PSA FOR EVERYONE

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.

Service Dog Appreciation Post 4/?
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Not the most flattering picture of me but that’s not the point of this point so it’s fine.

I felt a seizure coming on and Daphne sat up and alerted me to let me know that I needed to sit or lay down in a better place. I walked to the front of the room with Daphne on my right and my cane on my left, and tapped my professor on the shoulder to let her know I was about to have a seizure and needed to step out.

I started to get really shaky and stumbled a bit so she opened and held the door for me. I managed to get down the hall to a couch with Daphne’s help and woke up about 20 minutes later with Daphne draped across my lap, only remembering the beginning of the seizure.

It’s not very often that I pass out or for that long but I’m so thankful that Daphne is my Service Dog and knows to watch over me when I’m vulnerable. I’m also incredibly lucky and thankful that she’s able to predict my major seizures before they occur because even a small heads up gives me time to get myself away from hard or sharp objects and off my feet.

Do you really need a service dog?

This is a post predominantly for the people with invisible illnesses, but I suppose can extend to anyone with unsupportive people in their lives. You encounter a great deal of opposition to your service dog when people can’t see disability from both strangers and people close to you.

Making the decision to get a service dog takes so much time and consideration. We all know the questions we ask ourselves:

  • Can I handle the attention is public?
  • Is it worth packing him up and taking him everywhere?
  • Am I willing to make the sacrifices it takes to have a service dog and adopt a new normal?
  • Will it be a net positive for me
  • What will my friends and family say?

…….

That last question is a kicker.

When I chose to apply for Earl, my genteel Southern family exploded. The best way I can recount their reactions to hearing the news is through another of my beloved bulleted lists:

  • “Okay…. Well…… What do you want me to say?”
  • “So you’re just giving up on getting better?”
  • “Don’t you want to be normal?”
  • “You’re being selfish. There are people in worse shape than you who need service dogs.”
  • “You’re just exaggerating your seizures so you can take a dog everywhere.”
  • “Just keep trying to get better and get a normal dog.”
  • “Are you still talking about getting a service dog? I thought we talked you out of that months ago.”

The list goes on. They even called the agency after I put in the application with two references and a doctor’s note confirming my disability to tell them I didn’t need a service dog. Just a side note- I’m 24. They’ve grown to love Earl, but still pet him when he’s vested and make comments like, “Oh, you brought your dog again.”

Even my supportive friends didn’t act the same for a while. Until they adjusted, it was a little lonely. Conversation was strained and brief. I became reclusive. Then I got creative. I started using social media and texting for interaction for a while with the people I was closest to. Then would meet them for a meal or coffee because Earl sleeps quietly under the table at restaurants. People forget he’s there. It felt like old times and it helped them realized I am the same person I was before Earl came along. 

*That was long. Sorry about that. Here’s the advice part (another bulleted list): 

  • Your service dog is for YOU. Be okay with and unapologetic about that.
  • Try to help the people you love understand and be prepared for them not to.
  • When trying to reconnect with people who may feel uneasy about your new “buddy,” Try to hang out with them and at all costs try to avoid talking about your illness for a while. They care, but it’s a good reminder that you’re the same person you were before. They probably miss you as much as you miss them.
  • Try to be comfortable in your own skin. Remind yourself that you’re not defined by your illness. You just need a little extra help. You’ll exude that confidence and people will be more at ease around you and your service dog.
People with dogs

If you have a dog and you feed him/her Purina’s Beneful please stop feeding him/her this product right now.

My dog has been eating this food for 2 years. She has had a seizure almost every month since she has started eating this food and we had no idea why. 

We had just finally heard by my sister that this product has been found to be a cause in seizures in dog. 

If your dog does have a seizure:

  • be calm and hold your dog
  • cover your dog up
  • talk to them
  • do not let them go anywhere

I know this from expierence. I am not a doctor nor a vet, but please do not feed your dog Purina Beneful.

