[sickygnar]

> --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them.

Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bitterness subsides into a dull background noise.

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I'm epileptic. I don't deal with it well at all. I hate it and it annoys the hell out of me. There is the giant, "what if" fear that overshadows pretty much everything I do, including going to sleep. Fortunately, I have a good pulse on how I'm feeling (i.e. if I'm going to have a seizure in the next few days), and I know what I need to adjust in order to keep the seizures mostly at bay.

Apart from medication, the most important thing to keep in check is diet. I've found intermittent fasting and low-carb/gi help the most, it's annoying to keep up, but if I fast in the morning (aka skip breakfast, or keep my a.m. meals keto), then I can generally coast and not have to worry about seizures too much, but if I eat a moderate amount of higher-gi carbs, then I will likely have a period of a few days where I have partial seizures.

[paperwasp42]

Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain.

I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.)

Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for building up a tolerance for fasting?

[sickygnar]

I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you.

I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can.

I don't have any problems with blood sugar, and I don't get crazy hungry (I actually forget to eat pretty often, I find it more of an inconvenience, hah). I WFH so it's not like I burn many calories sitting on my biscuit anyway. My main problem with it is weight loss. I'm not overweight and I like to exercise, so I need to make sure I eat enough. Another downside (I'm guessing) is electrolytes or vitamins. Maybe I'm simply underfed but I seem more prone to muscle tightness/cramps.

I find I can break the "diet" regularly and not lose therapeutic effect. I do it 4-5x/week. I'm down to 1-2 partial seizures a month, whereas previously I was hitting 30+. I have neocortical TLE (likely focal cortical dysplasia, adult onset), so the partial seizure numbers tend to be higher than your standard hippocampal/mesial TLE. Overall my seizure control is pretty good lately. I'm hoping it stays good - but as you probably know, can't let your guard down.

I ended up here after failing to maintain keto and the low gi ("south beach") diets. They seemed to improve seizure control a bit, but I had real problems sticking to them. Fasting is all the rage now, so I figured I'd borrow the easy/good parts from both of those diets, while trying out a simple, loose version of fasting. I'm glad I gave it a shot. Good luck!

[paperwasp42]

Thank you so much for all the advice! It's really nice to know that shorter fasts can still have an impact on some people. This has encouraged me to try fasting again.

And huge congrats to you on reaching only 1-2 seizures a month. I know how much time, research, and mental energy goes into reducing seizures. That is a huge accomplishment!

[sickygnar]

As you know, this condition is totally unpredictable, so it may just be a temporary lull completely unrelated to my diet. I also feel obligated to leave the "I am not a doctor" disclaimer. And good luck with your seizures as well. They're so awful

[paperwasp42]

Oh for sure, but I admire you for putting in the effort to at least try to improve your condition.

And disclaimer noted and appreciated. :)

Good luck to you as well, my friend! I'll keep my fingers crossed you eventually get down to 0 seizures a month.