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@justepilepsy
UI Animations
Sometimes I get reminded, that I have all the animations of my phone's AI disabled because they make me motion sick. And it baffles me how people don't just disable most animations in their Operating Systems. I have most Windows UI Animations disabled, simply to improve the computers performance. And Linux i also disable animations as much as possible...
PSA: if you're watching the new Knives Out mystery (Wake Up Dead Man), please be aware that around 1 hr 34 minutes in, there's a series of flashing/strobing lights. the sequence lasts about a minute.
^ comment I got on tiktok bc I posted this same thing there. this is why I'm giving the warning because netflix and the theaters didn't 😔
[ID: comment reading "I have epilepsy went to see it yesterday and covered my eyes too late and had a seizure and all I could think was why are we STILL not putting strobe warnings on movies..." /end ID]
To be specific [spoiler warning for Wake Up Dead Man] there is a scene in the rain, the priest will slip on mud, run into the woods, and a fist will knock him out. Close your eyes immediately when you see the fist. Don't open again until you start hearing conversations.
Sharing for the plot specifics which makes it a bit easier for people who are watching compared to tracking the timings
hey gang!! reminder that seizures can kill you and should not be seen as a joke
repeat after me!! epilepsy!! is!! not!! a!! joke!!
do!! not!! try!! to!! trigger!! seizures!!
it's!! not!! fucking!! funny!!
seizures!! can!! kill!!
thank you for listening to a tedtalk by someone who HAS epilepsy and has experienced it first hand. it is not fucking fun stop acting like it is ty
this guy, the first (and last so far) time i met him, i mentioned i have epilepsy.
he made a "drowning in the bath" joke. then gave a half-arsed apology and like..........
i personally make a lot of jokes about seizures, epilepsy, etc. but i draw the line at death jokes unless you know me VERY well and even then like? i started having fits when i was 11 years old. i became suddenly aware of my own mortality and it is not a joke.
epilepsy and parenting
Looking at what it takes to become a foster parent in my state, realizing that I'm like, one fire extinguisher and a zillion outlet covers away from being ready to start taking their qualification classes.
I was looking at the page of foster kids up for adoption, and they're almost all teenagers or disabled kids. One loves cats and reptiles. One likes to crochet. One wants to learn Japanese. They're all still kids, even if they're 19 or 20. They're old enough to join the military, they're traumatized, but they're just kids.
BUT one of the requirements to being a foster parent is passing a physical. They say you can be disabled and still be a parent, if you have the "Ability to provide care, nurturing and supervision for the child." That's... awfully vague.
I really hope epilepsy doesn't rule that out.
Dudes healthcare is so fake. My ADHD meds are $940 without insurance. But they gave me a website of "coupons" which straight up looks like a scam website, and I got it today for $60! Just a coupon from a random website and it was $900 cheaper. America, I am confusion!! America explain!!
For all my uninsured judys out there it's for Walgreens only: walgreens.rxsense.com
as a pharmacy technician i can share with you some websites that give you those "coupons" for your meds!
goodrx is the most well known one, but if i'm trying to find the cheapest price for a patient i compare it to scriptcycle, and use whichever is offering the best price. you just type in the medication (PLEASE make sure you're getting the right drug, dosage, and quantity) and your zip code and they will spit out some offers for you
some pharmacies may have their own discount card to compare to as well!
if you are getting a name brand medication, you can also look at the manufacturer's website to see if they offer any evouchers for you to use too
good luck out there 👍
Whenever someone was uninsured I use to run these coupons automatically. Was I supposed to according to corporate? No
Did I do it anyway cause fuck medication costs? Absolutely
We got a lot of uninsured foreigners on vacation who would come in for antibiotics for their sick kid and get whiplash when I told them their liquid amoxicillin was 700$ without insurance. I always asked if they had insurance and if they didn’t I’d be like: want me to apply an rx savings coupon?
I had like 6 coupon codes memorized and would input them in to find the cheapest one for the medicine.
A lot of name brands are still expensive but it can cost thousands of dollars less with a coupon. (Yes THOUSANDS: I use to dig pretty regularly for rx codes for some of my patients who were low insured and were unable to afford their heart meds otherwise, and don’t even get me started on the donut hole issue with some patients).
