After two years, i am finding out Nuerontin doesn't work for me

[solarscar69]

After hearing from my docotors in the hospital when i was first hurt that i will probably be on Neurontin the rest of my life, i took there word for it, but in a secret, well researched experiment of mine, i have started to reduce my 2400 mg of nuerontin a day to 1600 and today i just quit the shit all together. After i cut it in half i immediatly noticed not a single change ( take this along with tramadol 4x's a day ). I guess i have been wasting my time and body on this drug as it does not help with pain or with the burning in my feet. Next step is to get the ultram down to 3 pills a day, though this will be more challenging as i have extreme back pain from the rods. I'm about to find out though.

I also found out it was the gabapentin and not the tramadol causing the wierd dizzy-like feelings i would get after 4-5 hours after each dose. For me, Myth busted.

faster than a speeding ticket

[DIGGER]

Ditto here.
I quit neurontin over a year ago. And like you,nothing changed in the way of pain. Biggest thing I noticed after quiting was not being gooned out and in a mind fog all day. I also noticed it was masking a return of sensations. Pain dosen't really bother me now, maybe I've gotten used to it or it has subsided?

Looking back, while stoned on neurontin, Its as if your acutely aware of your pain and your mind craves more of the drug for relief. Baclofen had about the same effect.

Just my thoughs.

DIGG.

[bruce]

Funny you should post this now. Over the past two weeks I've dropped from 4200 mg/day to 2400 with little change in the severity of the pain. It seems qualitatively different but no worse. I decided to reduce it because it was seeming that the pain would actually get worse in the afternoons after taking a dose. I haven't been below 1800 mg in at least three years. I plan to taper off more to see what happens. I tried about a year and a half ago and didn't get below 1800 .. this time I'm ready to get rid of it all if I can. We'll see .. good to hear that you guys did it with good results.

[NorthQuad]

The pain factor is way down for me in comparison to the day I started takeing nerontin. It never actually seemed to do anything so mabey I wasn't on a high enough dose. My doctor told me I could some day be off of it so mabey it's time to experiment. Would be nice to be out of the fog I sometimes feel after takeing the small snack of pills three times daily. I think I will try tomorrow and hopefully the turnout is a positive one. I beleive it will be though.

Thanks for your post it reminded me I don't need the same dose forever.

Dave

[bruce]

Just a note that changing your Neurontin dose radically is not a good idea. Slowly ramping up or tapering off may help avoid side effects.

Before you experiment, I strongly suggest you consult with your doctor so you can do it safely.

[JnWalker]

I personally think that Neurontin is crap! I tried it for a very long while and it did absolutely nothing. Ive also spoken to other people and come up with the same results. I suffered lots of pain thinking that if i reached the "right" dose i could lessen my pain. HA! Boy was i wrong. I know how you feel solar because my rods can almost kill me sometimes. They hurt almost as much as the pain i get in my legs. Im using Oxycontin and darvocet now and it helps a lot. Doesnt take away the pain completely but its a big difference. I wish you the best of luck and hopefully your back pain will reduce in time.

[metronycguy]

i know neurontin defiantly worked for me.
it worked on the constant shocks and electrocution, and ripping of flesh,lancating, ice pick stabbing feeling that i was experiencing for over 2 years. the narcotics like percocet in high levels would BARELY touch this pain.
sometimes i think the neurontin is prescribed for the wrong pain syndromes, i doubt that neurontin is good for rod pain


added "barely"

[This message was edited by metronycguy on 12-12-04 at 09:59 PM.]

[Kaprikorn1]

Well...don't take my neurontin away because I couldn't last a day without it. I take 2400/day and have been stable at this dose for over a year. Neurontin is not going to take away every little ache and pain you have. It seems to work best for the burning, pins & needles, electrical and stabbing type pains caused by nerve damage.

I don't seem to have any "mind fog" from it. In fact I don't get any side effects except if I take it on an empty stomach or wait too long for my next dose. Then it spins me out and I get the fainting feeling, etc. I had to start taking small doses (20mg-2X/day) of oxycontin for the "rod pain" and to be able to walk or workout without getting real bad burning feet. If I didn't have the neurontin, I'd be on 100mg of oxycontin and be so drugged out I'd sleep 24/7, like I was when in the hospital.

It seems that it is a drug that works very well for some and not at all for others. I would guess it has to do with individual body chemistry. Like when I tried the cymbalta and had horrible side effects but others had none.

Hope you find the right combo for you, Adam.

Kap

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[matt414]

I also throw my neurontin in the garbage and seemed to not notice anymore pain. I did however get rid of the "mind fog" that others have spoke of as well. Last spring I throw all of meds in the garbage and haven't looked back since. Some of my docs said that I shouldn't, but I just got tired of not being able to think straight anymore. And you know what? When I got off of all my meds, my walking got better, I could think straight, I slept better, and just felt better all around. My feet still hurt incredible bad all day everyday, but the one thing I've learned is that pain is all relative. It still sucks that they hurt but, I'd rather deal with the pain then be doped up all day on pain killers.

[HotWheelz]

I was also on Neurontin, 3200mg per day. At one point, I was taking 36 pills a day, now I don't take any. I didn't notice any difference in the burning I had after I stopped taking them. I will say this though, I have noticed that the more negative I was , the more "pains" I had.

