and have been at this dosage for 6 months, previously at 2400mg/day.  I have recently had a neurostimulation system implanted for the neuropathic pain, but use of Neurontin is still called for at this point due to symptoms.  My concern is with long term use and side effects of Neurontin (mid-forties male, 170 lbs).  Can you please enlighten me regarding this question?  
Thank you in advance.

[CCF-Neuro-M.D.-CS]

Neurontin is a safe and effective treatment for pain. There are many patients with painful neruopathy who use Neurontin for many years. Typically the side-effects include sedation, dizziness, and imbalance. Therefore, I do not see a problem with you continuing with Neurontin use, as long as you are tolerating the previously mentioned side effects.

[maggie2]

Just recently I watched a program that outlined how the drug company that developoed Neurontin actively promoted this drug for uses not allowed by the FDA.  Pain management was one of these uses.  I thought that if you searched medical abstracts and looked up studies done on these drugs you could be sure that what you are taking has been studied.  Apparently doctors were paid to write reports in favour of this drug and reports were authored and then doctors looked for to put their names to the study. I guess you can't trust anyone. I know my daughter took Neurontin for RSD pain and it did nothing to reduce or improve her symptoms.

[Demiguise]

I'm happy for those that respond to, & can afford Neurontin. I
feel the verdict is still out on it's greatness. I had temporal
pain, some mental-wondering when it was bad, along w/ slight
tremors. My new `1st time' appt w/ a Dr., gave me an RX to fill immediately of 300mg 3 X day. While checking out, the
Neurontin sales-rep. showed up. The doc said `she just wrote up another script' & the rep. replied, `you'll be in Maui in 6 mo!'
I thought it was a joke. Well, the script wasn't avail. in generic. 1 mo=$185.00. Ins-break ONLY cost me $85.00 for 90. You
can't just stop it or you could have a seizure says it's info,
& it can CAUSE memory problems & tremors in some. Read the insert AFTER the 4th pill & I had called the ofc. of severe
confusion. Ofc. said to keep taking! Well some of us can't afford mental confusion or we can't work to afford $185 a mo.
Got a new Dr. Got a med. for $7.85 a mo. Got extra now to go to
Maui!

[Kit1]

Just FYI, the reason the package insert for Neurontin says that you can have seizures if you stop is that Neurontin is officially an anti-seizure medication. (As noted above, it is also used for other purposes). So they HAVE to write that. If someone were theoretically taking it for seizures, they have to be told not to stop taking it.

Stopping Neurontin does NOT *cause* seizures if you don't already have them.

Now, it turns out that Neurontin is not a very good anti-seizure medication. People with epilepsy do not take it.

But it *has* been found to reduce neuropathic pain in some people. So doctors go ahead and use it for that-- and why not? It is excreted through the urine, so there is no problem with buildup in the liver. That alone places it head and shoulders above many other medications. Doctors who see patients are hard-core pragmatists-- if it works, they will use it. Let the research come later. As you can imagine, there are both plusses and minuses to that approach.

Neurontin does have some CNS effects-- some patients report memory problems, dizziness, sleepiness, etc. You would expect some of that because it was originally a CNS drug (to stop seizures), right? Note that the side effects are worst at the beginning, then tend to reduce over time (although not vanish).

Just some info to counter some of the confusion. Hope it's helpful.

[Croz]

I take 2700 mg of Neurontin daily and have no noticable side effects.  I works very well for me.

[1hawk]

Before I did my own research on this drug, I tried it twice. Both times, the dose was increased gradually until I was at a "normal" level. At about that time, each time, my small intestine was shutting down, causing blockage. Since I have an ilestomy (and no remaining colon) I can onlt speak to the small intestine problem.
The only oth med I ever took that could cteate the same symptoms is codine(sp?) in any form.

I was taking it to try for a reduction if spinal cord seizure (intensity, frequency, and/or duration.

[riceneuroni]

I didn't want the pro-Neurontin folks to be outnumbered. :-) It was a life saver for me. Been taking it a year and a half. My memory is a bit softer now, but that's better than writhing in pain all day!

