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Lucille

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Hi

Our daughter has had absence seizures since she was at least 12-13 months old. We found out a few years ago that she also has EMA or Jeavons syndrome. We were told that due to her type of seizures she is likely to have a tonic clonic in her future. She has begun to have what seems to be an aura and/or a simple partial seizure activity. One very short a few months ago which left her tired, fuzzy, and low energy. She did not lose consciousness.
Last evening the same thing happened but was longer, much more activity were she first became light headed, dizzy, felt as if she were going to pass out/fall down, sick to her stomack and then stiff in her arms and uncoordinated. She needed help to sit but she was very stiff and I had to put her on the seat as she could not locate the seat on her own and then I laid her down. She saw the room and me break up like the tv on a bad station and the images began to look as if we were broken into small puzzle pieces, dizzy, weak and could support herself.

I was wondering if anyone has experienced an aura and then a simple partial seizure/complex/tonic clonic. Everyone's experience is so unique but the text books are less flexible.

Thank you!
 
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Hi and welcome to CWE.

I hope you find this forum to be of help to you and your daughter as it has been for me.
 
Hi Lucille, welcome to CWE!

Auras are the same as simple partials. They call them auras if they happen to precede a longer seizure with greater loss of awareness/consciousness -- which is a relatively common experience.

Were there any obvious triggers for the partials your daughter had?

Best,
Nakamova
 
Hi,
Hmm, we think the trigger was washing her face. She was opening and closing her eyes about four times and then the aura happened and she tried to sit with my assistance, her arms and body was stiff while I tried to maneuver her onto the seat. She had no control when sitting. She would have missed the seat. And then I lowered her to the floor where she was still disoriented for a couple of minutes. I would say it lasted about 5 mins total from beginning sensation. To getting up with assistance. She could not walked steady alone. She does have photo sensitivity, with the ema. But the last time she had a short and less invasive aura we were at the store. She was tired after with an upset stomach and light headed but no stiff muscles or as much disorientation. It it common to be so sleeping the next day and slower to respond?
Thanks!!
 
yes, a seizure can take a while to recover from. It's also possible that she's having seizures at night that are affecting her sleep. Has she had a sleep study done?
 
Thank you Nakamova,
Her last in-patient EEG was for two days and they said at that time she did not have seizures at night. However, the one done two to three years before showed she did. The huge difference is that she was taking zarontin at the time of the 2nd test. However in the hospital there is no stress of homework, etc. so I believe it is possible she may be having seizures at night. She is waking after 3-4 hours of sleep with insomnia and that just causes more seizures during the day and with school and homework it is just an overwhelming cycle that catches up to her at different times during the week.

She does have absence seizures during her waking hours which causes her to always be exhausted.
Thank you again for your help :).
 
Oh yes, thank you for being so thoughtful! Our daughter tried the Ketogentic diet when she was nine at Stanford. She lost eight pounds the first day and a half. She was already slim. After two and twenty pounds lost she completely broke down. She refused to eat anything. I tried to make it interesting but we never ate processed hot dogs so that was never an option she wasn't into sweets so the strawberry "ice cream" only worked for three days. She has refused to try the modified diet. She won't touch anything with cream. It was only two weeks but she still had break through seizures probably not enough time on the diet and the stress. She has intractable generalized seizures. The diet might slow them down but she will probably always have them due to her seizure type. But, the good news is that she is a model student a great kid. Thoughtful and caring. Her seizures were nearly every few minutes to seconds for many years. She has learned how to compensate and how to have fun/carry a conversation through the seizures. Zarontin has helped a lot, they are shorter and they are not every few minutes except on rare occasions now. However the simple partials are new, scary and another hill to climb. I sincerely thank everyone who has helped us understand what it means to have the partials, etc.
Be Blessed!
 
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