THE COMPLEXITY OF PARTIAL SEIZURES! - Epilepsy Message Board

annika.64 · 02-21-2003, 07:24 AM

As I write this, I have just read Sekharp's and Bilbostuff's posts about their post-ictal experiences.
I have been searching for so long for people with nocturnal CPS's - I had been having them for 2 years before my doctors discovered what they were in 1999.
I have been on Lamictal & Clonazepam (+ the Epilim I was on before) and haven't had one CPS since December 1999.
But, for hubby and I, the 2 years (plus 1 episode in 1988 at the onset of Lupus), were a living nightmare.
It seemed to be monthly, and I would wake garbling in the night. Hubby would ask questions and my answers were incredible!! A cold shower brought be around, but I had terrible sensitivity, especially fingers and feet. A feeling of out-of-bodiness, dejavu's, terrible taste sensitivity - I could only eat boiled egg (or strangely enough, KFC).
I would be pretty knocked out for about a week, and then get on with life.
They discovered the problem with 24hr video monitoring for a week. Thankfully I had a seizure during my sleep one night which showed what was wrong. We knew that it was some sort of TLE. It amazed us that I could have the seizure but be sleeping quite peacefully while it was happening. Is that the case for others?
Anyway, straight onto the medication and Praise the Lord, not a one to this day.
Sorry for raving, but I am so glad to find that I am not alone in this world!!!!!!!
Thanks everyone.

Annie Kay

kayakmom · 02-23-2003, 07:36 PM

YOur story sounds so much like my son. He has nocturnals, some of which are partials. He occasionally has complex or partial seizures during the day but also in sleep. I can not tell when he has them except for the post ictal behavior when he wakes up. Aggravating. His EEG picked them up the first time. THis year a video EEG did not in 8 days, just lots of abnormal slowing and a tonic hand seizure one night. We will retest at some point. Hard to pick it up sometimes with scalp electrodes I am told.

Hope things go better for you now that you have pinpointed it...

annika.64 · 02-25-2003, 02:01 AM

Nice to hear from you, Kayakmom. I hope that you find a solution soon, and can get medication for your son. Before we had the drugs, life was almost unbearable as I'm sure you know.
I was very 'blessed' to have a CPS in hospital, since the neuro ward was closing for Christmas the next week, so it was then, or come back and experience that horrible glue on my hair all again. Oh, that was awful.
I see from your profile that you enjoy nature and music and are a teacher. Join the 'club.' Since the onset of lupus, I had to retire and now do private Maths tutoring at home. We are keen gardeners and all of this helps to take away from the severe feelings of lowness (that's not a word, but sounds good!)
Does your son also share your love of these things? I only hope that these sort of things will also help you to look outside the pain/frustation you are experiencing.

Annie Kay

kayakmom · 02-25-2003, 06:29 PM

Annie Kay, SO nice to meet you! Wish you were closer, my son could use a math tutor! I home school him, his love is Science, Nature, chemical reaction, travel...like his mum. I was a gym teacher at his school for a few years as well as teachers aide, sub, recess aide. We are currently watching the birds for sign of Spring.
I have Rhuematoid arthritis, they thought Lupus for a time. We also try to stay active to keep me healthier, kayaking, hiking, biking, daily walks.
We garden in the summer and study the insects and butterflies who reside there.
We see the neuro the 28th to see if we go back ot medicine and what tests are in store again for him..

Anna Marie · 02-26-2003, 09:23 PM

Quote:

Originally posted by kayakmom:
YOur story sounds so much like my son. He has nocturnals, some of which are partials. He occasionally has complex or partial seizures during the day but also in sleep. I can not tell when he has them except for the post ictal behavior when he wakes up. Aggravating. His EEG picked them up the first time. THis year a video EEG did not in 8 days, just lots of abnormal slowing and a tonic hand seizure one night. We will retest at some point. Hard to pick it up sometimes with scalp electrodes I am told.

Hope things go better for you now that you have pinpointed it...

How old is your son? My daughter is 3 and I think she's having seizures in her sleep. Her nero docter put her on terget, without even testing her. I have been telling her theropist for awhile, they are miising something. Well the other night she had what I think was a seizure. If I am right that will explain her unusual behavior sometimes. What are some signs of seizures in your sleep? Any advice would be great.