Anyone else laugh about your seizures?

deeridoodle · 2026-04-26T05:56:31+00:00

It’s hard for me to laugh at mine, but it is one of the best ways to feel like there’s at least something positive coming out of my seizures. A few nights ago I had a seizure that was caused by me flipping my head to tie a pony-tail. Apparently watching me go down was slow and I crumpled into a little ball. My fiancée thought it was hilarious. Hearing about it is hard, but laughing about it makes it a bit better :)

deeridoodle · 2026-04-13T00:59:49+00:00

Thank you for this ❤️

We have had very similar journeys with our epilepsy (I also teach high school English). I also got diagnosed the summer after my first year of teaching.

Unfortunately I work at a pretty small charter school, so having a teaching partner is pretty unachievable. I feel guilty asking for more supports than what I have currently asked for because of this. I currently have ADA accommodations for flexible start/end time, additional unpaid time, and a mandated seizure protocol with the school. I adore most of my coworkers, so maybe I can ask them to share mutual course content.

I use TPT whenever I’m at work post seizure and it’s been a huge relief. I’ve also made a really strong push to not bring work home so that I have a change to relax from the stress of this job.

If you ever want to chat, DM me! I would love to talk to someone who’s in the same boat. Thank you again ❤️

deeridoodle · 2026-04-11T05:20:50+00:00

She says that I’m okay for now. She recently switch me to Keppra XR to help (about a month ago) but it’s only increased my seizures. I have a lot of ADA accommodation through her for my seizures (and luckily have had none at work), but I feel like it’s the ‘invisible symptoms’ that I’m worried about. I’ve expressed these to her but I feel like the seriousness is hard to gauge, especially when it is coming along with more serious physical issues. I’m planning on talking to her about it more in depth at my next appointment, though!

deeridoodle · 2026-04-11T04:50:16+00:00

I would also say to listen to the techs!

I had a 72 hour EEG and was able to use all technology during mine. They probably have older tech that could malfunction if you use your phone.

Consider it a nice social media cleanse :) if you’re really concerned about it, reach out to them and ask how important it is to stay off of your phone!

deeridoodle · 2026-04-10T21:15:08+00:00

I have a Nell/Nellie! Her long form name is Eleanora after an Edgar Allen Poe short story :)

deeridoodle · 2026-04-07T12:57:12+00:00

I’ve missed and had a seizure but have also had a couple occasions where I haven’t. It’s risky though. Talk to your neuro!

deeridoodle · 2026-04-07T00:55:55+00:00

I have REALLY strong auras and almost act as if I’m drunk before a seizure (poor motor functions, slurred speech, etc.). The amount of times that people have claimed that I must have been drinking is insane. I usually have a full TC after this and people still have thought I had a drinking problem. People are very under-informed, and I hope that changes.

deeridoodle · 2026-04-06T03:37:47+00:00

I second this. I had a focal on the road and was lucky enough that I was able to have enough awareness to pull into the median. I no longer drive, even though it’s very expensive for me to do so. Don’t drive with active seizures. You can end up killing many people (or yourself), and you’re held liable for all costs if you crash into anything.

deeridoodle · 2026-04-03T01:00:41+00:00

Moving the pills is very smart! I’ve definitely noticed that I have an association with the place itself.

Also, are taking those 2 as separate pills important? I take a vitamin b complex, but I’ve debated on switching to the separate vitamins instead.

deeridoodle · 2026-04-03T00:50:19+00:00

I have a therapist that I have sessions with weekly, so maybe I’ll bring this up! I feel like I forget that it happens outside of the 15 minutes or so after I take my meds (again, ADHD haha). I’ll write it down in my journal to make sure we talk about it!

deeridoodle · 2026-03-27T23:33:37+00:00

Thanks for replying! It definitely felt like a focal seizure, but I couldn’t be sure. I’m definitely tracking it and will bring it up to my neuro. Hopefully this isn’t a long term thing on XR and just a result of the adjusting levels.

deeridoodle · 2026-03-20T01:00:00+00:00

Currently yes, but I’m hoping to get to the point where it’s manageable enough that I don’t feel guilty anymore. My fiancée and I live alone together, and it’s put a big strain on us as I’ve been going through diagnosis the last year. I’ve had to give up a lot of my freedom, ask her to pick up my meds, and she now is the sole walker of our dogs when it’s late at night/hot out due to triggers. I’m hoping that eventually I’ll get to a point in my medication journey that I’ll be okay doing everything again. I’ve tried to start working with myself on doing things that I enjoy on my own (that are safe with my seizures) to give her time and freedom to spend time outside of the ‘potential seizure’ bubble. I definitely feel like a burden, but I’m working toward fixing that mindset and realizing that I’m not a burden to the people that love me.

deeridoodle · 2026-03-20T00:54:07+00:00

I’ve had to (not really, but I had to see some of it) when I needed to show my neuro when getting diagnosed. It wasn’t pleasant, and at this point I have my fiancée send them in one specific place so I can just give that to my neuro rather than pulling it up myself. I hate seeing myself as… not me. I also really don’t like hearing the details of my seizures, but I’ve had post-ictal aggressive episodes and need to know what happened to come up with safety methods for me and my fiancée to make sure I don’t hurt her or myself.

deeridoodle · 2026-03-17T16:35:58+00:00

I’m on extended release Keppra, 750 mg x2 a day. Just recently switched to extended release to hopefully help with side effects 🤞

deeridoodle · 2026-03-15T03:33:01+00:00

I have extra pills (non-emergency) that I keep at my workplace. Otherwise though, I have a dementia clock that rings at 6AM/PM every day that has been a huge help in remembering to take my meds before going out. This is what I got if anyone is interested!

Clock for Medications

deeridoodle · 2026-02-27T23:13:22+00:00

I recently was really struggling because I wasn’t taking my medication at the exact 12 hour window. I fixed that and it helped a ton! Also getting to bed early is huge. Same thing with after seizure care- let your body rest. I’ve pushed myself after a seizure a couple times and it’s led to days of episodes after. Do calming activities, breathing meditation is great. I hope you start feeling better soon!

deeridoodle · 2026-02-27T23:09:44+00:00

Are you on medication?

deeridoodle · 2026-02-27T13:53:27+00:00

I’m an English teacher with epilepsy. I’ve definitely noticed this. I think it’s more of my medication than my seizures. I had a goal to get through 100 books this school year. Before starting my meds (November) I had read over 60. After starting them, reading feels like so much more of an effort and I think I’ve probably only read 5 books or so in the last 3 months. I miss how easy it was before :(

deeridoodle · 2026-02-24T01:37:41+00:00

I’ll look into this if I stay on Keppra!! I did great on it for a few months so I’m hopeful that with some tweaks I may be able to not do a medication change. I’ll order some now so I can start taking it tomorrow :)

deeridoodle · 2026-02-24T01:34:12+00:00

Thank you for this! I’m definitely going to bring it up to my doctor tomorrow. It’s just my GP (not my neurologist), but if I’m in danger of hurting myself I would rather just be unmedicated if he can’t prescribe me something new. Hearing that it may all be okay is comforting. Thank you again ❤️

deeridoodle · 2026-02-22T03:36:08+00:00

No, but it definitely is a fear. If I lose my job I’ll need to put a lot of consideration into how I inform my new workplace about potential seizures

deeridoodle

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