[Hope15]

I know many, many people get excellent pain relief from this drug. I was wondering though, can the drug do just the opposite in some people by irritating the nerves?

[roybean88]

I have been taking it for years it works well for me. Kind of makes you doopy at times, other times it makes me very talkative. Wish it did more for my bad moods !!!

[daniella]

Hi. I just started neurontin a few months ago and am still on the increase but am on other meds too. For me I have made progress since being on the combo I am. I still have days where I cry through pain but am able to do more. As for increasing pain I do not know. Like for me I had a lidocaine infusion that did and a nerve block that increased to but as for orals I am not sure. Sometimes things for me are flukes and sometimes a connection. How long and what dose are you on? I have heard it is like 1800-3200 or something for most.
Roy can you go on any other meds for the mood. Actually my meds even on my horrid days have been better but I see a psych too. That was a very good thing I did. I am still anxious and down a lot but in comparison to the horrid state I was in mentally it is progress. One can't go from A to Z.

[Hope15]

Originally Posted by daniella

Hi. I just started neurontin a few months ago and am still on the increase but am on other meds too. For me I have made progress since being on the combo I am. I still have days where I cry through pain but am able to do more. As for increasing pain I do not know. Like for me I had a lidocaine infusion that did and a nerve block that increased to but as for orals I am not sure. Sometimes things for me are flukes and sometimes a connection. How long and what dose are you on? I have heard it is like 1800-3200 or something for most.
Roy can you go on any other meds for the mood. Actually my meds even on my horrid days have been better but I see a psych too. That was a very good thing I did. I am still anxious and down a lot but in comparison to the horrid state I was in mentally it is progress. One can't go from A to Z.

Hi Daniella. I started taking 1800 mg. of gabapentin last December. I still had some horrible days, but was afraid to stop the drug, because of the times when my pain level went down a bit. I thought somehow it could be helping on those days. Finally, I had enough and decided to go for it and took myself off. That was around the 9th of June, and I actually have been doing better. I know it is probably just a temporary little break, but it started when I stopped the drug. I just wanted to make sure that the gabapentin was not actually irritating my nerves instead of helping them. I know everyone is different when it comes to responding to this drug. I guess I shall see what happens. I am glad to see that you are doing a little better yourself. I think it is so important to be able to talk to someone who understands.

[daniella]

Did you stop cold turkey? Out of curiosity did you start the dose ar 1800? I ask cause I was started at 300 to work up increase every week of 300?I am confused of why you went off cause you felt worse then when you started or had other side effects? Maybe this was not the right med or a high enough dose can you talk to your doc?Sending thoughts

[Hope15]

Originally Posted by daniella

Did you stop cold turkey? Out of curiosity did you start the dose ar 1800? I ask cause I was started at 300 to work up increase every week of 300?I am confused of why you went off cause you felt worse then when you started or had other side effects? Maybe this was not the right med or a high enough dose can you talk to your doc?Sending thoughts

I weaned myself off of 1800 mg. a day, which in the beginning I worked my way up to as you did. It has now become obvious that the gabapentin was not doing anything but making me gain weight. I just recently got my health insurance back after several weeks, so now I have to go through the rounds again, finding new doctors, new med etc. I'm just really frustrated with myself for staying on that drug for so long out of fear that things could be so much worse if I went off.

[daniella]

I am sorry. I understand as I have went through similar out of fear of making things worse. Try not to beat yourself up. You can't change the past and who would of none. Hopefully though it is so frustrating to have to start with new doctors that it will bring you an amazing one. It just takes one to approach things different. Really I am on my 5th pain doc and finally am making progress though slow but at least he works with me. There are many other meds as you know. Sending thoughts

[jezbel]

Hey you guys..... I stop by this site every once in a while and read-in and I noticed your post about Gabapentin. I've got degenerative disk problems and have had a couple of big surgeries over the past 10 years or so. Although they were successful there have been some unintended side effects - one was that I need a bone graft for my spine so they used some from my hip area. While doing that they damaged a large nerve in the area (lateral femeral cutaneous nerve). As a result I had horrendous pain (sort of like phantom pain) for years. I tried all kinds of meds i.e. the lidocaine patch (useless for me), fentanyl patch (made me ditzy) all the opioids and injections of just about everything from B-12 to steroids, etc. I wound up on about 3000 mg of Neurontin. I titrated up slowly, 100 mg at a time. I had to get used to the fact that it made me sleepy at first. But if I took too big a dose I also got "twitchy" and had nightmares. Slowly I got there, but gained nearly 10 pounds in 6 - 8 months. I took it for 3 years. One day I got a stomach bug and had the notion that I was taking too much medicine that might be making it worse. I also took an anti-depressant, a couple vitamins and sleeping pills.
SO....... I thought I was doing a reasonable job of reducing the dosage of Neurontin and basically stopped taking all of it in about 10 days. Big mistake. I had my first and (hopefully) only anxiety attack. But it was huge attack. I couldn't catch my breath, my heart was racing, I couldn't be alone, I felt frightened for no reason. It was the ultimate "fight or flight" feeling and I couldn't make it stop. It started too late in the day to get to the doctor's office and I didn't associate it with the Neurontin. It was the worst feeling of helplessness and panic ever. I'm thankful that my husband understood what I was telling him, I knew it was panic. (I'm from a family of shrinks but don't live near them). I barely got through the night and saw the doc the next day who gave me a script for Ativan which was a lifesaver. And then I found a good psychiatrist who talked me through the next 2 weeks... which is how long it took for all the symptoms to fade. But she also looked up the medication and told me that because it is really an anti-seizure medication that by stopped too quickly it can cause almost seizure-like brain activity, including panic attacks. I had to go back on it and then very slowly, over the next 3 months cut back on the dose. I also lost the ten pounds without even trying. I tried taking Gabatril after that for about a year. That's also a drug that was meant for seizures, so same procedure slow to go up and slow to go down. It didn't help much. And ultimately I realized that I was so desperate for anything that helped that I had used the Neurontin as a last ditch crutch. Eventually (after about 5 years) I either got used to the pain or it improved.
I am prone to neuropathies, I've found. I have a "small fiber neuropathy now in my right hand, maybe related to the c-spine surgery a decade ago. I will never take neurontin or gabitril again. I tried Lyrica, the relief was minimal and I gained 6 pounds in 10 days. It wasn't worth it. I just had 2 epidurals and will try one more. After that, I'll just have to live with a combo of pain, pins & needles and numbness. And hope that it will eventually fade too. If you're going to take those kinds of meds, understand that there are some side effects, especially about stopping them suddenly. Weigh your options, look for good neurologists and good shrinks, talk to others and hope for the best.

