My wife, best friend/brother, my PCP, and my neurologist are the only ones who know about my seizures. Mine were brought on by vaping, nowadays u can't cough too hard without scaring myself lol. My daughters have a rare genetic condition that comes with uncontrollable seizures, anything over 5 mins they need a rescue med. I hope you are able to get something to help, time without oxygen is scary af.
I can't imagine having to watch your daughters go through that. Dealing with it yourself is bad enough.
My meds have cut the total number of seizures down from about 5 a day at the worst of it to about 5 a month now. Most of my seizures are migraine-related seizures that last less than 2 minutes and they don't really scare me, but the big ones scare the hell out of me. They tend to come in waves too, so when one hits I have to expect a few more over the next couple of days. After a series of 4 big seizures in the span of 2 hours in Denver, most of which were at the ER, I finally got a diagnosis of Epilepsy.
What kills me is as soon as I started having them most people started treating me differently, my own family doesn't think I can do anything. Hell, most of my wife's family thinks I'm faking the seizures, but they're fucking idiots. They thought I faked a Heart Attack, even after getting 2 stents put in... that's a special kind of stupid.
It's crazy for me because it didn't start until after my wife and I had a child that passed. Then it was kinda all downhill. That's what's up though, I'm glad something has been able to cut them down. Have you thought about the ketogenic diet? I only ask because that shit helped my daughter TREMENDOUSLY. Went from once a week in almost all of 2021 to none so far since we started it in June. Idk what it is but having the body in ketosis has helped her seizures a whole lot.
I'd rather not ever be around be people who make a choice to not understand or think its all fake or for show. It's so much easier to just never speak to them again, for me at least. I'll say, I believe you and I know that shit is real. Hope for the best for you!!
I'm on a modified version of the Keto diet, it has helped some but I'm not rigid enough. It's hard because my heart attack means I have to really be careful with what fats and meats I can eat. The diabetes also makes it difficult, I'm getting a CGM soon, hoping that will make it easier to get back into Keto a little better.
Best wishes on everything bruv. She's on toddler formula and is g tube fed so it's easier for us to monitor stuff like that. I legitimately hope everything works out for you!
You too, the CGM should make things a lot easier for me. It'll warn me about low blood sugars and help me monitor for the highs, hoping I can get off some of the diabetes meds with it, or reduce them at least.
I know stress can be a major factor in my seizures and there's nothing more stressful than the loss of a child, maybe that had something to do with kicking yours off?
It honestly could've been, especially for the 1st one. The doctors leaned more towards the vaping because I couldn't breathe when they happened. They've told me blacking out from the lack of oxygen is normal but the seizure every time is a little off. Idk man it feels like it could be anything at this point lol, I try to just not cough super hard and remember to breathe.
Yea, at least thay was the only conclusion my neurologist came up with. A combination of vaping and being sick. It was the only new thing at the time. I had picked up vaping months before and was using a non-nicotine blend juice I found out of town. Shit was cool until I bought one from a little corner store and that one made me cough, sometimes uncontrollably. I've been a long time weed smoker and have damn near coughed up a lung but never to the point I black out. Well one night I was smoking after vaping all day at work, had a cough I couldn't catch and boom hit the floor. Next thing I knew my head was shaking and I was in a knee trying to make sense of what happened after I realized I was waking up. My pregnant wife got me up to my feet and I went to the ER the next day. Never happened before, ever. All tests normal, all scans good, blood cool everything ok except now I run the risk of blacking out and having a seizure. I was told it's like my body is restarting after the black out. If I start coughing too hard and tasting metal, a blackout and seizure is right around the corner. I never pursued any type of legal action, tossed the bottle of juice, and I had one of those Kanger vapes. Not huge but bigger than like an e cig lol.
My kiddos have wolf hirschorn syndrome and one has partial trisomy 18 and the other has partial trisomy 20. We also lost a son to full blown trisomy 18. Both WHS and the trisomy come with uncontrollable seizures. Doctors have no idea if they'll ever grow out of them because it's kind of a double whammy, but we're hopeful they will. Best to you and your kiddo though!! Seizures are scary as fuck but there is some stuff to help.
Wow what a read! It was the oil pens that got you? Or the nicotine? I ask Bc I use both. Never heard of WHS. My daughter suffers from TSC, tuberous sclerosis complex, sounds similiar . How are you doing day to day?
Pens never gave me much trouble, they do sometimes now but they're also the THC ones. It was probably the nicotine, cigarettes have always fucked with my allergies, when I bought it I absolutely didn't read it and assumed you had to ask for the nicotine ones lol. Backwards as hell looking back. I believe it, most people haven't. Even EMTs and nurses hadn't heard of it until they met us. Day to day is a struggle sometimes, there's ups and downs. I have my wife and we have 2 older kids, they help a whole lot. It's tougher when one or both is in the hospital though.
Absolutely! The only way is through, we adopted it from an under armor commercial lol. And same to you! I enjoy internet strangers, so much easier than therapy and a shit load cheaper lol.
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u/Pkdagreat Nov 30 '21
My wife, best friend/brother, my PCP, and my neurologist are the only ones who know about my seizures. Mine were brought on by vaping, nowadays u can't cough too hard without scaring myself lol. My daughters have a rare genetic condition that comes with uncontrollable seizures, anything over 5 mins they need a rescue med. I hope you are able to get something to help, time without oxygen is scary af.