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

Wed, 01/28/2009 - 23:59
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 monitoring and can't r

Submitted by rosegirl on Mon, 2010-03-22 - 21:49
Has your doc suggested a MEG? I saw it in a newspaper article and mentioned it to my neuro. He said that it reads better than a normal EEG.

Re: What if you spend a week in video EEG monitoring and can't r

Submitted by cindyacarter on Wed, 2011-03-02 - 00:16

My 5 year old had a 5 day VEEG last week.  The third night, after hours of her heart rate spiking up and down prior to sleep, she continued to have heart rate fluctuations in her sleep.  She started her typical jerking in her sleep for about an hour or longer, then her heart rate spiked to 152 and she had full body convulsions that lasted about 2 minutes and almost caused her to fall out of the hospital bed.  The nurse came in because the heart monitor had alerted her, and saw Crystal having the event.  She thought it was definitely a seizure (as did I ... have seen my brother-in-law have grand mals), and explained the heart rate typically spikes during a seizure.  Also, she said she put in her notes that she thought Crystal was having subclinical seizures prior to sleep when her heart rate was spiking.  She had a couple smaller episodes following the first one.  The next morning someone came in to check the EEG wall unit in the room and another person to reglue a couple of electrodes on her head.  Her neurologist came in a little later, saying it wasn't a seizure, as the EEG was normal and only showed she was sleeping.  He said he watched the video and it didn't appear to be a seizure, but that she was having hyperarousal and tremors.  She frequently sleepwalks, sleeptalks, and has night terrors, so I already knew she had a sleep disorder and tremors, but am baffled that the two minutes of FULL BODY CONVULSIONS (which didn't appear to be TREMORS at all), didn't show up on the EEG???  This was our only event during the entire 5 day stay, and I am extremely frustrated that we still have no explanation for her two episodes of loss of consciousness in the last year (no one saw them occur, so we don't know if she had seizures or something else ... please read my profile for further background info).  The morning after the convulsions, when the day nurse came in and asked if we'd had any events, I told her about the full body convulsions, and she said "tonic clonics" as if the night nurse who saw the event had told her.  Have any of you had events like this occur and not show up on the EEG???  I am VERY aggravated that nothing showed up on the EEG from this event .... it was an extremely stressful 5 days hoping for an event, even though it scared me to death when she had the convulsions, as I've never seen her have any events like that before.  I've seen my brother-in-law have grand mals, and that's what it appeared to be to me.  Does anyone know ... IS IT POSSIBLE TO HAVE A SEIZURE AND IT NOT SHOW UP ON EEG?

My 5 year old had a 5 day VEEG last week.  The third night, after hours of her heart rate spiking up and down prior to sleep, she continued to have heart rate fluctuations in her sleep.  She started her typical jerking in her sleep for about an hour or longer, then her heart rate spiked to 152 and she had full body convulsions that lasted about 2 minutes and almost caused her to fall out of the hospital bed.  The nurse came in because the heart monitor had alerted her, and saw Crystal having the event.  She thought it was definitely a seizure (as did I ... have seen my brother-in-law have grand mals), and explained the heart rate typically spikes during a seizure.  Also, she said she put in her notes that she thought Crystal was having subclinical seizures prior to sleep when her heart rate was spiking.  She had a couple smaller episodes following the first one.  The next morning someone came in to check the EEG wall unit in the room and another person to reglue a couple of electrodes on her head.  Her neurologist came in a little later, saying it wasn't a seizure, as the EEG was normal and only showed she was sleeping.  He said he watched the video and it didn't appear to be a seizure, but that she was having hyperarousal and tremors.  She frequently sleepwalks, sleeptalks, and has night terrors, so I already knew she had a sleep disorder and tremors, but am baffled that the two minutes of FULL BODY CONVULSIONS (which didn't appear to be TREMORS at all), didn't show up on the EEG???  This was our only event during the entire 5 day stay, and I am extremely frustrated that we still have no explanation for her two episodes of loss of consciousness in the last year (no one saw them occur, so we don't know if she had seizures or something else ... please read my profile for further background info).  The morning after the convulsions, when the day nurse came in and asked if we'd had any events, I told her about the full body convulsions, and she said "tonic clonics" as if the night nurse who saw the event had told her.  Have any of you had events like this occur and not show up on the EEG???  I am VERY aggravated that nothing showed up on the EEG from this event .... it was an extremely stressful 5 days hoping for an event, even though it scared me to death when she had the convulsions, as I've never seen her have any events like that before.  I've seen my brother-in-law have grand mals, and that's what it appeared to be to me.  Does anyone know ... IS IT POSSIBLE TO HAVE A SEIZURE AND IT NOT SHOW UP ON EEG?

Re: What if you spend a week in video EEG monitoring and can't r

Submitted by Saamy on Sat, 2012-02-25 - 16:23

Hello Cindya,

 

My mom too is having  CONVULSIONS but the EEG & MRI both are normal. it has occured 3 times in span of 3months. We are not very sure what to do.....I am depressed...This attack lasts upto 5 to 15 min & she has no idea what happens to her.

Can anyone help me please??

Hello Cindya,

 

My mom too is having  CONVULSIONS but the EEG & MRI both are normal. it has occured 3 times in span of 3months. We are not very sure what to do.....I am depressed...This attack lasts upto 5 to 15 min & she has no idea what happens to her.

Can anyone help me please??

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