Postictal Headaches

@dannoyes
Hello Dan,
Postictal headaches are indeed quite common. The Epilepsy Foundation has some helpful information about this: https://www.epilepsy.com/stories/seizures-and-headaches-they-dont-have-go-together
I've experienced headaches after some of my complex partial seizures too, with the intensity varying depending on the seizure severity. However, looking back at my epilepsy journal, I've never really noted whether the pain was predominantly on the right or left side of my head – that's a really interesting observation you've made. After my tonic-clonic seizures, I'm usually so disoriented that I can't even remember if I had a headache. The muscle pain and stiffness from the seizure itself tend to overshadow everything else. With your observation, I will start paying closer attention to the headache location after my seizures.
Interestingly, we share the same condition – I also have left temporal lobe epilepsy. I have a mesial sclerosis on my left hippocampus. Do you also have sclerosis?
I understand that this headache pattern is something new for you after seizures, correct? I'm curious about what type of seizures (auras, complex partial, tonic-clonic) seem to trigger these headaches for you. Have you discussed this with your doctor, and if so, has she or he recommended any specific medications for managing the pain?
Take care!
Chris

Thank you for sharing. I love that you've even considered adding this level of granularity to your seizure journal. I've thought back about my early journals and use of Epsy, and I did it all wrong, especially after my recent research. For example, do I include the humidity, weather, and consider the time of year/seasons, day of the week, food that I ate the previous day, amount of coffee, overall hydration, exercise, etc. I just focused on the basics, but missed these other variables. I was shocked to learn that the impact of weather and seasonality can have on seizure activity. Sadly, with seizures at least three days a week, you get to the point you don't want to relive another seizure, since I've found my neurologist doesn't even look at my seizure journals or seizure observations anyway.

It's so funny you mention sclerosis because I have that on my right side due to one of my TBIs. I have auras/absence as well as complex partial seizures. Since I have both FND and epileptic seizures, every seizure can be a mystery, especially with a recent seizure manifestation I've been having. For the past several months, I have had bad tremors in my legs that are fairly constant, it can then escalate to me having severe rigidity, pirate scowling, and even vocal manifestations where I will just say whatever word my brain gets stuck on over and over and over again. They might then escalate into a full convulsive seizure, but sometimes they just stop very suddenly. The post-ictal with these is much more epileptic. My PCP says he thinks it's RLS and my Mayo neurologist thinks it's a pinched nerve. I also have terrible auras that could be 30-45 minutes ahead of time. My mind automatically went to PD, but no one is sure what is going on. I go back to Mayo in August so we'll see.

I do find that when your seizures change it is so important to raise and wave the red flag again and again to make sure it gets the attention it deserves. My recent situation is much more troublesome because it happened in public. Like yesterday, I had one of these issues just after I got done volunteering at the hospital with my service dog Gabe. What was strange was I noticed he started staring at me as he was also ministering to patients. In the back of my mind, I was thinking why is he watching me so intently because this is patient time. Then we leave, and I could feel an event coming, and Gabe was right there with me. So the idea of having a full seizure in front of patient when I'm volunteering is not a good thing.

So I say all that to say I'd love your thoughts.

@dannoyes
Hello Dan,
Learning to identify your seizure triggers is definitely a process that takes time and patience. When I first started keeping an epilepsy journal, I also made some mistakes. At first, I only used my epilepsy journal to report my seizures and missed tracking many important variables.
My approach evolved when I began keeping a daily journal, documenting each day whether I had a seizure or not. This approach helped me identify patterns and understand my triggers much better. I highly recommend the book "Taking Control of Your Seizures" by Andrews-Reiter—it really helped me refine my journaling method and discover both my physical and emotional triggers.
While there are well-known common triggers like sleep deprivation and stress, I've learned that everyone has unique triggers too. For example, I discovered that warm temperatures can trigger my seizures, so I now always carry a small towel that I can wet and place on the back of my neck to cool myself down when needed.
I completely understand your frustration about your neurologist not reading your journal—I felt the same way. Over time, I've realized that doctors simply don't have the time to review detailed journals, so I've adapted my approach. Instead of sharing the raw journal, I create summaries with hard and clear data. For instance, when I discovered that gluten was triggering my seizures, I created an Excel spreadsheet and graph showing my doctor that my seizures decreased by 60% over 6-8 months after starting a gluten-free diet (with no medication or routine changes during that period, thus isolating one variable). Doctors usually respond well to this type of data presentation.
How wonderful that you have a dog who can sense and alert you to oncoming seizures! That's truly a gift. In case you have a seizure in public, please remember that this is absolutely not your fault, and you have nothing to be ashamed of. It doesn't diminish your value —if anything, it might help your patients see you as someone who truly understands vulnerability, which could deepen their respect for you.
I'm a bit confused about something you mentioned—you said you have sclerosis on the right side but your temporal lobe epilepsy is on the left side. From my understanding (though I'm certainly not a doctor), seizures typically start on the same side as the sclerosis. Has your doctor ever explained this apparent discrepancy?
Also, do you have any thoughts about what might have triggered your recent seizure after your volunteering work?
I hope this lengthy response offers some helpful insights and food for thought. Wishing you a peaceful weekend!
Chris