Mod: Sumi 🇾🇪🇲🇻

discrimination/ableism against seizures and seizure disorders: please use the ask box to submit your experience. All hate will be deleted and blocked

[this-is-seizurism]

The goal of this account is to spread seizure awareness, education, ableism/discrimination of them.

Please feel free to send in asks regarding your experience with seizures and they will be responded to.

This account does take inspiration from those such as @this-is-ableism @thisisparamisia @this-is-audism and all the others that are out there.

Seizures can occur for many different reasons and this account does not discriminate on the reasoning

I’ll be adding links to my educational posts here as they are created.

What is a seizure

Seizure triggers

Seizure Diagnosis

[this-is-seizurism]

somebody telling me i cant say that i have seizures because im not diagnosed with a seizure disorder. im medically recognized as having seizures and i have been in the ER multiple times for seizures. everyone is so obsessed with diagnosis that they dont care to hear about undiagnosed experiences.

This is in fact seizurism!

Unfortunately, it can take years to get a proper seizure diagnosis.

If you are having seizures and being treated for them you are allowed to say you have them.

and even then, diagnosis can change, be added on to, etc.

Someone with epilepsy can later develop non epileptic seizures.

Vice versa

Someone who is non epileptic can later on develop epileptic seizures.

Which is why it’s important to keep note and track of your seizure presentation and especially seek help for anything that is out of the ordinary.

I know someone who didn’t get properly diagnosed with a rare genetic epileptic condition until they were in the 20’s despite having it all of their life.

It happens.

A seizure is a seizure and if you’re experiencing them you have more than the right to say so.

[this-is-seizurism]

hiya! i hope its okay for me to ask and apologies if this has been asked before, feel free to ignore! i've been having seizures for a while now but have finally been believed and scheduled for testing! i wanted to know if you have information or could share information/experience with EEGs for a first-timer? im scheduled to have a sleep deprived one in a few weeks, but im very nervous about it since ive never had one, so any information is helpful and much appreciated! thank you so much!

Hi Anon 👋

You’ve probably already had the EEG so best of luck and well wishes.

I will still answer this though.

Starting off EEG’s themselves are not painful more like insanely annoying.

Folks with longer or thicker hair it’s especially worse for you. Your hair will get stuck together with glue/paste.

Some places will use EEG glue others will use EEG paste but either way they both will have you looking like a zombie.

Your hair is also likely to be wrapped up although at my last hospital stay they didn’t! They kind of just braided it :)

Some hospitals will also have a shower to let you wash it out after depending on if you’re having an outpatient or inpatient EEG.

Which brings me to the next part.

Outpatient EEG’s in my experience can take about an hour. They typically set you up and this is when they really try to trigger you. Strobe lights in your face, hyperventilation, and sometimes sleep deprivation.

Inpatient will be done in a hospital they may attempt to trigger you it just depends on your case! The average stay can be about 3-5 days. You’re also typically completely bed bound.

Smaller hospitals without epilepsy programs have typically made me completely bed bound including for the bathroom which is not a fun experience!

Larger educational institution hospitals with epilepsy programs typically will allow you to get up and move around but very limited. They would only let me walk around with a nurse holding on to me or being strapped into the ceiling track and typically it would only be to go to the bathroom in a commode next to the bed with fall pads.

and of course if a seizure occurs they are entirely trained in both situations inpatient and outpatient to treat you.

Resources:

Cleveland Clinic

Johns Hopkins

Mayo Clinic

[this-is-seizurism]

A question:

I have chronic continuous migraines and post covid, which can include muscle spasms

Until recently, I was on a small dose of Topamax for my migraines. I’ve started having a lot more muscle spasms, and I came across your post on myoclonic seizures and I Wonder.

(I feel a build up before whatever piece of me jerks, and then it’s usually gone? I was chalking it up to anxiety but maybe that’s not what it is?)

Hi anon 👋

I want to be very straightforward with you that one of topamax’s side effects is muscle spasms.

Topamax is also an antiepileptic and has been used in the treatment of myoclonic seizures.

Further adding, myoclonic seizures are typically more common in those with genetic epilepsy’s or specific epileptic syndromes such as juvenile myoclonic syndrome and Lennox-Gastaut.

