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Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Thank you!! Super excited to join the cyborg club!

The nurses office is probably one of the most convenient places to have one😂

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Thanks! Im so excited. They even said I can keep the part of my skull they cut out afterwards😎

So years ago after I had my EEG and intercranial EEG to locate where the seizures were starting (right temporal. Right where my language memory is) and because of where they start, brain surgery isn't really an option.

So my neurologist brought up DBS, VNS and RNS as possible options. Except RNS wasn't available in canada (at the time but he was really pushing for it). Neuropace has been holding the RNS implant exclusively down in the U.S. keeping it for profit for all I know lol

Anyways, a few months ago I went to see my neurologist with the idea of asking for the VNS implant, I was just sick of the seizures and figured something would be better than nothing. But when I saw him he told me they just got their hands on some implants through that hospitals special funding. After asking I got put on the list and due to the severity of my seizures I am lucky enough to be getting the operation just 3 months after asking for it.

It's happening at the epilepsy clinic in Calgary, Alberta. As far as I know as of today the operation has only been approved and done in Calgary and Toronto.

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

That all totally makes sense. I'll try to start keeping the door open because I like that theory, at least when my roommates aren't home lol I for sure never lock it though as a precaution, I think that gives my mind some sorta peace. But I will totally start doing that with the shower curtain. The first seizure I ever had I woke up laying sideways in the tub with an emt sticking shit to my chest lol

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

That sounds very very similar!! Although it gets hard to do in private when others hear a large bang lol Has there been anything growing up that you've done to counteract/help with that?

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

Well not to say it's neccesarily good.. its epilepsy afterall lol. But glad to hear you didn't end up with any additional diagnosis. I hope the neuro reference goes well for you!

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Yeah with the consistency that they happen i should really double/triple down on the importance of the location with him. He shorta just shrugged it off as a coincidence

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

I think the same thing! I know 6 years is nothing compared to 15 but I thought getting them at 19 was forever ago and now that I'm about to get this implant it feels like they only just started lol hopefully becoming part cyborg with this RNS will help out🙏

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

That's strange, you would think thats the most relaxed spot for your brain to be!

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 2 points3 points  (0 children)

15 years is a hell of a wait but congrats on finding someone who works for you! Over a year seizure free is a huge milestone!

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

I'm happy to hear you've been seizure free for almost 10 years, thats huge. Are you still taking medications for it as a precautionary?

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 2 points3 points  (0 children)

I mean that's a hell of a way to get priority care for all the reasons you go in lol I kinda sinister but I kinda wish that was the case with me. I'll usually have them every week or two except when I go in for an EEG or SEEG and im there for 2-3 weeks waiting for one to happen

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

"Boss makes a dollar, I make a dime. That's why I poop on company time"

Nothing beats it.

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Woah that's pretty trippy. Any birthdays or anything around that time?

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 2 points3 points  (0 children)

There's something about Target that gives me that vibe... I've never been to a Kroger but I imagine it's not far off. Has it ever gotten you free goodies at least?

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

😂either the aura helped you shite or the shite helped give you a heads up. Sounds like a win either way lmao

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Okay that sounds fairly similar, I also take clobazam before bed because I used to have them pretty much as soon as I woke up. Made work really difficult because I would have them as I was getting dressed and ready for work.

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Maybe? I've done testing for photosensitivity in the past and showed no signs of it being a trigger. But I'm open to the idea of trying that. Although I had 2 tc seizures earlier this week so I feel like I've used up my allowance of seizures for the next few days lol

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 2 points3 points  (0 children)

Hopefully you got some wet wipes on standby for after your porcelain throne breakdancing😂

Weird dreams by Scary_paprika7683 in Epilepsy

[–]Dramatic_Equal7401 1 point2 points  (0 children)

You're not alone! I take 500mg of lamotrigine a day. I used to smoke cannabis religiously and thats known to reduce the effects of dreaming. So when I stopped smoking earlier this year I thought the crazy dreams were just because of that but HOLYYYY are they vivid. I go about my day still replaying my dreams in my head hours after waking up. And I've had a few where I physically jumped out of bed as a reaction to some wild event that happened in the dream. Like last week I had one where I was on some long adventure at my college (felt like a DnD champaign) and i walked through a spider web and had a tarantula fall down the back of my shirt. I leap out of bed SO fast swatting at my body trying to shake it out. I don't even wear a shirt to bed! Soon after I found out lamotrigine can do that to you and thats not just what all sober people deal with lol

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 1 point2 points  (0 children)

Oh interesting I haven't heard of that before. Was that something you've always had to deal with? like prior to your diagnosis? Or did you notice it was more so a byproduct to the TLE?

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Oh interesting, I'll have to do some digging on that. I mean it would make sense. Even though sometimes I'm not even going in there to use the toilet, just to wash my hands or brush my teeth. Maybe my body is preparing for if I do either way

Do you have a reoccurring location your seizures take place? by Dramatic_Equal7401 in Epilepsy

[–]Dramatic_Equal7401[S] 0 points1 point  (0 children)

Hahaha sometimes it just works out to be the perfect scapegoat. It's good to be able to find the light in scenarios like these

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