Archive

This blog is now closed and left as an archive. Thanks for the good memories!

[epilepsysupport]

Confronting my absence

So. Hello. Recently I’ve gotten some notice that a few of you have been worried about me, which is really sweet. I’ve decided that the hiatus is over and I will no longer be running this blog at all.

I was diagnosed when I was 12 and started running this blog when I was 13 (I think. You know us epileptics and our bad memories). Unfortunately, my neuro was very abusive and because I was a minor, I was trapped with him. I made this blog to help others because I didn’t want anyone to feel helpless like I did in my abusive situation, but I don’t need that anymore because I feel safe with my current team. I didn’t realize that’s why I’ve felt distant from running this blog, but I see it now, and I think it’s important to my recovery to take a step back permanently and just look after myself.

I’ve been working on my own health and I’ve made a lot of progress and I’m happy to inform you all that there’s no need to worry. I’ll be leaving this blog up as an archive, and you’re welcome to message me for my main URL if you want to be friends, but I can’t be the person who used to run this blog anymore because I’m no longer in the situation that drove me to create it. I don’t feel like the only epileptic in the world anymore, and I’ve got all of you to thank for it.

[tielacole-blog]

Hello my name is Tieneicia, I am 22 years of age my girlfriend Serenity Green, 22 years of age.

My girlfriend suffers from epilepsy due to her mom being on drugs while in her womb. We are two young women with regular jobs. Trying to pay the bills that we already have to pay .

On March 4th , 2019 Serenity has 3 seizures back to back I called the ambulance they rushed her to ER . We can’t afford insurance at time so it wasn’t much they could do. They gave her a prescription called (LEVETIRACETAM) witch cost $147 out of pocket. The next day she had an Allergic reaction from the medicine she was Prescribed. She wasn’t breathing right, shaking, and Hallucinating. I called the ER again, we got to the hospital and they told me they were glad I came as soon as I did because she was having a reaction to the medicine. They Prescribed her a new medication called (VIMPAT) we took it the pharmacy and the total of the $800. Its a medication she really needs to help with her seizures. If it’s possible in any way anyone can help us out would be thankful

My PayPal is : paypal.me/tieneicialacole

Cash app : $Tieneicia

Pay Tieneicia Harris using PayPal.Me

Go to paypal.me/tieneicialacole and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries

[epilepsysupport]

So I know it’s been a while but I had to update you, mostly because of this annoying conversation I had with one of the nurses at my neuro’s office.

Usually the nice one calls me and she and I know each other well but instead the lady that did my last EEG (who thinks people with psychogenic seizures are actually fakers and also gave me a chemical burn, pretty sure it was intentional) was the one who called. 

I’ve been having migraines again lately and the nurse called to say my doctor wanted to prescribe topamax, which unfortunately was prescribed at an unnecessarily high dose by my last neurologist (who was extremely abusive) and I now have a pretty healthy aversion to the drug. I explain to the nurse on the phone that I had a bad reaction to the drug (because I don’t want to get into All That), to which she responds doubtfully that what I described actually happened. And then

Nurse: Who was the doctor that prescribed it initially?

Me: My former neurologist.

Her: And what is their name?

Me: ...Why.

Her: So I can call and see what dose you were on.

Me: I was on 200 mg twice a day.

Her: I still need to call.

Me: He’s... not in practice anymore (big lie but whatever)

Her: I still need his name so we can find a way to contact him or his office.

Me: I don’t give you consent to call him.

Aaand then she hung up on me.

[sunflower-cane]

Your illness has not made you ugly

Your feeding tube has not made you ugly.

Your ostomy has not made you ugly

Your cane has not made you ugly

Your wheelchair has not made you ugly

Your oxygen has not made you ugly

Your wig/your bald head has not made you ugly

Your teeth or lack of has not made you ugly

Your body has not made you ugly

Your medications has not made you ugly

Your rashes, blemishes, scars and bruises has not made you ugly

Not being able to shower has not made you ugly

Flashbacks and paranoia has not made you ugly

Changes in your body and brain has not made you ugly

Having seizures has not made you ugly

Your trauma, depression and anxiety has not made you ugly

Your hallucinations, brain fog, and confusion has not made you ugly

Your lack of control over your body, brain, mood and life has not made you ugly.

