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I have epilepsy- complex partial with occasional T/C .  Recently over the holiday I had an episode of difficulty speaking and right side facial twitching.  I went to the ER and labs were done- my dilantin level was low- but I take my medication- also take trileptal.
I had a generalized T/C seizure and when I woke up my hand continued to twitch.  I was diagnosed with simple partial status...I was given IV Dilantin and told that I needed to be in the hospital.  I was against it because of the cost...and told the doc that I had someone with me and would come back if there was a problem.
I remember certain things about the ER visit...but not everything....
I agreed to hospitalization- but was put in the Neuro ICU  for EEG monitoring....I had no idea that I would be in the unit...and cant remember if I was told or not.........
The neurologist covering for the holiday specialized in movement disorders..and my epileptologist was never consulted...After I was moved to the neurology floor...the nurses brought me my medication but the pills did not look like any of the ones I take at home!  I was smart enough to question this...why my pills looked different...one of the nurses pointed out Topamax....I do NOT take topamx and repeatedly told the staff this...BUT I was confused and have memory problems as well...so I just took the medication...The residents thought that I was on Topamax based on my computer record...I was prescribed this...but my doc switched drugs and told me to DISREGARD the prescription.
I cant believe that I did this (took the medication), over and over..but I thought that I was confused..I do have HUGE patches of my memory that are gone as I continued to have some seizures and was given meds to stop them- which further confused me  I did not recognize the dilantin- I have been on this for years and KNOW that I would recognize it...I questioned this as well...
Eventually the topamax disappeared and I got IV dilantin but my level went sky high...My vision doubled and I had trouble walking.  I was so confused and angry and possibly mean...I am not like this..
I ended up leaving the hospital AMA because I really thought that they were making things worse and I was not getting help...I don't remember getting home..I didn't know what meds to take and am terrified that I am not well.  I have memories of some things but not others.
My epileptologist was furious about this, told me what to take and told me not to worry..
I have really bad depression after seizures and am scared that I appeared crazy- even though I am NOT.
I am afraid to talk about this for fear that I will be judged.  My seizure doc told me not to worry about leaving AMA that I was not able to make decisions on my own in that condition.
I have family with me but they did not know what was going on when I left the hospital...Somebody..Anybody talk to me about this..Thanks
1 Responses
Avatar universal

Hi.  I'd gladly talk with you - because I went in status in 2008 after a year of uncontrollable seizures.  Do you mind if I kvetch?  Like you, I had arguments with my neurologist.  She thought I was "faking" my seizures, until I went to her office and had a seizure right in front of her.  My anger comes from her not believing me, and then subsequently, at the hospital, the doctors put me in a coma.  When I came out of it, I had amnesia, memory issues, fear......I didn't know the difference between reality and my dreams.  I can kvetch more.  I've been a guinea pig for about a year afterwards.  I had slight post traumatic stress syndrome - the video surveillance and constant nursing care really stressed me out.  I'm saying all of this not so much to compare stories with you, but I'm really just getting over my anger, fear, frustration and rage.  I've never felt so powerless and victimized before - and I've had seizures for 15 years.  
I had issues with drugs (I got a rash so severe that they transferred me to a second hospital).  I was in the hospital for a month.  So, if you want to complain, yell or just talk, I'm open to hearing and talking with you.  
I can relate to the "being judged" aspect, and "being crazy."  Some people won't know I'm having a seizure unless I tell them.  It was hard for me to hear that my neurologist didn't believe me-when I was having seizures so badly that the hospital doctors believed I had to be put into a coma.  I came *this* close to suing her...... but I won't bore you with that.  
I had memory issues too.  For me, it took the longest for me to sort out what were dreams, what was "real" (I'm referring to the months prior to and including the day I entered the hospital).  It's been an incredible journey.  
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