PANIC: I don't know what to say to the neurologist

Please help!

I should have written this days/weeks ago.

My first appointment with a new neurologist is tomorrow. That should be great news, but these days I find specialist appointments extremely overwhelming.

After 3 years of this not yet diagnosed facial pain, I have the chance to perhaps get some definitive answers. Life dosed up to the eyeballs on Gabapentin, Tegretol & others is no way to live.

Yet that is the problem: whenever I get to tell someone about the hellish circumstances of these years, I go to pieces. I find it completely overwhelming to try to put into words my current quality of life.

To add to my anxiety is the memory of the 1st specialist I saw - an ENT - who got quite grumpy when I struggled to describe the situation. I didn’t make much of an impression on an earlier neurologist either.

I’ve tried writing a script (I think it is the Meds that have wrecked my recall and verbal abilities) to no avail. I end up with an essay.

I can’t tell what is important or not.

It feels like my future rises in this. I am terrified.

Can anyone offer any wisdom here?

P x

Hi. Penelope.

I have not had much experience as most others as I've only had facial pain for about 8 months now. However, I wanted to give you some encouragement. I have felt the same way as you describe at several doctor appointments. I think that these docs you've seen would probably not have been able to help you much anyway regardless of how eloquently you could have stated your pain issues because they obviously don't care about their patients. I pray that this neurologist will be different.

To my appointments, I take a notebook that has my timeline of important events (ex. When I first started having pain, the treatments I've had, huge pain increases or decreases, etc.) and a list of medications and treatments I've tried and their respective efficacies.

Maybe if you aren't sure of what is important to say, you can ask your new neurologist what information is most important to him/her to have in order to make an accurate treatment plan so you can have some prompting if you need it.

I will say a prayer that all goes smoothly for you tomorrow.