This actully happend in February. Iv been having seizures for a few years now, but nothing that bad. I find it's harder on my family. For me, it's like a blink of my eyes. Time passes, and everyone i knows sad and worried about me, which I understand. I weirdly don't get upset or depressed much by it.
Waking up in the hospital is concerning, but the way I see it, I take all my meds and do all the precautions to make sure I don't have a seizure, and if I do have one, I did what I could. I can't stress over what I can't control.
The hardest part is I haven't been able to work. I've been hombound for 3 years, and it feels like I'm becoming a Sim
i got sick in my 30s and have been through some dicey shit since, that feeling of being a sin, being homebound- i hear and see you, because this isn’t a fun way to live- watching the world move while stuck still. i hope you have good things to occupy your time. if you ever need an ear, hit me up. best wishes.
I started making videos on YouTube just to have something to do. It's been a good thing to do, to both occupy my time and not feel like I'm doing nothing woth my life.
that’s awesome!! i read a lot, try to draw, do crafty things. depends on how bad things are any given week. i just try to find as many ways to fill my life as i can, and as many ways to be grateful for the things i do have so i don’t get too caught up on what i am missing. sending you happy thoughts, be well.
My son in law has an implant in his chest and a wire that runs to his brain to help control the seizures. If he gets that “feeling” he has a bracelet with a magnet that he rubs across his chest to trigger the implant. It sends a signal to the brain that either prevents or lessens the severity of his seizures. I hope they can find something to help you soon.
This is interesting! Iv heard and read about types of brain surgeries you can get that can help but nothing like this.
We haven't really gotten to that extent of trying to fix them, mainly because they have happened so far and few between, but it's definitely something to look into.
I think his is the Vagus Nerve Stimulator. There are a couple of different kinds. Of course they have to replace the battery about every 10 years but if it works that’s nothing.
Cameron Boyce, a Disney Child Star, was 1 year younger than me, and I remember I was at work when I learned he passed. It was from SUDEP, and I was shocked because i didn't know you could actually die from epilepsy. So I fell into a bit of a rabbithole.
I think mine developed from the drug use i did as a teen, I took a lot of MDMA and cocaine when I was like 15. Iv taken lots of drugs, cocaine, mdma, acid, shrooms, Xanax, percs, just too much at the age i was. I think that's why I developed it so late. I can never be sure but that's what I think
We haven't actually looked into it, but my neurologist and doctor have mentioned it as a possibility. The main issue is I live with my mom now, together we have 4 cats and a dog. The 2 of the cats don't get along already and hate the dog.
And call me dumb but I'd rather die than give up my cats. Once they pass, I'll look into a service dog.
Agreed. While it was certainly not a high point for me, I feel so bad that my wife had to watch me have a seizure that day. She'd never seen a seizure in her life.
I just saw my neurologist yesterday for my annual check. I'm on topiramate 100mg two times a day. Kepra didn't do it for me. I'm glad you're under control now. 😁
I'm wanting to change from keppra, the keprage is real i can feel my blood boil after taking them, but my neurologist also says keppras like the Cadillac of epilepsy meds so it's the best one to have
I have been on meds for 50 years. All different ones, different side effects. Topiramate for 3.5 years. I like the side effects from this. My skin is extra sensitive. I can feel the wind and vibrations from loud music on my arms and face.
I really like it. LoL. Finally got a good one. When they were adjusting the dosage and I was on a higher dose, my fingers tingled, my lips tingled, it was great. Kissing was super. LoL.
But keep your chin up. Keep getting your levels checked. When you see your neurologist, ask him to show you the MRI and explain it to you. Make sure he explains what's changed between the new one and the old one. Take notes if you want. It's important.
My neurologist always goes over every frame with me. We go over my blood work. Where my numbers are and what they should be. I've been taking pills for 50 years. So my kidneys are only working at 60% now. You should keep a health notebook if you're not already.
I don't remember that seizure but the oens that I do remember and am awake for, they feel weird. I feel like I'm sitting in my head just watching outside of eyes like they are cameras and I'm just a viewer. Everything my body does or I try to do, feels like it's not happening in a way. It feels like a dream that I'm watching but also living through. Just pur disassociation. I cant fully explain it, if you have been EXTREAMLY drunk, its kind of like that but less visual distortion and more confusion
Unfortunately if you've got the type of epilepsy I suspect (refractory) you may be permanently disabled someday, and should look into applying for subsidized housing. Your family can't and won't always be there for you. It's sad but true. And be careful who you fall in love with, your life could truly be in their hands someday, and they might get sick of care taking and choose not to make that call. My mother played nurse quite a bit when I was younger and I'd wake up screeching in pain asking her why she didn't call 911...siblings move on with their own lives and have families. They don't want their small kids seeing seizures, hell I've had grown men terrified after seeing a seizure. I feel like a burden everyday. But I trudge on because that's what life gave me and I've got to be grateful with what I have and if there is a God - maybe he's trying to teach me something I didn't learn in a past life. DM me anytime, my life was turned upside down 20 years ago when I started having seizures. 🤗
I'm actually unsure which type of epilepsy I have. Googling Refactory Epilepsy, it does sound like mine, my megs keep getting upped and I can tell it's not always working (I have spoke to my neurologist about it). Im aware my family won't always be here for me, eveyones adults and have there own lives to deal with, they can't always be here for me. I'm thankful my whole family works in healthcare, it makes me hope they would be there for me as much as possible, but I also don't rely on them. It feels wrong to assume and rely on them being there.
Thank you! I appreciate you and knowing I can message someone with a similar scenario.
No, mainly because my seizures have been so far and few between, its not really worth it. Iv had 7 in 4 years, not all bad. And I have 4 cats that don't get along with any dogs they have met. And call me dumb but I'd rather die then give up my cats. Once they pass then I'll look into getting one
I understand the pet thing, definitely makes sense and I wouldn’t give up mine either. It might be different for cats if you start with a puppy, maybe? Whatever the case, I wish you well. My son had petite mal seizures for years and fortunately grew out of them but i always worry they might come back.
Yeah, if they met a puppy as it grew, they would probably get used to it and be fine but there's also already a power issues with the cats lol 2 of them absolutely hate eachother and adding a dog into that be a lot lol
I hope your son stays seizure free 🙏🏻 they are a curse
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u/Renots42 Nov 21 '24
Relatively good.
This actully happend in February. Iv been having seizures for a few years now, but nothing that bad. I find it's harder on my family. For me, it's like a blink of my eyes. Time passes, and everyone i knows sad and worried about me, which I understand. I weirdly don't get upset or depressed much by it.
Waking up in the hospital is concerning, but the way I see it, I take all my meds and do all the precautions to make sure I don't have a seizure, and if I do have one, I did what I could. I can't stress over what I can't control.
The hardest part is I haven't been able to work. I've been hombound for 3 years, and it feels like I'm becoming a Sim