enduringepilepsy

[enduringepilepsy]

Hi, I was diagnosed with epilepsy and I always wondered if other people with epilepsy have experienced this feeling or necessity to crack knuckles and bones or this itchiness that’s like inside under your skin? I kinda wondered if it’s more a symptom of anxiety and stress or if it’s bc of the accumulated energy on the brain maybe?

Hi there! Thanks for waiting.

There may be crossover with epileptics who do this and those who have anxiety, do it to relieve stress, or those who are neurodivergent and do it because they like how it feels. I would not know about the accumulated energy. This would be a good question for a neurologist who specializes in epilepsy.

I would ask myself this: did you do this before you started having seizures? If yes, then I would attribute this more to anxiety, stress, and/or neurodivergence. I know I tended to do it before I ever had seizures because I liked how it felt, and I am neurodivergent (undiagnosed ADHD and/or autism). I don't do it much anymore because of my fibromyalgia.

If other epileptics want to weigh in, I'd love to know your thoughts!

Disclaimer: I am not a medical professional. I'm an epileptic with a tumblr.

-Aly

[enduringepilepsy]

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[enduringepilepsy]

Hello! I'm writing a book where one of the characters has epilepsy, and I was wondering if you had any resources/tips so that I can be as accurate as possible. I really want to portray it correctly, and I don't know much about epilepsy, so anything helps. Thank you! :)

Apologies for not answering sooner! I got a tad busy. As a writer and epileptic, I am so glad you asked this question. I’m going to include my tips first, and then some other blogs and websites that may be able to offer some other tips, or information.

1. Know that there are many types of seizure disorders. Not everyone has tonic-clonic (grand mal) seizures. When someone hears the word “epilepsy”, that tends to be the image that comes into mind. Research the various types of seizure disorders, what they look like, how they’re diagnosed, and how they’re treated. Though, that leads me to my second point.

2. A lot of times, seizure disorder patients respond to medication differently. The first medication they try may not even be the one they get to stick with. For me, Lamictal was the first medication prescribed to me, and it did work until I had an allergic reaction it. What I found helped me was being in a community of other people who suffered from seizure disorders, whether that was on tumblr or on Facebook (I am on both). Reddit may have them as well, but since I don’t frequent that website, my followers may have more information. Seeing anecdotes from other epileptics helps put the reality of seizure disorders into light, and what we have to deal with on a daily basis.

3. Depending on location and time period, epilepsy has a negative stigma attached to it, and is not treated with the most care. Stigma against epilepsy still exists today depending on the place, community, culture, and other factors. Pick the setting of your book carefully.

4. I likely do not have to say this, but your character is not just their epilepsy. Our lives may feel like it at times, but our illnesses are not all that there is about us. Your character’s epilepsy should not be the main trait that defines them, or who they are. 

5. In regards to writing the seizures themselves I would talk to other epileptics to see what their seizures feel like, and ask them to describe them. Each person experiences seizures differently, especially depending on the type, and whether or not they feel an aura. 

For me, as a person who experienced myoclonic seizures, they’re short, and I had no aura. One minute, I could be talking. Then, my eyes glaze over, both of my arms jolt (and, if I’m standing, my legs will collapse from under me), and it will happen in a second. A couple of times, I will have the seizure in the middle of talking, and continue the conversation before pausing, and realizing what happened. Other times, I will stop, and forget what I said before. If I’m not doing anything, and/or sitting down, my seizures can be so slight that I can’t even notice them. It will look like my hands, or arms, just twitch. I’ll blank out for that second. Lord forbid if I was holding something. The seizures always came in a series as well. I would never just have one myoclonic seizure; I had one every 2-5 minutes.

Again, each experience is different.

--

There are also questions that need to be answered about your character if they are epileptic (note: this list is not the be-all-end-all; I just came up with it, and it can be added to as you like):

1. How long have they had it?2. Have they been treated for it? If so, how long?3. What medication are they on, if any?4. If they’re on medication, what side-effects do they experience, and how do they effect the character’s daily life?5. What kind of relationship do they have with their neurologist, if any? How often do they see them?6. What kind of seizures do they have?7. Are they photosensitive? (Note: Not all epileptics are)8. Does their family know about their epilepsy? If so, what are their thoughts? Do they treat them differently?

These are just some questions I would consider if I was writing the character.

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Links:

1. The History and Stigma of Epilepsy (2003) - It talks about the history of epilepsy, the stigma in the past and present, and recommendations. Only 2-3 pages with sources.2. Highlights in the History of Epilepsy: The Last 200 Years - Rather lengthy, but an in-depth study with sources. 3. Epilepsy Foundation - Great website for learning all about epilepsy.4. Jamais Vu by Floid Rios - Author details their life with epilepsy. I personally read this one, and it was a good read. 5. The Sacred Disease: My Life with Epilepsy by Kristin Seaborg, M.D. - Author and physician talks about her life with epilepsy. I have not read it, but the reviews on Amazon are all great.