[bjc12761]

This is for maxj - -

I was on Neurontin for several years, 2400 mils / day.  I started out at 600/day, but pain kept returning so I ended up at 2400, pain returned so I decided that I didn't want the  drug any longer.  WHATEVER YOU DO, DO NOT stop this drug cold turkey. . . the side effects are like nothing you've ever experienced in your life!  My wonderful doctor's PA (Dr. was in surgery all day) would not refill my script (didn't realize I had no refills left) w/o an appt., which wouldn't be for 3 weeks.  By day 2, I was crawling out of my skin.  Screaming at everyone (including my boss) and unable to sleep.  My primary put me back on the drug and weined me off, however, the "weining" off period I think was too quick (5 days).  Then, boom, anxiety, headaches, insomonia, weight loss, problems with vision, itching, body aches, you name it!

I had to drop my evening college course and take 3 days off from work!  I have been Neurontin free since July 11th.  I am still not sleeping (even with sleeping aid prescribed by doctor)and have had leg aches/cramping non-stop since being off the drug.  I am under my primary's care, he ran some bloodwork last week and I see him tomorrow.  I don't know, I was on the drug because of a pinched nerve in my neck, but maybe it was masking other problems that I was having.  Don't know.

But, I just wanted to warn you . . . especially where you are at such a high dose (I thought 2400 was max?), don't stop cold turkey.  It is no fun! And, on a side note, rumors are that the FDA feels that this drug is being prescribed "way to much" for uses it was not intended for.

Good luck.

[Demiguise]

Thanks for your great info. Earlier I said the verdict is out in
my mind & you explained why. If `Kit' did a search here, the FYI
by this forum even states sudden stop can cause a seizure in non-
epileptics. It's great if it works & in pain you'll try or pay
anything. That's my point. Once hooked, they up the dose. I'd
like to know if it's so great, why is dose 300 up 4000 mg a DAY?
In other countries it's sold in generic form `Gabapentin'. It's
safe? If you don't stop slowly your brain & body can go into a
permanent spiral. Non-addicting? Your body didn't crave it but
I wouldn't want what happened to you. The docs aren't monitoring
tests. I know someone on 2000 mg & they woke in pain. A call to
the ofc. put them up an extra 1000! Why so many thousands of mg?
Why not 100 or 300? Those #'s scare me. Doesn't sound like all
are pain free either. I read:`it seems to help'. An MD said,`if
it's not really noticebly working in 60 days, something else less
costly should be tried.' Once this is off patent, we'll see if
the hype is there. I really hope Neurontin is the magic bullet
for many. Just be sure the Dr. is paying attention to you & still
looking for the source or evaluating w/ follow-up. I'm hurting
now w/ neck-nerve damage, numb hand & essential tremors. After my
EMG, maybe I'll ck. back.

[Zdenka34]

Hi Everyone--This is my 1st time posting in this Forum & I felt I needed to add my comments about Neurontin. I was diagnosed with PN about the 1st of this year. My EMG was negative, but the Autonomic Nervous System Testing Impression was that I had "laboratory evidence for an autonomic neuropathy." It showed I had "normal responses in the sympathetic nervous sytem, but abnormal responses in the parasympathetic nervous system." I don't understand what all of this means, but am learning slowly with the help of people at BrainTalk Communities at MGH, another great forum site.

I was started on 100mg of Neurontin at bedtime & told to work up 100mg each week until I got relief. After getting up around 1100mg I decided I did not like this med at all & did not want to take it for the rest of my life if I didn't have to. I felt I may have been started on it too soon without trying non-med options first. Anyway, I forgot my dosage one evening & the next morning I thought I was having a heart attack b/c I started sweating profusely which is one of the symptoms of a heart attack. Then I remembered I had forgotten to take my Neurontin the night before. So, don't forget your dosage - you will not like what you will go through.  

Another point I want to make is that I was initially told by my Neurologist to take it at bedtime. Another Neurologist I saw recently said that taking it only at bedtime is like starting all over again every day.  He said it should be taken throughout the day.  I'm not too sure about this so it needs to be checked out.  