My dog’s seizures has been getting worse and we simply cannot afford vet bills. So please catch it before it get’s worse and DO NOT FEED YOUR DOG THIS PRODUCT

tldr; Purina’s Beneful causes seizures in dogs

PLEASE SIGNAL BOOST THIS I WANT TO KEEP ALL DOGS SAFE

PSA ABOUT SEIZURES. AKA HOW TO HELP A SEIZURE PATIENT WITHOUT BEING AN ASSHOLE.

I just had a seizure in french class, so this is the part where I go over seizure first aid just in case somebody you know goes through what I do. 

1. As soon as they start seizing get somebody to start a timer. If you don’t know the person call an ambulance. If you do know them, and know they have a seizure disorder call an ambulance anyways; unless they’ve previously told you otherwise. Don’t call the police. Police don’t know how to handle seizure patients. If you call the police that makes you an asshole. When the medics arrive tell them how long the patient has been seizing for, or how long they where seizing for if the seizure has stopped. 

3. if they are seizing violently do not hold them down, seriously you can give them serious bruises or even break their bones

2. If they’re not seizing violently, turn them on their side, and try to get them in the position closest to shock position that you can. They’ll thank you for this if they throw up and don’t choke on their own vomit. 

6. If possible put a pillow or soft object underneath the persons head. This will stop them from braining themselves on the floor, which is usually something we appreciate greatly. generally cracking our heads open is even less fun than seizing. 

Do not, and i mean it do not put anything in their mouth. They’re not going to swallow their tongue, that’s not an actual thing. They may bite it, but that’s preferable to choking on whatever shit you put in their mouth. Just don’t do it. 

4. If they wet themselves don’t tease them about it. don’t even mention it unless it’s to offer them a change of clothes. this isn’t a medical thing, this is just a “don’t be an asshole” thing. 

Don’t hold them down

5. don’t be an asshole in general. sometimes seizures and bodily fluids come hand in hand. we know this. trust me. 

Waking up from a seizure can be super scary, especially if the person has never had one before. Don’t let them sit up right away, and speak to them in as soothing of a voice as you can, and i mean like nature-documentary type soothing, that shit has got to be as calm as it possibly can be. 

Don’t fucking hold them down you can break their fucking bones i’m not kidding

I may add more to this later, but my brain is fried because, you know, i just had a seizure. 

At one point Sam’s temperature climbs above 108 and he goes down hard in the bunker’s hallway, wandering half-delirious with Dean fluttering anxiously at his side. Dean sees Sam start to crumple in his periphery, catches his brother by the underarms and lets his dead weight carry them gracelessly to the ground.

Then Sam starts seizing.

Dean gets a thigh wedged under his head to keep it from banging against the cement while he lies twitching and jerking on the floor, holds him steady like that with fingers wound tight in the fabric of his shirt. There’s saliva foaming up between his lips, dribbling down the sides of his face and his breath is making an awful choking, rattling wheeze in his throat. Dean tilts his brother’s head to clear his airway, hangs on with adrenaline and sick dread churning away in his stomach.

Eventually the spasms stop and Sam goes still. Dean keeps him there on the cement, head pillowed in his lap, rubbing circles into his shoulder and speaking soothing, senseless things while Sam’s eyelids flutter—the way he used to when Sam would have nightmares, or when the hallucinations got so bad there were long bleeding scores on his arms and throat where he tried to claw out the maggots he saw writhing there.

Like those times, it takes a while for Sam to come back to himself. His eyes are half-open but unfocused, failing to take in much of his surroundings. His lips are parted and shining, moving a little as he sucks in air rhythmically. Dean mops the saliva from Sam’s chin with the cuff of his shirtsleeve, smooths the sweaty hair back from his forehead.

Sam is still searing hot to the touch. Burning up from inside. Transforming.

Dean hangs on tight tight tight—prays with all his strength Sam won’t crumble to ash beneath his hands.

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.

