[tibbydudeza]

This is so awesome - thanks for sharing this - my daughter also has epilepsy, but it is fortunately controlled by medication.

It seems that stimulating the vagus nerve resets something to default in the brainstem when a cascade event is about to occur - probably shuts down the errant signals from propagating to the entire brain ???.

Do you know which lobe in her brain it happens ??? (my daughter has left temporal lobe)

[tempaway43355]

My child has Dravet syndrome so its quite major seizure activity and many different seizure types (tc, absence, focal, myoclonic). I think slightly more left lobe than right but its been a while since we had a full EEG. VNS is known to help with Dravet in enough cases that they were prepared to try the VNS.

The VNS can help stop seizures but also there's a sortof long-term effect from just having it firing every few minutes all the time, seems to re-train the brain in some way. I'm not sure if they really know how it works, just that it seems to help.

Another non-medication treatment that was very good for us was the ketogenic diet. Like, hardcore proper ketogenic diet, 4:1 ratio, prescribed and monitored by an NHS dietician. Every meal measured out by the gram. Its hard work but it did work very well. Its been properly researched - https://pubmed.ncbi.nlm.nih.gov/16146451/ https://pubmed.ncbi.nlm.nih.gov/25524846/ - for Dravet syndrome at least, keto is as effective as the best AEDs with fewer side effects.