Screaming when regaining consciousness after seizure

@sweetcheeks33
I embrace my life fully, and while I sometimes experience postictal aggression, it’s just part of my journey. My neighbor has heard my epilepsy cry—a loud moan that occurs when the contractions force the air from the lungs and passes by the vocal cords creating the noise. I don’t feel embarrassed about it; in fact, I appreciate the concern from those who call or come over.
I once had a seizure that led me to fall through a wall into the next duplex—no big deal. Epilepsy does not define me; I live on my own terms. If a seizure happens, it happens. It’s not my responsibility if someone feels disturbed or scared by it; they need to understand that it’s their issue, not mine. For 59 years, I’ve refused to let epilepsy dictate my life. I take pride in who I am and what I can do, unashamed and unembarrassed. I go where I want, do what I want, and live life to the fullest, always in control of my path—not my condition. Epilepsy can destroy your quality of life if you allow it.
Take care,
Jake

It was pretty common for me to have a reaction like that too when waking from a grand mal. I think most people would be concerned for your safety & would completely understand.

Hi Jake, thank you. You are quite right that we should live our lives as normally as we can. Up until now very few people even knew I have epilepsy, it was on a need to know basis only as my seizures were well controlled. If I felt a bit off then I would stay at home just like anyone does if they're not feeling well. However, the amount & severity has now changed though. Since the pandemic I have had about 6 grand mals compared to the odd rare one once in a blue moon previously. If it was just the increase I could cope with that, unfortunately the screaming is like I'm being attacked. Its also the first major one I've had at night which is very concerning. My neurologist is trying to arrange an appt with a specialist epilepsy nurse for me until my next appt next April. To quote Gloria Gaynor 'I will survive!!'

I've been told I scream during some seizures. My wife told me I screamed so loud one night that she was surprised the neighbors didn't call 911. An ambulance took to the ER one night where I was drug tested, I assume it was because I was screaming.

The screaming bothered me so much that I had to ask after every bad seizure if I screamed. Then I realized, I don't hear it, don't remember it and have no control over it so why worry about it. I tell my family, friends and neighbors about my seizures and the possibility of my screaming.

Tell people, talking about it will help them understand it's not you, it's what happens to you.

@sweetcheeks33

I want to remind you that your epilepsy doesn’t have to define your life or hold you back. If your neighbors hear you during a seizure, it's okay. You can always talk to them and explain what's happening. Remember that this condition is out of your control, so there's no need to worry about what others might think.

I truly hope you don’t let your seizure disorder confine you to your home. You can’t predict when or where a seizure might occur, and I understand how daunting that can be. Please know that it’s completely normal to feel concerned, but don’t allow epilepsy to stop you from traveling or staying with loved ones.

Whatever happens during a seizure is something you can’t control, so there’s no reason to feel ashamed or embarrassed. Being open and honest about it is the best approach.

Take care,
Jake

There was a day when talking about my seizures was off limits. I bought a medic alert ID bracelet and wore it on my wrist in case I had a seizure in public, then kept it out of view as much as possible.

I had blood withdrawn for a routine blood test, the phlebotomist saw it, asked questions and we talked for several minutes. She wasn't judging me, she saw a medical condition and wanted to learn more. That was one of the reasons I decided to be more open about my condition.

My son and one of my granddaughters saw me have a bad seizure, it terrified them. I realized it was wrong for me to "spring that on them without warning" and that made me more proactive. My wife took a video of me having a seizure for my doctor, I sent a 2 minute version to my daughter, explained it to her, told her it will last a few minutes and then it's over.

Wear a medic alert bracelet and talk about it when people ask. I don't recommend screaming seizures "from the rooftops" but a select group of people deserve to know. Make it a routine conversation and you'll be surprised how much it helps you.

Thank you everyone. I've had epilepsy since childhood back when there was still a stigma to it. Thankfully school was fine, in fact my classmates were quite protective of me so I was never bullied because of it. There was a boy in my neighbourhood tho who started my waryness about telling people. If he heard me saying I'd had a 'funny turn' he'd start laughing at me but was the only one who ever did back then as far as I remember. As I got older it became well managed to the point where I asked if I still actually had it, sadly I do but I carried on living my life & didn't let it define me, as we say these days. I could go years without having any big ones so I just didn't mention it to people unless I needed to. Unfortunately a couple of people I told then didn't speak to me again afterwards. Their problem not mine I know but it hurt & made me feel embarrassed. That was about 30 years ago now but it left it's mark. Years later I still only talk about it when I have to despite having more positive reactions than negative throughout my life 🤷‍♀️

It's good to know that I'm not the only one that screams, thank you very much for sharing your experiences! I will be getting a medic alert bracelet & maybe also something recognisable for my phone.

I've decided not to let it stop me travelling, the only thing I will give up is going to musicals at the theatre. Concerts are a definite no go as the flashing & strobe lights etc are a trigger for me though.

Thank you again everyone 💜

Flashing lights are a big issue for me. I've gone to a couple of concerts only because my family and friends wanted to go and I didn't "that guy" forcing them not to go. I have a quick exit plan and someone designated to get me out immediately if needed, wear extremely dark sunglasses, sit down, turn my head and cover my face whenever lights start.

I am friends with members of a popular 70's group, they convinced me to go. They said, "we're a rock band, we've seen it all", "you won't be the first person flipping out at one of our concerts".

I've left the room during TV shows, avoid theaters and don't think going to the opera or Broadway play is a good idea for me.

Haha, very well put! I love rock too & that's absolutely true, never thought of it that way!!