Still another point I want to make is in weaning off Neurontin.  This last Neurogist said to drop 300mg every 3 days until off completely. I thought that sounded a bit drastic so I called my Pharmacist. (NOTE: Anytime you have a question about medicine, don't ask your doctor - ask your Pharmacist. No insult intended, but they are trained professionals about medications - your doctor is not.) She said she would check the book for wean-off which she did & it said to drop 300mg every WEEK (instead of every 3 days as the doctor had told me). I'm almost weaned off now so am anxious to see what my increased B12 might do to regenerate my nervous system.

I would also like everyone here to know how important taking B12 if for anyone with PN. I don't know about this Forum, but the BrainTalk Forum has wonderful stuff about B12. Again, doctors are not expected to be professionals on Vitamins so do your research.

[DrHelp]

Did you know that MAGNESIUM (a very vital natural nutrient)
attaches to the SAME EXACT chemical receptor as NEUROTIN and exhibits its mode of actions?
magnesium can be used in place of neurotin in many persons for many different reasons with dramatic results.
i was AMAZED at what magnesium supplementation did for me.
most persons are deficient in this nutrient (it is easily excreted) and there are many disorders that magnesium will help.
do your research!!!!
there are many "rules" about magnesium!
i did over 90 hours of research on the subject. it is fascinating-- to think people are on neurotin and they could just try something natural that produces the same effect by attaching to the same receptor as neurotin.

PLEASE-- if you have any muscle rigidity, tremors, twitching, ANXIETY, depression, AGITATION, mitral value prolpase, heart palpatations, panic attacks, asthma, restless legs, and more-- PLEASE DO A SEARCH FOR YOURSELF ON MAGNESIUM DEFICIENCY. YOU WILL BE AMAZED.
you may even find yourself the answer you have been searching for for so long.
i cant go into all the important facts on this post-- so PLEASE READ AS MUCH AS YOU CAN ABOUT IT!!!!
some important points****
-you cant take a blood test for it-- its innaccurate-- will come out normal. you need intracellular measurements-- not blood tests!
-do not take magnesium supplements with calcium-- it interferes!
-slow-mag is magnesium chloride-- its a good over the counter supplement that favors better absorption (it has a small amount of calcium but not enough to interfere-- aviod calcium- mag combo supplements
-it is verysafe to take mag-- except in persons with kidney disease
-by taking it orally, it may take 2 weeks to get tissue levels back to normal and decrease your symptoms
- it is a very common deficiency and so widely OVERLOOKED!
- diuretics, caffeine increases magnesium loss-aviod these
-in severe cases you can get injections

it makes me so sad that A LOT of people will never realize this and never research or find this out-- and suffer for so many years.

[rrwf]

My doctor at first was going to give me neurontin but I was afraid of it.  He then substituted Elevil and that seems to be working. It is also much cheaper as there is a generic.  I could never afford the neurontin price and eat too.  The only side effect I seem to have is that I sleep through the night which is not normal for me.  I am generally up 2 or 3 times a NIGHT FOR  many reasons.  Sometimes because of the pain in my toes. Is anyone taking Elevil with success.

[deb52]

I have been taking neurontin for fibromyalgia pain. 600mg daily in 3 doses. It worked pretty good for about 6 mo. It did decrease the pain level I was suffering and I thought I had found a wonder drug. 3 weeks ago I noticed a tremor in my hand every morning. It lasted about an hour and would reappear thru the day. I also became unable to follow a conversation as my memory seemed to be failing. It only got worse from there with problems focusing my eyes, dizzy. I became unable to remember what I had just said. I too tried to stop the med cold turkey and found out within 8 hours I could not do that as I became ill with stomach cramps, headaches, shakes and even more mental fog than I suffered from the med.  I have been cutting back over the last 3 weeks and am finally stopped suffering withdrawal. I am still feeling foggy and anxious. But the tremors stopped and the numerous adverse effects I was feeling are fading away. My Dr. said the neurontin was not causing my symptoms but when I asked to be referred to a neurologist to see what the problem could be, I was told I didn't need to be referred that I was just having fibro symptoms. Well I can tell you it was not fibro symptoms. It was nothing more than an adverse reaction to neurontin. All these symptoms are described in the adverse reaction section of any PDR. I really wanted this drug to work for me as I am in quite a bit of pain and don't want to take narcotics.  But I think not enough research has been done on this medication. My Dr had told me I was not taking a high enough dose and we tried to raise the dosage over a few weeks. But I started having adverse reactions similar and some were exactly the same as what I began experiencing before I took it upon myself to stop the med. So please folks. Do pay attention and be careful. I still don't know if all the adverse symptoms this med caused me will leave entirely. I sure hope so.