Please never feel ashamed or ugly about what your illness has done to you, no matter what it has changed it can not change the beauty that you have, so even if you feel like youre not beautiful right now, please remember,

You are beautiful and your disability can never take that from you.

[fuckepilepsy]

EPILEPTICON 2018 GIVEAWAY

In my EpileptiCon 2018 announcement post, I mentioned that I would provide some incentive to participate in the festivities. Well, here it is:

This is an Epilepsy Travel Pack! It is designed to help meet your needs as a epileptic when you hit the road. Before I get to the contest rules, let’s talk about what’s inside.

A backpack. This backpack is manufactured by Columbia, a brand of high-end outdoor camping gear. I own some of their stuff; it’s high quality and worth the money. I dwelt on this decision for months and researched dozens of backpacks and travel bags before settling on this one. There are more fashionable and/or gimmicky bags out there, but I wanted something durable. I’m confident that you could drive a car over this bag a few times and it would be fine.

Coloring book. @the-twitchy-life recommended this to me. It’s a coloring book for adults, meant to help reduce stress. You’ll have to buy your own pencils/crayons; I’m not going to tell you what colors to use.

Pill case. This is an eight-compartment container mounted inside a fabric case. The compartments are labeled by day of the week, and there is a space for a card of some sort inside.

A stuffed animal. Don’t pretend like you’re too old to enjoy cuddling a cute baby deer. It’s a little on the small side but considering that this is a travel pack, I felt it a good idea to not be too ambitious with my stuffed animal.

Socks. You might be under the impression that the bag is the centerpiece of this giveaway, but it is not. These socks are the big draw, because they read “FUCK OFF” on the soles. I know that socks aren’t really directly related to the theme of “travel,” but they really suit my overall message as an epilepsy blogger.

A sleeping mask and earplugs. @the-twitchy-life suggested this to me. It’s not always dark and quiet when you need it to be. Maybe you need to catch a nap, maybe you’re experiencing sensory overload and need to shut everything out. Hopefully this will help.

Snacks. Not the fun kind, the helpful kind. These are gluten and dairy-free energy-boosting snacks from the hippie store. Navigating the hippie store and its goods is a challenge for me. When I went in they had “vintage soap” on a rack near the door. I don’t know what that means. How can soap be vintage? Is it old? Did someone find it in storage somewhere? Anyway I just bought these snacks and got out of there as quickly as possible.

A pillbox fob and key clip. I use one of these to carry around my emergency anticonvulsants with me wherever I go. This one is water-resistant with a rubber seal. You can unscrew it, drop your pill(s) in there with a little padding (I use a little tissue), and you go. Carrying some spare meds around with you in a small, discrete container will reduce the chances that you wind up somewhere without your pills when you need them. There is an x-factor here: just knowing that they are always on hand is reassuring in times of trouble.

A 32 oz. water bottle. I’ve been using a Nalgene water bottle on a daily basis for more than ten years. They’re tough and durable, and when full, have enough weight to be used as a club. 

OTC meds. A travel vial of Advil, Emergen-C powdered vitamin supplement, and Sea-Band anti-nausea ginger chews. A support staff for your AED crew, if you will.

A “F*CK EPILEPSY” patch. I don’t know if you have a use for a patch. I certainly don’t. But this patch has my message written all over so I’m including it in the travel pack.

HOW TO ENTER:

Let me be perfectly clear about something: this giveaway is not a promotion for my blog. It’s not about getting notes or increasing my follower count. You don’t have to follow me or reblog this post to win. I have one objective, and that is to provide incentive for the epilepsy community’s participation in EpileptiCon 2018. That being said, I am treating my giveaway like a raffle. Here’s what to do:

1. This contest is exclusively for people who have epilepsy.

However, we’re on the honor system here, because I will not for one second ask for proof of a diagnosis because that would be creepy and intrusive no matter the circumstances.

