Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

What if you spend a week in video EEG monitoring and can't record a seizure?

Wed, 01/28/2009 - 23:59
Topic: Diagnostic Dilemmas and Testing
My 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 ....

Submitted by seakats on Thu, 2009-01-29 - 01:53
I have simple partials and complex partials and when I spent a week in the video EEG unit, I didn't have a single seizure.  Frustrating, irritating, and emotionally heartbreaking.  Yes, the epileptologist (or neuro) can still make a diagnosis from his findings.  He found (with me) that my brain waves were showing abnormal results and the misfiring was always coming from the left temporal lobe of my brain.  I have 2-3 seizures a month on meds and am currently switching to Lamictal from Topamax.  So no, it isn't a complete loss when you don't seize in the VEEG unit.  I hated not being able to have that seizure and post ictal response to show the doctor.  I felt as if I'd never get the help I desperately needed.  But that VEEG has helped me and I don't regret having it done as I now have a diagnosis and know the why and how of what is going on.  If the VEEG hasn't given you the answers you need, keep pushing your epileptologist for more answers.  There are always more tests and you can always ask more questions.  I know the frustration of the "brick wall" syndrome.  Been there, done that.  12 is a tricky age as hormones are just starting and changing all kinds of brain chemistry.  I'm glad you found our website.  Keep in touch and let us know how things go with this.

Re: What if you spend a week in video EEG ....

Submitted by Aubster1 on Thu, 2009-01-29 - 20:24
In preperation for the very first EEG that I had done, my parents were ordered to keep me awake for 24 hours straight. Their main objective was to subject me to things that ordinarily would make me have seizures which in many cases was a lack of sleep.

Re: What if you spend a week in video EEG ....

Submitted by christineybean on Thu, 2009-01-29 - 20:40

Well I was at mine twice now for two weeks the first time and siz weeks the second time ( the second time it stressed me out so bad i lost my vision and they moved me to a new area) but it was a good experience and i go in for another veeg but only for a couple of hours and am fasting again and sleep deprived ( i did so many of those thats where i feel fruitless) but  they really are good to go to sometimes they will see abnormal things even if its just the little things they catch, in me they caught slowing ( i still dont know what that means but hey it was something)!!!!

 

I hope that this has helped keep us updated!

Well I was at mine twice now for two weeks the first time and siz weeks the second time ( the second time it stressed me out so bad i lost my vision and they moved me to a new area) but it was a good experience and i go in for another veeg but only for a couple of hours and am fasting again and sleep deprived ( i did so many of those thats where i feel fruitless) but  they really are good to go to sometimes they will see abnormal things even if its just the little things they catch, in me they caught slowing ( i still dont know what that means but hey it was something)!!!!

 

I hope that this has helped keep us updated!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.

Subscribe