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What if you spend a week in video EEG monitoring and can't record a seizure?
Wed, 01/28/2009 - 23:59My son is 12 yrs old with focal, complex partial seizures and tonic clonic sx. He has had a PET, MRI, and several EEG's. We went to an epilepsy center twice, three months apart, for video-EEG monitoring to try to locate the seizure focus, to see if he might be a surgical candidate. Each time, we were there for 8 days, totally off meds, and he never had a seizure. After the first trip, he was taken off Trileptal and Keppra because the doctors thought the Trileptal might actually be making him worse. (He has sx about 2-3 times a month and misses a day or two of school each time.) He was started on Topamax, but still has the same number of sx. Then we went for the second try. After that failed, he was returned to Topamax and Lamictal was added.MY QUESTION: Is there any other way to see if the sx are coming from a localized area than an ictal EEG? If you can't get an ictal EEG, do you just go home and suffer, and stay on drugs forever? (By the way, his inter-ictal EEGs show spikes on the left side, the PET shows hypometabolism in several lobes on the left side, and his sx simeology indicates a left-side start to the seizures. The MRI showed left ventricle larger on left than right.) We feel like we have hit a brick wall in trying to figure out what to do for him.
Comments
Re: What if you spend a week in video EEG monitoring and can't r
Submitted by baker2 on Sun, 2012-02-26 - 10:38
Yes it is possible to be having seizures even does not show on eeg. I have been throughthis myself and had one and nurse seen itcomming and the drs told me there was nothing. I have been told by the epilepsy center and and old murse at emergency room I do have both granmal and partial seizures.
Re: What if you spend a week in video EEG monitoring and can't r
Submitted by celee on Tue, 2012-02-28 - 12:27
Saamy,
What a frustrating position for you and your mom to be in!
Have the doctors put your mom on any anti-seizure medication? I can tell you that they may not, if her EEG's are normal. But, it IS possible to have epilepsy with a normal EEG. What have they told her to do?
I do not think it's possible to have a seizure, while hooked up to the EEG, and have the EEG not show anything.
My son's problem that I originally wrote about it that he had at VIDEO EEG (they have a camera on you to record your outer movements and the EEG to record your inner brain activity), but never had a seizure while he was hooked up. It sounds like, since your mom have had "only" three episodes in three months, it would also be very hard for her to "catch" a seizure on camera. If she starts having them more, that might be something you could try. Depending on where you live you might have to travel a little bit for that, and it's expensive. I don't know your insurance status.
I know how hard it is to worry about when the next attack might be. Very, very stressful. Be sure to insist that the doctors take you seriously and tell you what to do, and what to do next - don't let them off the hook.
There is also something called nonepileptic seizures. As I understand it, these don't come directly from abnormal electrical activity, like epileptic seizures. Before you read this article I have linked to, understand that these seizures do NOT come from a person "faking it". It is a real problem.
Good luck to you and your mom. Let me know of anything new you find out.
Celee
http://my.epilepsy.com/articles/ar_1112967056
Saamy,
What a frustrating position for you and your mom to be in!
Have the doctors put your mom on any anti-seizure medication? I can tell you that they may not, if her EEG's are normal. But, it IS possible to have epilepsy with a normal EEG. What have they told her to do?
I do not think it's possible to have a seizure, while hooked up to the EEG, and have the EEG not show anything.
My son's problem that I originally wrote about it that he had at VIDEO EEG (they have a camera on you to record your outer movements and the EEG to record your inner brain activity), but never had a seizure while he was hooked up. It sounds like, since your mom have had "only" three episodes in three months, it would also be very hard for her to "catch" a seizure on camera. If she starts having them more, that might be something you could try. Depending on where you live you might have to travel a little bit for that, and it's expensive. I don't know your insurance status.
I know how hard it is to worry about when the next attack might be. Very, very stressful. Be sure to insist that the doctors take you seriously and tell you what to do, and what to do next - don't let them off the hook.
There is also something called nonepileptic seizures. As I understand it, these don't come directly from abnormal electrical activity, like epileptic seizures. Before you read this article I have linked to, understand that these seizures do NOT come from a person "faking it". It is a real problem.
Good luck to you and your mom. Let me know of anything new you find out.
Celee
http://my.epilepsy.com/articles/ar_1112967056