Other Blogs:

@epilepsysupport - Epilepsy blog.@promptsandpointers - Writing blog.@fixyourwritinghabits - Writing blog. They also have a list of other writing blogs and resources. 

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I do believe that’s everything that I have as far as advice and tips goes. If my followers, or any of these other blogs, have anything else to give for advice, I can add it to this post/blog as well. I really hope this helps with your writing, and I look forward to reading your book in the future! We need more characters with epilepsy in books.

[enduringepilepsy]

Hey all!

I just realized that the theme for this blog is broken. I’ll be looking to replace it with a working theme as soon as I possibly can. In the meantime, do you have any specifics you like for a theme? Colors? Brightness? If you do, just reply to this post so I can factor that in when I start customization on a new one.

[enduringepilepsy]

I want to post something on my blog that may trigger epilepsy. How should I tag these posts to prevent hurting someone?

First of all, it’s really great that you’re being considerate of your followers who may have photosensitive epilepsy. That shows a lot of thought, and you’re being considerate towards them. In my opinion, it largely depends on who your followers are. I personally like to ask my followers in advance what tags they blacklist so their photosensitive epilepsy isn’t triggered. I know I blacklist #epilepsy warning and #seizure warning on mine. Others blacklist #flashy as well.

You want to avoid tagging just #epilepsy. We generally like using epilepsy to communicate with each other.

If my followers want to add what tags they use, feel free to reply or reblog this.

[enduringepilepsy]

We're Back!

I've decided to bring this blog back out of the depths of tumblr. It's been a while, but somehow, there are still a good bunch of you following. Since I didn't get around to saying it earlier, welcome to Enduring Epilepsy! 

So, first things first, what do you want to see? Epilepsy facts? Stories? Advice? I'd love to know so we can get this blog running again. Also, I would like to commission someone for an icon for this blog. I'm tired of this blank thing. 

Anyway, hi again! Let me know if I can help with anything, or if you have any ideas or suggestions about where this blog should go.

[enduringepilepsy]

XXXIV - Abyss

First, thanks for all the positive feedback on the new theme! No one’s found any errors yet, so hopefully it stays that way. Will finish updating the side pages this week. And here’s my first chance to properly show off the new theme posts!

A new theme to share! This one is actually super, super simple and was originally created for the Theme Hunter Contest. The main feature is the drop down lists so you can now add loads of links even where there’s a fixed (or in this case, sticky) sidebar.

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Download the codes under the read more.

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[enduringepilepsy]

Hi, I run a blog called mental-health-advice. We help with every mental health related issues like self harm, eating disorders or relationship, gender and sexuality issues. We created a live chat and have dozens of pages. It would really really mean the world to us if you could follow/post this for your followers, so we can help even more people. But, make sure that if you do follow, it is on mental-health-advice rather than this (my admin blog) Thanks in advance, Dani :)

Since this is a side-blog, I'll definitely post this. I've been following mental-health-advice on my personal for quite a while. I'd love to be a part of that as well when I can. 

[enduringepilepsy]

I'm 19 & a girl. My epilepsy was diagnosed when I was 14. It's rare bc my fits have come once in 3 yrs. When one comes, it lasts about minute. An awful headache comes afterwards. I'm scared people think me gross & I won't get a bf. Help? ( ; _ ; )

First things first, is there anything that you're doing for your epilepsy? That's one of my primary concerns if the fits are still coming. With some seizures, obviously, they can't be controlled no matter what you can do. I only ask this because it's a safety concern of mine. I would recommend talking to your doctor about them. 

Second, epilepsy is not going to prevent you from dating if you don't let it control you. Do not let another's perception of it become your own. If someone doesn't understand your epilepsy, that's one thing: it can then become your job to explain it to them, and be honest with them about it. Epilepsy is not something to be ashamed about. It's a neurological disorder. That's all it is. 

The minute you start thinking, "Oh no one will date me because of x," then you're doing a disservice to yourself. You're more than x (in this case, epilepsy). Don't let it define you. 

[enduringepilepsy]

Jamais Vu - Free Book W/Epileptic Protagonist

I had petit mal seizures as a child, and I’ve tried many times to write a book about my experiences with the drugs (Zarontin) and the impact epilepsy had on my childhood. I’m surprised that there are not more main characters with epilepsy.

My book Jamais Vu will be free until March 14. It’s currently Number 8 in Medical Fiction on Amazon. I would LOVE to bring awareness to this issue, and to my book.