A Really Long, but Heartfelt Letter on Epilepsy

Just wanted to address self esteem and epilepsy. (This can apply to other chronic illnesses as well)

Anyway, there are going to be days where you feel like absolutely shit. I’m not going to sugar coat it. I mean you probably already know this.
There will be seizure days; post seizure days; medicine side effect days; and honestly, days you don’t really even know why you feel like crap, nor can you really describe it, but you just do, and it really fucking sucks.

You will be tired. You will ache. Your head will undoubtedly be contorting itself. And to top it all off, this will very likely effect you emotionally.

I mean, how could it not? No one WANTS to feel like this. It’s disorienting, disabling, and “uncomfortable” and a vast understatement. So yeah, it’s a little upsetting to say the least.

Cause you’re not lazy. If anything you’re the complete opposite. You work so ducking hard everyday to live the shit of your life (cause let’s be real here, if you didn’t love living life, you would not try so fucking hard everyday to keep up). You have you dreams, your goals, your aspirations. Hell, you probably have a lot more will power than your peers, but no one would ever know it, since you’ve got SO many obstacles to tackle just to get out the door. It’s completely unfair.

And what’s worse, is if you live with someone, you feel like a dead weight. Unless they really understand what’s going on with you (and really, how could they? Unless they’re a spoonie themselves?) there are so many times where you feel like you have to justify your exhaustion. Or explain -for the 50th time- how the side effects of your pills cripple you at times-but the idea of starting the grail quest of finding the next set of medicines is what has kept you from finding anything better.

Epilepsy sucks. As we all know. Not only for its initial medical reasons, but for the sense of guilt, fear, anxiety, and depression that it can bring with it.

Well let me tell you something else. You, my friend, are amazing. I know you’re best kept secret - that you’re in fact the opposite of “lazy” and kick ass on a daily basis. (Which makes you basically like batman, cause he was a superhero that never took much credit? So congrats. You’re batman, you bad ass, you.)

I know that you have a lot of things to take into consideration on those evenings you go out. It’s tough, it can be scary, but you nail it everytime.

I know that you’ve looked fear and anxiety in the face and said “no thank you. Hmm maybe later? I gotta finish this thing right now. Yes, yes, I know I’m having auras, but we can freak out later, thank you,” because you know that if auras scared you every time you had them, you could not finish school, or go to work, or have that date that you were looking forward to. And of course they’re scary, but the fact that you don’t let them get to you every time makes you the personification of bravery.

And there’s one last thing that I know for sure. It is super easy to get embarrassed over having seizures and whatnot. It’s really easy to feel weak. (Hell, I let it get to me way more than I could admit), but there’s no reason to. It’s medical. It has nothing to do with your character. Your seizures, your pills, those forgotten words or that bit tongue - none of them make you YOU: they are all things that exist along WITH you, but they are not a part of you. And if anyone gives you shit for it, they’re being an ableist prick. You’re not an epileptic. Your a person. A person with dreams, potential, strengths, and weaknesses-one of which so happens to be a lowered seizure threshold. That is all.

I hope you all have a wonderful evening, and an amazing November. Let’s make sure to spread the (self) love and knowledge this epilepsy awareness month. 💜

Sincerely,
Captain Fantastic Spastic

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): http://scriptmedic.tumblr.com/post/155822695067/nothing-like-a-lightswitch-ms-husbands-3-month

and here (part 2): http://scriptmedic.tumblr.com/post/156139302257/nothing-like-a-lightswitch-ms-husbands-3-month

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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Woah! Hold up! Way back when, we were having this discussion about how cool it would be if there were super hero with some sort of seizure disorder, or even better- a magical girl character with seizures, well ladies and gentlemen, there is such a character. I cannot believe I forgot about her. The one, the only, Sailor Saturn! A complete BAMF, too. She basically is powerful enough to take out the entire solar system, but she doesn’t, obvs, because she’s just a misunderstood heroine. A Lone Ranger. A dangerous young woman with a heart of gold - all the while faced with her battles - her seizures (or “episodes” as they are referred to in the show), but they are seizures none the less! I obviously need to rewatch this. Lol sorry, I just got super excited lol.