[Hope15]

Originally Posted by jezbel

Hey you guys..... I stop by this site every once in a while and read-in and I noticed your post about Gabapentin. I've got degenerative disk problems and have had a couple of big surgeries over the past 10 years or so. Although they were successful there have been some unintended side effects - one was that I need a bone graft for my spine so they used some from my hip area. While doing that they damaged a large nerve in the area (lateral femeral cutaneous nerve). As a result I had horrendous pain (sort of like phantom pain) for years. I tried all kinds of meds i.e. the lidocaine patch (useless for me), fentanyl patch (made me ditzy) all the opioids and injections of just about everything from B-12 to steroids, etc. I wound up on about 3000 mg of Neurontin. I titrated up slowly, 100 mg at a time. I had to get used to the fact that it made me sleepy at first. But if I took too big a dose I also got "twitchy" and had nightmares. Slowly I got there, but gained nearly 10 pounds in 6 - 8 months. I took it for 3 years. One day I got a stomach bug and had the notion that I was taking too much medicine that might be making it worse. I also took an anti-depressant, a couple vitamins and sleeping pills.
SO....... I thought I was doing a reasonable job of reducing the dosage of Neurontin and basically stopped taking all of it in about 10 days. Big mistake. I had my first and (hopefully) only anxiety attack. But it was huge attack. I couldn't catch my breath, my heart was racing, I couldn't be alone, I felt frightened for no reason. It was the ultimate "fight or flight" feeling and I couldn't make it stop. It started too late in the day to get to the doctor's office and I didn't associate it with the Neurontin. It was the worst feeling of helplessness and panic ever. I'm thankful that my husband understood what I was telling him, I knew it was panic. (I'm from a family of shrinks but don't live near them). I barely got through the night and saw the doc the next day who gave me a script for Ativan which was a lifesaver. And then I found a good psychiatrist who talked me through the next 2 weeks... which is how long it took for all the symptoms to fade. But she also looked up the medication and told me that because it is really an anti-seizure medication that by stopped too quickly it can cause almost seizure-like brain activity, including panic attacks. I had to go back on it and then very slowly, over the next 3 months cut back on the dose. I also lost the ten pounds without even trying. I tried taking Gabatril after that for about a year. That's also a drug that was meant for seizures, so same procedure slow to go up and slow to go down. It didn't help much. And ultimately I realized that I was so desperate for anything that helped that I had used the Neurontin as a last ditch crutch. Eventually (after about 5 years) I either got used to the pain or it improved.
I am prone to neuropathies, I've found. I have a "small fiber neuropathy now in my right hand, maybe related to the c-spine surgery a decade ago. I will never take neurontin or gabitril again. I tried Lyrica, the relief was minimal and I gained 6 pounds in 10 days. It wasn't worth it. I just had 2 epidurals and will try one more. After that, I'll just have to live with a combo of pain, pins & needles and numbness. And hope that it will eventually fade too. If you're going to take those kinds of meds, understand that there are some side effects, especially about stopping them suddenly. Weigh your options, look for good neurologists and good shrinks, talk to others and hope for the best.

Hi Jezbel, I am sorry you had that experience. It just goes to show that different drugs affect us so differently. I have talked to people who have had much relief on neurontin/gabapentin. I am just not one of them. It has been over a couple of weeks since I got off of the drug, and though I have had bad days, so far not as bad as when I was taking the drug. That is probably just a coincidence though, but still, the drug was not helping me and I took it for months. I seem to have such a high tolerance for meds, I have had that since I was a kid. I take enough blood pressure medicine to kill a horse, but sometimes it barely works. Anyway, back to the old drawing board. Thanks for the suggestions. I think we all dream of maybe, just maybe, we will each be one of those cases on which the nerves do heal....

[jezbel]

Have you tried Cymbalta yet? It's an antidepressant but it also addresses norepinephrine and nerve receptors. I can only take the smallest dose, it makes me "twitchy" if I take more than 20mg. But the neuros are suggesting 40, 60 mg.