u/Mom1021

This catamenial seizure thing won’t ever be predicted, for me anyway, so I would LOVE to hear from any ladies out there who are confident about how their monthly cycle works with seizure activity. Just starting to catch on about how times when my cycle isn’t regular will correlate to more OR LESS than usual seizures 🤯 Deciding to make some major diet changes and hopefully long term will be less seizures by ‘27. Share any recommendations here for gaining steady control over your epilepsy

“One supportive hypothesis proposes that ß-endorphins released during exercise inhibit epileptic discharges”. Numerous studies show no change, or even a decrease in seizure frequency during 4-12 week aerobic exercise programs. Clearly not enough studies done to reach a conclusion that influences our neurologists to encourage exercise as a treatment. Bummer. Anyone else want to document your own journey? Take notes on how our seizure frequency, severity corresponds to exercise (how often, what activity) and educate our own care team! Hoping if one of us takes this to our doctors, someone might get them proud of their patient and have a positive influence for someone else’s care! Epileptics will still manage greatness 🤗
 
https://www.sciencedirect.com/science/article/pii/S1525505010000181

Appreciate and admire all epilepsy advocates! I know there can be more of us that share our success and increase positive change for others! Article here that stood out because it triggered a realization how tempting it is to trust your neurologist. Countless times, newly diagnosed epileptics are essentially shut down from our favorite activities (swimming, biking, hiking) or advised to cancel plans (party, travel). I understand the medical community is prioritizing safety, but WTF?! Mental and emotional wellbeing is also priority! Maintaining an important aspect of our lives by staying active is impressive, since the vast majority of medical professionals would be the easiest excuse for starting a downward spiral, initiated by “safety” through dropping routine physical activity that we often don’t realize plays a crucial part in a balanced lifestyle. For many epileptics, balance is a challenging, but essential aspect of achieving controlled seizures. Good luck and prayers for all of us surviving with seizures!
inspiration article

Getting fit, and staying that way, is easier said than done! Making it happen is a must, to be the best we can be, so a nice msg here to remind how good it will feel to take initiative, and how making any changes, no matter how significant, will add up over time to make a big difference!

***Lower stress
Stabilized brain activity
Better chance of not getting cardiovascular/mental health issues
Better sleep***
      

The heat wave has been causing many of us trouble, inspiring discussions of how to stay hydrated while always keeping in mind the importance of balance. You can always get too much of a good thing, especially water. For me it’s about a gallon / day. If I go over that amount, then we’ll have to be cautious of unintended consequences like frequent restroom use and possibly induced seizures.
During a workout I’ll rarely drink anything besides water. On busy workout days, protein drinks to substitute a meal is useful too. Since days have been hot lately, Gatorade/electrolyte drink have been a good one to take out for playground time or running errands. Any suggestions for how to best stay hydrated?

https://seizelife.gumroad.com/l/betweeninterruptions

Between Interruptions is a valuable asset for us epileptics as well as anyone interested in understanding more from a perspective NOT trained in medical school. Enjoy!

Happy Friday to all! Here we are at the end of another week, hope all has gone well. Today I’ve got the different effects of being active on my mind, and hoping to get opinions on how many things we’re doing to get/stay in shape! Floor routines and resistance training on the reformer are what I notice real results from. Having busy days running errands end up getting me more tired every time. While workouts are the best for me, idk why it’s always been so difficult to commit to a routine. Anyone else notice whether certain activities end up with better mood results? Errands are getting things done so that’s satisfying, but a nice workout still feels like results and that refreshing shower afterwards is usually a guarantee for good rest of the day. Anyone else have preference on whether it’s getting chores/errands done or a nice workout to achieve a result of a day that feels successful for our health?

Reminding each other of good habits on these posts is the goal. Today I’ve got something in mind that we don’t hear about much, exercises don’t work the same for everyone! Again, I’m no fitness expert, just a Pilates/yoga hobbyist. Have you also done some of these video classes, going for those nice lines and shapes that those on the mat display? Not happening! Overall, we can definitely make progress and become the best version of ourselves, but here’s a shout out to everyone putting on the effort, please remember it’s so much more important to feel the progress than rely on cosmetic changes. Whatever size we fit, the people that are worth it will stick around, and anyone new will appreciate you for much more than looks. Work it!

 All the following suggestions apply to us still working on seizure management, with or without medications, implanted devices, and recently diagnosed. At the end of the day, whatever works for you is a victory, and I hope you have a neuro team that respects that.
 
Reduced Seizure Frequency: Regular aerobic exercise (like walking, running, or cycling) has been shown to significantly reduce the number of seizures in some individuals.

Neuroprotective Effects: Physical activity can help protect brain health by upregulating proteins like paralumin, which helps protect brain cells during a seizure. It may also decrease interictal epileptiform discharges—abnormal electrical activity between seizures.

Improved Brain Function: Exercise can lead to positive changes in hippocampal connectivity, which may help improve memory—a common concern for those with epilepsy.

Stress Reduction: Stress is a primary seizure trigger; exercise acts as a natural stress reliever, helping to lower the overall likelihood of an stress-induced event.

Better Sleep Quality: Physical activity promotes more restful sleep, which is critical since sleep deprivation is another major seizure trigger.

Fatigue Management: While seizures and medications can cause exhaustion, regular gentle exercise can actually boost overall energy levels and reduce fatigue.

Medication Side Effect Mitigation: Some studies suggest that being physically active can help reduce the severity of side effects from anti-seizure medications, such as weight gain and fatigue.

Mood and Mental Health: People with epilepsy face higher rates of depression and anxiety; exercise releases endorphins and regulates neurotransmitters like dopamine and serotonin to improve mood.

Comorbidity Prevention: Maintaining a healthy weight and cardiovascular fitness reduces the risk of other health issues, such as type 2 diabetes and heart disease, which can further complicate seizure management. 

This looks like the first step in getting a well thought out treatment plan that can get all specialists and family involved in care on the same page. Will this rx help more than hurt? That’s the question that can achieve an accurate answer for us after all! Join the zoom to talk about this one next week 🥳 Tues 12pm PST, meet details always posted here