As I read the first half of this I was totally feeling your pain in the sense that it is so frustrating when you get the all clear that it’s not in fact X that’s causing your issue. Because although that is good to know, the immediate question becomes, “well if it’s not X then wtf is it?”
But then, as I kept reading, I was so happy to see that after all this time, you may have finally figured out what’s been causing the seizures! Yay! :)
Ohhhhh indeed. I suspected this was gonna be the case because of how the short EEG went, and I did conk out that day, had sleep jolts but it was “normal.” So this was no surprise but still…not having any idea how to treat it is like…WTF! Eh…??? Having to find the solutions myself has been pretty par for this course. Now if doctors world only listen to me when I tell them what’s going on, then we might really start to get v somewhere. And’s I don’t only mean for me. I have so much journaling and data basing and pattern sleuthing about this stuff. I plan to donate my brain to scientific study along with all the notes and timelines so… 🤞🤞🤞 Maybe it can help them figure this trixxy little beast out.
I really really hope so. Cuz I’ve been tracking all the stuff that created this since 5 months before my first TBI. 🤓 The journals themselves would be onerous to go through, but that’s why I want to really make sure they get all my writing about it, so they can seek out any specific time periods that thru want to dive into. Reason #4964 why I feel the clock constantly ticking, why I just decided to puke it all up here instead of traditionally publishing, and why I require clones. 🤪
I think having it all on here is a great idea! It makes it much easier to go through than old notebooks—I would never expect anyone to be able to go through my old notebooks haha!
As I read the first half of this I was totally feeling your pain in the sense that it is so frustrating when you get the all clear that it’s not in fact X that’s causing your issue. Because although that is good to know, the immediate question becomes, “well if it’s not X then wtf is it?”
But then, as I kept reading, I was so happy to see that after all this time, you may have finally figured out what’s been causing the seizures! Yay! :)
Ohhhhh indeed. I suspected this was gonna be the case because of how the short EEG went, and I did conk out that day, had sleep jolts but it was “normal.” So this was no surprise but still…not having any idea how to treat it is like…WTF! Eh…??? Having to find the solutions myself has been pretty par for this course. Now if doctors world only listen to me when I tell them what’s going on, then we might really start to get v somewhere. And’s I don’t only mean for me. I have so much journaling and data basing and pattern sleuthing about this stuff. I plan to donate my brain to scientific study along with all the notes and timelines so… 🤞🤞🤞 Maybe it can help them figure this trixxy little beast out.
That’s a great idea! Those bastards better make good use of your donated brain, so they can help others! :)
I really really hope so. Cuz I’ve been tracking all the stuff that created this since 5 months before my first TBI. 🤓 The journals themselves would be onerous to go through, but that’s why I want to really make sure they get all my writing about it, so they can seek out any specific time periods that thru want to dive into. Reason #4964 why I feel the clock constantly ticking, why I just decided to puke it all up here instead of traditionally publishing, and why I require clones. 🤪
I think having it all on here is a great idea! It makes it much easier to go through than old notebooks—I would never expect anyone to be able to go through my old notebooks haha!
And yes, clones would be helpful! :)
Yeah, I have 2 boxes before my hand started going numb in 2017, and then the computer files since. Gak!!!! Rigoddamdiculous! Sooooo helpful!
I bet you could use a clone to transcribe those two boxes worth of notebooks! Haha :)
Ohhh and also — “It is nothing more than a neurodivergent’s chronic experience of being gaslit by the world.” — great line!
Thankssss! 🤓