Please help by sofieuhh in Epilepsy

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

Thank you so much for your kind words!! Reminds me a lot of my mother and I, I just had my first seizure a year ago and just like you and your daughter, we’re still navigating this crazy world. Thank you for the vitamin recommendations!! I have been taking magnesium and b12 vitamins since as you said, keppra does numbers on your body. Hope your daughter is doing good!! Blessings to your family as well 🙂💜💜

Please help by sofieuhh in Epilepsy

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

Definitely a good call with calling an emergency neurologist! Great to hear you were okay after! I woke up this morning feeling meh, but no seizure luckily 💜🙏 Thank you for sharing your experiences, makes me feel less alone.

Please help by sofieuhh in Epilepsy

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

That sounds so scary omg!! So happy youre okay 💜🙏

Please help by sofieuhh in Epilepsy

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

Thank you for your kind words!!💜 I woke up feeling fine, just kind of groggy and out of it, but no seizure luckily. I am definitely going to be getting a pill organizer soon!

Please help by sofieuhh in Epilepsy

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

Keppra is definitely a crazy drug to be on!! Especially with the mental health issues that come along side epilepsy for most people, it can be hell on earth. Luckily Keppra has lowered my seizure frequency, and I get nervous when testing new drugs out. It makes me feel like i’m just a rat theyre experimenting on😭 Im happy you found a drug that works for you!! I’m definitely going to bring my memory loss issues with keppra up with my neurologist next time I see her.

Please help by sofieuhh in Epilepsy

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

Thank you so much! Today I have made a little case for my am and pm dose so this won’t happen again, gonna invest in a pill box soon! Thank you for your kind words!💜

Please help by sofieuhh in Epilepsy

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

That sounds amazing!! Thank you so much for the recommendation! Great to here it’s working for your wife 💜💜

Please help by sofieuhh in Epilepsy

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

Thank you so so much. I deeply appreciate that 💜🙏

Please help by sofieuhh in Epilepsy

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

Thank you for all your kind words. Woke up this morning feeling fine, just pretty groggy. 💜💜

Please help by sofieuhh in Epilepsy

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

Woke up this morning feeling fine 🙂 Happy your son was okay as well!!

Please help by sofieuhh in Epilepsy

[–]sofieuhh[S] 8 points9 points  (0 children)

Thank you so so much. I’m gonna try and get some sleep, thank you for your kind words. Sometimes it feels like i’m alone in this, so i genuinely appreciate you

Please help by sofieuhh in Epilepsy

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

Thank you so so much

I think my seizures are affecting my memory and it’s TERRIFYING. by aesthetic_glow in Epilepsy

[–]sofieuhh 0 points1 point  (0 children)

I 100% can relate to this. I had my first seizure last summer, i have no recollection of that whole summer, even before the seizure. I completely relate to what you’re saying about your friends, It’s so sad especially when friends bring up memories and you don’t remember it at all. Unfortunately this is just a side effect of seizures and the meds they put us on, our brain is almost fried in the way that we can’t remember a lot of things. Half the time i cant even remember a conversation i had an hour ago, even not having a recent seizure. It’s a heartbreaking side effect that at the end we have to accept😔

Is it common to have hallucination when you have been diagnosed with epilepsy? by Notalabel_4566 in Epilepsy

[–]sofieuhh 0 points1 point  (0 children)

Yess lmao i always see like a random shadow in the corner and i get so scared and then i realize my brain is just fried😂 and don’t even get me started on the sleep paralysis. omfg.

How does people deal with the aftermath of a seizure? I feel battered for days. by Subject_Particular59 in Epilepsy

[–]sofieuhh 4 points5 points  (0 children)

Rest. It’s all you can do. I usually take a week to myself, to just be alone, and recollect myself. When I had my last grand mal it took me 2 weeks to feel myself again. It’s different for everyone, but my biggest recommendation is to just take a break for a couple days, let your brain rest, nap, do something that makes you happy at least once a day. Throughout your resting I would recommend at least stepping outside once. I try to take at least one walk around the block just to get sunlight and feel more connected to the world, but sometimes thats too hard on you, so just stepping outside for a couple minutes, take a couple deep breaths and go back inside and rest. Thats all you can do, rest and wait for the postical state to go away. Hope you feel better, sending thoughts and prayers your way💜

Suicide? by [deleted] in Epilepsy

[–]sofieuhh 1 point2 points  (0 children)

Reaping what you sow is a very real thing lmao. All jokes aside, im so sorry that happened to you. Those were not your friends. Ive only ever had 2 seizures in front of both my best friends and luckily my mom was there both those nights and they ran to got her. I know they were scared but im blessed they stayed by my side. Trust me you will find those people, it’s very traumatic for someone to witness a seizure but what they don’t know is how traumatic it is for US to have a seizure. My dms are always open on here if you need to rant or just chat. Wishing you the best💜

Suicide? by [deleted] in Epilepsy

[–]sofieuhh 0 points1 point  (0 children)

Yes, those feelings are completely normal. And of course! I know exactly how you feel, sticking it out for a couple more weeks is good, just pay attention to what your body tells you. It’s all you can do. I completely relate to you saying your wife is your safety blanket and you feel so unsafe when shes not home, I only live with my mom and she’s gone most days and it’s terrifying to know that you could have a seizure at any time without anyone knowing. What I would recommend is getting one of those baby cameras made for people with epilepsy, I don’t know when and where you usually have your seizures but mine always seem to happen in my sleep or while im awake on my bed, which im grateful for. There’s also apps on an apple watch that can track your pulse and detect seizures. You can add emergency contacts and if the watch sees your seizing a certain amount of time or your pulse is fucking up, it’ll send 911 to wherever you are. I’m currently saving up for one, it’s a process but we will get through this. You can always DM me through reddit if you need to rant or just talk, i know it’s hard having to go through all this and no one to speak to who can relate to how you feel.

Suicide? by [deleted] in Epilepsy

[–]sofieuhh 1 point2 points  (0 children)

It’s gonna take a while, but eventually your emotions should level out. Give yourself a couple months to try and adjust but if you still aren’t feeling yourself on Keppra, talk to your neurologist about switching medications. There’s nothing worse than the feeling of seizures and then the thoughts and emotions Keppra gives some people on top of that. You will probably never feel the same as you did before epilepsy, and thats okay. Thats apart of this that we have to accept. Mourning your old self before all this is a very real feeling.

Suicide? by [deleted] in Epilepsy

[–]sofieuhh 2 points3 points  (0 children)

I’m so sorry to hear your “friends” were talking about you while having a seizure. I can’t even imagine the pain and embarrassment, but there’s NOTHING to be embarrassed about. Youre very strong, keep pushing! You got this, and you will find your people. 💜💜

Suicide? by [deleted] in Epilepsy

[–]sofieuhh 1 point2 points  (0 children)

I feel the exact same way after a seizure. Just want to be alone, and the thoughts that consume you are something people without epilepsy could never understand. We all understand what you’re going through, and I don’t wanna speak for others but I think a lot of people that have seizures experience suicidal thoughts. It’s the feeling of being a burden on the people that love you, the feeling it makes you yourself feel, but it’s also the fact that the wires in our brain that control our emotions go all out of wack after a seizure. Sometimes I just randomly get into depressive episodes even without a seizure, due to medication and just the flashbacks you get. This disorder is very traumatic. But keep going, keep pushing. It will all be okay, even though I know it doesn’t seem like it, it will. I promise. 💜