They are not very common in most people without these childhood epilepsy syndromes although they can occur in anyone with epilepsy.

They are also pretty effectively treated with medication.

However, please do take it seriously if they are sudden and shock-like, last only a second or two and make you fall or drop things. These are warning signs of a myoclonic seizure. Or if they are occurring in clusters/series.

Resources

Epilepsy Foundation

Cleveland Clinic

Johns Hopkins

[this-is-seizurism]

not a seizurism experience, but any advice on researching to determine if i should ask my doctor if what i'm experiencing is a seizure or related to seizures? i have some spacing out experiences that i've never been entirely sure are an adhd/autism thing, absence seizures, or some combination of both, and i also get nauseous at flashing lights to a degree i'm not sure whether it's normal or dangerous. i do want to research symptoms and write down my experiences but i want to know what bases i should cover to properly convey my experiences and concerns.

Hi anon 👋

First if you haven’t already, I highly recommend taking a look at and reading through my pinned post here as it contains so much information regarding seizure disorders and I hope to continue expanding it.

As for seizures regardless of your research I would say bring it up anyway! Maybe it’s an ADHD/Autism thing. Maybe it’s a medication side effect. Maybe it’s a seizure.

What I do recommend regarding symptoms and providing information to the doctor is the following:

Timing: if you can have someone time how long the episodes last

Triggers: If you notice any specific triggers surrounding them. Photosensitivity is actually rare in epilepsy a lot of patients aren’t triggered by it only about 3% of epileptics experience it so it may or may not be a trigger and I wouldn’t focus on that being the only trigger. Look at things like menstrual cycles, time of day, stress, etc.

Videos: If you’re able to video them at all that can be incredibly helpful and useful information

Before and after experiences: Did any warning signs occur? Think of feelings, smells, tastes, visual changes. And after were you confused? Tired? Have a headache? Experience any injuries? How long did it take to consciousness? The more info you can provide here the better.

What exactly happened during it: Were you just staring? Did your body move? Did you convulse at all? Did any part of your face move or twitch? Which side(s)? Were you conscious at all?

[this-is-seizurism]

PSA/FYI

First I’ve taken a hiatus due to traveling/vacation along with symptom flare ups.

I’ve also really been thinking long and hard.

I do not want to put any DNI’s on this account as my goal at the end of the day is to provide seizure education to everyone and I’m a firm believer that they are consistently ignored.

With that being said this account is not a place to bring in hate, drama, ableism, homophobia, and the like.

Talking about your experience with it is one thing but dragging me or my account is another. I will not be engaging in it.

I will give the information that I have, medical facts, resources, etc as I do with all posts but any further drama or discourse will not be tolerated or engaged with.

This is not the place for it, leave it out of here.

Thank you,

should be returning to asks soon!

[this-is-seizurism]

Apologies if this is not the right blog to be asking, but I figured the best place to go was from people who actually experience these things.. I suppose the background summary here is that, someone has been spreading a lot of hate and harassment towards other people, and when pretending to be the victim, said person claimed to have a "2-3 hour seizure." From what I've looked up that's not possible?? Even 5 minute long seizures are dangerous and life threatening, right?? No way someone survived completely undamaged after a 2-3 hour seizure, if that was even possible, right? Essentially- I am disgusted at the idea this person is potentially/possibly lying about experiencing seizures to get pity points on the internet. That certainly would be ableist to fake shit other people genuinely struggle with just to win an argument online.

Hi anon 👋

I think this is coming from a genuine place so I will give a genuine answer, unfortunately you are misinformed.

First, I will start out by agreeing that yes faking seizures or anything really is an incredibly shitty thing to do.

However, I do not know this person or their situation so I personally cannot nor do I feel comfortable saying that based on this they are faking. I’m not one to fake claim to begin with.

This person could be dealing with epileptic or non epileptic seizures both of which I explain here.

Starting with personal experiences:

I myself have had an hour and a half seizure (documented in the hospital)

Here’s a small snippet of just one of my seizures that lasted over an hour that required me to be brought into the hospital by ambulance (rescue meds failed).

I did not suffer any brain damage.

