United Brachial Plexus Network, Inc.

Has anyone taken the drug Neurontin for the burning pain and found it didn't work for them? My husband Jeff has been taking it for almost 5 months and they have increased it almost to the limit. He wants to quit taking it. He says it doesn't work. Does anyone know of another drug, nonaddictive, that has worked for them? The burning just keeps getting worse and worse everyday. He's in so much pain most of the time he won't even eat. Thanks so much for listening. Debi

God bless you, i have just recenty gotton off of neurotin after three years for financial reasons. This was the only thing that controlled the burning sensation and didn't leave me fried. The pain is so intense now I can't see straight. I do not now what to do, and I do not want to go back on neurontin. It didn't work all that good anyway. I can only hope something will come out of this message board. Everyone with BPI needs a godsend!

Jason is on Neurontin and takes 1200mg three times a day. He is also on oxycontin 40mg three times a day and elavil(also called amitryptilline). What Jason has found is that this combo works sometimes and sometimes it doesn't. He thinks that the neurontin works a little and the elavil helps too. But from what I have learned from this and also being in the pharmacutical industry, is that sometimes what works for one person doesn't work for another. He takes his meds at the same time everyday on the dot and around the clock. But he is never completely pain free. He tried a nerve block too but that only lasted about 8 hours. His nerves are also avulsed.

We hope the surgery was a success for Jeff. It sucks that the healing process takes so long. Its a big waiting game. How and when did Jeff's accident occur? Also what doctor did the surgery? That info will help us to gauge the time frame we might have. Hang in there and keep Jeff busy! Focusing on something else helps to forget about the pain. Feel free to contact us anytime! We are here for support.

Hello Debi, I take Neurontin for my pain & it seems to work ok, I actually stopped taking them for a little experiment, & after two days I was climbing the wall in the house with the pain. But when I took them again the pain eased, now I don't know if they helped phsycologically or it was the pills themselves, but it does'nt matter as long as it works a little bit. And I also take a drug called amitriptilene at night for me getting a sleep, does Jeff get a good nights sleep? if you get a good sleep I find I can handle the pain better the next day, tell Jeff to keep battleing on, don't let him give up,

take care
bigsel
Scottish tbpi

Hi Debi,
I was on neurontin and amiltryptiline. I received accupuncture treatments for the first 9 months after my injury, and now, I am almost pain free and don't take any drugs except an occasional asprin. It's hard to say if the accupuncture helped, or if it was time, or therapy, but I figured, I didn't have anything to lose. Good luck,
Dennis

I am taking Neurontin and find it calmed the "firing" sensations--I still have pain and the cold sesnations but it help with the electrical sensations.

The dosage has been increased several times -- now 300 mg three times a day-- I know when it is wearing off as the firings start.

I recommend its use-- I had no side-effects

Hi Debi, well...I guess I'm one who took neurontin and couldn't get past the headaches, so I had to quit taking it. But.....while I was taking it, it did do away with the firings and hypersensitivity.

One thing the docs stressed was not quiting cold turkey, especially after an extended use. Hopefully Jeff can find something to take it's place. Another thing that helped me was to alternate meds about every six months or so. That is about how long it took my body to build up a good tolerance to it. And when I would change, there was about two or three days till my body could adjust to the new meds......I could tell it too. Hope this helps some.

George

Hi Bigsel, how are you? Thanks for letting me know about the amitriptyline, but Jeff was on that when the accident first happened. And as far as Jeff getting a good nights sleep, forget it. When they did the intercostal, they couldn't use the nerves from his legs, they used the respiratory nerves in his chest, and now when he lays flat, he can't breathe. So, we use alot of bedpillows, but they only work for about 4 or 5 hours. Plus, the block they used under his back for surgery, left a large blister, that went away, but now it's a large lump. Kinda like a knotted muscle. So he has problems with that, too. Hopefully, something will heal soon so he can sleep. But thanks for the info. Nice hearing from you. Debi

Hi Debi

I too took ametriptylene for years, quite heavy doses at first, and I have to say that it did work for me, although the pain never really went away, it did make it managable, and I did sleep...even if it was at odd times of the day! Another drug to try is carbamazepine...I don't know what this is called in the U.S, but it might well be worth trying. It was not suitable for me, because the lowest dose possible made me far too drowsy, and I didn't like that.

The problem with the breathing is something I am very familiar with. Mine is caused by damage to the phrenic nerve at the time of the accident, and I too, for a long while couldn't lay flat without getting out of breath. I spent the first 2 years + sleeping virtually sitting up...but now, I find I can sleep and breathe relatively easily with just one pillow wedged under my neck on the bpi side.

Things do get better..it's a slow process, and in the early days everything seems so much worse; time really does help; feel free to email me if you have any questions about the breathing that I can help with..

Take care...Liz B x

I took it since day one of my accident and stopped a few months after my surgery because I was starting a new demanding job and didn't need the extra dose of confusion that it could have been causing. When you take something for that long you really don't know what it is doing to you.

In talking to others sometimes it helps and sometimes it does not. Very strong doses can cause other problems. If you are on very strong doses and it is not helping I'd talk with my doctor about trying to get off of it. This is a very very strong drug and no one has told me, to my satisfaction, how it works or exactly what it does. It is heavily perscribed to many people when nerve pain is present, not just BPI.

I got off of it by just not taking it one weekend. It was raining and I was going nuts but by Tuesday my pain wasn't anyworse then when I was on it. I was never on a very high dose however.

The best pain relief I got was from surgery to remove scar tissue.

I still live with pain, it does not go away. It's horrible and I hate it but I am still here and I guess that is the important part. I think with this injury you get to a point where you want to try and get back to normal again and I personally think that includes getting off the drugs. Give it time through, there isn't any rush.