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Old 01-12-2008, 01:21 AM   #1
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KerrieME HB User
Nocturnal epilepsy-Aura's memory loss

Hi,

I have experienced and been diagnosed wth Nocturnal epilepsy. It pretty much started after having children and the doctor put it down to severe sleep deprivation. I have maybe 1 a year but they really wipe me out!!! I know when I am going to have a seizure in my sleep as I have " aura's" usually twice in the two days previous. The Aura's for me are a strange sensation almost like a panic attack. I can still hold a conversation, but not very well. I feel them coming on like a big wave is about to hit and then I get a funny taste on the back of my tongue and have to keep tasting it ( making a funny sound with my mouth!!) Then an overall feeling of dread. Its awful. Does anyone else experience something similar?? My hisband tells me that is the exact sound I make just prior to having a seizure in my sleep!! I am lucky that my husband has always been asleep beside me when I have had a seizure and we worked out after a having a few that by calling the Ambulance and getting oxygen asap really helped my recovery especially my memory loss. That is the one thing that really gets me down is the memory loss. Some parts of my memory are just gone!!! I hate it when I see someone that I think I should know, but don't know where from or how long I have known them!!! Is this from the lack of oxygen during the seizure or from the medication-Epilim...

 
Old 01-12-2008, 05:05 AM   #2
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Sherri5186 HB User
Re: Nocturnal epilepsy-Aura's memory loss

I am not sure about everyone,but,my memory loss has
been caused by too many seizures,after alot of seizures,
especially really bad ones it can scar your brain,which in
my case has made me lose alot of my memory,I use to have
the best memory in my family despite the epilepsy,not any-
more though.Take care,Sherri

 
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Old 01-12-2008, 11:49 AM   #3
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PurpleRose HB User
Re: Nocturnal epilepsy-Aura's memory loss

Hi, Kerrie. Welcome! I just joined two days ago myself. This is a great Board! As Sherrie also said, you are not alone with the memory problems caused by the seizures and also the meds. And my auras are awful as well. Yours sound a lot like the ones I get, except for the taste in my mouth part. Back to the memory: it's horrible--there are so many things from my childhood that I can't remember. And even in my adult life, places I may have visited, whether or not I had ever seen a movie before (even though I may have gone to it 2-3 months ago!!), words to songs I've heard over and over (and the titles, forget it), who in the world I may have worked with at my job 5-10 years ago, when someone asks, remember so-and-so who was here about 5, 10, 15 years ago, and I haven't the foggiest idea who they're talking about. Doesn't matter how short or how long. It's frustrating. I hope it helps that you know you aren't alone. Debbie

 
Old 07-08-2008, 03:15 AM   #4
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Join Date: Dec 2007
Location: melbourne
Posts: 12
dollydidit HB User
Re: Nocturnal epilepsy-Aura's memory loss

Hi Kerry
I posted on here in Dec 07 my partner had been of his meds for about 6 months and had a g/mal siezure (nocturnal) and lost all memory for 10 days and now still has minimal memory of his life to date. He is now seeing a nuro and he seems pretty good however he thinks with some memory exersizes he might get a little more back but once its gone its gone. He also seems to think that there is not alot can be done to prevent memory loss in nocturnal seizures. He has just increased his tegratol to 500mg morning and night as the g/mals are more frequent since the big one in Dec. We are finding it hard to get any more answers than that and am to be honest feeling a little desperate to find out more. Had not heard the oxygen thing but am interested in looking into it more.
thanks
dolly

 
Old 08-14-2008, 10:37 AM   #5
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Location: Petaluma, CA, US
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CPMJohn HB User
Re: Nocturnal epilepsy-Aura's memory loss

Wow, guess I had to google the right term: nocturnal memory loss. Had tried others, like night time, with no success.
For a couple years, about 2003-2006, I had morning wakeups with no memory except my bedroom and my wife (fortunately). Everything else had to be rebuilt...year, day, my job (at home magazine publisher), etc.
Kaiser Permante drs. started me on a series of tests, from apnea, lumbar puncture, mri (twice), catscan, and inhouse eeg. Nothing suspicious except very slightly abnormal brain waves.
They finally found my more significantly abnormal brain waves by using an ambulatory eeg...worn for 48 hours. They started me on Carbatrol and I've not had a wakeup incident since (1.5 years).
However, my long term memory is shot. I cannot recall details about either personal or business happings from as. When family members sit around and talk about events that I attended, I can only remember fuzzy parts of them; the details are gone.
I don't remember getting married to my wife...14 years ago.
I will come back to this site again to reread all of the posts.
John

 
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