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.

[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.

[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.

[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.

[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.

[gangababe420]

A related discussion, long term effects was started.

[shelley13]

A related discussion, What to take? was started.