There are OPTIONS
Don’t take the price rolling over. If you can, tell your Dr, if your Dr can’t help with the price ASK YOUR PHARMACY TECH OR PHARMACIST. I’ve gotten someone’s week of post surgery pain meds down from 200$ to like 7$ because their insurance didn’t cover opiates (yes I’m serious this guy just had knee surgery and his insurance wouldn’t cover the pain meds for recovery).
If I as a pharmacy tech could get your meds more accessible to you I would! Most of us techs will! No one understands the BS of pharmaceuticals like a pharmacy worker, please ask for help if you need it and we’ll try to steer you in the right direction.
hi in honour of disability pride month i would like to give a shoutout to people with epilepsy who don't have seizures often. the ones who have other symptoms. migraines, mood swings, pain, confusion, brain fog, adhd, autism, depression, psychosis, insomnia, hypersomnia, anxiety, pots, heart problems. i see you and i love you and you are just as valid as people who have seizures often. we struggle too and i love you so much.
I'm so pissed off about my symptoms im making a PowerPoint about it
Danke automatische Übersetzung. Ich bin mir sicher, genau das war gemeint.
Okay I’m currently furious that migraines are often so blindly easy to treat and I had to find this out myself at the age of 26 when I’ve been to a neurologist since I was 11 lol so I’m about to teach you two neat and fast little tricks to deal with pain!
The first is the sternocleidomastoid muscle, or the SCM muscle.
This big red section is responsible for pain around the eye, cheekbone, and jaw, as well as some temple pain. Literally all you have to do is angle your head down a little, angle it away from the side that hurts, and then you can gently pinch and rub that muscle. I find it best to start at the bottom and travel upwards. The relief is so immediate! You can increase pressure as you feel comfortable doing so.
Here is a short and easy video showing this in action
The second is a fast and easy stretch that soothes your vagus nerve, which is the nerve responsible for calming you down. The vagus nerve, for those unfamiliar, is stimulated by deep breathing such as yawning, sighing, singing, or taking a deep breath to calm your anger in a tense situation.
You can stretch this out by sitting up as straight as possible (this does not have to be perfect to work) and interlacing your fingers. Put your hands on the back of your head with your thumbs going down the sides of your neck and, while keeping your face forward, look all the way to one side with just your eyes. Hold that until you feel the urge to breathe deeply or yawn, or until you can tell there’s a change. Then do the same thing on the other side. When you put your arms down, you should clearly be able to turn your head farther in both directions. If the first session doesn’t get rid of your migraine, rest and repeat as many times as necessary. I even get a little fancy with it and roll my eyes up and down along the outer edge sometimes to stretch as much as I can.
If you need a visual here’s a good video on it. I know some of the language they use seems questionable but this is real and simple science and should not be discarded because it’s been adopted by the trendy wellness crowd!
I seriously cannot believe I didn’t hear a word of this from any doctor in my life. Additionally, if you get frequent recurring migraines, you may want to see a dietician. Migraines can be caused by foods containing histamines, lectin, etc. and can also be caused by high blood pressure in specific situations such as exercise, stress, and even sex.
If any of this information helps you I’d love to hear it btw! It’s so so fast and easy to do. Good luck!
*currently suffering from a horrible migraine. Tries this*
Are you fucking shitting me it works!?
What. The fuck.
@thebibliosphere here might be the cause of some of your migraines!
It is, actually! My sternocleidomastoid was one of the muscles that tore badly after my chiropractic injury. Rehab is slow going.
Thank you so much for this @thebibliosphere
Thank the op! And also just because some people are being a bit unkind in the notes and telling people that if this works for you, you don’t have migraines you have tension headaches:
Cervicogenic headaches are a thing and are just as debilitating and are not just simple tension headaches and are often sometimes lumped under the umbrella of migraine disorder.
They are caused by muscle dysfunction and damage to the nerves in the neck/base of the skull and they often represent as typical migraines in terms of pain intensity, pain pathways and also the longevity of the attacks. They can also cause nausea, vomiting and a whole host of other symptoms that are typically treated with migraines targeted drugs.
They can also become chronic or episodic depending on the cause and also result in the development of other chronic pain and neurological disorders such as occipital neuralgia which can also feel like a migraine and often trigger the brain into experiencing the exact same symptoms due to following the occipital pathway which is the most common representation and cause of migraine pain and other symptoms.
You’re migraines might not be caused by muscle dysfunction, but for a lot of people it is a contributing factor or even a symptom of migraine itself as migraines can cause the muscles in the neck to tense up in response to the misfires going on in the brain during an attack, leading to other problems like the above mentioned.
