epilepsysucks Photos & Videos

25 minutes ago

3/23 “I don’t let one word define me” That’s the spirit! Being a wife, mom, daughter...etc she still stands super strong! Keep it up Jess 💪💜 . . . . Epilepsy has effected me by I see a neurologist & an epileptologist on a regular basis. Due to my seizures not being controlled, I’ve had my right temporal lobe removed twice. One surgery resulted in a stroke & one was successful. I’m currently taking two medications & seizures. Yes. I am epileptic, but I don’t let one word define me. I’m a wife, mother, daughter, etc....

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35 minutes ago

As Sean was taking this beautiful old girl for a walk tonight he began to have a seizure. He started involuntarily running down a hill towards the woods. Normally, Athena would be all for something like this because, even though she’s nearing 11 she still acts more like she’s 4. But this time she put on the brakes, making Sean stop too. She then turned him around and started running toward home, forcing him to go with her. She got him safely across the street and in front of our house where he began to come out of his seizure. Although she is not trained to act when Sean has a seizure, she clearly knew that something was wrong and took action. We truly don’t deserve dogs. * * * #DogsOfInstagram #Athena #GoddessOfWisdom #GermanShorthairedPointer #Epilepsy #FrontalLobeEpilepsy #ComplexPartialSeizures #EpilepsySucks

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1 hour ago

Who's pumped about #purpleday2019 ?? Please help us make a difference by sharing and talking about International Epilepsy Awareness Day on March 26. Can you share with us how you've been fundraising about Purple Day? We'd love to hear from you! #purpleday #countdown #EpilepsyActionAus

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6 hours ago

Happy Saturday evening peeps! Has anyone else been looking forward to the warmer weather? I can't wait to get outside for barbecues and fun with our friends and family. Have you gotten warmer weather yet where you live? Let me know in the comments!

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8 hours ago

Not much beats a baby Elf hugging her bestest big sister. #nationalpuppyday

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21 hours ago

Let's change the world on Purple Day, March 26th! Abby got involved in Purple Day last year by selling merchandise in her local community. Just like Abby you can join our battle against Epilepsy by simply clicking the link in our bio.

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1 day ago

3/22 All the way from Sweden meet Mr.Oskar. One guy who is positive at all time of the day. Stay positive Oskar 💪💜 . . . . Greetings from Sweden my name is Oskar, im turning 20 in less then a month and i have had absence siezures since i was 16 but i wasnt diagnosed untill i was 19 after i began experiencing myclonic and tonic-clonic siezures, something wich still haunts me today. Luckily hope has always been on my side, im a musician and The day after i got home from the hospital i was accepted to study jazz at a folkhögskola and my year has despite The epilepsy been The best throughout my life.But it did mean new challanges, information about epilepsy isnt publicly avalble so ive had to bee my doorms guide on how to help me, some have taken my advice some have not, The low-point in dorm life with epilepsy came when someone pulled The firealam at 1:30 am, luckily my roomate is awesome and helped me to a safe place. Its been a hawowing journy and even though i no longer can drive cars and barley be in a kittchen i know that if i jeep playing my sax everything will work out one day! May hope be one The side of all fighters out there, whatever that fight might be against!

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1 day ago

I feel so helpless and so small. Watching her get control, well what we consider control, and watch her gain skills I had lost hope of her gaining. Then I can only sit and watch it be ripped all away from her. Ripped away from her by what most people say is just “a little shaking”. A 45second absence generalized into a 6 minute tonic clonic. Not even 5 minutes later she fell into a Dacrystic complex partial lasting about 3 minutes all ending in a hemiclonic lasting a minute give or take. Rescue given and all seemed as well as expected. She was up and walking just a bit wobbly. She was whiny but after seizures that’s common for her. She didn’t have the motor skills to use ASL so she was very frustrated as she couldn’t even get a single word out. I got her distracted to calm her breathing, her oxygen was fine, but her breathing was labored. She ended up having an asthma attack that caused a short simple partial. Between needing to get her a breathing treatment and all the seizures and me frantically on the phone with her neurologist she was very upset. After the breathing treatment she cried herself to sleep. She slept for about an hour and she’s talking a little bit but seems to have lost a lot of words. Her oxygen has maintained and no signs of any hard seizures. I hate this we get more days that are great (all short “easy” seizures/no grand mals or no convulsive status’) and we all get our footing. Then all of the sudden Dravet rips the rug from under us all over again. 2 steps forward 10 steps back. Yet she never gives up the fight. For her I’ll never back down either. This mama is struggling to keep my sanity and feel guilty for wanting/needing a break. I know I’ll never get one nor do I deserve one. I know I’m supposed to want to be with my girls 24/7 and never need a break because I’m expecting to do it all but I am failing at doing so. Video was 30 min before this all. Picture after it all. #fuckdravet #thisisdravet #leynabug #myhero #epilepsysucks #dravetsucks

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1 day ago

4 days to go till Purple Day... Is your office going Purple?? We want to do a big shout out to all our supporters for getting their offices involved in our battle against Epilepsy! Morning teas, wearing purple days, raffles... there are actually lots of fun ways to celebrate Purple Day with your colleagues. We’d LOVE to hear what your office is up to this year for #purpleday2019.

