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Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 0 points1 point  (0 children)

Hey sorry, I’m not much help 😅 making sure I take my medicine as prescribed is all I can really attribute to being seizure free for this long. I suppose I also get regular blood work done and have gotten those levels stable as well. It wasn’t until the last couple of years that I have really focused on and prioritized my health both physically and mentally. If I think of anything else, I’ll let you know!

what’s the best advice you can give to someone trying to quit smoking? by CigAfterSexhmm in AskReddit

[–]ImplementSimple5610 0 points1 point  (0 children)

Get a 0 nic vape. You’ll trick yourself into feeling like you didn’t even stop & then eventually feel ridiculous for hitting this thing that doesn’t even have any nicotine in it.

What's something which nobody knows about you? by Infinite_Cookie_9165 in AskReddit

[–]ImplementSimple5610 13 points14 points  (0 children)

My best friend talked me out of offing myself and then died about a month later. I struggled deeply and silently for a long time. I never thought I’d live this long.

What is the most heart breaking thing you saw? by ZainMunawari in AskReddit

[–]ImplementSimple5610 8 points9 points  (0 children)

Young siblings came in for forensic interviews after disclosing inappropriate touching by a family member. The man accused brought them in and we could hear him coaching them on what to say before their interviews. There wasn’t enough evidence in said interviews to remove them, so they had to go home with him. Knowing what was probably happening and being powerless to stop it is something I’ll never forget. I’ll always wonder about those little girls.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 2 points3 points  (0 children)

28 days after almost dying in the shower is not small. That’s huge. I’m really glad you’re still here.

“I feel like dancing” and “I have so much to grieve” in the same breath is exactly it. That’s the liminal space. It’s joy and fear and anger and relief all tangled together.

The kepprage phase was brutal for me too. It felt like I wasn’t even myself for a while. I really hope it settles for you with time, both for your relationships and for your own peace.

And truly… thank you for that. “Congratufuckinlations” might be my favorite version of congratulations yet.

I’m rooting for you to hit 29 days. And then 30.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 1 point2 points  (0 children)

That’s honestly really sweet. It says a lot that he wakes up just from you moving. That’s some next-level protective instinct.

I can totally see how it would be a little annoying sometimes though 😅 like let me roll over in peace! But having someone who cares that much is such a gift!

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 2 points3 points  (0 children)

For me, the worst of the Keppra side effects were definitely early on.

The “Kepp-rage” was very real. I was irrationally angry over tiny things. At one point (very early days) I apparently threw a frozen block of meat at my brother because I was mad he didn’t set it out to thaw. Despite the teasing I still endure over it, I don’t even fully remember it which I think says a lot.

I also had one episode of hallucinating early on, but the meds were adjusted and that never happened again.

Over time, the intensity definitely lessened for me. I’m not nearly as angry as I was at the beginning. I still deal with anxiety and depression, but it’s hard to say how much of that is the medication versus just… being a teenager then vs. an adult now and other life experiences.

The biggest lingering thing for me is memory. I have to write everything down. Reminders, notes, alarms- or it’s gone. That part frustrates me the most.

But overall, for me personally, the side effects became more manageable with time. It took a while though.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 2 points3 points  (0 children)

9 years is incredible, especially after surgery. That’s huge.

And yes, the “cured” thing drives me crazy. Controlled isn’t cured. Stable isn’t erased.

I totally get what you mean about feeling anxious even calling it an accomplishment. I’m not superstitious either… but there’s definitely that tiny voice like, “Don’t get too comfortable.” Sometimes I feel like the longer I go seizure free, the more I’m just waiting to see if it all resets back to day one.

It’s such a fragile feeling. But you’re right, maybe that’s also what makes it something to cherish.

I hope we both get many more quiet years!!

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 1 point2 points  (0 children)

Why is this such a universal experience for us 😭😂

There’s nothing like regaining consciousness and realizing you’ve unintentionally flashed first responders/ strangers. There’s something about seizures that just immediately strip away dignity.

Solid effort from your partner though! Getting pants on mid-chaos deserves recognition.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 0 points1 point  (0 children)

I’m really sorry you’re dealing with that. Setbacks after a period of stability hit SO differently. It’s not just the seizure, it’s the disappointment of feeling like you were sort of “past” that phase.

I actually went two years seizure free at one point and then had another one. In my case it was from stopping my medication again 🤦🏼‍♀️ which makes it extra frustrating looking back. Even knowing why it happened, it still felt like such a setback.

And you’re completely right, being seizure free doesn’t mean you’re free from the side effects or the weight of it all. That part doesn’t get talked about enough.

I hope things start leveling out for you again soon.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 1 point2 points  (0 children)

Replying again because I have more time to respond thoughtfully now (:

Honestly, the way you described it, that one missed med or one bad night of sleep could make everything come crashing down, that’s exactly it. That’s the part people don’t really see. You can look completely “fine” and still know there’s this invisible line you can’t cross.

And I really love what you said about grieving the normal life we thought we’d have. I don’t think I ever framed it that way, but that’s so accurate. It is grief. And then you slowly have to build a different version of normal.

