My Traumatic Hospital Experience

It’s taken me a while to write about this. 

However, I feel it’s necessary as a person with a disability to share this story in hopes of spreading awareness about the challenges anybody can face when headed to the emergency room.

I suffer from seizures. These started as absence seizures, but over time I began to have convulsive seizures that occurred while I was conscious. The problem here is that doctors expect to see a “certain kind” of seizure, and when your seizures don’t meet these expectations…

Well. They don’t necessarily believe you when you tell them you’re having seizures. So they look to other explanations first.

They tell you you’re having anxiety if your hands are shaking and convulsing. Even if you tell them you’re not anxious at all.

They run drug tests on you without your consent, or without telling you that they’re running drug tests. 

They jump to every possible conclusion OTHER than “this may be a seizure” - even if I have a strong, verifiable history of seizures which I have told them about and which has been confirmed via EEG.

Here’s the thing. There are many, many types of seizures other than the typical “grand mal’ seizure that most people think about. Sometimes you fall down. Sometimes you’re conscious. Sometimes you’re not. Sometimes you do strange things. Sometimes you’re very confused. Sometimes you lose time. Sometimes you experience strange smells.

In MY case, I was having a series of episodes that began with convulsions while I was conscious, and that over time moved to me being frozen in place, also while conscious. 

While “frozen in place” I couldn’t move. I couldn’t speak. I couldn’t do anything.

When the paramedics found me after I called because I knew an episode was coming on, I had fallen to the ground in front of my house because I couldn’t stand any longer. I remember listening to the 911 operator calling for me and me being unable to respond. I remember waiting, and waiting, until I finally heard the ambulance coming for me.

I came out of the episode long enough to tell them I was having seizures. Then I went right back into seizure. 

The paramedics got me onto the stretcher and into the ambulance. Then they began asking me questions. Of course I couldn’t respond. They asked me again and again. I couldn’t respond.

Then the paramedic threatened physical force - pushing on my chest - if I didn’t respond. 

Fortunately I came out of seizure long enough to finally speak back. Then I got to the hospital

Then I got to my room, where I encountered my nurse. Again, my nurse began asking me questions. I began seizing. 

I couldn’t respond.

She questioned me further.

I couldn’t respond. 

“Megan, you have to cooperate,” she told me angrily. 

I couldn’t respond. 

“You have to cooperate!” she told me. This continued as I lay there in my bed, frozen in place, unable to respond, unable to move, unable to do anything as my nurse shouted at me that I needed to cooperate. 

She continued to berate me and tell me to cooperate even after I told her that I was trying - that it was the seizures preventing me from “cooperating.”

Even though I had told the paramedics that I was coming into the hospital for seizures. Even though the nurse should have known that I was coming into the hospital for seizures.

There is an endemic problem in the way that people with invisible disabilities are treated in emergency rooms and doctors offices and in the medical community in general. 

I was traumatized by this experience to the point that I am scared to ever call emergency services or ever go to the hospital for my seizures ever again. I needed to share this to let you people know that this is not okay. 

If any of you ever plan to go into nursing, to become doctors, or simply want anything to do with medicine, do not ignore anybody when they communicate with you - when they say what is happening with their bodies. 

anonymous asked:

I need to know the basics of electric shocks! I have a character who can control electricity, and in a PIVOTAL SCENE I want him to electrocute someone enough that it knocks them unconscious, but then, I don't know how long realistically they will remain unconscious and if that causes, you know, permanent brain damage or anything. (Which would be bad.)

Hey there nonny! 

There’s a neat shortcut to this that I think you might be able to get away with. But first, a little bit of background. 

Electricity, as I’m sure you know, wants to travel the path of least resistance. So the contact points – the “entrance” and “exit” wounds – are going to make a big difference in how the electricity affects someone. 

