@Slayer22
I admire, respect and appreciate your courage and bravery to be able to share this on a community with so many others. Thank you for sharing your situation which I am deeply sorry you’ve been going through for 12 years. That’s a long time.
I know someone who has had seizures. Used to have it daily as in everyday, sometimes at night and sometimes during the day and sometimes in between. Sometimes even multiple times within one 24 hours. My sleep was interrupted by calls several nights or knocks on my door. When it was phone calls I’d get up and walk over to their room and sit on their bed to give them company and comfort till it was gone. When it was knocks on the door I’d accompany them back to their room. This started in 2005. In fact, one night that year I remember my door being knocked on and when I opened the door to see what was needed I saw the entire forehead and parts of their face on both sides in blood. I asked what happened to you. The answer was they fell 3 times on the hard unprotected floor on the way to me. Some years later, they fell in the grocery store and got up bleeding on their face and people looked like they just saw a fight and someone got badly beaten and bloodied prior to losing. 3 years ago, I was walking past the bathroom and noticed that it was locked too long and I heard no sound at all so I guessed no one was in there and didn’t know how it got locked or who locked it or why. But once I somehow someway managed to get it open, I see the same person I’ve been talking about laying unconscious on the floor. With help I carried him onto his bed. Sometime later I went to check on him, see how he is. And I see that he’s already awake but didn’t know what happened so I told him.
Over time though I’ve noticed that the seizures that were common for a long time were now rare and just gets rarer and rarer as time goes on. Being unconscious, same thing. Now collapsing isn’t everyday anymore either but isn’t as rare as the other two. However the thing that is more common than the others, but still not everyday either, is what his doctor calls convulsions which according to the explanation he gave means that either any part or multiple parts or the whole body can shake lightly which he called jitterness or heavily or intensely which he said is convulsions but also said unlike seizures you’re conscious the whole time regardless of what happens but with seizures you can be unconscious but it’s temporary.
But like the condition known psoriasis, there is no known for these conditions according to the doctor who is a neurologist that his actual doctor sent him to believing they’d be the best option to find out the causes or triggers and the best treatment options.
They just need to be controlled to the point where they are reduced/happen as less as possible. The neurologist claimed that his conditions were “man made” but he just didn’t know it. He didn’t believe him and the neurologist was ok with that but gave him two medications to take everyday to help him control his conditions as well as the triggers but the rest was up to him.
He figured out himself that by skipping meals and getting little to no sleep, getting too excited like on an extreme level whether it’s good excitement or bad excitement, consuming too much sugar (snacks, soda, engaging in certain content, being around certain people bc they’re too negative, being stressed, pressured, frustrated, scared, I can go on and on but I’m just gonna say etc here bc I think anyone reading this got it by now) can trigger any of these conditions. If it’s done minimally and it may even depend on when it’s done, I guess it would be ok though idk for sure however doing too much of anything that’s unhealthy can increase these conditions coming back. But that could also depend on how often any of that stuff is done.
Idk if he had epileptic seizures or some other type of seizures but he’s doing much better now than before. We saw each other yesterday and he was a little hesitant to give me as he put it “a tour of his current lifestyle” but I told him I’m not a judgmental person and everything else he needed to hear to ensure that he could completely trust me so he did. Some of the things he does may not be accepted by others and others may see it as not normal, weird and wonder what’s he doing, why, and what’s wrong with him. But I completely get that he’s living the way he is out of safety, precautions and all that out of care for himself and I completely respect him for that and agree with how he’s living bc of his reasons for living that way which are completely valid.
So that’s what I think you should try. Change how you live your life. Find out what your triggers are and once you do, be mindful 24/7 not to go in the direction of any of those known triggers happening or even having any risk at all to happen ever. Idk what your triggers are but for example if one of those triggers is little to no sleep, then think about how you can get more sleep and what you can do about it. And try different things and different ways till you find what works best for you and when you find out what works best for you, stick with it to lessen the chances as much as possible to trigger another epileptic seizure happening. Do that for all your triggers once you find out what they are.
Please talk to me if you need to or want to. When I spoke to him it helped him. Talking to someone might help you too even if it’s temporary help which is better than no help at all. But it has to be the right person so you you’d have to keep trying out person after person till you find one that works best for you.
Best of luck and wishes, support, hugs and all the ❤️ to you to help you get through this storm bc that’s all it is in the end, a storm which you just do whatever you can to survive it while waiting for it to pass once it comes bc once it comes you can’t do anything else about it.
