Neurologist Appointment and other things (marathon for epilepsy!)

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
691
Reaction score
0
Points
0
I haven't been active here lately because the past few weeks have been super busy, but I guess I would let everyone know how I'm doing. First, I did my marathon on Sunday for the epilepsy therapy project. It was great - and the dinner was great. It was so cool to get to talk to other people dealing with the same thing as me. What a great group of people. It was also kind of cool passing people with the Epilepsy Therapy Project slogan and logo on the back :) Now I can hardly walk because my foot hurts so much, but I still don't regret the marathon (besides, you're supposed to take a break after a marathon anyway!)

Next is the not-so-good news. Went to see the neurologist yesterday, and he's concerned that I'm still having about 3-5 short auras during the week (I told him they usually come in clusters). Now he's wondering if some of them aren't seizure activity since I said I get anxious, but I also get the deja vu, so he's thinking some of it might just be anxiety. I guess anxious wasn't a good way of explaining it to him... more like my heart rate increases after the deja vu then I get the sweaty palms/heart rate increase, and it lasts for a short period of time and goes away. The past week or so has been especially active (even when I was on the phone with my nurse case manager yesterday I started getting a partial). Probably as a result of travelling between here and Germany, and then three days after I get back, I went to run the marathon (though I was getting partials in Germany too).

Anyway, my neurologist wants to do a 3-day ambulatory EEG to make sure it is seizure activity before messing with my medications. I said knowing my luck, I won't have anything during those few days, but he says if I'm still having 3-5 auras a week, that there is probably still some activity going on. Anyway, because I'm still having partials, he wants to wait until after the EEG to allow me to drive :( So looks like that won't be until at least January when I have my follow up. Oh well, I guess I have gotten used to not driving at this point anyway... Except living in upstate NY in the winter, I would like to be able to drive. Oh well - safety first!
 
Awesome job completing the marathon! What an accomplishment! And I am hopeful you will get some questions answered soon! Congrats again!
 
Wow, congrats on the marathon!!!!

Good luck with your ambulatory, I hope you find some more answers!
 
Congrats on the marathon! That's awesome! I hope your foot feels better soon.

Your symptoms do sound pretty clearly like seizures, so it seems like the ambulatory EEG may be overkill. But I guess it's also good to be cautious with meds and not increase them unnecessarily. When will the EEG happen?
 
Yes congrats on the marathon!! I'm going through an Ambulatory EEG right now. It so much better than being in the hospital. I wish you luck!!
 
Congrats on the marathon.
Good luck with the Ambulatory EEGs
 
Thanks everyone! The EEG will be on the tenth. We shall see what comes of it. Nakamova, you are right, I know the difference between general anxiety and seizure activity, but as we all know, sometimes it's hard to explain it well when you need to (of course I would experience one AFTER the visit that I could have explained perfectly).
 
Back
Top Bottom