Electricity that crosses the chest can kill, because the heart is essentially a mechanical pump run by an electrical signal, and electricity that interferes with that signal can cause fatal miscommunication within the heart, known as ventricular fibrillation. (Defibrillation was actually called countershock at first, because a lot of electrical line workers were getting shocked, which was putting them in cardiac arrest, and the countershock would hopefully get them back!) 

We don’t want to kill the character. That would be bad. 

We do want them to be unconscious. That would be good! 

So how can we get electricity to take a quick path that doesn’t stop the heart but does affect the level of consciousness? 

The head. Enter on one side, exit on the other. What you’ll get is a seizure. 

It’s done fairly routinely as electroconvulsive therapy – electricity inducing seizures. I’ll admit to not being an expert, meaning I can’t give you voltage/amperage lists of what does and doesn’t work (and I don’t know how much control your character has.) But realize that idiot doctors have accidentally defibrillated their own heads, with a quick seizure and no ill effects later on. So there’s that. 

Now, a seizure is different from unconsciousness! But the brain has uncontrolled electrical activity – it basically shuts down and reboots (with some dramatic shaking and voiding of bladders and biting of tongues to boot). 

But what happens after is that the brain reboots. It’s called a postictal state. The character will be dazed, confused, and disoriented. They’ll likely be really drowsy for at least a few minutes, and as they wake up they won’t quite know what happened. 

This is the closest I can come, dear nonny, to what you need. It’s not exact, but it’s close, and has a period of unconsciousness. 

I hope this helps your story! 

xoxo, Aunt Scripty

(Samantha Keel)


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C’mon, people, be epilepsy safe.

Posting strobe or flashy gifs in the epilepsy tag on purpose isn’t a prank. 

It is assault

Seizures have many forms and effects depending on how / where they begin in the brain. Some seizures can put a person in serious danger if someone isn’t right there to protect them and monitor them while they have the seizure and recover from it.

What if seizures make the person fall off their bed and hurt their head or neck? What if the seizure causes them to slam a body part repeatedly into a bookcase or other hard object? What if they knock over something glass and get cut? What if they end up face down in a pillow or a pile of clothes and suffocate? What if they go into status epilepticus?

Is it still funny now?

Some people tag flashy gifs with “epilepsy” thinking they’re being helpful, but they aren’t. Don’t tag your flashy gifs with “epilepsy”, okay? Tag them with “epilepsy warning” or “seizure warning” if you need to.

People who have epilepsy or people who take care of someone who does use the epilepsy tag to post in and share links. The caregivers will be okay, but someone with epilepsy could have a seizure because of a gif in a tag that’s supposed to be safe for them.

I don’t have epilepsy myself, but some of my followers and people who surf the tags I post in might. 

My epilepsy-safe tags (sans quotes) are:

  • “gif” or “gifs”
  • “flashing”
  • “seizure warning”

Sometimes I add “seizure warning” without “flashing” if I’m not sure whether a moving gif is epilepsy-safe or not. Tagging “gif” or “gifs” serves a dual purpose to help out fellow autistic followers who get sensory overload and possibly have violent meltdowns if they’re surprised by moving gifs. (I get violent meltdowns myself. Gifs don’t trigger them, but I know how much it sucks to have one.)

If I post or share a video with any kind of flashing lights, I put a warning above that says it may trigger seizures or migraines so somebody can use their own discretion. If a gif has minor-yet-noticeable flicker or even a small flashing / blinking light, I tag for it.

It’s probably overkill, but I prefer to be very cautious rather than not cautious enough.

Now can people please stop tagging flashy gifs with “epilepsy”?

I know that it may not be important but i thought i would share. While I’m in the hospital my mom is usually gone because shes stressed and doesn’t want me to see so basically I’m alone. I cant get out of bed without a nurse to help me because I’m a fall risk…but i don’t feel alone here. I have so many good people keeping me company over the *scandalous* internet, ( @// im-angel-of-the-lord @ //elizadora @// thedarklord-rory @// lili-isyourqueen @// theskeletonmeme-lord and others on different apps )

While im waiting to have seizures and or just… figure out what is wrong im talking to them and watching my favorite youtubers. markiplier and jack mostly . It makes me feel like im home.. and i just wanted everyone to know how much they mean to me, near or far ill always be thankful of your existance.

