I've been off for a few days and been meaning to post a little update. Thank you so much Candy for looking out for me. Everyone on the site has been very kind and for that I am incredibly grateful.

I saw the doctor ('ll call him Dr Clooney because, he's handsome) on Thursday and he said I'm having focal seizures. Simple AND complex partial. He said the record for my latest emergency room visit sounded like a simple partial seizure. He did not have any ideas about how that fits in with my TN, but wants me to take a coronal cut MRI (brain and cervical spine) and see him again in December. He promised not to make me wait for results, so I'll know whatever he knows as soon as he reviews it. My last coronal cut MRI was in March of this year so at least there is a base line for him to review to see if there has been any damage done. In March I didn't have any lesions, but my doctor at the time (Dr Sneakers) did not look at my spine.

This visit with Dr Clooney was an odd experience. He was nice enough. But I did get the overall feeling of, " Hey you're epileptic and as for all that other stuff, who knows? Here's some new meds. Off you go!" There also was an odd moment where he turned to my wife and told her if she ever noticed me having an absence seizure to make sure I was safe and to keep her distance because people in that state can become psychotic. Awesome. Needless to say, it's become our running joke. Pick up your shoes and put them in the closet where they belong. We don't want me to become psychotic now, do we? LOL!

"Molly, you in danger girl!!"

-Oda Mae Brown aka Whoopie Goldberg in


I'm being weaned off Tegretol and trying Vimpat. I've been warned insurance only pays for it if the patient has tried another drug first. Considering I meet the criteria, I hope it will be covered. Else it will be $600 a month. I have a one month supply, courtesy of Dr Clooney. Apparently it's a new class of drug that selectively only blocks sodium channels that have been open longer than normal. If the brain retrieves data, the channel is open the appropriate number of milliseconds - that's ok. If the brain is seizing, the channel is open long enough for the appropriate compounds being sought to bind with the drug - that's a block. That's my very rudimentary understanding of how it works. I don't know if it will work well enough for me to eliminate "the stupids". I should know in about 3 weeks.

For now I'm trying really hard to keep myself from mourning the things I currently can't do but hoped I'd do again, like drive, take a bath, or surprise my wife with a nice home cooked meal when she returns from work.

I don't think doctors realize that most of us have a multitude of problems and we are seeing a doctor for each one of them. I get so tired of them just handing us prescriptions and expecting us to just totally trust what they are telling us. Most of the news they give us about TN is not real encouraging, and it sounds like you are not getting too much good news about everything else that is going on with you.

Know that I am a worrier by nature, and when I didn't see a post from you, I hoped the reason was good, but wanted to make sure you were okay. I know you have a ton going on right now. I hope this next week goes better for you.

Spicywolf, thanks for your update! Love your sense of humor btw!
Dr. Clooney hey?
Well you take care of you, and one day at a time right?! I’m part of the no driving club too…( it sucks) due to my vertigo and meds, it’s been a year…ugh!
I hope this new med helps and that the upcoming MRI will have some info as to what’s going on.
Thinking of you, in the meantime try to keep the psychotic stuff to a minimum ; ) your poor wife…lol I’m happy that you’re able to laugh about it, but know that I know you can cry too…this too shall pass girlfriend! :slight_smile:

((( hugs )))