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   Neurontin (Neuropathy board)

15th March 2004
---I have a severe scoliosis and 2 herniated disks and 4 bulging. I was having back discomfort and difficulty walking but nothing I could not tolerate. One morning woke with severe numbness and tingling in hip, lower leg, ankle & foot. Foot and ankle felt like walking on broken glass and the foot had the "tight sock" feeling.
---One of the disks was pressing on the sciatic nerve and maybe other nerves as well. I Was in a great deal of pain. My GP prescribed Neurontin and because of it's description, I didn't take it. Referred to a physiatrist and the first thing she asked was why I was not taking the Neurontin as she felt sure it would help me. I started 300 MGs in morning and 300MGs at bedtime. I can take up to 900 MGs a day, but have not needed to. (Sometimes I take one in the middle of the day, but that is when the weather is changing or I have done more work than I should.) Along with the 300 MG Neurontin I take Vicodin and had immediate good results. That was 2 yrs ago. Nothing has changed as far as the back, disks and nerves, but I am no longer in acute pain unless I do not take the Neurontin. I can always tell when I am late taking it as the crepitious and tight sock feeling start coming back. I still have some pain and discomfort but nothing I can't tolerate with stretching exercises, etc.
My understanding is that Neurontin was only approved for Nerve Pain and some forms of epilepsy, nothing else. The problem seems to be that it is sometimes expected to relieve other symptomes bothering people.
So, it works for me; I hope it will do so for you, if you decide to take it.
Best Wishes,
Jen.........PS/ If you take Neurontin or Vicodin, you MUST EAT something substancial before or immediately after taking. I have accidentally taken it without eating and believe me, that is NOT something you want to do. Also, do not take any pain killers,like Aspirin, Ibuprophen, Vicodine (Prescription med), etc. when taking Neurontin unless your doctor prescribes it to expressly be taken with Neurontin. If you are unsure if something is okay to take, call your doc and get his approval first.
16th March 2004
I wanted to thank everyone who took the time to read my post and to especially thank the ones who posted. This is such a wonderful site and I am so thankful I found it. You do not get the same response from your Doctor on a medication as you can on this site of actual personal experiences. :angel:

I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:

Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
16th March 2004
Quote from emjsmith:


I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:

Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:


WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.

After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..

Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.

The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.

(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)

I don't know anything about Vicodin or Zoloft.
18th March 2004
Quote from emjsmith:
I wanted to thank everyone who took the time to read my post and to especially thank the ones who posted. This is such a wonderful site and I am so thankful I found it. You do not get the same response from your Doctor on a medication as you can on this site of actual personal experiences. :angel:

I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:

Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:



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Hi............I have not been here in a while to post but will add my two cents.

I have peripheral neuropathy due to Lupus and I ahve been on Neurontin for 6 months. I was started out at 100 at night then upped to 100 in morn and night then 100 3 x day....then 200 3 x day........then 300 3 x day.......now 400 3 x day...............
It has helped me 75 %.............

I dont understand why u r taking such a large dose just at night . I would discuss this with my DR. I think spacing it out makes more sense???? But then I am not a DR so................

yes.........there are side effects and I am not in favor of drugs but PN is sooooooooo bad............there isnt much one can do but submit to "something"

good luck and please post again !!!!!!!!!!!!

kathi
24th March 2004
I know isn't that a huge amount to start out on?!! I have only been taking the 600mg. at night. Instead of the 1800mg. I am suppose to take. I am setting up a appointment to discuss it with her. Also a strange thing has been happening to me. Now I do not always have the best memory same as people in pain all the time I know it's normal. But I feel like I am losing it. I went to the store and had to stand at the counter looking at this cashier and couldn't remember what I was to say. I mean my mind was completely blank and the harder I tried to remember the worse it got. The guy looked at me like I was a crazy person. It has been happening a lot. Has anyone had this kind of a reaction with neurontin. I hope it is the medicine and I am not just losing it. Ha!! Thanks again for all of your support it truly helps!!!! :bouncing:
Quote from snowmelts:
WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.

After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..

Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.

The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.

(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)

I don't know anything about Vicodin or Zoloft.
11th June 2004
I have been on Neurontin for almost 3 months due to a pinched nerve in my neck. The pain in my shoulder blade was horrendous for the first two weeks (like a burning cauldron of tar). My doctor put me on Neuronton 300 mg twice a day after the first two weeks of misery. Although for the first week, I only took it at night - to build up my tolerance I guess. Neurontin is the only thing that controls the nerve pain. Massive amounts of Motrin and Vicodin didn't come close to helping. I quit the Vicodin after a week because I figured out the Neurontin is what was helping. Also, my experience was that Vicodin and Neurontin do not work well together. When I would take them together at night, I would have TERRIBLE nightmares. If I separated them by 4 hours, then no problem. Even though I greatly appreciate its effectiveness with nerve pain, I do have an increased sense of memory problems and fatigue. Although with the pinched nerve I am not able to exercise as much as I used to which could be part of the problem too. I will probably try to wean myself off it as soon as I can. But I don't want pain either. :yawn:
13th June 2004
Hi Everyone;
I take Neurotin 600mg 3x a day and Vicodin 4x a day for PN in leg and foot since back surgery 2 months ago today. I have same side effects as everyone else but not to the extreme. I did have 4 weeks of swollen foot and leg but that has finally subsided. Meanwhile NS, GP and Vascular Dr's all got a visit to make sure nothing else was going on. Like I said, swelling has gone now, thank God! I tried to skip a dose before my Vascular appointment so I could have the pain more evident while he examined me. I didn't realize how much the Neurontin was helping! That feeling of cracked glass under my toes and around my ankle and up my shin and in my butt were just horrible! The vicodine helps only with the residual back pain I have from the surgery but does hardly anything for the PN. I found that I can take both prettymuch together, I just wait maybe a half hour between. My memory is not to be trusted (as you all know with Neurontin) so I keep a pad near my meds and write down in two columns the time I take the pills. I then underline the time indicating that I did in fact take that dose. I then write underneath it the next time to take it but don't underline it yet. This way, if I wake up and have pain I only need to look at my little pad and can see when I last took what and when I am suppose to take the next dose. I reach for the med, take it and then underline the time I took it and then write down the next doses time.

