Everybody wants to put us on Neurontin. Has anyone explained to you how Neurontin actually works?

When I was dx'd, I already knew the horrors of Neurontin, from reading abuot everyone's experiences here. And I also knew many of us were maxed out on the dosage and where still hurting.

So, of course, I got the dx, and of course the first thing they wanted to do was put me on Neurontin. But before I jumped on board, I went to my regular PCP (who I trust more than any doctor in the world), and I told him they wanted to put me on Neurontin, and I asked for his opinion.

He put it this way, and then he let me decide what I wanted to do:

Nerves can sometimes be "turned on," like a light bulb. We can injure them and turn them on. Usually, they turn off on their own and stop bugging us. Sometimes they need help to turn off.

Neurontin works by turning off the nerves.

The reason your whole body goes whacky is because neurontin is not selective. It basically turns every nerve off in your body.

Once the misbehaving nerve is turned off (which can take a few weeks, right?), then you can slowly come off of the medication and it should stay off.

In most cases, this can be a great thing. In fact, when my doctor told me this, he explained to me that he, himself, had just finished a round of Neurontin because he had a problem with a nerve in his back.

And he also explained to me all of the lovely side effects. You basically forget everything. You forget where you put your keys, etc.

Anyhow, I knew where he was heading with this, and I asked him... "So, every time I raise my arms and compress the nerve, I'm basically turning it on?"

And he said, "Yes."

And I said, "So, what good is Neurontin going to do for me if I'm just going to keep turning the nerve on, anyway?"

And he said that was for me to decide.

And I put two and two together and realized for myself that this is why many of us end up maxing out on Neurontin and still having symptoms.

And I figured, I'd rather have my brain working and my body in pain, than have neither of them working.

Now, this is just my experience, and just my opinion. And maybe I'm wrong in my assumption (above).

Perhaps those of you who are maxed out on Neurontin and still in pain might have a different opinion about this?

~ Jenny