It's not you; it's me...

I had some brain damage, as a result of my cardiac arrest in March 2023. It led to constant seizures in hospital, and an induced coma for 13 days…

When I left hospital, which wasn’t guaranteed for a lot of that time, I worked hard at regaining function: I regained heart function steadily, my lean mass recovered well. I thought I was back on track, and got back to work within 3 months. It was clear that I was cognitively less able than I’d like, but I continued to work on that - even small things, like reminding myself of the names of the artists whose music I had never forgotten…

I regained my ability to drive 6 months after having my ICD (defibrillator) fitted - everything seemed back to normal. I had a couple of months of joy - I love driving, even to the extent of enjoying my 2 hour ‘commute’ into London, which I’d got back to 2 or 3 times per week. I found I was uncomfortable in ‘large’ conversations, but didn’t really think that was a problem - I’d made it through conferences, like my favourite, CNS Summit, but often felt a challenging buzz in noisy situations. My vocal palsy, a result of intubation, was something I disregarded.

And then, at the end of dinner in December 2023, I had a grand mal seizure. I’d noticed that talking to the table of 8 was hard - with more than one conversation at any one time, I was struggling. But, I had no idea that I was into my red zone. The seizure was a shock - I’m sure to everyone around me, even if I knew nothing about it. I spent the night in hospital - they increased my medication, but I hated facing the 12 month driving ban.

Everything went very well after that. I made it to November 2024, and was only a few weeks away from getting my licence back. At my favourite conference (surrounded by neurology experts), I found myself feeling overstimulated, felt the red zone, and then felt my rev limiter - some eyes went deep into my brain, and I heard them saying my name repeatedly. That was all I remember - I woke up in a hospital in Boston.

I came back with my epilepsy medication doubled, and another 12 months’ ban from driving. Because the Keppra led to serious mood and motivation side effects, we switched to a dual regimen. Again, this went well.

I made it to my daughter’s wedding in August, 3 months from getting my licence back. I made it through my speech (cognitively, at least - my tears and voice didn’t do so well), but in the evening, when the music started, I moved outdoors, but the same thing - some eyes went straight into my brain, they said my voice repeatedly, and I don’t remember much more. I came around after they delivered buccal midazolam, made it into the ambulance, but continued seizing there, and then another 4 times overnight: my worst episode yet.

I’ve had it described by an expert as musicogenic epilepsy - it’s triggered by being in or near multiple conversations (but never by music). I’m looking into how to treat it more aggresively.

But, to the point of the post, I’ve had to adapt. I’ve been able to meet people and clients one on one, without a problem - if it’s a noisy environment, I notice the red zone, but it’s felt OK. Teams meetings are OK, as it only allows one person at a time to talk… An hour’s conversation is a challenge - it feels like a workout - but manageable.

I’ve felt uncomfortable when the dinner table gets to 6, especially if more than one conversation breaks out - if someone tries talking to me, while other conversations are happening, it feels like I instantly red-line. I’ve made it through workshops, but workshops tend to have one person talking at a time.

To the point of this post, I’ve had to decide to limit things, until a more permanent fix can be found. I can’t go to meetings/ conferences any more, which is tough. I can still do my podcast interviews, meet people one to one, but I feel anxious in crowds now. I’m not staying away because I want to, but because I have to - it genuinely isn’t you, it’s me.

Epilepsy sucks - many have it worse than I do. I’ve worked on Keppra, brivaracetam, but, as they say, being a patient brings insight that no market research will ever yield. I know it makes no sense, but I’ve felt embarrassed about every seizure, afterwards, felt frustrated as hell about the enduring impact. It sucks because it limits so much, while having no/ little impact on my day to day life.

This is a great outlet - writing is easy, and a useful way to get across things I care about deeply. I’m working on more than one book - it’s easier than trying to get my head down on one at a time. If I can’t see you in real life, I hope that we can still connect remotely. I’ve had to adapt, but I believe most things can stay the same.