Tumgik
#seizure disorder
gubgam · 7 months
Text
Y’all, tumblr is letting you report ads for having flashing lights! Tap on the 3 dots at the top and look at the bottom! Please do this for your photosensitive friends!
8K notes · View notes
desertwaterwitch · 4 months
Text
Made a similar post before (I don’t think on this account) but as a reminder:
We, as people with epilepsy, super appreciate when you tag something to let us know there’s flashing lights in it. A huge chunk of us have that seizure trigger. However, what’s important is to tag it this way:
Examples:
tw flashing lights
tw strobe lights
flashing lights
strobe lights
I notice people will tag “epilepsy.” That’s not good, though, because us epileptics regularly search that tag to find things about epilepsy and seizures we relate with. If someone tags the word “epilepsy” when there are flashing lights, we will pass them and possibly go into a seizure. Very dangerous, no matter what type.
For me I filter out those tags now, but coming across them because they’ve been tagged incorrectly, that’s scary.
I want to thank everyone who does tag correctly. You have helped me and others who have epilepsy.
Please pass this on! 💜
521 notes · View notes
brain-buddies · 1 year
Text
Tumblr media Tumblr media
This is a big deal. Elon Musk just fired everyone who can make life easier for people with disabilities, everyone who represents people with disabilities. The people who could save a someone's life.
533 notes · View notes
v-tired-queer · 5 months
Text
Y'all ever go awhile without having a seizure which make you pretty proud of yourself and then suddenly you get this feeling and you're like . . . oh no
70 notes · View notes
voidxbrat · 10 months
Text
FUCK this glitchy/flashy/shaky/static effects trend that every person who makes any sort of media is getting into and putting everywhere without any trigger warnings whatsoever!
You are making it impossible for people like me with seizure, vision, photosensitivity, etc issues to engage with any media (especially videos and/or reels taking over) AT ALL!
So tired of it, fuck the ads everywhere (even here now!), fuck the reels taking over, fuck this flashy effects trend, fuck it all.
Sincerely, someone with severe vision, photosensitivity, and seizure issues, who is being forced away from every form of media for the sake of their own health.
118 notes · View notes
a-sassy-bench · 5 months
Text
spent the morning with my neurologist explaining to me how i might need brain surgery and now I have to pretend everything's cool and go to work or i won't have insurance for brain surgery
Tumblr media
52 notes · View notes
Text
I went to the ER yesterday because I was having chest pains and extremely severe lower back pain that was affecting my ability to walk. I have a pre-existing spinal cord injury and I aggravated it during a seizure Monday, but I kept going about my normal activities until I picked up my daughter and felt like I was being shot in the spine and that my legs and feet were being pelted with broken glass.
My heart rate was extremely erratic and low and the nurse was running in concerned every few minutes because of the alarms going off. He said that my pre-existing bradycardia and arrhythmia didn't explain what was happened and that he would tell the doctor.
The doctor eventually came in, didn't acknowledge my chest pain and shoved his finger in my pre-existing spinal cord injury, causing me to collapse forward screaming and sobbing. My partner said that my entire back flushed bright red when this happened and he had to answer questions for me for the rest of the time the doctor was there.
The doctor sent me home with no imaging, no pain relief, nothing but the statement "I'm not giving you narcotics." I expressed my frustration and that I was more worried about walking than I was the pain, and they understood but by that point I didn't want to wait for a different doctor who would listen to me and the nurses. I wanted to go home.
And I realized when I woke up this morning that I strained myself so much trying to move that I ended up causing a hernia in my abdomen again. I already knew that my umbilical hernia repair was coming undone over the past few months but now I have a spot under my left rib cage that bulges out and hurts whenever I cough or move.
Also I checked my blood work today after everything. High white blood cells. High platelets. Low MPV. Extreme bradycardia. Irregular and erratic heart rate between 30 and 45 bpm with spikes up to 110 bpm when he touched my back. All of that, plus the fact that my body flushed with the pain, are proof that this is a physical problem that my body is trying to fight and react to. I just wish physicians would listen rather than assume I'm drug seeking.
Edit to clarify: most of the nurses were listening to me and advocating for me but the physician wouldn't listen so there was nothing they could really do but remind me that I could come back if it got worse and help me get a wheelchair out. It freaking sucked. Also, it's now the next day and I can kinda shuffle short distances without help but even walking short distances with my cane is hell. I also realized that I now have a lot of abdominal pain and I think I have a new hernia from straining to move.
I have a doctor's appointment in a few days.
