Hi Jonny, thanks for taking the time to look over my posts.
I have to say, I am pretty excited to share my experience of these focal seizures to someone asking for it, rather than to just anyone in earshot of me when they occur I have spent the last nearly 20 years baffled by what they were and doing just about every test possible, other than brain scan, looking for an explanation. It took me a very long time to establish a pattern to mine, but didnt buy into the panic attack narrative because specific stressful events didnt seem to cause them. I only over the last couple years had figured out that planning and decision making were the driving force; executive function I guess. For example, thinking about what to make for dinner would cause it sometimes. At first I thought it was the thought of food but came to figure out it was the choice I was presented with causing it. Similar results any time I started thinking about plans or decisions relating to my home life. Luckily, nothing acutely work related seem to have any effect and the busy mind at work allows me to stay out of the executive function area of my brain for a while. My job is fast paced and stressful, but my role is more of a reactionary role that doesn’t need me to make choices because of muscle memory. The next paragraph is a description of a focal seizure I wrote in my journal right after getting home from the hospital after the first operation. The first few years I referred to these happenings as the “Chills”, then switched to calling them “Panic Attacks” upon diagnosis of anxiety, then to now what the really are; focal seizures.
They would begin with a sensation/smell/taste in my sinus region, a second later a cramp in my left abdomen/kidney region, then a sweeping “chill”, which would make me feel like the hair on my upper body was standing on end; I would feel clammy and sweat would form on my scalp/forehead. Each would last about 10 seconds, but I could pay attention to nothing else while they passed. These would come and go and stay for a few days each time they came (I referred to it as my time of the month and had the emotions to go with it).
I am of the belief, from what I know about AVMs and from what I have already learned about how the brain functions, that I have been experiencing side effects of atrophy to the area in my brain that performs executive function. Decision making, choices, planning, emotion regulation; I experience deficits in all these areas so I was getting focal seizures any time that area of my brain was called upon. Procrastination, skipping meals altogether and cardio is how I learned to manage them (oh, and a lot of alcohol). I quit drinking just over 3 years ago and what was left of my emotion processing went out the window along with it. I now have emotion dysregulation; with happy experiences often causing me to feel happy and sad at the same time. Just the same way as I was freezing cold and drenching in sweat at the same time, prompting this whole last 6 months gong show. The only thing I can now do and rely on the proper emotional feedback is cardio exercise. I believe it provides oxygen to an area of my brain needed to get my head free from the circle of negative thinking, at least for the balance of the day. You can DM me if you want to discuss focal seizures and see if there is any similarities between ours.
Thanks so much for this; it gives me some sense of relief that maybe my team is actually making my treatment plan based on what’s best for me after all. The unknown is a tough one for everyone, especially when prone to OCD like me.
Take care Jonny