Epilepsy Foundation

Hi all,

Just need to vent and hope that you all can tell me I am not going crazy...sorry..


So, started with TC's 8/2009, put on Klonopin 1 mg at ER. Then after 1st Neuro up to Keppra 1500 mg twice daily, and Klonopin to 2 mg. Still TC's every few days, so DIlantin XR 100 mg three times daily and Requip 2 mg at night Klonopin to 4 mg at night. Sleep study showed no REM and 25 microarousals per hour. Now TC's down to 1 per week, 20 minute EEG showed Seizure L temporal lobe spread to frontal lobe on 12/21/2009, now on 4/12/10 I go back to University of KY inpt to tapper and come off all meds for VEEG.


SO, always, since child, sleep babble, cramps, thrash, kick etc, very rarely would walk or wake up somewhere where I didn't go to bed.


Last few weeks, strange things, I hear bells, whistles, alrams, birds, whisphers...neuro assured me with seizure activity from L temporal lobe this was normal to experience.


Last few weeks, sleep walking and talking has increased...poor hubby, but minor, other than did build fire one night, but in fireplace and I guess out of habbit of building fire every night, I did not burn down the house.


Then, last night. I had really bad bout of leg cramps while in bed, hubby and I watching "National Treasure". I fell asleep before the end, thats all I remember.


I woke up this am to cell phone ringing, man legs sore and stiff, like I did a 16 hr shift as nurse like i used to...anyway, told him I would wake up and get coffe and call him, so I did.


He said I babbled all night about "The Blue Man is HERE!", sat up in bed looking towards the doorway and whisphered, all he could catch was that the blue man was here and I didn't want to go with him. So Dave got me laid back down and went to sleep. Got up at 3 am, drives semi, went downstairs to fridge and was drinking milk straight from the gallon and for some reaseon turned to look at the calendar next to the fridge....in sharpie was written on the bottom page iwth the numbers "BLUE MAN HERE"...he dropped the milk and choked and recovered. Found same thing on a package of 9 volt batteries left on the island. Doesn't ring a bell to me, no dreams that I remember, no shows Ive seen lately. So I checked the calendar in the office upstairs, its there too, also written in the dust on the tv screen in the bedroom............what is this. How was I so precise, I mean why didn't I write on the walls?? The writing on the calendar in the office does go over onto the wall......But this is not routine behavior, I don't write on the calendars at all habitually.


I am scared, creeped out and all at myself. Thinking of locking myself in the spare room. I did have TC the other night, hit head on coffee table on wheels, so just goose egg with pinhole...but have done that before....I don't get it.


What scares me most is this, my great uncle, at 10 years older than me started these episodes in his sleep and it ended in early onset Alzheimers, however he never had seizures.


Could it be that now that I am or possibly am hitting REM I have a REM disorder, was not hitting REM my bodys way of protecting myself....or am I going mad???


I am affraid to talk to new neuro about this, but may call Dr M who referred me to the university...but sick feeling since he handed me over to DR F he will insist I call him....I am affraid that will land me in a nut ward.


THanks for listening guys....Take care

Tammy in KY

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Replies to This Discussion

I know exactly how you feel and I take Keppra as well and I have seizures in both temporal lobes. I have the weirdest experiences at night and sometimes I am awake. The other night I kept seeing people dressed in all metal. On occasion I can only see one color when I wake up in the middle of the night (people and all). I try closing my eyes and it won't go away. It is absolutely freaky and I do intend to discuss with my neuro when I go back. I notice that when I am more stressed I tend to have more of this unusual activity. I started walking a lot and it has helped somewhat. I just got tested for early onset Alzheimers because I thought the same thing because my grandfather had it and all turned out ok. They really feel it is a seizure breaking through. Please keep me informed as to what your neuro says and I will do the same.


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