TLE & MTS can you relate???

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micki13

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Hi there!
This is my first post, so i am not sure what to start with.
I was diagnosis with TLE and Mesial Temporal Sclerosis in 2009. I have simple and complex partials. I also had a "new" seizure in May of 2010, which i had no Aura, horrible vision distortion, numbness in right side of face and arm. BF called 911 and of to hospital, was treated as if i was having a stroke, i remember very little. All test came back normal, including eeg, but i had recorded facial droop, altered speech and fatique. After 3 days was told it was a breakthru seizure. I haven't been the same since. My BF feels i had a TIA, but "he isn't the Dr" lol I have had at least 3 episodes of this kind since, but stayed home and rode it out (who can afford a 3day hospital stay for a seizure when ER will treat it as a stroke everytime???).
I had a VEEG a year ago and of course nothing happen on the recordings, my seizures don't happen when i am laying around in bed, so that was very discouraging.
Well that is enough for today, i would be interested in any comments you may have regarding anything i have posted.
I will add i am so tired of guessing what will my Dr say next.
Thanks
Micki
 
Hi Micki, welcome to CWE!

Has your neurologist weighed in on the recent seizures? If you don't already, it's a good idea to keep a journal of everything "seizure-like" that happens -- it can help you and the neuro figure out what's going on. Are you on meds right now? Just curious if your doc thinks the recent events indicate a change in treatment. The facial droop can be consistent with a TLE seizure.

Have you had any EEGs other than the video one? Presumably you had an MRI to diagnose the Mesial Temporal Sclerosis.

Best,
Nakamova
 
Hi Nakamova,
The Neuro i was seeing when it happened acted very wishey/washey on the entire subject as he had been for most of his treatment time (i moved and he was my new treating) since then i have changed and feel that this Neuro is taking a better interest, but we havn't talked much about that type of seizure just my seizures in general. I have done a journal several times and it has helped them with seizure types (i guess) but not triggers. At the time i was on 1200mg trileptal, it was increased to 2400 and Keppra added. (this happened in april 2010). New Dr. (august 2010) maxed Keppra with no results except terible side effects, then tried Zonagram and i only made it 10 days and stopped with even worst side effects. Now he wants me to try Vimpat, and i am not able to due to lack of $$, he is very understanding. He would like to send me for VNS/Lobectomy evaluation, but i at this point am not willing to go due to $$ and i am not very receptive to either option.
I did have an EEG when first diagnosed with MRI confirming MTS. 2nd and 3rd MRI also confirmed MTS as well as all 4 Neuros.
Thanks for the reply
Micki
 
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