Video EEG

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Suman

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Hi Listmates,

My son's neurologist suggests doing a video EEG. My son has been on several AEDS - Keppra, Depakote, Lamictal, Zonisamide, Vimpat and now Briviact. The current Briviact at 50 mg times 2 is giving him a tonic clonic every 6 days.

Wanted to know if any of you had gotten a video EEG? Did it help narrow medications that could potentially work? Did it help in any other way?

-Thanks much,
Suman
 
Often the more typical 20-45 min. EEGs one has as an outpatient are normal if a seizure does not occur, so an inpatient video EEG is done in hopes of capturing a seizure and recording both the electrical and video recordings of what occurs. A video EEG is generally used to verify whether particular events are consistent with seizures electrically (ie. abnormal brainwaves consistent with epilepsy/seizures) and/or visually. I say "and/or" visually because often seizures do not produce abnormal waveforms but can be confirmed by video that the events are consistent with seizures. Sometimes a diagnosis can be made from a video EEG as to seizure focus, and from this determine if surgical removal of the seizure focal point is an option.

By analyzing both EEG tracings and video recordings, seizure type can often be determined thereby helping to identify medications to try, because some medications work better on TLE than FLE, certain medications are specific for absence seizures, or work better on partial rather than generalized seizures, etc.

I've had both the standard 45 min EEG and also an inpatient vEEG. My seizures are nocturnal but I just could not sleep in the hospital setting, and no events were recorded. I have a 48 hour video ambulatory EEG coming up in August, so am hoping that in my own environment I can sleep! Kids can sleep anywhere it seems, so I'm sure your son will do fine in this respect :)
 
Hi Suman,

I had a video e.e.g. done but I had the kind where they did surgery and put 7 electrodes directly on my brain to pinpoint the area of my brain that was triggering the seizures before I had my main brain surgery to reduce my seizure.
What surprised my surgeon is when they cut into me to do the surgery they found damage that was so deep in my brain the veeg along with the PET, SPECT scan and other tests didn't show of the damage.
Just like your son I've been on at least 10 or more different seizure meds and nothing worked so my Epileptologist did a DNA test on me where they draw a few tubes of blood and wipe the inside of a persons mouth with a q-tip. All of this is sent to the lab and they can find the amount of enzymes in a persons liver and see the persons body chemistry. Then they can match all of that up to the best seizure med with the least side effect or they can see if a person is drug resistant like I am. This is when my Dr. put me on the medical marijuana (CBD) and it has done wonders for me reducing my seizures to the lowest ever in my life. Wishing you the best of luck and May God Bless You!

Sue
 
Thank you Masterjen and Sue.

The neurologist suggests an in-patient video EEG monitoring. The NP advised us that it maybe a 4 - 7 days stay in the hospital depending on the capture of the seizure activity (I suppose).

On the current medication of Briviact (50 mg X 2), he has a tonic clonic once every 6 days. Like clock work, his seizures happen between 5:30 pm and 8:30 pm roughly 6 - 7 days apart. We tried changing several things, but the seizure pattern remains consistent.

Sue, I did ask our neurologist about the DNA testing. This is what he had to say - yes, we could go ahead and get this testing done though pricey. However, the science is not advanced yet that these readings can be interpreted correctly and a solid inference can be made. We will pursue DNA testing if everything else fails.

-Thank you guys - you're the best,
Suman
 
I'm going in for my second VEEG on Monday. The first one confirmed the area that the seizures are coming from. With the second VEEG they'll be adding a SPECT test. to further pin point the location. This will help decide the next step in treatment options. They were also able to take me off of Topamax after the first test. I assume this was because it showed no significant change after it was removed during the test.
 
Thanks Truegrit and good luck! I'm glad that they were able to take you off of Topamax.
 
A video EEG got me started on my meds which I use today and an ambulatory EEG helped get things straightened out years later when my body had changed. The ambulatory also disproved other disorders that may have been contributing. All positives.
 
