I need some quick advice

General General TN & GPN (Old Site)
1

Hi all,
I have an appointment next Monday to see if I qualify for a clinical trial for motor cortex stimulation (at Johns Hopkins). I have consistently had daily pain in the 5-7 range. Last week, my neurologist started me on baclofen and klonapin, and my pain has let up quite a bit. Last night, I went without the baclofen, and the pain returned.

So here’s the deal: in order to qualify for the study, I have to have a pain score of 6 or greater, which I have when I’m not on this med.

Does baclofen stop working, like all of the other meds have? Do I go off of it so I can qualify for the study? Do I thank my stars that this medicine is working for now and cross my fingers that it’ll continue forever?

What would you do if you were in my shoes?

Thanks,
Beth

2

I am on 40 mg Baclofen daily as well as 800mg of Carbamazepine. I find that the coverage I get only lasts a few months and then I need to readjust.

3

Thanks, Patty. That's the real issue, isn't it? Constantly having to adjust meds ... and the side effects that come with that process. Plus, of course, the pain when the meds stop working.

Patty said:

I am on 40 mg Baclofen daily as well as 800mg of Carbamazepine. I find that the coverage I get only lasts a few months and then I need to readjust.
4

When I scored my pain, I did both on and off meds to be clear. I also kept a pain diary of sorts so I knew when I had Po ain flares

5

Stephanie, I just saw this. Thank you for responding. That's what I ended up doing. The pain is very real; it's just not always present.