20 notes · View notes
skeleticcs · 4 months
Text
Seizure types
When someone says the word seizure we typically think of someone shaking on the floor unconscious, but there’s actually a lot more to seizures! They’re different for everyone but here are my most common types and how they look on me and (kind of) how to help during certain types of seizures
Absence seizure: An absence seizure is a lapse in consciousness that can last anywhere from 30 seconds to 5 minutes. I’m completely unaware of my surroundings and unable to respond, but I’ll just look like I’m staring off into space. There’s not much you can do to help besides stay with me and make sure nothing bad happens while I’m ‘gone’.
Atonic seizure: An atonic or drop seizure is a brief loss of muscle tone that looks exactly like it sounds, I just drop. Mostly it’s head drops but sometimes my whole body will give out. These usually only last a couple seconds so no need to help much, but be aware that atonic seizures can often be warning signs of a larger seizure.
Partial seizure: During a partial seizure I’m really out of it and unaware of my surroundings. I may still be able to respond to you or walk around but I’m not myself in these moments. The main thing you’d need to do to help is try to keep me in one place and away from anything dangerous. Do not let me wander off as I’m not really conscious and don’t know what I’m doing, which could end with me getting hurt.
Grand mal seizure: These are the types of seizures most people will think about when they hear the word. Grand mal or tonic-clonic seizures are the violent ones that involve convulsions, shaking, muscle stiffness, etc. follow basic seizure first aid for this type of seizure.
35 notes · View notes
bnyrbt · 5 months
Text
re-make of a previous poll in hopes of a larger sample size.
29 notes · View notes
finnslay · 17 days
Text
"Seize The Day"
A short poem by put system member Atlas about seizures, specifically our seizure disorder, PNES
I can feel the tingle,
It crawls up my fingers.
It goes up the tips,
And there it lingers.
As it spreads up my arms,
And down ny spine,
It claim the muscles,
That I thought to be mine.
The world starts to spin,
It gets hard to breathe.
My joints, they lock up,
And my knees, they freeze.
I'll stand and I'll stare,
And your hand I'll squeeze.
But it's hard staying calm,
When your body is seized.
I'll go limp in your arms,
As my muscles twitch.
My brain sings a song,
My ears hear the pitch.
My body will shake,
As it lies on the floor.
It will tremble and quiver,
As I wonder "what for?"
Life is exhausting,
And also a bore,
When even with your body,
You're always at war.
As the nurse turns the corner,
I wish for nothing more,
Than to be free from this nightmare,
Which I can no longer ignore.
They lift me into the wheelchair,
They will roll me away,
And I'll sit here thinking.
I'll sit here and pray.
I'll wish maybe, after all,
There will be some, any way
For me to not take literally the phrase,
"Seize The Day"
13 notes · View notes
lifblogs · 27 days
Text
Ubers need to be made safer for the disabled community. A lot of disabled people cannot drive, and have to go to a lot of appointments, or even try to go out and have fun sometimes. And what do we get? Ubers that stink of cigarette smoke and/or marijuana, ubers with scents that are way too strong, dangerous drivers, sexual harassers…
It is not fair that I had two seizures at the library when I was trying to enjoy myself because my uber driver apparently can’t keep his marijuana use away from his job. Absolutely unacceptable.
14 notes · View notes
ribbitflings · 5 months
Note
Hey, I know we don't know each other, but you seem to know a lot about the topic of seizures.
If it's not a bother, could I ask you a few questions about them?
Specifically about focal seizures/partial seizures.
What is a focal seizure like for you?
I've been having these episodes for as long as I can remember that I labeled dissociation for a long time, but recently have come to find out resemble focal seizures. A few triggers are bright flashing light, and being stressed out and tired at the same time. My vision gets blurry, a wave washes over my brain (dunno how else to describe it), I feel either so spaced out I don't have feelings, or I feel extremely fearful with a feeling a deja vu, I blink a lot and lick my lips, and sometimes my hand moves on its own in repeated motions. Usually lasts about two minutes, and leaves me feeling quite haggard for hours afterwards, I usually sleep after them if possible.
I'm going to try and get into a neuro soon but it's been driving me NUTS thinking about it. Does this sound like it could be a focal seizure to you? I haven't been able to talk to anyone with epilepsy about it, and I think doing so could be enlightening, like they'd know what questions to ask to tell the difference having been through a seizure themselves.