I also personally know other epileptics and non epileptics who have had hour longer plus seizures, even 3 hour seizures and ended up in comas and did not suffer brain damage. It’s definitely possible.

Official Sources:

Medlink Neurology: what kind of seizure was this person having? absence seizures in status epilepticus have been known to last for up to days.

Cleveland Clinic: Functional seizures are normally characterized to be 10 minutes+ surpassing the status epilepticus range

Healthgrades: Direct quote “Seizures can last seconds, hours, or even days.” with or without harm? That depends on the seizure and the person’s situation but it’s medically possibly.

All in all - we cannot assume.

I personally have not experienced brain damage but I have experienced things such as:

Again, screenshots come from my personal medical chart. I’m sharing it purely for educational purposes.

We also should not be fakeclaiming or judging people’s conditions.

Is harassment and hate shitty absolutely? I never condone that behavior. However, I do not condone misinformation or accusing people of faking an event or illness just because of their behavior.

Seizures as a whole are incredibly stigmatized and I do not like to continue that cycle.

[this-is-seizurism]

Some of my seizures cause 10/10 pain if I'm unfortunate enough to not be completely out of it and medical staff will still debate over giving me a regular normal dose of paracetamol through an IV.

They debate giving me over the counter painkillers found in homes everywhere for 'If I could speak I'd be begging for death' 10/10 pain. Because they're non epileptic so they 'Can't do anything about it anyway'.

Wonderful. 😭

🤦‍♂️🥲

This is seizurism!

Hi anon 👋

Check out my last post here as I think it explains a bit about the idea that unfortunately medical staff still carry stigma and misinformation regarding non epileptic seizures.

I’m incredibly sorry that this happens to you.

Another big problem is that hospitals and professionals are so quick to assume people are drug seeking which tends to delay and prevent a lot of care for many people.

I’ve seen people denied and accused of being a drug seeking just for asking for the meds in a literal migraine cocktail.

It’s insane.

The system needs to change and not punish those who need it.

I’m also personally not a fan of the pain scale as everyone handles pain differently and some have higher and lower thresholds than others.

[this-is-seizurism]

A medical professional said I was experiencing full body tremors. I was seizing. It was a seizure. They really don't like calling it what it is or actually being helpful because it's non-epileptic.

This is seizurism!

Hi anon 👋

I’m so sorry this has happened to you. Unfortunately, it is common particularly in general neurology and ER’s although some other professionals can be this way.

Full body tremors is inherently wrong and I’m sorry you had to deal with that, that’s frustrating and minimizes the experience.

I also have experience with non-epileptic seizures and I do have medical professionals refer to them as seizures.

It’s honestly okay to call them a seizure or seizure-like, although I would say be prepared to have them called seizure-like or an event in medical care just for accuracy purposes.

Some, may choose to refer to them as events, seizure-like events or seizure-like episodes which is definitely way better than calling it full body tremors.

As for not being helpful, unfortunately there is a lot of stigma surrounding them and some professionals still see them as something as a patient is actively inducing or faking which is not okay.

A lot of it is rooted in misinformation and stigma and I’m sorry the system has failed you.

I highly suggest finding a new medical professional if you haven’t already, it made a world of a difference for me.

[this-is-seizurism]

Hi!! I was just shown your blog by a friend and had a few questions!

Can symptoms for seizures, whether epileptic or otherwise, grow worse if left untreated? I've had spasms since i was in my tweens (maybe earlier, that's just when i remember it first) that i think are myoclonic seizures in hindsight. I've also had semi-frequent blank staring episodes. But this winter I ended up going limp (no full collapse! It came on slow enough for me to sit down) and unable to respond for... idk, 1 or 2 minutes? (Having trouble speaking after that absolutely sucked lol). It happened a couple times over the winter/spring which has NEVER happened before to my memory

Can you subconsciously/consciously fight a seizure? I've had times it felt like I was staying out of a staring episode by sheer stubborness cuz i was on the clock. It doesn't work in the end but i can postpone it a little, i guess? At least until i'm not talking to someone usually...

Can myoclanic seizures happen without visible twitching? Like as a mild shudder in your spine or chest with an unreasonable amount of build-up?