What to do if I have a “petit mal” seizure

So, while tonic-clonic/grand mal/convulsive seizures get a lot of press, there are a LOT of other kinds of seizures.  For all others, the most important response is “Don’t panic.”

This is a personalized “how to” for my seizures. Not everybody is the same, and you are better off asking the epileptic folks in your life how they want you to respond.  Use your words!  They’ll probably thank you for it!

When I seize, your job is to: 

-Wave people off, maybe tell them I have a headache or dizzy spells, because saying “seizure” draws a crowd.

-If we’re in a dangerous situation (crossing a street, cooking, swimming), mitigate the danger as much as you can.  Stop/redirect traffic, turn off the stove, keep me above water, etc.

-If the seizure lasts only a second or two, keep going where we left off.  Roast our marshmallows, enjoy the museum, finish crossing the street… but don’t tell me anything important unless you WANT me to forget it.

-If it’s longer than three seconds, judge the danger.  If we are in a dangerous place, guide me out of it.  If I’m unbalanced offer a seat.  If there is no danger, your job is to let me recover, then pick up where we left off.

Relax and trust my judgement. These seizures happen all the time. The only time you need to worry is if you see me have a bunch over the course of an hour.

-If I have a bunch, (like, 4+) I should take my meds.  I’ll be muddled and will probably not think of this.  I will also forget what I am doing EVEN AS I AM GETTING MY MEDS.  Remind me.  

“You’re getting your emergency meds, right?”  “Are your meds in your bag?”

After my meds I need to lie down and sleep it off, perhaps with a bit of water or juice.  A bed, sofa, or your shoulder will do, but I drool so choose wisely.

Thank you for caring enough about me to see my seizures, keep calm, and care for me.  It really means a lot, and I’ll appreciate you all the more when I’ve come back.

anonymous asked:

Hi there! I'm writing a story fanfic about a main character with epilepsy. Her meds don't control it very well, and she has absence and tonic-conic seizures. One night she goes into status epilepticus and 911 is called. Could you give me some insight as to what the paramedics would do when they arrive on scene? And if they couldn't get her to stop seizing at the ER what could the ICU stay be like? And how long roughly would it be? I'm love to get a better idea of this in addition to my research.

Hey there nonny! Yes! Status epilepticus is a really scary thing to watch, and I’ve come across it several times.

First, upon arrival, paramedics are going to try to determine:

  • How long she’s been seizing
  • Does she usually seize once or multiple times, when she seizes?
  • Has she ever been in the ICU for her seizures?

All this is going to be while they’re making sure she’s lying on her side, that she has a pillow under her head, and while one of them is drawing up a medication (either Ativan / lorazepam, 2mg, or Versed / midazolam, 10mg) to give intramuscularly into a thigh.

They’ll also apply an oxygen mask and may check a blood sugar level, especially if she’s diabetic.

If the first line of medication doesn’t work, it’s time to scoop and run, because many EMS systems don’t have good backup plans for “what if first-line benzodiazepines fail?”.

If they have it on hand, an excellent second-line medication is ketamine, given at high doses (4mg/kg IM, so a 70kg person might get 300mg intramuscularly). That should stop the seizing.

Once we get beyond that point it’s down to general anesthesia and intubation, which, hopefully the ketamine is enough to get that done.

Somewhere along the line, probably en route to the hospital, they’ll try to get an IV, but I have to say, getting an IV on a seizing patient in a moving vehicle isn’t easy. I’ve done it, but I’ve never LIKED doing it. (The medic will likely stabilize the arm against the medic’s leg to keep it “still” while performing the IV).

