My intro....finally!

[zbird]

Hello to everyone. I am finally posting my intro post (it only took me 2 months to do one). I tend to be a bit of a procrastinator.

To my story... I had two febrile seizures as an infant and was placed on Phenobarbitol for a bit. It made me really hyper, so my mom stopped the meds. I was seizure free for a very long time (about 30-35 years?, maybe more). I started having auras very sporadically, where I would get this welling up feeling, then an awareness that "it" was starting again, my tongue would feel thick, I would have a metallic taste in my mouth and my scalp would get tingly and numb (like the old egg crack on your head thing we used to do as kids). I would also get the deja vu feeling, usually with the same memory and often accompanied with the same song. It's very hard to explain to people who don't understand, but I know I've seen posts here with the similar experiences. These episodes only lasted only 15 to 30 seconds or so, and I would always try to "talk" my way out of them by saying "no, no, no, no... stop!" I had these for many years (couldn't tell you how long because I was trying to ignore them). I didn't seem to have any after effects from them. I remember about a year ago having an episode at work where I had an aura then got a little confused and had a hard time trying to say anything coherent. It was very frustrating. I think it was around that time that I started doing research on what was happening. I realized that these episodes were most likely simple partials but again, didn't do anything about them, mostly because they seemed pretty benign and I didn't want to have the old "pre-existing condition" insurance problem. Well, that all came to a screeching halt last May 19th when I was in bed watching TV when I felt the aura coming on but didn't have time to try to stop it. I had my first adult tonic-clonic episode. Freaked out my husand royally! He said that I stuck my arms straight out with clenched fists, did the jerking thing, frothing at the mouth, etc. Next thing I remember was coming around to my husband and the friendly EMT standing next to the bed trying to get me to move onto the gurney. Long story short (too late!), I ended up in the hospital for a couple days (CT scan, MRI, EEG, sleep-deprived EEG, all normal). Released with a script for Keppra which I didn't fill because I never talked to a neurologist, just a hospitalist. Made an appointment with a neurologist a couple weeks later, then filled the script for Keppra after he answered my questions and I started to come to accept the diagnosis of E. Wiped out on the Keppra for about a week, but then my body adjusted. Now on 500 mg bid and have had good control. I have other questions, but will put those in other posts as this is turning into a book.

Anyway, I love this site, have been lurking for two months and am grateful to see that there is a site where people understand and are more than willing to help total strangers.

[RobinN]

Hey zbird - very glad that you decided to join us.
I agree with you. It is a great site, and a comfort to know that others understand.

Have you been able to be seizure free since last May? Glad the meds have worked for you.

[zbird]

Hi RobinN. Thanks for the welcome. As far as I can tell, I have been seizure free. I haven't had any episodes like I had been having and definitely have not had any tonic/clonics. I have been getting the tingling scalp feeling fairly often and have been getting these very brief vivid "flashbacks" of very detailed memories (not traumatic). I don't know what these are, but will mention them to my neurologist at my next appointment.

So, I would say the meds are working well, with minimal side effects. I do have some mental fogginess/memory issues which are annoying but bearable. From the info I have read here, I decided to add a super maxi B complex and magnesium supplement (I had some muscle twitching).

[Nakamova]

Howdy ZBird, welcome to CWE!

I'm glad the Keppra is working for you. I hope the magnesium and B complex take the edge off. Any idea about what triggered either your auras or your t-c? In my case the tipping point seemed to be a combination of fatigue, low blood sugar and aspertame.

[zbird]

Hi Nakamova.

The magnesium and B complex seem to be helping. As far as the trigger, it's hard to say. I had been anemic and chronically sleep-deprived (not anything new). The t/c happened when I was in bed on my back and relaxed. All of the partials happened when I was either sitting or standing. I don't know if position had anything to do with it or not, but position seems to be the only thing that was different.

Thanks for the welcome. I feel very comfortable here and appreciate all the help and feedback from everyone.

[RobinN]

From what I have read it can be 4-6 hours following eating something you have grown sensitive to. I also view it like a block castle... one too many can bring you crashing down.
www.dogtorj.com has a lot about the subject on his site.

[Nakamova]

There are other factors that can affect when a seizure occurs as well. I don't think it was a coincidence that I had my first t-c immediately after I had filled out a form with my contact information (I was at the realtor's signing my rental agreement). I think my brain hung on just long enough to get that stuff on paper before going haywire.