My episodes are all conscious, so is feeling a massage-like pressure /swirling moving over your brain with fogginess typical for a seizure?

Apologies if these are too specific or ambiguous. I know symptoms overlap a lot but you're the first I've seen so far giving ideas based on experience for this kind of thing 😖

Hi anon 👋

I always like to put disclaimers that I’m not a medical professional and do not claim to be but I will provide official resources.

I also want to apologize for the delay and having not posting recently. I have been incredibly busy and I have been preparing for a planned hospital admission.

First, I will start out that untreated seizures do get worse with time.

In terms of Epilepsy, the seizures can become more severe and detrimental. Structural damage, physical trauma, SUDEP and other problems can occur.

I want to clarify that you saying that you are “post poning” it and having it anyway could just be you having an aura and then still having the seizure anyway. However, some sensory grounding and deep breathing can work for people especially those with certain forms of focal seizures.

This could be a myoclonic jerk/seizure. They can be a small twitch, other times they can be large enough to make you drop things or fall. They can also present with an aura or “build up” as you described.

Pressure and swirling are also documented seizure auras.

A lot of these are concerning for focal, absence, myoclonic, symptoms.

I would definitely recommend taking notes of your symptoms and if you haven’t already done so get in touch with your medical provider for next steps in the diagnostic process. Let them know you are concerned that you are having seizures.

Resources:

Myoclonic seizure first aid - Epilepsy Action

Learn about myoclonic seizure first aid and find out how to help someone with epilepsy who is having a myoclonic seizure.

In focal aware seizures (FAS) or 'epilepsy auras', previously called simple partial seizures, a person is conscious and will often know some

[this-is-seizurism]

Hi! Not an experience, but I have a question. I do not have epilepsy nor do I know anyone who does, and I want to write a character who has epilepsy, but I’m not sure how to go about it exactly. I want him to have tonic clonic seizures, but also other kinds. Can people with epilepsy have those kinds of seizures as well as other types? When I look it up I get confused, and I really want him to be realistically epileptic. Can you help? Do you know any good places for me to learn more? Sorry if this is phrased bad or if it’s a stupid question.

Hi anon 👋

First off, I appreciate that you’re trying to go about this a respectful way.

To answer your question, yes - many Epileptics experience more than one type of seizure.

I myself experience focal to bilateral tonic clonic’s (meaning they start focally in one area and spread to become a generalized tonic clonic), tonic clonic’s, focal, and myoclonic.

Usually in people who experience more than one type it’s a focal onset plus a generalized type (think focal + absence or focal + tonic clonic)

Resources:

Epilepsy UK

CDC

[this-is-seizurism]

not seizurism, but wondering if you or any others have experineced getting hiccups more frequently than other people (espeicually after a seizure/episode)? it could also be related to connective tissue issues that i have, but i've alwyas been prone to hiccups and at one point in my life i had them at least 1-2 times per day, usually before bed. i am not epileptic but i have fnd and seizures related to that.

any connections to be found ther?e

(also please excuse my poor typing my fine motor control is not working well at the moment)

Hi anon 👋

From what I know, there is no clinical research or currently known connections in people with Epilepsy.

Could this be an FND thing? Possibly.

I personally have both types and do not experience this and don’t know anyone who does.

Here is a case study of 2 patients who do/did experience hiccups although they are Epileptic in nature, not seen on video EEG and both had lesions on the brain.

It is an understudied, rarely reported phenomenon.

[this-is-seizurism]

Untagged/just an update

Currently have 21 asks in the inbox.

I am noticing a slight improvement with the new medication but breakthrough seizures are definitely still happening especially when I’m around a trigger.

Lots of things happening and coming up for me including a neuro appointment.

[this-is-seizurism]

hi, i have a question! i get these recurring “episodes” i suppose and wanted to know if they are potentially seizures. i’ve never been to a doctor for this and so i’m not formally diagnosed with anything and dont know really anything about seizure disorders but these have been going on for some time.

in these episodes, oftentimes triggered by weed, i start getting a tingling sensation in my head and spine that very quickly moves through to my muscles. they feel almost like electrical currents running through me and making random muscle groups stiffen up. i also get pretty vivid hallucinations and very very extreme déjà vu. lots of tingling and general disconnect from my body because it’s like i was receiving such a vast amount of visual, auditory, and general mental data that it was overwhelming. these episodes will come in clusters of 1-2 minutes and stop for a bit before restarting, and the whole ordeal start to end can last up to 30 mins. i’m able to be conscious enough to remember the symptoms but not enough to meaningfully communicate.

should i be worried? i know so little about seizures and don’t know what a lot of them actually look like 😅 but i wanted to reach out and ask for insight from someone who knows more. thank you!