[jb]

i take 2800mg/day. i would rather deal w/anything than not having my neurontin. i feel it's helped me tolerate the pain significantly. i do however forget EVERYTHING!! sometimes i get to the point where i can't finish a sentence or concentrate etc. i would rather that than deal w/the excrutiating pain. i guess it effects everyone differently.

[Kaprikorn1]

The "mind fog" I don't have but the forgetting...now what was this thread about? Yeah, the feeblemindedness is a pain but I've learned to make lists and keep a note pad nearby all the time...but it's better than the "boiling in oil" foot pain anyday!

Kap

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[spike_man23]

pfizer has a new drug that supposedly treats "nerve" pain better at a lower dose. I take Gabapentin (generic for nerontin) 800mg 4x a day and have been stable for more than 2 years.

Ryan

[metronycguy]

it called lyrica, but for some reason the feds are slowing the process down by trying to make it a class 3 or sched 3 medication, like percocet

[BeeBee]

Neurotin is used to treat "phantom" pain. Not physical pain. Meaning it can help with the burning, tingling, itchy stuff below the level of your injury. In a way, it re-tricks the mind into not feeling the discomfort. It won't help a bit for physical pain from the rods, an infection, menstrual cramps or whatever. So, Solar, cutting out the Neurotin won't have any affect on the pain caused by your rod failure and bone infection. You need more traditional pain meds, either narcotic or "asprin" reletives, for that. It would be more likely to help alleviate the burning in your feet. I think you'll find, after the initial surgical pain subsides, that your general pain level will be reduced. Also remember that the rods can cause pain elsewhere, because they are close to nerves and to the injury site.

[BeeBee]

Meaning it can help with the burning, tingling, itchy stuff below the level of your injury.

sorry, that's CAN'T help with this pain. Amazing what a "t" will do to your sentance

[metronycguy]

neuropathic pain is physical pain, no doubt about that..

neurontin can definitely help with the burning ,tingling stuff.

thats its main use in neuropathic pain..
i think you meant the difference between Somatic Pain and neuropathic pain,

[sissy]

I have neuropathic pain from my neck down to the bottom of my feet. Its the burning & electrical hell of pain. Every time I wake up from sleep the pain is 10 times worse. But some days the pain is better than others. Most days its a 10 plus & the better days are about a 6.

I took Neurontin for about 2 yrs. @ 4800 mgs a day and boy my head was foggy. I gradually got off of it and my pain was the same, no change at all. I've tried several other medicines with no help so far. So right now I don't take anything. But its good to know that Neurontin does help some.

[Fastasaturtle]

Neurontin hasn't helped my neuropathic pain at all. I haven't been taking it long but notice it can make a person {not all}, completely loose their minds. I'd like to see the pharmaceutical company crumble to its knees. [or its makers shot]

I may seem hostile and that's because I am. Many Drs load a SCI patient up with drugs and smile.{un needed drugs even} The truth is, if I had never taken any of the drugs I'd be 100 % better off. I was fine, never on any drugs for 12 years, I met some dis folks online, they described how certain meds could relieve my aches and pains and how I could get the meds, then my whole world went to hell in a bucket.

I was ok till I took medicines for pain, a good work out 2 or 3 times a day was the best medicine to relieve pain.

--fast

[SWild]

Living with severe neuropathic pain is hell-ish. No doubt about it. I feel for you guys, the way a mom's heart aches when her kid suffers.

Fastasaturtle, it might not surprise you to learn that the company that originally piloted neurontin did crumble.... Folks weren't shot, but some of the principals were at least discredited. There were scandals, hearings & lawsuits over alleged fraudulent (or at least misleading) clinical trials by its original manufacturer, especially when neurontin was prescribed for bipolar disorder.

Some pain experts still think neurontin is effective for pain. (I'm a little skeptical, but that's just one person's opinion.)

Neurontin is now distributed by a pharmaceutical company that bought out the original one that did the clinical trials.

I was singularly unimpressed with neurontin's lack of effect on my son's neuropathic pain, even at high doses. No change in his pain when he weaned off of it, except he was less dizzy & groggy.

IV dilaudid afforded him some relief in the ICU, but it was VERY sedating. And of course you can't stay on IV dilaudid once you're out of the hospital.

Outpatient: Fentanyl patches with norco for breakthrough pain took the edge off, a little bit. The pain specialists wanted to implant a pump to deliver analgesia intrathecally. We were at wits end.... and desperate people do desperate things. So we went to Beijing.

Chinese miracle? I know there is insufficient data to support my personal observation and an "N" (sample size) of "one" is hardly scientific, but my son's constant feeling that his body was "on fire" went away when he woke up from Dr. Hongyun Huang's OEC transplant. (he had some gnarly post-op headaches, but they went away). Dr. Huang makes no promises about pain relief. In fact, he says very honestly he doesn't guarantee pain wouldn't get worse with his procedure if the patient gets more sensory return.

But something happened in China to the signals that were going haywire & transmitting the neuropathic pain sensations. I wish the researchers would more fully investigate OEG's potential.

We're still waiting for the day when my son can move his limbs... but he's getting stronger day by day... and there is a bit more movement in the right arm. The waiting is a lot more tolerable for him without the constant excruciating pain. He was able to detox himself, with gradual titration, off all the opiates. He has never taken baclofen. Now once in a while, he will take an advil for normal musculo-skeletal pain in his neck (where all his stabilization hardware is).

Pain relief is just one of the many things we can't give up fighting for.

Matt's mom