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So there is reticence to share our results. I'd just being interested in the numbers that friends got during a VEEG and daily with a VNS ( mainly the Auto Stims) - allied to how often it goes off and what they threshold is? (For instance I'm on 1.1 minute and 20% threshold now. Started on 5 minutes and 40% threshold. This is the sort of place where we could get an idea of whether we have typical results and whether those results can act as calming.
It's remarkably infuriating when they use terms such as ictal events and attacks rather than seizures. Did I have 102 focal aware seizures during the 96 hours? The likelihood is yes as I am described as having severe focal epilepsy with frequent seizures. It seems crazy though, when you hear of people, equally sick, struggling to get a seizure over 5 days with their meds being withdrawn.
No. The eeg recorded only 4. however I recorded 50 but it turned out what I was recording wasn't the seizures then later on I worked out what I should have been looking for during the test.
Technically I think the abnormal activity is classed as seizure activity but there is a difference between abnormal seizure activity due to a tbi and seizure activity due to a seizure. If it is due to a tbi then the activity won't change and remains abnormal more due to the injury even if your seizure free.
The International League Against Epilepsy (ILAE) describes a seizure as "the transient occurrence of signs and/or symptoms due to excessive and/or synchronous abnormal neuronal activity in the brain; epilepsy is further defined as a disorder of the brain characterized by an enduring predisposition to seizures and the neurobiological, cognitive, psychological and social consequences of this condition." Yet even here, if you question what constitutes a seizure, few will say a transient sweat or chill does. It's a shame people here, when they have a VEEG at an EMU don't get a simple paper with full results. This is the NHS (A private part of the full report)...
@A MyEpilepsyTeam Member That's the downside of being in a public system. I did try to request it the second last time I did one as it was a new type of at home 3 day video eeg. I couldn't get the report, but I still got all the information I wanted, but it meant I did a very detailed sit in appointment. I then had a follow up the next year same test and the results were basically back to what I was getting 10-20 years ago. technically not all clear but it's not seizures its just activity that comes up from the TBI. Plus I don't get any auras like I was getting last time.
I will admit I put a lot of effort in to work out what was what and what to look out for when I was at my worst. I'm almost 2 years on and I still don't get any of the aruas that I was getting.
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