Thank you for your time, even if you don't reply. Have a nice day.
this sounds a lot like textbook TLE focals or a generalized absence, yes. depending on your doctor, you might be labelled as "easy" or it might seem suspicious because it's "too textbook."
i just came back from a follow up that went downhill because i happen to have mood changes associated with my biggest seizures, that also clear up after the events, so i turned down antidepressants since im not currently depressed and its a self solving issue, and i have an aura, postictal state, seizures during sleep, stereotypical posturing, bro has seen literal videos of the typical events, and the moment i mentioned any kind of mood change with bigger events, he immediately slapped the mental health label on it, is ready to stop my meds, and did not set up a follow up. he was positive the appointment before that i have TLE and where it was probably coming from and now he wants to slap the mental health label and not bother. i also happen to have life stressors, as does everyone else, mine may be more so since i have insane parents and in-laws, but yeah just be really careful of that. epilepsy is a very common neurological disorder, second to headaches, but when someone isnt willing to put in the work (this guy barely asks questions and did not know that one of my recent seizures was my fault for taking meds too late and happened during my sleep), they jump to statistically unlikely conclusions that are overtly sexist and can become extremely dangerous for the patient (such as pulling a patient off of necessary meds)
16 notes · View notes
jamie-rosemary69 · 7 months
Text
Having FND and autism is the wildest thing, I just had a partial seizure because I got too excited about Spider-Man?
23 notes · View notes
brain-buddies · 8 months
Text
Tumblr media
33 notes · View notes
v-tired-queer · 5 months
Note
Hey! We don't know each other but I found you through the PNES tag. I'm trying to find out more info about PNES versus temporal lobe epilepsy, to help me figure out how likely it is that I need medication for what I'm pretty sure are focal seizures.
My question is: can PNES seizures have an aura?
Are there any ways you know of to tell the difference aside from an EEG during an episode? I am planning on getting a neuro referral at my next doctor's appointment but it's been giving me bad anxiety worrying about it.
Thank you for your time.
Hello! I really hope things go well with your appointment! I know how scary all of it can be. I have full faith that you've totally got this though!!
So, to answer your question: yes, some people with PNES can and will experience an aura before a seizure, but others won't. The way that PNES affects people and is experienced can vary from person to person. For example, like I said, I do experience an aura sensation before I have a seizure. My head begins to fog up in a way that's kind of hard for me to fully describe. For me, it's almost like I'm slowly becoming mentally numb, like a fog is rolling in that puts me on high alert. But I also have other tell-teale signs that I'm about to seize: my left hand always starts to tremble, and I always become vastly less-than-aware of myself and my surroundings. Other people with PNES might have different cues, or similar cues, or anything else entirely. That being said, the seizures themselves can differ, too. While mine include no longer being in control of my limbs and violent convulsions and twitches, some people may have ones that look like absence seizures, or even another type completely.
Before I was officially diagnosed, I went to two different neurologists and had two different EEG scans done: one in office and one overnight. They monitored how my brain behaved both outside of a seizure and during a seizure. PNES seizures and epileptic seizures look very different on EEGs, which is to be expected due to their different causes. It's actually pretty cool to see the difference, I recommend looking up some different scans to see! But outside of the tests, my doctors ran through my symptoms and how I experience having a seizure, and were able to jot down the differences in what I was experiencing compared to someone with epilepsy. For example, I'm actually able to hear everything around me during a seizure, but since I'm seizing, I'm unresponsive no matter what, which tends to be abnormal for the type of seizure I experience. I also go completely nonverbal after a seizure for anywhere from 10 minutes to an hour. But again, that's just how I experience them. Experiences can and often times will vary from person to person, but the cause is the same: PNES is brought on by an emotional response, while epileptic seizures are caused by a physical response from the brains nerves cells.
Now that being said, temporal lobe epilepsy doesn't seem to be caused by an emotional reaction, but rather, can be triggered by an emotional reaction (usually high stress levels) due to the epilepsy being present in the, well, temporal lobes. Which then circles back around to the overall cause being different, though symptoms can be similar.
To be honest, due to their similarities, I'm not sure if you could be diagnosed with one or the other without having EEGs and other tests done. But the good news is, none of the tests hurt! And for all of them you'll be closely monitored so in the event of a seizure you won't be injured then, either.
(I'm a "glass half full" kind of person lmao)
I cannot stress enough how important it is to be honest with your doctor about what you're experiencing. It's definitely anxiety inducing for a lot of us, but the more open and honest you are with them, the more they can help steer you in the right direction. And if you get saddled with a doctor unwilling to listen or simply write you off, please don't hesitate to really advocate for yourself. You really need to be in your own corner so you can get the correct diagnosis, so you can then get the proper help and treatment you need. It'll take time, and at some points it'll probably be frustrating--I know it was for me--but it's so important to get the proper treatment for the true problem.
I really, really hope that things go well for you and that you can figure out what it is that you're experiencing! I'm rooting for you!!
(Also this got very long very quickly, but I hope it helps nonetheless!)
16 notes · View notes
twisted-rat-king · 3 months
Text
me having to decide that whatever neurological issue causing my seizures is not severe enough to check because i cant afford to all the other shit im dealing with if I get an MRI
9 notes · View notes