United Brachial Plexus Network, Inc.

Dear all,
I know this drug has probably been discussed before but I can't find the thread. Just wanted to hear some experiences of anyone who has taken nerontin for pain. I am ROBPI. I was given a script today but for some reason I thought this drug was for more severe pain(mine is more of a nuscience). I have been going to PT, doesn't help. This doc is an upper extremity ortho doc and I was supposed to see him in conjunction with my BPI specialist but BPI guy could not make it. I was in a rush so I did not get to talk to doc about this drug at appointment today. Any thoughts would be appreciated.
Thanks,
Becky

Becky,
I dont have any info about nerontin other than I believe it is nerve pain realted.

But if you dont mind, where is your pain? I had bad pain in my shoulder and my OT made a figure 8 strap for me to wear and that helped a lot. It pulled my shoulders back improving my posture, but also letting my muscles relax. I can send you pictures if you think this might help. The strap is similar to that of one you might wear if you broke your collar bone.

Amy 18 ROBPI from MN

Amy,

My doctor gave me a script for therapy (now I have to make an appointment with a therapist) for pain in my unaffected shoulder - overuse issues. I'm interested in pictures of your strap, if you don't mind.

Thanks,

Joanie, 56, LOBPI from Ohio

Hi, I take Neurontin (Gabapentin) for moderate-severe nerve pain cause by my Transverse Myelitis (not related to my LOBPI.. just really dumb luck that I end up with this too).
It was actually made for epilepsy, to stop the seizures, but they found that it also works on nerve pain (neurogenic pain).
Now if all you have is muscle pain, than fractly this is useless to you... if it is nerve pain, well, try it.
How many mg is the script for, how many times a day...? I take quite a bit of it 2400mg a day (600 mg QID).
Any questions, feel free to ask... (I am also a nursing student, know more about meds now that way too)
Marieke

I have been offered neurotin many times but just can't bring myself to take it...
I read so many negatives on it over the years.
Many of the TBPI are but on this and the have central core nerve pain and more recently injured.
My doctor always assure me that it's a good drug.
I still am not willing to have some of the side effects.

I know how to deal with the chronic pain but I don't think I could stand it if I could not think clearly.

I found Hot Tub helped me along with daily ROM exercises.
When I don't do them I am miserable.
I take an anti inflammatory drug now for the stenosis.
It helps a little.

On the TBPI/Message board they have this thread.
http://ubpn.org/messageboard/thread ... read=13048

I know they had a long thread on neurotin but could not find it.
Kath (adult/robpi)

There are side effects true, but, I and many others I know do not suffer from them. Now, that being said i would like to reduce the amount I am on but take into account how high my dose is and that I take other meds for my TM. IF you do have nerve pain and it is not too bad, the dose you may be on might not be too high and you most likely would not have side effects...
Marieke

What kind of side affects are there. I was just given a prescription for this yesterday.

Most common ones are fatigue, dizziness, headache, some people say it affects their memory when taking large doses, but this has not been proven.
What dose are you on?
Marieke

I was told by a couple dr that this drug is the only one out there that can ease the pain caused by nerve damage. I did try it. I got violently sick and hung over the toilet and the dizzyness was unreal. Not to mention that I was a basket case for three days. That was with just one low dose pill. And then the dr tells me to take until my body gets used to it. NOT...

I'm know many people have been helped from this drug and you just have to give it a chance for yourself. I also know a couple people who have taken it and kind of lose themselves mentally while taking it.

It's really up to you and how bad your pain is. If you feel your pain is more muscular, then by all means, suggest to your dr that you would rather take and anti-inflamatory instead to see it that would help you.

Personally, I got tired of all the pain meds and the anti depressents that is supposed to also help the pain and just quit taking them all together. Now, in my 50's I am on vicodin, which took me a very long time to adjust to them. I started with just a half a pill at a time.

And for muscle pain, Kath once told me to try Mineral Ice as nothng else was working. This helps the back and shoulder muscles better than anything I have tried.

Good luck with whatever you decide to do and keep us posted on any side effects if you decide to take it.
Sharon

I tried Neurotin and it did not work for me. It helped a little with the pain but it really messed up my cognitive skills. It was not worth the trade off a little pain for a foggy brain. I am on a low dose of methadone. I have no pain. I have been on it for about a year. The only side effect that I have noticed is short term meomry loss.