[Bad Billy]

I experienced Neurontin withdraw symptoms back in March similar to those described above.  It took me 2 months to get off it.  I suffer from Bi-Polar Type II and think that maybe that had something to do with the problems I experienced.  A couple weeks ago I woke up with the same feeling that the abscence of neurontin presented back in March.  Now I went 6 months without a problem, then wham.  Has anyone ever heard of that occurring?  Can the neurontin withdraw be protracted or cause permenent damage?

[Bunni]

I had a menengioma brain tumor (5.3 cm) frontalobal removed in August'03 - it was benign and completely removed.  The neurologist placed me first on Dilantin for seizure control, although the only seizure I ever had was one prior to finding out I had a tumor - Dilantin adversely affected my liver so I was removed over a 2 week transition period to Neurotin - 1600 mg per day and 25 mg of Topamax per day. I keep reading that Neurontin is not particularly good for seizure control so why am I taking it? It is very expensive and I am expected to take it for up to one year- I have been told that I need to take this to normalize my brain waves that are presently too active.  I'm reading about Neurontin as a pain reliver but I'm experiencing constant aches and pains, particular in my legs - also have swelling in my right leg, and ankle, painful left toe, what is this all about - the doctors say it is not related.  I also have mood swings and can't seem to tolerate much stress.

[DryInTexas]

I have been on neurontin now for 11 months. My use of it is a little unorthodox. In January of this year, my psychiatrist preprescribed it (along with other meds) to ease my anxiety after stopping drinking alcohol. She ramped me up on it slowly and I eventually reached about 2,000 mg/day. Currently, I take 600 mg in the a.m. and 300 mg again at noon. I don't know when or if she plans to get me off it. She says it's a harmless drug and that a patient can be weaned off of it at any time. The only side-effects I've experienced (and still do, but to a lesser extent than in the beginning of treatment) is dizziness and sleepiness, but both are manageable at this point. I found this site because I was concerned about long-term use of the drug. Does anyone else here take it for reasons other than pain?

[n2flying]

Hi folks...I appreciate this nice forum.  

I have been taking neurontin for six months for polyneuropathy at low doses and it reduced my pain and increased my endurance without discomfort.  My side effects were just a little nasal dryness and initially (first two weeks or a month) some slight fuzziness just after taking the dosage.

Does anyone know what would be a natural (herbal, supplement) replacement for this drug?  I read above that Magnezium might be one.  Has anyone tried this, or know of something else that would work?

Thanks

[n2flying]

Hi folks...I appreciate this nice forum.  

I have been taking neurontin for six months for polyneuropathy at low doses and it reduced my pain and increased my endurance without discomfort.  My side effects were just a little nasal dryness and initially (first two weeks or a month) some slight fuzziness just after taking the dosage.

Does anyone know what would be a natural (herbal, supplement) replacement for this drug?  I read above that Magnezium might be one.  Has anyone tried this, or know of something else that would work?

Thanks

[diva1203]

I have been on Neurontin at 3600mg 900mg 4 x's a day.  I suffer from terrible neuropathic pain.  Doc's had tried a lot of meds as well as other times of non-medicinal therapies and nothing gave me the relief that Neurontin did.  I realize that doc's get all kinds of perks and kick backs from drug reps but so do the drug reps their salaries are tremendous and this is regardless of the drug they are endorsing.  But Neurontin saved my life if I hadn't recieved the relief I did I might have ended my life.  I never take narcotics even after surgery and they don't help with neuropathic pain anyway.  they may knock you out but they don't help relieve the pain.  However,make sure you wean off this drug under a doctor's supervision.  The rebound pain and withdrawal are excruciating and I would never want that for anyone.  I had to go 4 days without it recently because the pharmacist said they couldn't reach the doc's office and it fell over a weekend and it's a long story.  Anyway, I didn't sleep for more than 15 minutes at a time for 4 days and thought the rebound pain and agitation would drive me crazy but I got my meds and have started feeling better again.  I can't speak for everyone but it has been a miracle for me.

