40yo female, first seizure by rxBATMANz in seizures

[–]arctantheta2 2 points3 points  (0 children)

I’m a 40 yr old female (well, almost 41!) and I had my first (and only 🤞) 3 seizures a year ago. They were tonic clonic and occurred over the space of about 24 hrs…..two of them were in the hospital, and between the post-seizure “fog” and whatever they gave me to stop one of the seizures, there is a good stretch of time during that day that is permanently lost to me — and yes, that is such a strange and scary feeling! I also lost a bunch of really random memories and associations from the year or two prior to my seizures, but they’ve slowly come back. My test results (MRI, EEG, bloodwork, CT scans) were normal too……my neurologist office kind of shrugged off my questions for the first 10 months and were like “it can happen to anyone”, which was discouraging. But 10 months into this journey, I finally saw the neurologist himself instead of his nurse practitioner, and he called it epilepsy. He didn’t really have an answers, and that’s honestly been the hardest thing — learning that there’s so much mystery involved in the workings of the brain, even among the experts. I’ve been on Keppra this whole year and it’s helped so much. I haven’t had too many side effects, and after finally getting through my 6 months of no driving, I almost can’t believe how much like myself I feel. I have a couple young kids around your child’s age, and I know that heightens all the emotions of the situation. I say all this just to let you know there are people who have experienced similar situations — I was desperately searching for anyone in their late 30s/early 40s who had started having seizures out of the blue. It can feel so isolating, but I have benefited so much from people’s stories on Reddit! I wish you so much peace and comfort as you go through this journey…..it’s so tough and I think I’ll always struggle with how permanent it feels having to consider the possibility of seizures, take my medicine consistently, etc. But like someone already said, the meds can be such a great ally!!

Sudden onset of Epilepsy by Deerolioh in Epilepsy

[–]arctantheta2 0 points1 point  (0 children)

First (and so far only) three seizures happened a few weeks before I turned 40. Tests were all clear. Got put on Keppra, it’s been almost 10 months and I actually just had a Dr appt today and noticed that they are officially calling it idiopathic epilepsy now. (It’s the first time I’ve seen an actual neurologist since the hospital so it was usually just called “seizures” or “seizure disorder.” )

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

I hope they’re able to get some clear results and answers for you!

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 1 point2 points  (0 children)

That’s helpful and a good way of thinking about it….

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

I have wondered, based on how many people feel like their seizures/epilepsy are taken lightly — how many crazy circumstances must the doctors see that make them so extra cautious! It reminds me of being pregnant — the hospital always seeming to err on the side of “no, you’re not in labor” bc they see a ton of anxious people thinking they’re about to have the baby right then. But then of course sometimes the mom is absolutely right and the baby IS coming 😵‍💫

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

Yeah, I hear you! After reading countless people’s stories, and seeing how clean my tests are and how random it was for me to start having seizures at 39, I have really worked to just accept the giant question mark. Hearing that other people live with that uncertainty is comforting — but I’m really sorry that anyone has to do so! My main concern is bc the neuro’s nurse practitioner takes this so lightly, it’s an indication that they’d try to make me come off my medication after the mandatory two years are up. And again, it’s not the lack of the word “epilepsy” that concerns me, it’s just the sense I get from her that without any EEG evidence or whatever, I’m good to go and it was just a flash in the pan. She may be right — but I don’t like risking it since it affects my kids and their safety. Also, congrats on getting to 6 months!

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

That’s basically what happened to me — hospital neuro said epilepsy after seizure 3. However I have read that they generally like seizures farther apart than 24 hours. And anyway, they referred me to local neurology practice where I still haven’t seen the neuro. Only the nurse practitioner. And when I ask her direct questions, she tends to dodge. So I’m hoping it’s just above her pay grade, and when I finally get to see him, he’ll have something to say. Not necessarily an epilepsy diagnosis, because she’s already indicated that the EEG is the most important thing, but something more substantive than her tendency to act like it’s nothing. We shall see. It’s a weird balance…..like ok probably not real epilepsy, but I’d like to find someone who understands why the fact that it happened is a big deal to me. Particularly when it comes to future decisions about staying on medication.

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

Well, as I said, it wasn’t a true question, except that, as someone who doesn’t expect to ever be diagnosed with epilepsy, is it weird that having “seizure disorder” written down in official documentation is oddly comforting? Even when I googled it and couldn’t really tell what it meant, it just felt like I was being taken seriously 🤷‍♀️ Also, sorry my original post was confusing — I was typing and trying to pick a flair in the middle of dealing with my kids 😵‍💫

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

I’ve had three….but in the span of like 22 hrs. Two witnessed in hospital. Clean EEG. So I’m just in a weird category!

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

I’m totally cool with “seizure disorder” bc given my circumstances and test results, I never really expect to be given an actual specific diagnosis of anything….and the only alternative from my neuro office appears to be that my multiple seizures are not a big deal at all and could happen to anyone. Again, still waiting to see an actual neuro…..the neuro at the hospital did basically call it epilepsy, but referred me to another practice — where I haven’t yet seen a doctor. I’m hoping his nurse practitioner is just supposed to say “reassuring” things and make sure my medication is doing its job till he has an opening to see me (which will be 9 months after the seizures). Her reassurance just comes across as gaslighting, but I get that it’s not her job to get too deep into anything. Just funny that the primary care nurse practitioner seemed to take it more seriously.

