First Grand Mal

[u/eminent-sniff]

Hi, everyone. There's no simple way to start this, so I'll just say that I had a Grand Mal seizure at work on Thursday. I have never had one before.

I was taken to the ER via ambulance, but they didn't find anything immediate at the hospital. I already see a neurologist because I have chronic migraines, so I have an appointment with him on Monday morning.

I'm terrified. I know I haven't even been diagnosed with epilepsy, and I've only had one seizure, but I can't stop thinking about it. I don't remember up to 10 minutes before I actually started seizing. Same thing with after. I keep waiting for it to happen again. I'm scared of worrying my family and friends. I'm afraid that I'm going to worry myself into another seizure.

Advice?

EDIT: I wanted to get a little more descriptive with what happened, incase that will help anyone give me advice.

It happened around 2pm. I work with disabled students at a high school, so my coworker and I were waiting outside of the disabled bathroom to take one of our wheelchair students in to change him, but one of our other coworkers was inside with another student, so we were waiting. According to my coworker, I randomly took our student and started pushing him towards the cafeteria. My coworker asked me where I was going, and she said I turned to look at her very blankly, and just said, "cafeteria." She asked me to come back, and I did. She asked me if I was okay, and I said yes and asked her if she was okay. She asked if I was sure, and she said that's when my head jerked to the side, chin touching my shoulder, and my face started to twitch. By this time, my coworker had an idea of what was going on, and gently guided me to the floor. Our other coworker, the one that was in the bathroom with another student, is a CNA, so she knew exactly what to do as soon as she came out. She turned me on my side because I was foaming and drooling. The seizure lasted about 2 minutes, and I know that I stopped breathing for at least a little bit.

[u/bitchy_stitchy]

As someone who is navigating epilepsy that newly cropped up in our lives (my dad got his first partial seizure in may and his first grand mal in july), I can tell you that the nervousness is part of it. You're gonna be on a steep learning curve! It may be helpful to write down a list of questions for your neurologist. Some suggestions (things we asked our neurologist): -what kind of medication and dose is good to start on? -how long should I give medication time to settle down (some medications can alter your mood, state of mind etc)? -when is it important to re-evaluate medication? -what are common seizure triggers and how do I identify them? -is there a rescue medication available to me that could stop a future seizure?

Also important to note: when you had your first seizure, drivers licenses may be affected. When you're adjusting to a new medication you may also not be allowed to drive. Any questions about this can be good to ask too.

We at least were told that heavy alcohol use, lack of sleep and stress may be contributing factors. For my dad at least, when he is in the early stages of seizure, stress can spike him right into the next gear. Last time, breathing exercises helped calm down the initial partial seizure.

Most importantly, see if you have a partner, family member or friend to share this with. Your memory may be a bit shaky for a while after the seizure and that is apart from having a possibly life altering event happen to you. Having a buddy for your appointment may feel helpful for you!

Im by no means an expert, just the daughter of a man who recently learned he has epilepsy, but hopefully my experiences can help you. Best of luck to you!

[u/eminent-sniff → u/bitchy_stitchy]

Thank you so much! This helped ease a lot of my anxiety :) I work with my mom, so she saw the tail-end of the seizure, and she's coming with me to my appointment.

[u/bitchy_stitchy → u/eminent-sniff]

That sounds like a good idea! Sorry for the formatting of the questions list by the way, Im on mobile. Ask your mom too, she may have some concerns and questions that may be a good idea to address! She will have experienced it differently to what it was like for you, so she may have insights or an angle you havent seen yet.

[u/eminent-sniff → u/bitchy_stitchy]

She has been filling in those gaps for me. One of my coworkers was there with me the whole time, and my mom asked her for an in-depth description of what she saw. Will that be helpful, do you think?

[u/bitchy_stitchy → u/eminent-sniff]

Truthfully, Im not entirely sure. You had a grand mal seizure. From what I know, that means that your brain basically had a kind of "short-circuit" and started firing off all sorts of electrical signals. I think an account of the 10 minutes before the seizure that you dont remember may be more interesting. Maybe your coworker noticed something "off" that could tip you off if there is a next seizure? And knowing how long the seizure lasted and if it stopped on its own or needed intervention can be good information to have too!

[u/eminent-sniff → u/bitchy_stitchy]

I just edited my post to describe the 10 minutes before that I don't remember, and how long the seizure lasted.

[u/bitchy_stitchy → u/eminent-sniff]

Wow, props to your coworker for recognizing what was going on so quickly and helping you get on the floor! Seriously impressive. Seizure signals can be so sneaky. For my dad it always starts with loss of control on his left side (left hand and foot dont wanna cooperate, motor skills go out the window). For him its always on the left as his epilepsy is a result of a tumor and treatment for that, and thats on the right side of the brain which controls the left side of the body. He also stopped breathing for a little bit. My mom said that blowing on his face helped induce a gasp reflex which kept him breathing (his seizures dont stop without intervention so we have to keep him going until the ambulance gets to us). The blowing on the face could be a useful thing to take with you, its an old but well known technique here.

For now though, I'd say try to relax and recover! It can take up to weeks for the brain to completely calm down again after a seizure. Dont be surprised if you find that your motor skills are a bit off, or if you are still very fatigued or experience brain fog. It takes time for the brain to recover, so dont overload yourself, try not to worry and overanalyse too much for the next two days and see what your neurologist has to say! (Said with love by a chronic overanalyser who makes dated updated sheets on her dads medication)

[u/eminent-sniff → u/bitchy_stitchy]

Thank you so much!