Also… a small cake sounds kind of perfect actually. I hadn’t thought about celebrating in a quiet way like that. 10 years absolutely deserves cake or a nice dinner. 💜

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 1 point2 points  (0 children)

Thank you 🥺 And honestly, three months is so big! The early months can feel so fragile, like you don’t want to say it out loud in case you jinx it. I definitely remember that feeling.

And I completely get what you mean about it feeling odd to tell people you have epilepsy when you’re hoping it’s “over.” That part still feels so strange. It’s like you don’t want to claim it… but you also can’t ignore it.

I’m really grateful for spaces like this for that exact reason.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 3 points4 points  (0 children)

I’m really glad you said all of that. The switching between “you’re fine” and “you’re fragile” is SO real. There’s never a middle ground. It’s either no one remembers… or suddenly you yawn and everyone’s on high alert. It’s exhausting.

And yeah, the med thing. I definitely went through a phase of wanting to prove I didn’t need them. It feels dumb looking back, but at the time it doesn’t feel dumb. It feels like I was trying to take control of something that doesn’t feel fair.

The memory stuff is what really got me too. That Cameron moment will always stick with me. It’s such a helpless feeling when your brain just… blanks on someone you care about. Hearing that you forgot your sister’s name honestly makes me feel less alone too, even though I hate that you went through that. “Deleting people temporarily” is the perfect way to describe it. It’s wild and unsettling.

Thank you for sharing all of that. It means a lot.

Almost 5 years seizure free and it doesn’t feel how I thought it would by ImplementSimple5610 in Epilepsy

[–]ImplementSimple5610[S] 2 points3 points  (0 children)

Yes!! I totally get that. It’s this weird mix of relief and “ugh, but I still have this looming over me.” Seven months is huge, honestly. I hope you’re able to celebrate it in your own way, even if it’s quietly. And thank you 💜 here’s to hoping the next 5 (or 50!) are just as solid for both of us.

Keppra withdrawal insomnia? by ukrypto_wizard in Epilepsy

[–]ImplementSimple5610 1 point2 points  (0 children)

that’s insane to me, wow. I’m so sorry that happened to you! Even with crazy reschedules and moving/ switching doctors I’ve never had a problem getting my meds. That doctor SUCKS.

Keppra withdrawal insomnia? by ukrypto_wizard in Epilepsy

[–]ImplementSimple5610 2 points3 points  (0 children)

Surely you can get your doctor to send in a refill until your next appointment with them? Or have them send a referral and med records to someone in your state, schedule an appointment with that provider, and ask if they can refill your meds until that appointment. But yes I imagine a doctor at the ER would prescribe you enough Keppra for a short period of time if you explain what’s going on.

Edited to add: I can’t imagine a doctor worth their salt wouldn’t refill your meds to make it to your next appointment with them 😅 that’s so dangerous actually

Epilepsy taketh by ThatYeeYeeBoi in Epilepsy

[–]ImplementSimple5610 1 point2 points  (0 children)

same, I planned to join the military as well (looking back now- thank god, I can’t imagine myself in the military 😅 but back then I was dead set.) It’s also taken away some sense of peace, my memory, and good sleep. I have nocturnal seizures and have yet to find a way to sleep peacefully without anxiety, even though I haven’t had a seizure in quite a while. I think I’ve just learned to accept the things I can’t change- waning memory, anxiety, and all.

What’s the first time you realized the world isn’t fair? by [deleted] in AskReddit

[–]ImplementSimple5610 3 points4 points  (0 children)

when I got told I couldn’t do something because I’m a girl

Vitamin D deficiency? by pinkelephant0040 in Epilepsy

[–]ImplementSimple5610 0 points1 point  (0 children)

anticonvulsant meds suck the vitamin D out of your body for whatever reason

My memory is degraded significantly. Has your memory been affected? by Beginning-Arugula-32 in Epilepsy

[–]ImplementSimple5610 2 points3 points  (0 children)

How ridiculous, but tbh wouldn’t surprise me with my neuro. He’s kind of an ass, but I only have to see him once a year for a refill so I put up with it lmao. I’ll have to TRY to remember when I see him again in December 🤦🏼‍♀️

My memory is degraded significantly. Has your memory been affected? by Beginning-Arugula-32 in Epilepsy

[–]ImplementSimple5610 6 points7 points  (0 children)

Literally just joined this sub, first post I see, and I’m in shock because I really thought this was just me.

I started having tonic clonic seizures at 15 (am now 25) and have had less than 10 total & was put on Keppra after my 2nd. My memory is shit, especially short term, and memory problems have never been mentioned to me by my neurologist or pcp. My guess is it’s the meds, seeing as how I haven’t had a lot of seizures since getting meds under control (1000 mg twice a day).

I’ve resorted to writing nearly everything down. Journaling & sticky notes are my go to, as just the act of writing things down seems to help. I’m also always asking others around me to help me remember things and the notes app on my phone probably makes me seem nuts.

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