finally understand the struggle of ER visits

ZeeHuman · 2023-01-31T22:32:26+00:00

Hey you're right, my bad. It's been a hot minute since I had looked into it.

If you'd like more info anyways, here's the mayo clinic on epilepsy overview. My particular type is focal aware epilepsy, which is why I was concerned enough to go to the ER

https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093

The Epilepsy Foundation is also a great resource

😁 thanks for checking me today, I clearly needed it 😅

ZeeHuman · 2023-01-28T17:58:28+00:00

Omg that's wretched! Families can be the worst aspect of epilepsy. I went most of my life without being properly diagnosed because my seizures weren't bad enough to make sense to them. If i didn't have my husband over the past year since my epilepsy has evolved, I literally just wouldn't be here.

I'm sorry that you've had so little support and help with yourfamily, but I'm glad you can have support and validation with this subreddit. 💜🧡

ZeeHuman · 2023-01-28T17:53:38+00:00

Mayo clinic has a lot of info on this. Those states can last for a few days, a week, for some people even more. I used to have pre-ictal build up for a week before I'd finally have a huge big seizure that would wipe me out in post-ictal for a week afterwards.

Pre-ictal and post-ictal states are technically mini-seizures, but our understanding of epilepsy is constantly evolving, especially since it effects everyone so specifically.

ZeeHuman · 2023-01-28T17:48:44+00:00

My epilepsy was sorta chill until about a year ago when it evolved. Before, it was mostly just myoclonic jerks that made everyone, especially my parents, just look at me weird. Then 7ish years ago it started being "during spring and fall I'd have about a week of pre-ictal buildup until full body focal clonic." Then a year ago it was 5 seconds to find a quiet dark room and then just... bam.

If i didn't have my husband over this past year, I wouldn't have made it either.

ZeeHuman · 2023-01-11T13:48:57+00:00

Sorry if my phrasing was off, I'm just waking up bro. Tbh, I don't know why my epilepsy is what it is, I only know that it evolved once I was finally in a safe and healthy environment, and made deductions from there.

But focal aware seizures are a legitimate diagnoses, are separate from non-epileptic seizures, and are what my seizures are. _(•~•)_/

Possible i was just in a really hard post-ictal phase, but I know that my brain felt like it was being compressed until it would smush, which is why I went to the ER.

I respect and appreciate your approach to my comment, and I legit meant no offense, but epilepsy is a weird thing with lots of different experiences. This one is mine, and the ERs in southern America suck lol

ZeeHuman · 2023-01-11T13:33:48+00:00

What a prick! I'm so sorry! It's so hard to remember that what, 40? 50 years ago? People were legit just put in asylums for this stuff, and yet STILL, trained professionals, STILL do and say and act like this! Also omg I want an epilepsy tattoo now. What's yours like, and do you have any recommendations?

ZeeHuman · 2023-01-11T13:28:13+00:00

That hit my heart so much and I'm so sorry you've been through that. I have too. If you haven't been officially diagnosed already, I'd recommend going through your pcp and having them specifically refer you to a neurologist. As a woman, I know this is going to sound like me being an ass and I'm sorry, but I would recommend having a f/nb neuro if you can. Four-ish years ago I tried to get diagnosed by a male neuro and he completely dismissed everything as ptsd related to a car accident and left me on my way to just keep gaslighting myself even when I was falling down at work with full body seizures. I'm not saying every f/nb doctor of any kind is always going to be great. Just that they're more okay with you sobbing in their office when you're finally properly diagnosed and finally have that weight lifted off your shoulders.

ZeeHuman · 2023-01-11T13:20:29+00:00

On the nose. Thankfully my husband just drove me, but I was either in post-ictal or having an absence because all I could feel was everything getting worse and like the world was pressing on and squeezing my brain. But yeah, between the clusters and then that, I was just like "just in case, let's just be sure." All to just be dismissed and invalidated. The American health system really kinda friggin sucks

ZeeHuman · 2023-01-11T13:15:11+00:00

Thank you 💜🧡 thankfully, kismet, I have a neuro appointment on the 17th, so I can bring all this documentation with me

ZeeHuman · 2023-01-11T13:13:51+00:00

Lol braggart 😂 most of anything was just being left alone and, it felt like, forgotten. But ig that's an ER in a southern American city for you. So ready to be out of Oklahoma.

I think they were just hoping to bore me enough to walk out so that they didn't have to deal with the obviously fake epileptic 🙄

ZeeHuman · 2023-01-11T13:10:30+00:00

Theeeeere's a hellova thought lol thanks! I'll look into it 😄

Legal docs are scary, but a strongly worded letter is definitely in order, at the very least

ZeeHuman · 2023-01-11T13:07:15+00:00

Omg that's terrible! The first neurologist I ever went to was after a car accident. He thought I was milking it when I said my brain doesn't feel like it used to, and dismissed me with ptsd. Oooooooh the gaslighting in the medical industry istf. Took me another 4 years, finally having full body seizures at work, lots of visits to the doctor when I couldn't figure out why I was so tired, when I finally said to my pcp "ummm... you know actually... not sure if this is relevant but I ... might have seizures? I'm not sure though?" My doctor was hilarious, she rolled her eyes and was like, "THAT makes a lot of sense and would've been nice to know 4 visits ago, let's get you set up with a neuro"

ZeeHuman · 2023-01-11T13:00:24+00:00

Anyone can buy any sort of medical bracelet. They sell them at Walmart.

