Wow, you are dealing with a lot. No wonder your brain is working overtime (grin).
The EKG of the brain is an EEG, but we know what you mean. I recall the name, but can’t even try to spell it, sorry.
When my son was about 14 and suffering from Epilepsy (E for short), we went to an E specialty hospital in St Paul, MN. Part of the testing was they had him in the E ward, hooked to an EEG for a week trying to record the brain activity and where it was centered when he had a seizure.
It was interesting and scary to watch all of this. In addition to EEG, he was video monitored and had audio with the tech who monitored the dozen or so kids in the ped ward. Allen was an active kid, so he was bored silly being tethered and mostly restricted to his room and the small commons area they could go to.
In his room also was a computer monitor, with a video insert of what he was doing at the time of the EEG recording, showing his brain activity. It was like watching the seismic tapes they do during an earthquake!
Allen learned pretty quickly that he could raise an arm and get one pattern, raise the other or both and see another pattern, cough or talk or roll over and still different patterns. The one he had the most fun with was GRITTING HIS TEETH. The patterns exploded all over the place. It looked similar to when he was having a seizure, so very quickly the tech would call over the speaker “Allen, are you ok, talk with me.” And when he did, the tech would know he was not having a seizure and would say “Allen, STOP GRITTING YOUR TEETH.” (The other game he played with the techs was he could get up to go to the bathroom in his room. When he would come out, he would go stand under the TV, which is where the camera for the room was mounted. He would get so much enjoyment out of watching his monitor and watching the camera /image scan from side to side, up and down, searching the room for him. Then the Tech would say “Allen, I can’t see you…”)
Anyway, back to your concerns…
I’m no medical expert, but if you have abnormal (excess) brain activity, that’s no different than having E. Uncontrolled brain activity is what I think triggers seizures. And there are many different presentations of seizure, not just the grand mal kind.
My son’s seizures were what I called “Zone Out Seizures” that started when he was a teenager. Officially, they are called complex partial seizures. You could be talking with him normally, he might suddenly turn his head like he saw something, then he was GONE. He couldn’t talk, he says he could hear us, but if you gave him a simple command, like “say ‘dog’, raise your right arm”, he not only could not do them, he wouldn’t recall what we had asked when the seizure was over. He had that 1000 meter stare of a druggy also during and after the seizure. Most of his might be 30 seconds to a couple of minutes, then he would slowly “come back”.
He had seizures during meals with friends and no one but us even noticed that he had one. They were so subtle! I tell you this as it’s possible in my mind that your feelings during high emotions might actually be seizures.
There are many anti-S meds out there and it’s not uncommon that one med won’t work or has side effects for you. Drs have a path they take to treat different kinds of seizures, but it’s far from “take this med for this type of seizure.”
I didn’t follow your comment about “senior neurologist”, but I’m assuming you mean “very experienced”. Have you followed up with him since stopping the meds? Again, I ain’t a medical person, but it might be good to have a followup EEG to see if it matches the first one or if it is different. If he doesn’t have a lot of Seizure patients, I might consider going to a different DR, unless you like/trust this one of course.
It might be better for you to find an anti-S med that allows you to feel better, and that might help you in dealing with all of life’s issues as well.
Lastly, I would encourage you and your husband to get some counseling to help you deal with the emotional side of all that is happening. Seizures are scary, plus you have other things that are very emotional to deal with. Life often doesn’t allow you to not be involved emotionally, especially when it involves family. A good counselor might help you find a better method to deal with all that is happening. We as a family went to counseling over my wife’s AVM–it was traumatic for all of us. Our counselor talked with us as a group, and individually over a 3-4 month period. It really helped our young children.
I hope you can find something I wrote that can assist you. My best wishes to all of you,