My occipital neuralgia was likely caused by many facets of my neck injury, but my neurologist and pain specialist both agree my migraines going from episodic to chronic was also a part in it because of how my body tenses up during migraines. The migraine aggravates my neck injury, which then causes the muscles around my skull to crunch the occipital nerve, leading to occipital neuralgia which now causes me to have daily migraines if I can’t get my neck to give up the death grip it has on my skull.
Sometimes I can do this with stretches and massage which can lessen the pain. Other times I’m in the ER getting shot full of IV anti-seizure meds because it’s the only thing that calms down the migraine which in turn stops the muscle spasms.
Migraines are a complex neurological disorder that represents differently across the spectrum of sufferers. Hell, some people don’t experience pain at all with their migraines. It’s a weird fucking disease.
I understand the desire to emphasize how much worse migraines are than normal headaches that respond to hydration and pain killers. Believe me. I’m one more “have you tried drinking water?” away from going on a justified murder spree. But we also don’t get to look at stuff like the above and say “well that’s not a migraine” when yeah, actually, it can be.
There’s a reason neurologists will often try sending patients to physical therapy for severe migraines. And it’s because the sternocleidomastoid is a cunt and that cunt being fucked up can make migraines worse.
Yeah, maybe some of the people in notes just have tension headaches. Or maybe some of them have got fucked up neck muscles from their migraines and learning how the neck is involved in migraine management might be helpful for some. Is it going to help everyone? No. Does that mean it’s not a relevant thing to discuss in context of migraine disease? Also no.
Been on a long hiatus for quite a bit. I am doing good (in case anyone is curious). I have a lot of stuff going on, but positive in most cases. I am working on my next animated original film. I have a dog now! I am meeting people and going outside. Basically I am trying to reduce my general online activity/consumption.
Not so much in a chase for productivity (ew capitalism bad) but in a wish to get things done and to make new connections and experiences.
I'm sending lots of love and best wishes to all fellow epileptic folks and seizure-disorder people this epilepsy awareness month.
I need some advice on whether I’m having myoclonic seizures. (I am waiting for a doctor’s appointment but I just really want to know what’s going on.)
I have these full body jolts/glitches sometimes, have done for as long as I can remember. I can go days and even weeks without one and most of the time they’re isolated, although I did have a cluster of them last year which resulted in me throwing my phone and dropping a fork. I get confused and disoriented for a few seconds after each one and when I had the cluster I found it difficult to walk for a few minutes afterwards.
I don’t have any other types of “seizures” (in quotations because I don’t know if they’re seizures yet). I don’t really have auras either? When I had my cluster I could kind of tell if I was going to jerk again but when they’re isolated I can’t.
Please, I could really use some advice on this. From what I’ve seen of myoclonic seizures it looks like what I’m experiencing and I’m concerned.
The tags below are NOT me self diagnosing, it’s so people who experience seizures can see my post and offer any insight if they would like to.
All I can contribute is, that auras are optional and nor everyone with seizures experiences them.
If folks with myoclonic seizures have any advice or things to share, chip in!
Happy disability pride!!!
I've been a bit inactive. Mostly because I have a new dog and my day is now a lot more structured and also busy at the same time. But in a good way!
I was curious and googled if there was an epilepsy creature and since I couldn’t find any I drew one 💜🦋💜
hey fellow Europeans (EU), just a friendly and mildly concerned reminder that in less than a month, the European elections are taking place. it's an election with a historically low turnout, but one that is just as important as any other, if not more. the composition of the EU parliament determines the political direction of the EU, and has an impact on all 27 countries through directives and regulations that get voted.
we cannot let far right extremist parties get an even bigger stronghold there than they already do. sadly, there are very significant threats of exactly that happening from many countries.
so please, if you are an EU citizen living in the EU and are of voting age, check the modalities to vote in your country of residence, and make sure to make your voice heard.
Admin Brandon here with wonderful news: John Krasinski's IF is SAFE for photosensitive audiences!
I'll have my video review and evaluation of this film available on Patreon today, and on Facebook and Tumblr on Tuesday.
Mobility assistance
Roll Mobility
Got sidetracked and made myself a really silly shirt.
Added it to Redbubble like I do every design I make myself!
I'll take a picture when it arrives.