Understand this: you’re looking at about eleven hours of my life here. This is time I sold to an employer for whom I perform life-risking work. I did this mainly to pay bills and not starve to death on the streets, but that’s also how I got the money to buy this stuff. I desperately want to give people who have epilepsy something just for them to be excited about. I want us to be able to have fun together for just ONE week. So if you do not have epilepsy, sit this one out.

2. Make posts here on Tumblr that pertain to epilepsy.

Participate in EpileptiCon by contributing posts to the event, running from November 1st through November 7th. Tell stories, draw shitty comics, lash out in a furious burst of rage, write a poem, shitpost every ridiculous epilepsy-related idea that pops into your head. If you need ideas for what to write about, I will be providing suggestions daily. Most of them are terrible, but I’ll do my best to inspire.

3. Tag your posts with #epilepticon.

I will also watch #epilepsy, #actually epileptic, and the other epilepsy-related tags. If for some reason your posts don’t show up in the tag (which did happen last year) you can also tag my url. If you don’t want to have it on your blog, for one reason or another, submit your post to myself or @the-twitchy-life, who cofounded EpileptiCon with me. The bottom line is that I need to see it one way or another!

I will assign a number to every post, and when EpileptiCon 2018 concludes, I’ll run it through Google’s Random Number Generator to pick a winner. The more posts you make means more chances to win. 

Bear in mind that winning the EpileptiCon 2018 Giveaway does mean that you will have to provide me, an Internet stranger, with a mailing address. If you’re not comfortable with that, I hope you will participate anyway, just for fun. Just give me a heads up so I don’t put a number on your posts.

I hope to see at least a modest amount of participation, because as you might have noticed, all this stuff is purple, as that is the official color of epilepsy awareness. But guess what? I fucking HATE purple. I am not keeping this stuff for myself. So take it off my hands, won’t you?

Tagging the other epilepsy blogs to spread the word:

@the-twitchy-life @purplesmartass @justepilepsy @dont-look-at-the-lights @numbepilepticlife @brainbuffering @epilepsysupport 

[rhy-maresh-deactivated20180628]

How to tell if a video is a screamer

halloween is fast approaching, and sending screamers has become an increasingly popular trend over the past few years. while some people may enjoy them, they can also trigger anxiety attacks in others.

check the section/category of a video. if it’s under “comedy”, “prank”, “horror”, or something similar, close the tab immediately.

comments are also a giveaway. scroll to the comments section before playing a video. if comments are disabled, there’s a likely chance the video is a screamer. close the tab right away. if you see comments like “whoa, that made me jump!”, close the window! and if it’s impossible to disable comments, look for multiple comments deleted by the creator.

check out the video itself, while it’s paused. if it has very low music (this makes the audience want to turn the volume up, so the scream is louder and scarier), or if it has very small text (which makes you want to go into full screen), that’s a good indication that it’s a screamer. exit out and close the tab!

look at the content of the video. if the clip itself deals with the scary or supernatural, like a film about ghosts, you can’t be certain. be careful, and exit the tab if the content seems triggering. pause the video and forward all the way to the end. If everything is good feel free to watch. if a frame with a scary picture comes up, close the tab immediately.

if the video shows a room or picture, and invites you to “find what’s wrong in the picture”, or “find _____”, close the window immediately! 

there’s a new trend going on where videos describing people reacting to screamers are actually screamers themselves. if you suspect this, scroll down and see the comments. if the maker of the video disabled comments to purposely lead viewers to believe the video is genuine, scroll down just enough to see the video time, so you don’t see the video itself. Turn the volume down, just in case it is a screamer, and if the video plays out and there’s no scream, it’s safe to watch.

check the time on the video. if it’s suspiciously short, exit the tab.

look at the related or recommended videos. if any of them fit the above, the video is a screamer.

stay safe this halloween season!