I know this sounds like redundant chatter but really, this system has worked well for me and thought sharing it might help some of you who are still homebound and can try it.

I had a 3 level laminectomy and fusion with plates and screws and rods for L4-L5-S1.
So far it's been very promising! My pain was unbelievable at first (in the back) but by the 4th week not so bad with the meds. Now at 8 wks my back only hurts if I stay active on my feet or sitting for too long so I still need to rest every 3-4 hours lying down. The foot & leg pain (and wet sock feeling) is what drives me nuts.

My Dr increased the Neurontin from 300mg 3x a day to 600mg 3x a day after 3 weeks of initially starting it. The first day of 300mg and the first day of 600mg I felt really doped by it with eye pulling and dizziness but it passed in a day or two.

I now feel it is really helping me a lot and do not want to stop it yet. I see my NS on Tuesday to discuss the PN. MRI with contrast did not show nerve problem but He and I know it is from the surgery because it started emmediately after the surgery in the hospital. He had the hospital check me for blood clots in the leg because I was screaming with leg pain. So now at 8 weeks we know it is not vascular (had tests), not anything with the machinery he put in (MRI), I guess on Tuesday we will discuss physical therapy and whatever else can aleviate this nerve problem. In the meantime, I'm sure glad there is a med like Neurontin which goes right to the nerves. The vicodine does not.

I do not have to eat before or after the meds as neither hurts my tummy. (Most other drugs do, like advil or motrin.) Yes, I am a little more ditzy than usual but who cares, I was in so much pain after the surgery I could not believe it!

My system for keeping track of my med times was even helpful when my sister came to town to visit me. She would look at it and know what I took when and what to bring me in my bed.

Even though it has been several of the hardest weeks ever after surgery, I do not regret having it done. I already know I am much better for it. I no longer have my bones rubbing together in my back. And my back is straight again! (My disks had collapsed and my spine was all caved in. Oh, I forgot to mention, when I was been readied for this operation in January, I had an MRI of my entire spine and was told I needed emergency surgery on my C3 as my head was unstable. So I first had cervical surgery laminectomy and fusion with a doner bone and plating, done 2/4/04. I had to wait 7 weeks before they could do the lumbar spine.

All in all, everything is fine (except for this darn PN pain) and I'm glad to have done this, and I'm glad my Dr is prescribing meds that work!

PS Sorry for the length of this! That Neurontin really helps and I'm able to sit this long to type. By the way, to answer codycoco, the paper that your drugist gives you on the meds that tell you about the drug states that Neurontin IS prescribed for Neurapothy pain as well as for seizures.

Be well everyone, as well as you can. But most importantly, try to be happy. Try :o)
19th June 2004
;)[FONT=Microsoft Sans Serif] I have been taking Neurontin for about a month for nerve pain (I worked up to 300 mg. 3 times a day), and I would say that it helps, but not enough. I am going to ask my Dr. to increase it to 1200 mg. - three times during the day and another 300 mg. at night. At first it made me drowsy and dizzy (to the point of running into things), but the dizziness subsided and the drowsiness decreased. I sleep better now, but when I wake up early, I have trouble going back to sleep. I can tell when it's time for another dose of Neurontin, since the pain increases. I am also taking Norpramin, which helps, but is much less effective than Neurontin. Sometimes I still take Vicodin, a half pill at a time (which offers the best relief of all, with one side effect - constipation - too bad the Drs. are so reluctant to prescribe it), but that is mostly due to root canals which are still painful (another story!). So I am positive about Neurontin, since I appreciate any pain relief.[/FONT]
18th July 2004
I had severe nerve damage during plantar fascial release last summer. I found an orthopaedic surgeon who specializes in foot and ankle disorders, and on 17 May 2004, he operated on my foot, removing a ton of scar tissue, the previously released plantar fascia, and part of the lateral plantar nerve that the podiatrist cut (it was far too damaged to repair). I'm currently in physical therapy, strengthening my leg so I can walk agin (now in a removable cast, still using crutches).

The nerve pain has come back, and my OS has been trying to treat it for a couple months now. We started with Elavil, which made me really jittery, switched to Zoloft, which was almost as bad, then stayed with Vicodin and Ambien to help me sleep at night. Finally, he prescribed me Neurontin right before the 4th of July holiday. We were travelling out of town, so I didn't want to start it in case in made me feel crappy, so I didn't--and then never started! I was a little afraid of how it would make me feel! My PT urged me to start taking it, so on Friday, I did. What is a typical maintenance dose?

I am happy to say that at 100 mg twice a day, I'm not feeling as jumpy as I did with the antidepressants. I'm a little forgetful and sleepy, but mostly sleepy, and I like that at night! I am just concerned that taking the Neurontin covers up the pain... There is potential that a stump neuroma will form from the cut end of the nerve, and if that's the case, I want the neuroma cut out. I do not want to take Neurontin for years to cover it up. My PT thinks that the Neurontin will just help us get farther in therapy for now; helping with the pain so we can do more before I say "Don't touch that part of my foot!" A few other questions: is anyone using anything to supplement the Neurontin? My OS said to use Lidoderm patches directly over the incision, and Vicodin as needed. How about Ambien? I asked his nurse, but she said to call my pharmacy--and they said to call him! I'm not taking it until I get a straight answer though!
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