Even if you don’t have a Kindle, Amazon has a free reader app you can download. I’m trying to get as many people as possible to download the book that way, but if someone wants to read it and is dead set against Amazon, they can send me a message.

My goals in writing the book are to reach other children/teens who might be going through something similar, but may not know what they’re experiencing is a side effect, and I also hope to reach adults who assume that drugs given by a doctor are by default “safe.”

Thank you for writing this blog. We need more blogs like this that aim not to cast judgment, but to bring awareness and open discussion.

I do apologize in my delay in posting this. I wanted to give your book the full read before I said anything. I was really impressed with this book, and the perspective it gave on childhood epilepsy, and what growing up with it was like. While it's far past March 14, I do suggest giving this book a read if you have the chance. 

[enduringepilepsy]

so for some ungodly reason tumblr staff decided it’d be a good idea to allow flashy gifs or incredibly bright images to be a background for the login screen. a lot of people i know are photosensitive and prone to headaches or other, worse things that can be caused by this. so naturally i wrote a small script to disable those completely. hopefully permanently.

you can find it here. you’ll need the browser extension/addon stylish for it to work, which you should be able to get from the website itself if i remember correctly. hope it helps someone o7

[enduringepilepsy]

A single switch dictates severity of epileptic seizures

A switch in the brain of people with epilepsy dictates whether their seizures will be relatively mild or lead to a dangerous and debilitating loss of consciousness, Yale researchers have found.

The study published April 11 in the journal Neurology showed that there was no gradation of impairment during seizures — subjects were either alert or totally unaware of their surroundings.

The existence of an “all or none” switch for consciousness surprised researchers, who expected to find different levels of awareness among those who experience focal seizures, or those localized to particular brain areas.

“During seizures patients may report a funny, fearful feeling, tingling in their arm or some quirk in their vision but are able to answer all our questions,” said Dr. Hal Blumenfeld, professor of neurology, neurobiology, and neurosurgery, and senior author of the study. “At other times — boom — all of a sudden they are in a daze, unable to respond to their environment.”

Blumenfeld said previous studies have shown that this switch rests in areas of the brain stem that play a role in waking and in paying attention to your surroundings. The findings suggest that existing drugs that treat narcolepsy or therapies like deep brain stimulation might help patients with intractable epilepsy.

“Our goal is to prevent seizures, but in a fifth to a quarter of people have seizures no matter what we do,” Blumenfeld said. “For them, therapies that would prevent loss of consciousness would greatly improve quality of life.”

[enduringepilepsy]

Four Years Seizure Free

I want to take a minute this morning and say something. This may or may not turn into a wall of text, but I’ll do my best to prevent that.

Today, March 20, 2014, marks my fourth year being seizure free. Every year, I take a minute to celebrate this awesome feeling. Not every epileptic has the privilege of having their seizures controlled—by medication, by surgery, or by any other means. I feel extremely fortunate that the third medication my neurologist put me on worked like a miracle drug: it stopped my seizures, and I don’t feel many side-effects at all. Keppra has been great to me. 

I also feel fortunate because it is an amazing feeling to not wake up every morning afraid. Every morning for the three years I had my seizures, I woke up terrified. What if I fall down the stairs again? (Yes, that did happen, and I was, again, lucky that I didn’t break anything) What if I fall in the shower? (And I did that a lot too) What if something happens to me while I’m at college? What if my seizures get worse and I start having full-body (tonic-clonic/grand-mal, whichever name you prefer) ones? My complex-partial seizures started out as just in my arms, but later on, my legs would go out from under me too. I seriously thought I was going to start having tonic-clonic seizures. What if I try to get a job, and I have a seizure while I’m on duty? Wouldn’t that make me a liability? Would they fire me for that? 

And then I thought this more often than I care to admit: What if my seizures kill me? 

Those three years with my seizures were the worst years of my life. I won’t hesitate to admit that I am still angry with my family for ignoring my seizures and trying to prevent me from seeing a doctor—and yes, I am serious on that one. When my fiance moved all the way from the west coast just to help me see a doctor, they made us jump through all these hoops to try and prove that my seizures were really just because I was lazy, or it was a muscle issue—it couldn’t possibly be neurological. I just spent too much time on the computer and didn’t get enough exercise. 

What I want other people to get out of my story: Don’t take your health for granted. Take care of yourself to the best of your ability, and don’t let anyone or anything stop you from doing that. That includes tumblr by the way—don’t use it as an excuse to not take care of yourself and your body. Sleep is important, yo. If you don’t let your body rest and repair yourself, your health will deteriorate. 