Hi anon 👋

I think my post about how seizures are diagnosed can be incredibly for you.

There’s a lot of information, symptoms, and added resources to look through.

I’m not a doctor and I cannot say for sure what is happening which is why I highly recommend seeking a diagnosis!

I want to highlight two things though:

Parts of this sound seizure-like

what concerns me is the déjà vu, altered awareness, and struggles with communication. These are red flags and I would have those checked out.

Parts could also be a reaction to weed

This would be the hallucinations, dissociation, THC in particular can also increase the risk of seizures.

THC has also been reported to cause substance-induced psychosis which is another aspect to consider (with or without history mental health history)

Please note that CBD is generally considered safe and effective for seizures, pain, anxiety, etc.

There is also an FDA approved medication that is CBD based (currently only used to treat 3 epileptic syndromes).

Regardless at the moment, I would consider the first step to be speaking to a medical professional about it because there are a multitude of things that need to be considered. Best of luck!

(Side note - I personally had a horrible time with THC and now do CBD gummies and I have no problems)

links:

Health Grades

Epidiolex

Epilepsy Foundation

Science Direct

[this-is-seizurism]

I was talking with a doctor and he said that he'd talk to the hospitals A&E about possibly withholding/delaying treatment when I go to hospital for my seizures because according to him there's nothing wrong with me and I'm fine.

Uhhhh no. I'm seizing, can't breathe properly and in incredible levels of pain. That's not being fine.

This is seizurism!

I’m incredibly sorry that this occurred.

Unfortunately, some doctors do believe in only textbook epileptic seizures.

However, in an emergency they do have to take into consideration the person’s rights and wellbeing to healthcare.

and quite honestly depending on where you are, they absolutely can get into a lot of trouble and you could even sue if you are having a legitimate medical emergency and denied treatment.

However, before it gets to that point I would highly recommend a second opinion from another doctor because most lawsuits are very time consuming and you’d quite sadly likely be very medically harmed from the situation and I would not want that for anyone.

I would see if you could have their opinion overruled and honestly sometimes it takes a while to find a good neurologist.

[this-is-seizurism]

not a seizurism submission, you’re just the most active epilepsy/seizures related blog i know of, so i thought i’d ask you

i get really annoyed by people constantly tagging the epilepsy tag like it’s a warning tag, so i’ve started commenting or sending asks to anyone i see doing that, asking them instead (not in addition, instead) to tag “epilepsy warning”, “tw flashing”, “flashing lights”, etc. (all suggestions i have seen epileptics request). are those the correct suggestions? thank you in advance!

This is not seizurism!

Hi anon 👋

Thank you for the submission!

Yes, these are the suggestions and within the community the agreed upon terms/tags to use!

Those of us with seizures and epilepsy would rather have those tags be safe spaces to talk, vent, educate, etc.

and have warnings and tw, cw, etc be the ones we can filter out :)

and this is typically the case for most other things (ie “mental health” vs “tw: mental health”)

and I highly encourage that you continue to advocate for the use of it!

Thank you anon!

[this-is-seizurism]

Hi friends!

Just an update.

In case you did not know I also deal with seizures - I am dual diagnosed with Epileptic and Non-Epileptic types.

I currently do not have much seizure control but I will be starting a medication that was given to me in-hospital that seemed to help so I am really hoping that I will be able to gain control with this new medication.

I have high hopes.

with that being said, it is difficult to run a blog like this with unpredictable seizures. I am trying my absolute best to though. This blog absolutely has a special place in my heart because I want to feel and hope that I have impacted and educated people, no matter the amount.

With all this being said as cheesy at it is - you are not alone. My inbox as well as direct messaging are open.

(Tagging so this reaches you guys)