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1 surgery down, now another to come........

Thu, 01/25/2018 - 14:23
So I was originally diagnosed with Complex and simple Partials back in 2007. I was one of those lucky ones that went in for discussion for possible surgery in January 2008 and ended up going in for my Right Front Temporal Lobe resection by the end of May 2008,, 5 months is pretty good. Over the years, I have continued to have auras and am on 3 different medications, all of which I am maxed out on: Lamictal - 800mg. twice daily Vimpat - 400mg. twice daily and now Briviact - 200mg. twice daily I was until just recently on Keppra - 3,000mg. twice daily, but they replaced that with the Briviact just about 2.5 weeks ago now. I was referred back to UCLA medical after my neuro tried me on Aptium and ended up having clusters of auras within a 4 hour period rather than 1 - 2 in a week prior. So he sends me back to UCLA and they are trying to figure out why I am still having these seizures. I went in for a VEEG and let me tell you, I never really knew how much the meds were working until this VEEG and being totally off meds. I was having 3 or 4 seizures a day while there! They were not getting good readings from the EEG and have now decided that going in for an SEEG would be best. You know, drilling holes into my skull and inserting the probes actually into my brain and staying that way for at least a week from what they have said. Once they find all the information needed, they go back into O.R. and remove all the probes (so I don't know if that constitutes surgery #2) and start planning on the next surgery for another resection - surgery 2 or 3 to hopefully get this crap out of the way. crossing my fingers on this. Oh! I also get to go to a new scanner (for me at least), the MEG. I will have to travel to San Francisco for this 2 hour procedure. Oh the things we have to do for all this hopeful correcting of epilepsy. I should be able to update as I go along. Racer

Comments

And I checked,I am starting

Submitted by RacerX35 on Thu, 2018-01-25 - 14:23
And I checked,I am starting Briviact at the max dose allowed.  Ugh!

I just started taking Brivact

Submitted by birdman on Fri, 2018-01-26 - 19:45
I just started taking Brivact about 10 days ago.  I'm taking 25mg twice a day and I'm supposed to increase to 50mg twice daily next week.  I've been more tired and had some vivid dreams at night, but I have not yet experienced any of the depression or other dreaded side effects it can produce.  What's the max dose allowed?  Keep me posted on your Briviact experience.

Hi Michael, so sorry I haven

Submitted by RacerX35 on Fri, 2018-04-13 - 16:27
Hi Michael, so sorry I haven't replied.  I assume that you have been on Briviact for awhile now.  It was good that they started you off light I think.  Like I had said, they started me off at max dose.  It has definitely helped, I have not had any major issues since it was added to my Vimpat and Lamictal.  Hope it's working for you too.  And the MEG ended up taking 3 hours and two of the electrodes were at the very back of my head and started hurting since all the weight of my head was resting on them.Later,Racer

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