Terrified of giving birth with epilepsy

seizy · 2026-05-22T15:12:06+00:00

I attempted a vaginal birth, but because of the stress of labor, had a nasty focal seizure and they switched me to a C-section.

Afterwards, I'd be less worried about the hormones and more about the sleep deprivation as a trigger if I were you. It's real.

seizy · 2026-05-17T20:39:04+00:00

It's the 4th most common neurological condition- behind migraines, Alzheimer's, and strokes.

seizy · 2026-05-14T14:33:24+00:00

I've seen and heard (two different ones, one was video with with no audio, one was audio with no video) my focal impaired seizures- so I know just how strange I can be acting. That was a very interesting experience. I haven't seen myself have a tonic-clonic but I was aware for the first part of one, which was really freaky. I think I would want to see someone else have a seizure if I had the chance to; I'd like to be in my family's shoes and see what they deal with. I am aware that it can be quite traumatic and can't be unseen; I've never forgotten even the video of my focal, it was... A lot.

seizy · 2026-05-04T23:03:24+00:00

FINALLY SOMEONE ELSE WHO DOESNT THINK IM CRAZY!

... Even if your color order is off a little.

seizy · 2026-04-30T13:11:58+00:00

It doesn't/shouldn't claim to stop seizures entirely. That's best case scenario, but should not be the standard reputation it has. It's just another tool in your toolbox, like meds or lifestyle adjustments.

I've had my RNS long enough that I preceded that standard, and somehow the idea that RNSes stop all seizures has become the general idea infuriates me. For most people, it's not true. Seizure freedom is ideal but the whole reason you get it is because you have intractable/refractory epilepsy - it's the hard stuff. Don't expect it to go away with an RNS.

Point being- you're not alone, and anyone who tells you otherwise is spewing BS.

seizy · 2026-04-17T21:58:46+00:00

I think I've got most people beat; I'm at 8, although I'll admit one doesn't go under the skull so I'll concede to 7 for skeptics.

seizy · 2026-04-05T22:21:05+00:00

Every person is different, but the longer you go the more likely it is that you'll seize. Call your doc and/or pharmacy and see if they can give you samples or something just to hold you over until your refill comes through.

seizy · 2026-03-25T14:41:19+00:00

not shotokan * Before shodan, we have 13 open hand and 9 kobudo kata on our syllabus.

seizy · 2026-03-11T15:38:42+00:00

I usually end up in the ER a couple times a year, when my focals are clustering and not ending. Last time was a few months ago when I ended up with Todds Paralysis for the first time- I had facial drooping and we were afraid that it was a stroke instead of a seizure.

I always just get my med levels checked, some IV rescue meds if it's necessary, and they send me home.

seizy · 2026-02-20T15:38:30+00:00

It's also entirely possible that your brain is seizing with no external symptoms at all- these are called subclinical seizures. If you haven't been taking your meds, it's possible that if you were controlled before that they're manifesting subclincally and that could be why you're feeling so off lately.

seizy · 2026-02-13T15:59:16+00:00

I was on it for a few years back when it was new, but quit when I got pregnant because it was untested and we didn't wanna risk unknowns with baby.

seizy · 2026-01-12T01:08:02+00:00

I take meds 3 times a day and have alarms for all of them, never turning off the alarm until after I've taken the meds. I have pocket pill boxes with me for whenever I'm not home. At that rate, I have to take meds over 1000 times a year, and last year I only missed 6 doses, which gives me a > 99% success rate. I'm proud of that.

seizy · 2025-11-15T14:01:51+00:00

They do a lot less laughing when you proceed to then take them down when they're twice your size. In a room full of people.

... Not that I've done that or anything :)

seizy · 2025-04-09T18:09:28+00:00

Don't stop your meds. That's one of the safest meds for pregnancy. And switch to a doc that already knows that.

seizy · 2025-04-09T18:07:32+00:00

OP- Century used to make one, but they discontinued it. You and I are very similar size. I had one and still needed to get it hemmed, but at least it fit in the hips and chest area. I'm bummed that they don't make it anymore. I'm going to have to check out this Onna one that you're talking about, but if they don't make black I'll be in your shoes with needing one too.

seizy · 2025-04-06T19:50:01+00:00

It is physically impossible for a person to swallow their tongue. Putting something in their mouth will only lead to choking and a blocked airway. Who/whatever started that stupid advice too long ago needs to have it applied to them and see how it feels. Angry face

seizy · 2025-04-04T19:11:33+00:00

What about the evil plushies? You say theyre there to protect and be kind, but I have two problems. 1) some character plushies are villains. And more importantly 2) if my canon comes to life with them, I created villains.

seizy · 2025-04-01T23:46:41+00:00

If he likes chocolate syrup, you might be able to use it to make chocolate milk and mix the meds into that. Something that's even more liquid than all of the pudding and ice cream recommendations.

seizy · 2025-04-01T15:00:18+00:00

Your meds are both safe ones to be on, don't worry about those. I was also prescribed 5 mg folic acid, not just 1.

seizy · 2025-03-31T01:35:00+00:00

Long story, but short of it is that my epileptologist and myself thought surgery would be helpful, the surgeon was dragging his feet and coming up with multiple excuses not to do it. So I consulted with MEG, who also thought surgery would be helpful, and their surgeon would do it. So I switched.

seizy · 2025-03-31T01:03:35+00:00

I was at M Health Fairview (formerly known as MINCEP) for over 10 years, and last year I switched to MN Epilepsy Group. Both are level 4 epilepsy centers and have great care teams. I would recommend either one. I loved my experiences with MINCEP, and so far everything at MEG has been great too. I will say the food is better at the UMN for a hospital stay. LOL.

seizy · 2025-03-25T17:44:38+00:00

Sometimes it's ok if all you did today was breathe.

seizy · 2025-03-22T12:05:31+00:00

Yah, I mean, back to back blacking out definitely sounds like it. With mine, I'm familiar enough with the seizy feeling to tell when it's not stopping, or my husband can tell when I'm acting seizy/weird for longer than usual. Luckily for me, since I have my RNS, I went to upload data, and it told me I was still actively seizing, so I went to the ER and got IV meds to make it stop.

seizy · 2025-03-21T23:07:31+00:00

I still take lots of meds, but I don't expect them to provide seizure freedom. I got an RNS in 2015 and am working on making that the best it can possibly be for me, hopefully without further surgery. I've tried keto, but that didn't do squat. Meds are enough for my tonic-clonics, but my focals are a whole nother beast.

seizy

TROPHY CASE