#seizures

I took a photo of my eyes and face to document. Girlfriend said "It's very fascinating. Your muscles seem to group up making you more oval and your cheek bones are covered. I almost didn't recognize you."

I look more like my father in this photo.

This blog is place to submit your experiences with epilepsy, seizures and neurological disorders!

We realised there isn't one on this hellsite yet, so we made one!

We accept both positive and negative submissions, and we do tag potentially triggering topics. The same goes for explicit ones. Feel free to discuss all kinds of experiences related to the topic.

Start your asks with "epilepsy culture is...", "seizure culture is..." "FND culture is", and add any relevant details, like the type of seizures you're discussing.

We ourselves are still in the diagnostic process, but we definitely get seizures. Hopefully we can figure out how to manage them, our nerve pain and vertigo soon. Our main is @saros-system.

do i want to engage in my biggest interest or risk having a fucking seizure, scientists have yet to answer

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

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

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,

My body: *nods*

Me: Okay, so please ju—

My body: I cast seizure headaches

Me: …

My body: And malaria!!