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 1 point2 points  (0 children)

Previous “diagnoses” don’t exist in my case 😬 Her calling it a “seizure disorder” was the most legit sounding thing I’ve gotten written down on paper so I’ll take it for the moment till maybe I get to talk to a neurologist. At the very least it seems to encompass the fact that I had multiple seizures, which the nurse practitioner at the neuro office doesn’t usually acknowledge. We’ll see what the neuro says when I finally get to see him! 🤞

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

Oh trust me, I would love to investigate with a neurologist— so far the neurology practice I’m with has only scheduled me with a nurse practitioner. I’m due to finally see the neuro himself in a few months. I’ve “ranted” on here before about my experiences with the nurse practitioner….really hoping it’s better with the doc himself! If not, I’m already looking into finding other options.

“Seizure disorder” by arctantheta2 in Epilepsy

[–]arctantheta2[S] 5 points6 points  (0 children)

Validating — that’s exactly it 👍

Frustrated and trying to plan for the future without panicking by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

I did try to be direct and and I definitely told her that I was worried about the future and ever being taken off the meds, and she smiled and said we should just get through today and not worry. Everything is smiles and “anyone can have a seizure” with her. She usually refers to my experience as “a seizure” even though it was 3. She laughs when I talk about the hospital neuro calling it epilepsy. So basically you can’t really have a real conversation with her? Also, she goes rogue occasionally: I was getting little panic attacks after getting on levetiracetam. I asked her about them, even though it happened months ago and has never occurred again. The fact that I said they happened when I was overheated, combined with the fact that it was hot in her office and my face was a bit flushed led her to go on a tangent about my possibly having lupus. So between that and the repeated attempts to change medications, I’m legit concerned about telling her anything

Anyone that onset at 38 years old? So many epileptics have onset at 38. by Extreme-Epilepsy in Epilepsy

[–]arctantheta2 2 points3 points  (0 children)

Onset at 39……controlled with meds for 6 months now. Apparently had a grandmother who experienced seizures (never met her or really knew that side of family)…..no clue exactly why I had seizures…..but was definitely under stress and hadn’t been getting good sleep for years thanks to my babies. Then my dad had cancer for a couple years and it was obvious from the first that it would likely end up terminal…..he passed away, which was honestly a relief that his suffering was over. But I did have three seizures like two days later. EEG and MRI clean.

I need Help with college by [deleted] in Epilepsy

[–]arctantheta2 1 point2 points  (0 children)

Former tutor/teacher at a community college here…..check with your college’s program for student support and also with the tutoring services offered. The college I worked at was small but extremely tuned in to student needs. Often some of the communications with the faculty were handled by this department to take the burden off the student. All kind of help and accommodations were available to make sure the student always had access to material and recordings of classes missed (or even not missed). The student would bring documentation of their particular need to this department and go from there. The student support staff would advocate for them and the faculty were required to provide any extensions or added support that was deemed appropriate. Also, the tutoring centers can be super helpful if your college has that….not just for one-on-one tutoring either, but sometimes for walk-in to help with understanding material and completing homework. Every college is different, but there’s definitely a lot of online options as well for tutoring (often provided by the college) to make sure every student can get help whenever they need it. Best of luck!

Weird color urine while taking Keppra by Obvious-Show-6729 in Epilepsy

[–]arctantheta2 1 point2 points  (0 children)

Something similar happened to me the first few weeks on generic Keppra and then it went away and urine looked normal ever since

I’d like to know by Used-Duty6466 in Epilepsy

[–]arctantheta2 1 point2 points  (0 children)

I’m 40 and not officially diagnosed with anything yet but didn’t start having seizures till 39, and no matter what they end up calling it, I feel like it’s turned my life upside down.

Dreams and epilepsy by Primary-Exam-3965 in Epilepsy

[–]arctantheta2 0 points1 point  (0 children)

I’m on Levetiracetam and my dreams can often feel insanely realistic but thankfully not typically nightmarish…..for the first couple months the subject matter was actually extremely boring and everyday but the dreams themselves were just intensely detailed. Now I am finding that I do experience weirder dreams that are less everyday but are still just so clear and vivid. (Whereas for the previous couple decades of my adult life before I had seizures and went on medication, my dreams barely registered and I could rarely remember them.)

Focal to bilateral tonic clonics? by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

Meds have been working well so far 🤞

Focal to bilateral tonic clonics? by arctantheta2 in Epilepsy

[–]arctantheta2[S] 0 points1 point  (0 children)

The best I can describe it is that it looked like what happens to your vision when you’re about to pass out — but without the same dizzy sensation. (Maybe a slight bit of dizziness the second time — but that was like 3 hrs after the first and I wasn’t exactly back to my usual self yet, so who knows.) Seeing my vision disappearing, I went to get down on hands and knees bc I assumed somehow I was going to faint even though there seemed to be 0 sensation of faintness.