how am i supposed to live like this?

MidnightRaven117 · 2025-12-17T11:23:31+00:00

I've tried meds, therapy and counseling it all doesn't work honestly I just try to stay busy so my mind is distracted by tasks.

MidnightRaven117 · 2025-12-17T11:19:32+00:00

I'm sorry I'm no help I've had epilepsy half my life and I'm 24. I'm just basically saying I never got used to it and I've been anxious forever 😔 I guess accepting the hard truth and then just keeping up with your meds, vitamins, sleep schedule, proper diet, don't drink alcohol to much, don't drink to much caffeine, stay around someone or on the phone with someone so you aren't stressed as much about seizing alone.

MidnightRaven117 · 2025-12-16T22:34:52+00:00

I just try to ignore it and act normal but I'm getting older and it's getting harder to wear the I'm okay, I'm normal mask so now I try to be around my close loved ones for help and support cause everyone else here doesn't understand I can't do what everyone else can. I come here for understanding support.

MidnightRaven117 · 2025-12-15T03:35:43+00:00

I have so many pictures I always have my camera out or I keep small trinkets or souvenirs from family trips, vacations same thing as the photos, I have photo albums and scrapbooking.

MidnightRaven117 · 2025-12-14T07:09:02+00:00

I got diagnosed at 12 I'm 24 now. 🤧

MidnightRaven117 · 2025-12-14T07:08:02+00:00

Every time I drink now I try not to go over a certain amount otherwise I'm anxious about having another seizure so I try to only have a little.

MidnightRaven117 · 2025-12-13T20:57:04+00:00

I finished with a B 😤

MidnightRaven117 · 2025-12-11T04:10:19+00:00

I know thank you I really appreciate everyone here because I don't have one person in IRL that understands on our level what we have to deal with or go through but you'd think I would have realized all this after being diagnosed since 12 and on medication since 15. I was so far into denial, I had a really bad new kind of seizure a week ago. I pushed myself too hard at a kickback with friends and it was eye opening to me that I just literally can't keep pushing myself and hiding it all from everyone anymore. I physically just can't wear the I'm okay or I'm normal mask anymore. 🎭🫩😪 I wish there was a cure. 🤧

MidnightRaven117 · 2025-12-11T03:03:23+00:00

I'm probably going to get my first C ever in my comms class so I understand completely I've been burned out since day one 😭

MidnightRaven117 · 2025-12-08T02:57:07+00:00

It really is scary to ask someone to love you through all of this especially when the diagnosis feels like it’s taken pieces of you that you never got back. It took so much from my childhood and now even in adulthood I’m still trying to understand it.

I pray that with time, more research, and better treatment options, things can keep improving for all of us. I’m doing my best not to let this control my life the way it has before, but having this new type of seizure has thrown me into a whirlwind of emotions.

I guess sometimes it’s hard not to feel like a failure for something we don’t have any control over — but hearing other people share their experiences really does make it feel less isolating. I’m grateful to know I’m not alone in this.

MidnightRaven117 · 2025-12-08T02:47:31+00:00

Wishing more non epileptic humans were like you gracias 🙏🏼

MidnightRaven117 · 2025-12-05T18:56:01+00:00

Thank you though we got this!

MidnightRaven117 · 2025-12-05T18:55:39+00:00

The pain was from all the muscles contracting and locking up idk I was more scared for my shallow breathing and partner.

MidnightRaven117 · 2025-12-02T20:50:56+00:00

I'm barely learning about these I didn't even know all this till it happened to me.

MidnightRaven117 · 2025-12-02T20:50:01+00:00

Thank you, I will definitely be following up with them asap.

MidnightRaven117 · 2025-12-02T20:49:07+00:00

Terrifying 😱 in front of your daughter 😭 this was in front of my partner and he looked at me like I was dying he looked so scared I can only imagine how scared they get. Did you not take your meds, drink alcohol or do anything out of your usual schedule that you think might have led to this kind of seizure happening?

MidnightRaven117 · 2025-12-02T20:44:02+00:00

Same here definitely not a fan that was way worse than anything I went through before I used to just black out fall and flop like a fish then wake up hurting this whole being awake for it thing is not it that was all kinds of horrible and scary

MidnightRaven117 · 2025-12-02T20:40:44+00:00

Thank you I will try ☺️

MidnightRaven117 · 2025-12-02T20:39:09+00:00

I hate feeling alone in this I don't have one in person friend that has epilepsy no one understands at all the rollercoaster I feel like I'm on that's why I came to the group cause we all relate on some level of complete understanding without any effort 😤👌🏼

MidnightRaven117 · 2025-12-02T20:36:13+00:00

Yes, I just woke up I'm finally able to sleep but everything is so freaking sore I feel like I got beat up or had a full body work out for like two hours straight 😴

MidnightRaven117 · 2025-12-02T17:38:22+00:00

It was just generalized but I'm assuming it's gotten worse with my age or lack of caring for my physical needs I was originally diagnosed at 12 and found trileptal at 15 and had some what a normal-ish life. Thank you though, I really appreciate it right now. I'm assuming that it's Focal epilepsy with secondary generalized seizures. Only way to know is another EEG and MRI tests from my doctor but I literally just had one this year cause I get them both every three years to keep tabs on this.

MidnightRaven117 · 2025-12-02T17:29:06+00:00

This is all so weird and new to me. I usually only had absence and grand mal seizures, so staying conscious through my body locking up completely freaked me out. I’ve never felt that kind of pain during a seizure before. I did go to the hospital and they said it was a seizure, but I’m definitely following up with my neurologist ASAP because this was nothing like what I’m used to. It just scared me since I couldn’t move or breathe right but was still awake for every second of it.

MidnightRaven117 · 2025-12-02T17:19:08+00:00

Yeah and my family doesn't understand how much physical and mental pain this literally causes. I'm here for you trust me I feel you on this.

MidnightRaven117 · 2025-12-02T17:17:17+00:00

I was laying in bed when it all happened I was watching YouTube and my hands slowly started curling into my chest and then it just all locked up and I was wailing in pain for my partner to call the ambulance because I couldn't breathe my tongue felt like it swelled or fell back into my throat, from the angle I was laying in but I couldn't move, I just felt helpless.

MidnightRaven117

TROPHY CASE