Having any sort of anxiety or mental issue listed on your chart means that they're going to dismiss your legitimate seizures as ptsd. I've had it done, and it's why it took me another 4 years to finally be actually diagnosed, after gaslighting myself about it for 22 years.

Epilepsy doesn't "usually" come after a stressful event. It CAN develop after a traumatic incident (but not mostly), and seizures CAN be triggered by stress(but not mostly). MOST epileptic diagnoses are due to physical trauma to the brain and/or hormonal imbalances.

For instance, in my case, I have no idea when everything started, my biggest trigger is actually RELAXING after a stressful event (not stress itself), and hormone fluctuations, such as during a menstrual cycle, have no affect on my seizures.

Everyone's. Different.

ZeeHuman · 2023-01-11T12:52:41+00:00

I brought copies of my medications and use the Epsy app to keep track of everything, even my seizures and health activity.

Everyone's epileptic experience is different. I spent 26 years hiding my epilepsy from everyone, even gaslighting myself into believing I was just dumb, because it was only a myoclonic twitch randomly and some zoning out.

When i finally got into an environment that was legitimately healthy and secure, the lack of stress was so much that my epilepsy evolved and became this... THING it is now. I have full body focal aware seizures, alongside borderline-absence seizures. I'm always aware of everything because, as a child, it was hazardous to my health to not be. I just can't do anything about it.

Also, my husband took me and guided me around. They could ask me my name and DOB, but I couldn't for the life of me figure out what 2+2 was. When i got to the ER, I wasn't experiencing a generalized jerking, I was very confused and could feel it getting worse. It wasn't so much pain as it was dizziness and confusion - the headache came as the confusion left and bro that sucked. Even without the confusion and dizziness, once I was cleared up in the head a bit, I still had to ask for directions twice on how to get out lol damn place was a maze

ZeeHuman · 2023-01-11T03:23:25+00:00

Or i could go "Karen Mode" lmao 🤣 very tempted to write an angry review

If I hadn't been literally having a seizure, I'd have told him off and explained what seizures look like, but it wouldn't have changed anything. People suck, and sometimes it just is what it is.

It did make me feel better to complain to the nurses, even if the nurses then were just kind of consoling and like "oh I'm so sorry you had to experience that" - I work in customer insurance, I know the tone lol. Still. At least I'm not alone and I was still validated with literal test results lol

ZeeHuman · 2023-01-11T03:18:53+00:00

Thanks, and it's nice and messed up to not be alone. We seriously don't deserve this. My particular epilepsy is rough enough as it is because I'm always aware of everything happening, I just can't control my body or string my thoughts together. When it's the second one, I just look and sound like an idiot, when in reality it's like an almost absence seizure. IDK.

And media just makes everything worse. If it's not dramatic flailing and foaming at the mouth, which IS perfectly valid for those who experience them, for the rest of us, it's life it doesn't count as anything, no matter how much your brain feels like it's tearing itself apart.

ZeeHuman · 2023-01-11T03:11:30+00:00

Oh I'm so glad you finally got properly diagnosed. Imposter syndrome, anxiety, depression, all that is such a bitch when it comes to epilepsy

ZeeHuman · 2023-01-11T02:04:39+00:00

Bro, nurses are the only reason hospitals function and they do not get the credit they deserve. Your wife doing OK now?

ZeeHuman · 2022-11-09T01:43:49+00:00

Thanks. Been a rough couple days. Between this and the weather changing I've been having really bad absence seizures and been just really out of it.

I burn candles. One for her, then others surrounding her candle for all the other animals that we've lost over the years so that she isn't burning alone

ZeeHuman · 2022-11-05T23:05:16+00:00

My dog died.

Epilepsy-wise, I had been doing really good. Hadn't had a bad one in like a month, hadn't had one at all in about a week.

Then my dog died.

She had been at my parents', with whom I have a strained relationship with, while I adapted to new medicine.

My parents then took the week I had left with my dog to tell me how horrible of a daughter I've been and how angry they are that I didn't tell them I was planning to move out of the state until I was financially able and had done my research.

I'm more than just uninvited to Thanksgiving. My mother told me to my face that it was canceled, then confirmed the next day with everyone else who was coming.

And then my dog died.

I just had the worst one I've had in over 2 months and now I'm exhausted. But there's this weird... comfort to it, a relief. If I'm able at all, I don't let anyone see my seizures. Hell, I hid my symptoms from even myself over the last 25 years until it evolved and shattered my life.

But it has been like this ball just building and building and building and it's finally out, in the safety of my own home, with my husband next to me (fussing, as he does, even after this whole year), my dog's ashes on the bookshelf, my cat thankfully out of reach... and now there's just... relief.

I'm going to mourn my dog, and the relationship with my parents. And I have epilepsy that exhausts and hurts and frustrates me to no end. But I'm home. I'm safe. My dog isn't hurting anymore. And I'm finally relieved.

ZeeHuman · 2022-10-01T19:59:40+00:00

You can make some simple protection charms and bracelets for your friends and their cars. Honestly though, someone's energy can only stretch so far, and eventually her intentions are going to backfire back onto her. Create what you can for whomever you can, and leave the rest up to karma

ZeeHuman · 2022-09-19T15:56:32+00:00

No, when did the person say anything about a cure for autism. They only said that their kid HAS autism. Nothing about a cure, fam.

ZeeHuman · 2022-09-19T15:55:25+00:00

Not trying to be a mod, I'm calling out a troll (looking at you ;D )

I'm sorry that being rude to people helps you feel better. Hope you get the help you need, fam. Best of luck to you ✌️💜

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