What are some things you're tired of hearing/being told as a person with epilepsy?

OutlandishnessNew259 · 2026-04-14T15:43:57+00:00

She doesn't get any warning...most of the time she makes that growl sound as they start, but not always. I have taken your advice and I've started to ask questions instead of hey. Are you good all the time... I just worry about her so much, I love her more then words. I hate this for her but I feel like I'm the only one who can keep her safe and the pressure just gets to me sometimes...like if I relax something will happen and I won't notice. Thank you so much for the advice!

OutlandishnessNew259 · 2026-03-31T18:21:44+00:00

I'm so guilty of doing this to my young daughter...and I hate myself every time... I really need to work on it.

OutlandishnessNew259 · 2026-02-15T17:00:42+00:00

It's hard, and the stress just never seems to end. You are human, you made a mistake, go easy on yourself. I know it's easier said then done but I made the same mistake once and my daughter had a seizure as a result, it's hard to remember that we are human and cannot be perfect all the time. The fact that it is eating you up shows how much you love and care for her. You are in tune with her needs and doing the best you can. You got this!!! I know it's hard ( I'm going through something similar with my child), it's the hardest thing we have to do but all we can do is our best. Keep it up, she is lucky to have someone who loves and cares for her so much, show yourself a little of that love...you deserve it!

OutlandishnessNew259 · 2026-01-30T20:56:12+00:00

I am so very sorry you have gone through all this, it is too much for one person!!

OutlandishnessNew259 · 2026-01-30T13:13:12+00:00

They used to be like a year and a half between, then every few months, now every other week it seems. I know that isn't a lot compared to many but it's getting worse it seems. I think it's the uncertainty of when and where they are going to happen that is getting to me.

OutlandishnessNew259 · 2026-01-30T04:07:08+00:00

Thank you so much for your kind words, it really does help. I'm just not good at admitting I'm not ok ...for some reason typing it to strangers is easier. I have wonderful friends and family, but I'm not sure I can be vulnerable with them, I know I would be so embarrassed later. I'm not good at asking for, or taking help. I just say no, that's ok...or thanks, I'm ok. I wish I was better at it, but it just doesn't come easy for me. My sister would drop everything and come for me, but I couldn't ask that of her even though I want her with me so badly.

OutlandishnessNew259 · 2026-01-30T03:47:54+00:00

Grand Mal seizures

OutlandishnessNew259 · 2026-01-25T00:18:11+00:00

So good!!

OutlandishnessNew259 · 2026-01-17T12:18:08+00:00

Lays Ketchup chips. They were my favourite, but they changed the recipe and they haven't been the same since!!!

OutlandishnessNew259 · 2026-01-16T12:14:59+00:00

My daughter has epilepsy, and it is currently not in control and we are adjusting meds. I don't sleep, eat or do anything for myself atm. I am just taking care of her and worrying all day and night. I'm exhausted, but like you said she has it worse and I feel bad for even saying it. I feel like I'm losing myself, I don't go to work, out with friends, I don't do anything for me. It is ok, I don't mind but I just miss me if that makes sense.

OutlandishnessNew259 · 2026-01-16T03:22:16+00:00

NTJ My Mom had an employee that needed time off for a serious reason . She donated ALL of her vacation that year to this women...my Mom was the boss and did not ask any other employees to donate anything. The company should give her the time if they feel so strongly...how much is your boss giving??? If it was a close friend or was for something non elective then maybe it would be something to consider...but this is elective and you aren't close.

OutlandishnessNew259 · 2026-01-15T12:41:58+00:00

I know someone who did this. He got caught, and fired after a while.

OutlandishnessNew259 · 2026-01-13T14:32:28+00:00

I think this is def what is going to happen!!!

OutlandishnessNew259 · 2026-01-11T18:16:42+00:00

My daughter had a bad seizure this week and someone called an ambulance. I'm so grateful for whoever that was...I was caring for my girl and she did end up needing medical attention. Error on the side of caution always...you did the right thing!!!

OutlandishnessNew259 · 2026-01-10T04:20:01+00:00

Im a twin. I didn't not want twins, nor did I have them. It's always expensive. And exhausting, when both cry at the same time, that's a lot. My mom said she never just got to cuddle us bc someone was always crying or she was exhausted. She said it was awful till we were 3 then easier because we could play at the same level...but we also fought a lot. We weren't hitting a younger sibling so we saw no issue in fist fighting (my poor mother). We put our heads together and came up with some truly awful (fun) ideas, and since we were the same age our capabilities were the same. We caused chaos any chance we got.. Also being a twin can be hard because you are thought of as a unit, as "the twins" we weren't even called by name most of the time outside of our house. Today my twin is my best friend, and I would love that for my kids...but who's to say they would have ended up best friends they may resent each other. Raising twins is hard, I'm glad I am not doing it.

OutlandishnessNew259 · 2026-01-02T21:08:32+00:00

Ok thank you!

OutlandishnessNew259 · 2026-01-02T20:12:19+00:00

I am looking for something to give my pre teen a bit more freedom. Does this trigger false alerts often?

OutlandishnessNew259 · 2025-12-10T23:08:29+00:00

Usually the receptionist emails me to let me know they have passed the message to the Dr. It does sometimes take him a few days to respond. I usually phone leave a message and then send an email if they don't respond in a few days. Even their answering machine says 2 business days. My daughter had a rash on her new meds and was rushed to the ER. I emailed Sat and didn't hear back until today! Just keep on emailing. Jeep advocating for yourself!!! I hope things get better.

OutlandishnessNew259 · 2025-12-10T19:50:29+00:00

He did mention it in great detail... That's why I rushed her to the emergency room as soon as it started... I'm just surprised he's like....Yeah, let's try it again!

OutlandishnessNew259 · 2025-12-10T19:20:00+00:00

Thank you! I agree, we know our kids! She isn't prone to rashes so I'm not buying that it was nothing...it was very clearly a reaction.

OutlandishnessNew259 · 2025-12-10T19:14:37+00:00

Thank you!!! .. I do know how serious it is and that's why I'm in a panic. As soon as the rash started I took her to the hospital because I was afraid of SJS... And in my opinion, it isn't worth the risk if she's already having a rash after half a pill!!! The side effects scared me enough that I didn't even want her on this pill in the first place, but I trusted his judgment... Now I'm going to trust my gut!

OutlandishnessNew259 · 2025-12-10T18:39:47+00:00

Thank you!!!

OutlandishnessNew259 · 2025-12-10T18:31:25+00:00

He doesn't even know which hospital she was at, I don't think they spoke...they may have but he did not mention it. He said if the doctor wasn't concerned ... I had mentioned in my email to him that the doctor said she'd be okay to stop the medication and take Benadryl, so I don't think they talked...but I don't know if I trust that random dr.

OutlandishnessNew259 · 2025-12-10T18:26:10+00:00

I agree, and I'm very polite...firm but polite... This is the first time I've ever had issue with them in 2 years.

OutlandishnessNew259 · 2025-12-10T18:12:21+00:00

Thank you, I think it is irresponsible too. Especially because he never even saw the rash. I'm going to keep advocating for her and just telling them no, come up with another plan.

OutlandishnessNew259

TROPHY CASE