[jgiowrgklvbnjdhopvsklvbkldf-dea]

also there’s another one that you forgot which i usually look for first when it comes to wondering if a video is a screamer or not, and that is checking the likes to dislikes ratio. if the dislikes are an abundant amount, close the tab. this is a fairly common one that i usually remember.

[paintmixing]

reblogging as a way to help you guys find screamer-free videos! we won’t be posting any screamers here this halloween 💜 - mod robot

[ddlg-is-wrong]

Stay safe!! I personally love jump scares, but once when I was eight, I showed “The Scary Maze Game” to my friend, who literally had a panic attack, and I am scarred for life with the guilt from that episode. It seems like it’s a in good fun, but it really hurts some people, so please be careful!

[sylveonagainstddlg-deactivated2]

these always give me panic attacks thank you !!

[the-only-way-out-is-through]

PSA, ‘cause people can be pricks.

[the-host-protection-squad]

You all need to know this; and if you’re an asshole who purposely does stuff to make people have a panic attack; you can get the fuck off of this blog.

[killthemwithkyman]

Thank you for these! Halloween time is my favorite time of year, but screamers give me horrible panic attacks

[funnyrobot]

safety first.

[violetpng]

convenient timing to share something from discord earlier: “Warning: if u see a video by Three Ply Chord called Spooky Scary Skeletons HD, it’s a screamer  Right as the song is about to start there’s a bunch of bass boosted screamers with horrid imagery”

[nicoleting]

Psa bc I was the one that got caught by that screamer and I don’t want anyone else to

[epilepsysupport]

They grow up so fast.

[the-tiny-dragon]

Hey if any of you guys have epilepsy hmu I’d love to have some friends who are epileptic too!

[fuckepilepsy]

Consider these fine folks:

@the-twitchy-life @justepilepsy @dont-look-at-the-lights @purplesmartass @beppilepsy @letterstomyepilepsy @brainbuffering @epilepsysupport

There’s a lot more where that came from.  Everyone say hello if you are so inclined!

[epilepsysupport]

How do you all fill in the gaps during class when you miss things? I miss huge gaps of lectures from my seizures (and dissociation) and I’m really trying to not fail this semester.

[epilepsysupport]

Hi there, I was unable to find your faq so apologies if mine isnt appropriate. Ive been looking everywhere for a medic alert bracelet. But they are ridiculously expensive. They seem like a must if a person is epileptic. What are ypur thoughts? And could ypu recommend a place to purchase them?

(submitted by @lolachubs)

Before I dive in, this response will be US centric, as that’s where I am from and I don’t know where you’re from. Things may be different in your country if you are living somewhere else, so take it with a grain of salt.

I’d recommend medicalert.org, that’s where I got mine (which I conveniently lost while camping Five Years Ago and haven’t bothered to replace). Some are more expensive than others. If you get yours with gold or jewels or a fancy decoration, it will be more pricey. For example, a standard or classic medical alert bracelet from medicalert.org costs about $20, but one made out of gold or silver can be as high as $1,175 (yikes) or as low as $80 (less yikes, but still yikes). You’ll want to look for bracelets made out of stainless steel or another type of inexpensive metal (so, definitely not silver or gold). If you’re looking for cheaper, you can also get them at places like Walmart, but you’ll then have to take them somewhere to get engraved (which will be pricey), or you’ll be writing your medical conditions on some paper and sticking it in a transparent slot, which won’t last you as long. It is an investment, but in the end, it’s worth it, because ambulances and hospital bills are quite more expensive.