Hi Suman,
I also had two inpatient video eeg's. They slowly wean you off of your meds so as not to cause a huge seizure as it doesn't show enough detail on the monitors. I had a few blips and could feel myself being less drugged and that felt wonderful!! I know it was temporary but the epileptologist was able to prescribe Depakote ER and continued with Carbatrol and the vagal nerve stimulator, based on where the seizures originated. I finally had a huge grand mal-tonic clonic and then was released with new meds. It took me a few weeks to recover due to my body being weaned off of the drugs and I'd been on them since age 12. It was difficult to get back to baseline but with the new meds and being able to call the doctors office for support was so helpful. I wish your son all of the best.

At the time they did the eeg they also did a neuropsychological which was so helpful when I went to apply for disability. It was a teaching hospital so they did that as part of their routine services. I was bored and a little scared of a seizure due to how long the postictal period lasts for me and I had to stop driving because even though the seizures were caused by taking away my medication it proved to me they were worse than I thought and turned in my keys so to speak. I felt very supported and learned a lot even though I've been dealing with epilepsy for 40 years. I don't know old your son is but I would say no to aspartame the sweetener as it causes seizures and fewer carbs help, too. Good luck and stay in touch. Jeanne
 
Update..

My son had the video EEG done last week, Wed-Mon as an inpatient. He was stripped of off his meds by Friday (50 mg times 2 of Briviact, 50 mg Zonegran and 50 mg Vimpat). He had a seizure on Saturday, a tonic clonic.

So now he's back on Keppra at 500 mg twice a day, along with Seroquel 50 mg twice a day, and 1000 IU Vitamin D and 200 mg twice a day of Magnesium Glycinate.
We could not bear to see our son have a tonic clonic every 6-7 days, keeping him safe was an ordeal, and we decided to put him back on Keppra, the medication that had controlled his seizures in the past.. of course it came with rage.

It's been an extremely slippery slope and we somehow continue to slip further and further into an abyss whose depth is unknown..

Thanks for reading!
 
Sorry to hear about the tonic clonic. One of my biggest fears when I started Keppra was rage. Luckily I haven't had that problem. Are they going to start looking for other options?
 
Truetgrit,

My son has been on several meds the past 4 years. With the increase in tonic clonic seizures, we wanted to put him on a med that worked to control seizures. I think we are medication paralyzed - don't want to risk putting him yet another AED which may or may not work. So, not looking at other options for now. Gotta deal with the rage!
 
Suman, does your son take a B6 vitamin? (sorry if this has already been asked). It can help some people with Keppra's mood-related side effects.
 
Thanks Nakamova. I have just been reading and hearing from parents that P5P works for some individuals with mood related issues and autism. We will begin with a small dosage of P5P.. wait and watch!
 
Update:
I have ordered the P5P, it hasn't arrived yet.

Since he came home from the hospital and being on 500 mg Keppra twice a day, he had a myoclonic on Sunday afternoon (6 days after being on Keppra), and today after 10 days, he had a tonic clonic this morning. We were not around him when this happened, we found him fallen in the kitchen.

We are not sure what is happening? Feel so devastated that we aren't able to support our son.

-Thanks for reading,
Suman
 
How frustrating. :( Is there any leeway to increase his med doses?
 
Thanks Nakamova. That's exactly what the NP told us.
We have 2 problems with the higher levels of Keppra - One is rage, and the other is sleep. Somehow Keppra tends to cause insomnia for him. He's already on 50 mg of Seroquel twice a day. We are back to square One..
 
How do your son's docs feel about CBD oil?
 
Nakamova,

We did just casually ask about CBD. The neurologist advised that at this point, CBD oil (1000 CBD:1THC) has been successful in treating 4 types of seizures (Dravet, Lennox Gestaut and 2 others). My son has generalized epilepsy and this type was not mentioned by him. We haven't researched where to get this pure form of CBD though and we are thinking this will be mighty expensive too!
 
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