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2 days ago

Get your weekend ready for working out, hikes, gym, yard work and maybe the lake? Let our Ready and Wellness Products help you with preventive and post pain! Ready and Well disposable vape pens for pain and anxiety! Also our Green Garden Tinctures are 30%!

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2 days ago

3/21 “try and stay positive and if you get bullied stay strong”-Libbie! She is a super strong young lady and I for one admire her attitude! Stay positive and don’t let the bullies get to you 💪💜 . . . . Hello, so my name is Libbie I’ve been diagnosed with epilepsy since I was 7, I have 4 types of seizures. Absence, grand mal, clonic, and atonic, and when I was 8 years old I lost my memory from a bad seizure. And I had to move to a special needs school to get my memory back, I got it back but I don’t know a lot of things. I am 13 years old and I am very brave. I have been strong as I can be through everything that has happened. I only really have one type of seizure now and it’s the absence. And I moved to a different school after I got my memory back and I got mocked and bullied for having special needs. If you are going through what I went through, try and stay positive and if you get bullied stay strong💜

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3 days ago

3/20 “but that’s not gonna stop me from living my life” Yo Abby well said!!! A teenage girl who I am sure every teenager can relate too! I know I can. Stay positive and fight on warrior💪💜 . . . . I was diagnosed at age 14 one year after I car accident. When I figured out my first neurologist allowed me to drive.. it was all new to my family and I so we went for it. Later on I turned 15 and got a second opinion. Hearing the words I could never play sports again made me depressed. He soon suggested a second opinion. My new neurologist didn’t not allow me to drive which made perfect sense. Later on they started to get more aggressive and life threatening. They put me on Onfi and it started to help a little bit. After week long EEGs I had a few clear EEGs. Almost to 16 I wasn’t 6 months free. I thought there was no point into doing anything because all my friends could stay out later than me, go to school dances, and have fun times. At age 16 I finally just wanted to give up. With help of my community, friends, and family I got through it. Now I’m 17 taking 9 pills a day not able to drive but that’s not gonna stop me from living my life.

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4 days ago

3/19 This is Kara -my older sister She was there when I had my first seizure at age 10 and has been helping me ever since. I am forever thankful for her fast thinking and good heart💜 Love you😚 . . . . My story to tell: My sister has been dealing with epilepsy for many years and her seizures have been triggered by various causes throughout the years. I’ve become watchful for some of these especially whenever something like a bright flashing light happens in a movie or somewhere around me. I immediately tense up and my mind jumps to being ready to protect and save mode even when I know she isn’t with me.

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4 days ago

3/18 Wow! Jason is a fighter! I’ve never read of a story quite like that. Keep on fighting Jason 💪💜 . . . . Well not much to tell if was working on a normal day in November 1991 then all of sudden the Scaffolding as was on Collapsed 35ft up the next thing I was in a Daze and I could here something run behind me as I lay on the floor, I had Just Cracked my head open, Just the start of my problems, that's how I got Epilepsy through a head injury 💜💜💜

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6 days ago

3/17 Ruby! Now this is one warrior who has put everything into the fight! And now she is “Teens Speak Up” representative for Nebraska. That’s the way to do it! Keep fighting 💪💜 . . . . I’m Ruby and I was diagnosed with epilepsy at the age of 10. My mom noticed I was having absence seizures for the first time when I was stirring a boiling pot and just stopped. We had an EEG and I was diagnosed. I had my first grand mal seizure about 6 months later. I was having around 30 absence seizures every morning and the occasional grand mal while on 28 pills a day. I then had the VNS placed and exactly 6 months later, I became seizure free. I was seizure free for 2 1/2 years and off all meds for nearly a year. This November I started having seizures again, both absence and grand mal. I am on meds again and am trying to regain control. I am 14 now and am proud to say that I have been chosen as the Teens Speak Up representative for Nebraska. I don’t think very many people realize that there are other struggles besides seizures that epileptics face. I am on a mission to bring awareness to epilepsy one step at a time.

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