Note - if you are seizure free and are able to drive, don’t wear your alert bracelet unless your doctor instructs otherwise. If you get in a big accident and are unconscious and the paramedics or police find you’re wearing that bracelet, you may be held responsible for the accident even if it was not your fault, as it will be assumed the accident was caused by you seizing at the wheel. I was informed of this by my both my former neurologist and my current one, so I assume both he and she have seen it happen. I’m assuming you want one because you’re actively having seizures and so this information might not be important to you, but I’m putting it out there for my other followers.

Also, just so you know, I have ask box closed because I’m not really able to answer the level of asks I was getting previously. Asking me something through the submission box is not ideal as it’s awkward to answer a question this way, you won’t be notified that I’ve answered it, and it’s also requiring me to answer a question when I’m not feeling well. I’m always happy to help so I am responding, but keep that in mind. Life has been taking a toll on me so I don’t have much energy for keeping up with the amount of asks this blog was getting before (although - I might be opening them again soon! So that’s exciting).

[epilepsysupport]

Of course my seizures start to get worse right as college starts.

[epilepsysupport]

Wow, one whole minute and ten seconds? Impressive.

[epilepsysupport]

Have any of you taken wellbutrin and did it lower your seizure threshold and give you migraines or am I having these issues for unrelated reasons.

[epilepsysupport]

Me after finding out I can't watch the new Incredibles movie because of the strobe lights scene.

[cozza-frenzy]

WARNING: THE INCREDIBLES 2  IS NOT EPILEPSY SAFE.

This is not a joke. I was at a first-night showing tonight, and my immediate thought was how disasterously unsafe this movie is for my photosensitive epilepic friends. @markingatlightspeed I’m tagging you with this specifically because I feel that this would be extremely dangerous for you to watch. There are multiple scenes in this movie with full-screen, black-and-white flashing strobe effects. They all happen without warning, and last anywhere between a few seconds to more than two minutes. In a darkened movie theater, this means the likelihood of a seizure could be VERY HIGH if you are sensitive to these effects. If you have photosensitive epilepsy or another disorder that is triggered by strobe lights, I would highly recommend you DO NOT SEE THE INCREDIBLES 2 IN THEATERS. Wait until the movie’s released on digital/Bluray, and you can watch it in a fully-lit room, with someone with you who will be able to help if the strobe effects do trigger a seizure. Please stay safe. UPDATE: After talking to some people who have loved ones with severe epilepsy, I would sadly have to recommend that you DO NOT SEE THIS MOVIE - PERIOD - IF YOU HAVE SEVERE SEIZURES WHEN EXPOSED TO STROBE EFFECTS. DO NOT PUT YOUR HEALTH AT RISK FOR A MOVIE. NO KIND OF MEDIA IS WORTH GAMBLING WITH YOUR LIFE. The scenes in which the flashing happens are MAJOR plot points and CANNOT be skipped. The one workaround I can suggest would be to find a version of the movie (when it’s released) with Audio Descriptions for the visually impaired. Watch it on your PC - turn the monitor OFF, but keep the audio going. If you have been disappointed by the creative decisions made by Disney-Pixar, please sign the petition created by @moviehealthcommunity for Disney to include a seizure warning for moviegoers and people who buy/rent the movie. It is unlikely they would edit these things out of the movie entirely - but there are nearly 20,000 notes on this post, and if 20,000 people asked them to consider people with epilepsy, it could mean they consider these things more carefully in the future. Thank you.

[epilepsysupport]

Someone told me I’m on too much psychiatric medication, like… I don’t know how to tell you that epileptics get depressed too.

[epilepsysupport]

GOD, that reminds me though. I was recently seeing this psychologist for insomnia and my last appointment he just... explained to me how seizures work like I'm stupid. Yes, I know seizures impact memory. I know what a seizure feels like. I would like to kindly remind you I've been epileptic Since Birth.

He then told me I don't have dissociative amnesia and am just having seizures as if my last EEG wasn't totally clear. But right I guess epileptics can't have PTSD either. It's one or the other guys, choose wisely.

[epilepsysupport]

Someone told me I'm on too much psychiatric medication, like... I don't know how to tell you that epileptics get depressed too.