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I’m about to do mine in a couple weeks and want to know how tolerable it was/wasn’t for you. What would you say was the hardest part?
@A MyEpilepsyTeam Member
I didn’t have any issues with sleeping. They’d like to see as many seizures as possible so they can collect more and more information about your seizures. That’s why they even take us off our medication in hopes we have more seizures. That didn’t seem to increase my seizures though. I don’t have any triggers for my seizures so I basically just lied in bed for a week. Later on I went on to have a surgical EEG. There’s nothing to really be afraid of
I’m more concerned with the sleep deprivation part. Being sleepy just sucks…and my focal/aura seizures basically feel like an overwhelming amount of fear that potentially lead to my grand mal ones. Was there an estimated number of seizures they’d like you to have during the stay or just as many as possible? And were they trying to trigger specific seizures or just the grand mal ones?
The Dr’s were pretty frustrated during my 7 day EEGs . Me brain fought tooth and nail. They had me down to almost nothing on meds.
I would have seizures . But not big ones that they wanted me to have.
My Dr. came to me asking if I want any alcohol or something that might trigger my seizures.. I was craving Regular Dr.Pepper or Mr.Pibb . Regular pop triggers my seizures. I have to drink Diet pops if I want caffeine .
It worked . I finally had a large convulsive seizure. It took 5 or 6 hospital staff to keep me from rolling of the hospital bed. The safety bed rails were even raised.
A really tough part with EEG’s was using the restroom as nurses had to be in there watching me. Plus I wasn’t allowed to get out of bed without an alarm going off.
It sounds like you're preparing for an inpatient video EEG monitoring stay — that's a big deal, and it's completely normal to feel nervous about it! While personal experiences from others can vary widely, here's what's generally known about what to expect.
During this type of monitoring stay, the goal is to capture actual Show Full Answer
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