Other systems might try more benzos – additional Ativan or Versed or Valium / diazepam – but this probably won’t work, because the longer someone seizes, the more GABA receptors shut down – the same receptors hit by benzodiazepines. (This is why I suggested ketamine above!)

This is a patient the ER will get a heads-up about. If EMS hasn’t intubated her, the ER is going to. They’ll put her on a drip of either midazolam or (preferably) propofol and fentanyl until her brainwaves have been completely flatlined, as evidenced by EEG monitoring. She’ll also be loaded with an antiepileptic like Keppra or Dilantin IV.

This character is getting an emergent CT of the head, to make sure that the issue isn’t because of a bleed or a tumor or some other intracranial catastrophe.

If it truly is her epilepsy, she’ll be admitted to the neuro ICU, which may be at another hospital, so they may need someone like me to come and do the transfer.

At the Neuro ICU…. well, honestly, she’ll likely get another CT, and probably an MRI if they suspect a physical cause.

As for the experience of being in a Neuro ICU, you’re in luck. I have not one, but TWO excellent masterposts – interviews, really – about this very topic. M was kind and brave enough to come on the blog and talk with me about her husband’s 3-month coma that was due to intractable seizures.

Her posts are here (part 1):

and here (part 2):

Part 2 even contains her direct advice for writers, which I appreciate immensely.

I hope this helped your story!

xoxo, Aunt Scripty


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anonymous asked:

Hey!! I love your blog and I wanted to know what to do when if my friend gets seizures around me?? She's epileptic and it's never happened around me but I don't know what to do if it does?? I don't know if it would be awkward to ask her???

3 .It depends on the kind of seizures she has. I promise, it’s always better to talk to your friend and ask about her seizures than be nervous around her and wonder what to do.

Here are some basic advices on what to do if someone around you has seizure : 

1. Try to stay calm and reassure everyone around not to panic.

2. DON’T try to hold her down or hold any of her body parts ( hands, legs) down. 

3. Time her seizure with a watch/phone. If it takes longer than minute, minute and half for the seizure to pass - call an ambulance. 

4. Clear the area around her from any sharp/hard objects she might hit herself on.

5.  Try and keep her head safe ( you can fold your shirt and put it under her head) 

6. Turn her on HER SIDE , that way she won’t choke if she needs to throw up or can’t swallow ( I almost always lose my ability to swallow post seizure, so turning me on my side has always helped me not choke on my spit ) 

7. Try to stay calm and reassuring as she comes to it. It’s always disorienting and scary when you wake up on the ground after a seizure , so having someone around is always a good thing.  Give her space and time to recover and come back to her senses. Offer her water and ask if she needs someone to call. 

8. Calling an ambulance when someone has an epileptic seizure is pretty useless and often more stressful for the person so I would avoid doing that. BUT if you see that something is seriously wrong with her  (she can’t breathe, turns blue, doesn’t come to it ) you should definitely call one.

I’m sorry if this was long, but there really isn’t a short way to explain this. I hope this helps. I’ve had plenty of seizures in public places and honestly most of the people have no idea how to react. 

I hope your friend stays seizure free. Epilepsy lacks awareness and support which is pretty sad :\


If you have epilepsy, seizures, or anything that can be caused by excessive light use, DO NOT WATCH STRANGER THINGS ON NETFLIX. It has a lot of flashing lights, strobe lights, and can cause episodes. Idc if you reblog this or not, but if you know someone that this can possibly happen to, let them know. It already happened to a friend of mine while she was watching it. 

*small edit: it’s a great show, so if you can watch it you should! If you’re photosensitive, please just be careful. It won’t happen to everyone.

By request: How The Magicians almost killed me.

So, I have seizures. Not frequently but occasionally and they’re usually not too bad. I’ve only had one grand mal seizure. Usually I have atonic seizures.