[barsone]

to everyone.   this is my first post and i'd like to chime in for the pro-neurontin folks.  i had L4/L5 discectomy in 12/01 and unfortunately it looks like i have some type of fusion surgery in the very near future. My L4/L5 has re-herniated and scar tissue from the first surgery continues to cause problems with my sciatic in my left leg. If it wasn't for the neurontin, i could not sleep at nite. i only take 600 mg before i go to bed but it does the trick for me. Because of my job, i can't take it during the day. For myself this has been a lifesaver. I realize this is not a narcotic, but believe me, i WANT to take those pills every evening before i go to bed. They just shut me down such that i don't feel the continual spasms in my left leg. i realize everyone is different (i weigh 245 lbs) but i dont know what i've done the last 18 mos. with out this drug. DO NOT TAKE WITH ALCOHOL!!!
          
formerly sleepless in cleveland!!

[bjerk]

I have been on Neurontin for PN for about two years.  Surgery a year ago (fusion of C4-C6) has more or less prevented the PN from getting worse.  The Neurontin only takes the edge of the pain off my arms and hands and, after reading the above comments, I am going to gradually wean myself off the pills (2700 mg/day) and look into alternative, more natural meds such as magnesium and vitamin B-12.  I retired at the end of August and am now still covered by my insurance via the COBRA act; however that will end in just over a year and Neurontin is extremely expensive.  My favorite local pharmacist looked up the price and said that i would be paying $500 - $600 per month without the insurance co-pay.  Way too much for me.

[MMMRN]

I just wanted to echo the advice "DO NOT DRINK ALCOHOL ON NEURONTIN"  I started taking Neurontin six months months ago for continual tingling in my hands. I have been diagnosed with MS.  A few weeks after I'd been on the med, I had a glass of wine.  I wanted to die. I became flushed, sweaty and had heart palpitations until I finally fell asleep (passed out?).  I have not even had a sip since.
Regarding the Neurontin...I tried going to higher dose and it's just not working for me so I am weaning off it and getting used to tingling hands.
I am going to try some magnesium and B vitamins. Thanks for the info.  God Bless you all.

[Fluko]

I have been on Neurontin for 14 months.  Started with  300 mg TID, then ramped up to 600 mg TID, and finally to 600 mg QID and obtained good pain relief for Post Herpetic Neuralgia (PHN). I was affected in my opthalmic nerve with involvement of my eye which has returned almost to normal (eye) .  My side affects were mild loss of recent memory, weight gain and some slight loss of stability while standing at times.  Due to the weight gain and memory loss I requested from my neurologist that he ramp me off the does of 2400 mg.  I am now  on 1800 mg per day of Neurontin and 100 mg Lacmital and am experiencing periodic breakthrough pain.  If this persists I will request my M.D. eliminate the Lacmital and put me back on 2400 mg Neurontin per day. Has anyone else suffering from PHN had any experience with similar dose levels?

[bjerk]

I first began reducing my intake of Neurontin about the middle of January from 2700 mg/day and am now at 600 - 900 mg /day.  My arms and hands do not feel any more painful than at the higher dosage but I'm also taking vitamin B-12 and magnesium so that may be helping.  Have also been putting my hands in some water with epsom salts, a solution and electrodes from a company that builds something called a Rebuilder.  This sounds strange, I know, but it works.  Usually about two times a week for about 10 - 15 minutes each time is good for me.  The pain almost disappears for several days at a time and it feels sooo good not to hurt much.

I'm so happy Neurontin does work wonders for so many, I have other meds to take and want to reduce the numbers.

[eaglegal]

A related discussion, Max Amount of Neurontin was started.

[shelley13]

A related discussion, What to take? was started.