I don’t want anyone to live in the sort of fear I did. It was terrible. My epilepsy became my life, and it defined me. I didn’t apply for jobs because of my seizures, even with my parents pushing me to do so every second. I rarely went outside of the house except for college, and even then I was terrified of going in. I still remember crying on the way to Italian class because I had seizures during the drive there. I still remember being terrified by stairs, especially the ones in my own house. Living in fear is not the way to live. It’s restricting, 

Don’t let fear control your life. Don’t let your disease, disorder, or what have you be all that you are. I’m more than an epileptic. I’m a human being with all sorts of thoughts, abilities, and passions. Why should I just be limited to one definition?

Anyway, thank you for reading my story. I hope you all are having a wonderful morning, and I hope you have a great rest of your day! 

[enduringepilepsy]

I didn't see this until I was scrolling through my other blog's dash. First off, if you folks ever need any tips for writing, that has been my go-to blog for at least a year. They have a lot of tips for writing various scenarios, character types, how to avoid cliches, et cetera. 

I haven't read many books with epileptic characters, to be honest. I've seen epilepsy more in television shows or movies. One of the biggest misconceptions that I've seen through media is that there is only one type of epilepsy: tonic clonic (commonly known as grand mal) seizures. Epilepsy comes in many forms, and can come at different ages. 

With that being said, since I don't get to read as much as I used to, I'd like to turn the question to the followers of this blog: what misconceptions or cliches of epilepsy have you seen in media? 

To the one who submitted that question to thewritingcafe: Definitely feel free to come ask more questions! I'm not an expert on epilepsy, but I've done my fair share of research with it, and experience with it. The followers of this blog are also pretty awesome, and can help shed some light.

Hello there! I am writing a story in which my main character suffers from Epilepsy and I was wondering if you had any tips for writing characters like that without them being cliched? Thank you so much :)

There aren’t enough epileptic characters to name cliches. Your biggest issue would be misinformation and misconceptions, so start researching epilepsy and try to find some people around tumblr to talk to. Here is one blog to start you off.

[enduringepilepsy]

Important breakthrough in identifying the effect of epilepsy treatment

50 years after valproate was first discovered, research published today in the journal Neurobiology of Disease, reports how the drug works to block seizure progression.

Valproate (variously labelled worldwide as Epilim, Depacon, Depakene, Depakote, Orlept, Episenta, Orfiril, and Convulex) is one of the world’s most highly prescribed treatments for epilepsy. It was first discovered to be an effective treatment for epilepsy, by accident, in 1963 by a group of French scientists. In thousands of subsequent experiments, animals have been used to investigate how valproate blocks seizures, without success. Scientists from Royal Holloway and University College London have now identified how valproate blocks seizures in the brain, by using a simple amoeba.

“The discovery of how valproate blocks seizures, initially using the social amoeba Dictyostelium, and then replicated using accepted seizure models, highlights the successful use of non-animal testing in biomedical research,” said Professor Robin Williams from the School of Biological Sciences at Royal Holloway.

“Sodium valproate is one of the most effective antiepileptic drugs in many people with epilepsy, but its use has been limited by side-effects, in particular its effect in pregnant women on the unborn child,” said Professor Matthew Walker from the Institute of Neurology at University College London. “Understanding valproate’s mechanism of action is a first step to developing even more effective drugs that lack many of valproate’s side-effects.

“Our study also found that the decrease of a specific chemical in the brain at the start of the seizure causes even more seizure activity. This holds important implications for identifying underlying causes,” added Professor Williams.

[enduringepilepsy]

Epilepsy Facts!

Since this month is National Epilepsy Awareness Month, I’m going to try and post some facts everyday about it. I’m doing it on my Facebook, so I might as well do it here. I missed four days so far, so I’ll start with four facts for today.

1. Epilepsy affects 1% of the world’s population. 2. The most common types of seizures are generalized tonic clonic (grand mal) seizures, but they are not the only type! 3. The categories for seizures are generalized seizures, partial seizures, nonepileptic seizures, and Status Epilepticus. 4. Half of the time, or at least according to my former neurologist, the cause for epilepsy is unknown.

If there are any other facts that you want me to post, or if you have any questions about epilepsy, feel free to ask!

[enduringepilepsy]

just read your post re: adding epilepsy warnings to gifs. I was under the impression that tagging things "gif" and "gif warning" was appropriate for these purposes, but if it's more convenient/common/preferable for people to block something like "epilepsy warning" or "seizure warning," I will certainly add such tags. Just wondering if you knew of a particular trend or preference within the community.

I haven't been in the community as much as of late, but the most common tags that I've seen used is a combination of "gif" and "flashy" as epilepsy warnings. I tend to try and use "epilepsy warning" or "seizure warning" to be extra careful, but it truly depends on what everyone has set in their Tumblr Savior-- not sure if it's still common or not. In my opinion, it never hurts to ask your followers what they use so you're absolutely sure you will not trigger a seizure.

Thanks for the question!