My seizures are triggered by two things that we know of: Sunlight and excitement. (The grand mal seizure occurred due to over exposure to the sun)

Now, how does The Magicians play into this? Well, remember that promo for the “There are only three episodes left?” Well, I made the mistake of watching that at work without having taken any medication.

I didn’t remember the promo. I hit the floor. I don’t remember hitting the floor. My coworkers sure do though. I got too excited ny the promo and had an atonic seizure. I didn’t lose consciousness or anything, but I did slam my head pretty hard on the floor during the seizure and bit my tongue when I fell.

So, that’s how The Magicians tried to kill me. Got to leave work early though. Now I don’t watch promos without my dog (who senses anxiety and seizures)

Game Night

You asked for Jeremy with seizures, and you shall receive.
I’m so sorry this probably sucks, let’s just blame it on me being tired..?
Okay? Okay.
I dedicate this to @prompt-master and @toosicktoocare

Word Count: 1,065

Sorry I’ll fix read more tomorrow lmao

- -

Only a few days had passed after the whole squip incident had all cleared up, Jeremy was released from the hospital and the first thing he had to do was hang out with Michael. From his own house, because his father taking this life change and becoming an actual father, he was worried about Jeremy after the allergic reaction he has to Mountain Dew. The two boys had this entire night planned out, they would go to Jeremy’s house, Michael bringing over two twelve packs of doctor pepper for them to chug together. They would play video games, then talk their hearts out until one of the boys passed out. Then the boys who remained awake, generally Michael, would take their markers and draw dicks covering the others face. Typical teenager things.

The whole drive there Michael had been mentally preparing himself for seeing Jeremy. He knew that the little robot was basically deactivated but he still had his fears and insecurities to worry about, Jeremy ditching him had really destroyed him. Jeremy had been his only friend for the past twelve years, they had been through basically everything together. The squip incident was literally a dream turned into a nightmare for both of the boys. When he finally arrived Michael took one last deep breath, preparing himself before walking up and knocking on the door. He nearly had a heart attack with how quickly the door swung open,

“Michael!” Jeremy shouted when he saw his friend,

“Dude! The fuck, were you stalking me! You nearly killed me right there!” Michael chuckled gently after making his statement, and pushed Jeremy out of the way,

‘Sorry, but I was really excited, I feel like I haven’t seen you in months, dude!“

“Maybe because you quite literally ignored me for months, then I saved your ass,”

“Right,” Jeremy said quietly, all amusement lost as he made a face that showed that Michael may have taken it a step too far,

“Hey! I’m not really mad anymore, I promise, I mean, I understand computers are some spooky shit to deal with, Kay? Not your fault. Only thing you did wrong was listen to rich,”

“Well I mean, I did also kind of save rich’s life, remember he was squipped too, So without me getting squipped rich would’ve never gotten it deactivated,”

“Touché,Jeremy.” Michael responded then crossed his arms,“Ready to head downstairs? Let’s get our gaming on!” Michael spun on his heels before making his way down to the basement, Jeremy quickly following him a smile on his face.

The boys began their night as normal, playing a game on their Nintendo. Jeremy was in the lead for a solid half hour, before he dropped his controller and stared at the screen. Michael continued to play, believing that Jeremy was just messing with him,

“Michael?” Jeremy said, blinking his eyes slowly,

“Dude, what’re you doing? You’re about to lose this level! You were doing so well too!”

“Oh, um,” Jeremy shook his head a bit before continuing on with the game. Soon their session ended and they already had a twelve pack of Dr. Pepper downed,

“So what has school been like?” Jeremy asked Michael as he opened another can of Dr. Pepper.

“Ah, boring, without you there I’ve been trying to keep everyone out. It’s been different though, I guess everyone has been getting along but I’m really not included in this secret.. I guess because of the play? When everyone got squipped and you all screamed and passed out together,” Michael shrugged,“I screamed too, but I was so freaking confused on what the hell was going on, I mean it just exploded all at once.” Michael shrugged and Jeremy nodded,

“I get it, I guess we have some special connection now? Something to bond over, but trust me. You’re still my best bro!” Jeremy smiled, trying to reassure Michael,

“Well, whatever, what about you? I mean, are you really going to take your dad and i’s advice?”

“What do you mean?! I think rich has the best advice. With his ‘Thexually’,” both boys cracked up laughing together.

“You shouldn’t poke fun at his lisp,”

“Hes been bullying me since freshmen year! I feel like I should be able to treat him anyway I want,” Michael rolled his eyes,

“Whatever,are you going to get the new pokemon game when it comes out?” Michael looked at Jeremy, though he was silent, Michael stared at him but Jeremy’s eyes just seemed to go right through Michael, and his hands rubbed together.

“Jeremy? Dude, the hells going on?” Michael asked poking Jeremy’s forehead, coincidentally Jeremy came back at around the same moment,

“What..? Sorry Michael, I guess I’m really tired,” he laughed a bit,“I think I zoned out, what did you ask?”

“I asked you if you were going to get the new Pokémon game that was coming out?” Michael repeated himself a little louder, but his shoulders dropped when he noticed Jeremy ‘zoned out’ once again, his eyes were fluttering and he was chewing on his lip. This didn’t last long, but it caused Michael some panic,

“Dude, what’s going on?” Michael asked Jeremy,

“I don’t know! I think I’m just really tired, it’ll be okay, can you repeat yourself? One last time, Im sorry,” Jeremy asked, his voice soft and shaken,

“Are you going- Jeremy! Dude seriously! This isn’t funny anymore!” Michael shouted when Jeremy fell into the daze a third time,“Jeremy! Stop it!” Michael could feel tears forming at the corners of his eyes, he felt himself becoming over whelmed with panic,

“What?” Jeremy asked as Michael tried to pull him to his feet,

“We’re going to get your dad! Dude this is terrifying,”

“Why? Michael, dude why are you crying?!” Jeremy asked as he was tugged up the stairs,

“Because! You’re scaring me! Who knows what the! What the stupid floppy disk could’ve done to you! ”

Jeremy allowed Michael to pull him to his father.

“Mr. Heere, I think something’s wrong with Jeremy, he keeps like, zoning out and..his eyes are doing this weird thing, and I don’t know, I’ve never seen this before. It’s fucking- freaking terrifying!”

Mr Heere took a look at his son and his fatherly instincts kicked in as he made his way to the oats closet, pulled out a pair of pants, pulled them on.

anonymous asked:

Hi. I strongly suspect my little sister (18) has EDS, her joints slide out of place a lot and she has pretty much all of the other symptoms, plus possible seizures, but shes scared of finding out that she has a serious illness so she won't go to the doctor. I'm super willing to support her but I dont come off as a supportive person because of autism stuff and we aren't very close. Can someone help me script something that might help us have a good conversation about my concerns?

It’s hard watching people we care about suffer, especially when that person isn’t doing anything to alleviate their suffering. I would suggest saying something like the following:

“Hey! I know it doesn’t often show, but I’ve been really concerned about you lately. All of the dislocations and possible seizures are scary to watch you go through. I’m worried that, if you don’t address things soon, things will get worse for you in ways that could be prevented. I think it would be a really good idea for you to go to a doctor about these issues. I know that it’s scary for you, but I think it’s really important. However, even if you don’t seek help from a doctor, I want you to know that I’m always here for you.”

I hope this helps!


Hey Fam.  My aura game has been going full force, and my migraines have been no joke either.  Any recommendations?

Specifically anything that I could do while working with a computer… typing things… cause I know that’s like one of the worst things for me right now, but god damn, this paper aint gonna write itself, and I’m finally making progress.

(Sorry Neuroglitch, this neurobitch has got shit to do)