myepilepsydiary

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only 10 days until PURPLE DAY

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#MyEpilepsyStory Dani Anything you struggle with?  There will be days where I get super down on myself because I don't have a J-O-B anymore. I was raised by my Dad who always taught me that having a J-O-B is the most important thing you will have in your life, but when seizures started taking over my body at the work place, it just became very unsafe, and for those who haven't been around epilepsy (or have) it can be very frightening. After so many seizures I had to be real with myself and say goodbye to having a J-O-B, as a server.   How you overcame? When I had to leave my job I was terrified, but my fiancé, who I also call my strength reminds me, a job does not define who I am it is just what I do. A job just brings our family money, but there are other ways I can do that I just need to change to an entrepreneurial mindset.  How long have you been diagnosed with epilepsy?  7 years now, the doctors diagnosed me at 22. At the time I was having so many Grand Mal clusters and needing to go to the emergency so much the nurses knew us right away...not something you want! What makes you strong?  My fiancé! I actually say this quite often epilepsy is so hard on me, but I truly believe that it is harder for my loved ones to see me in pain and not be able to do anything. With epilepsy we can look perfect on the outside and feel like we want to die on the inside! I have days where I throw up when I stand up this happens so often we have a bowl named, Chunk that hangs with me when I'm sick. My family especially fiancé is always so understanding and helpful with everything. Trust me there are many things we've had to cancel, miss out on, or just say, "maybe that's not a good idea" because of me. We have been together 12 years, and I truly believe I found my Disney prince.  What makes you get up and fight?  I understand my life isn't perfect, but I look at it and say take away my epilepsy I have a beautiful life...why let my sickness win? No thanks I will not let epilepsy hijack my life, I want to live it so I have a beautiful memories to look back on when I'm old, grey, and out of my mind :) . What is your profession? I'm a full time dogma while studying real estate.  What is my Purple Power? With epilepsy you have to really dig deep and find your positivity power! I have super hard days, but I take my deep breath and just remember all the amazing things that I do have in my life. Epilepsy isn't going anywhere right now, but I definitely believe the days are much easier when I put my smile on my face and have a positive mindset. 

[myepilepsydiary]

#myepilepsystory @justamadlad In high school I was having a battle with depression so I was put on Abilify. The doctor did not believe it was working so he took me off it, cold turkey. The next day my mom was dying my hair, and within a blink of my eye I was on the bathroom floor. When I woke up, paramedics were in the house. I remember asking my mom why her friends were there. I wasn’t aware I had a grand mal seizure. ° ° ° There is no history of any sort of epilepsy in my family, so all of my relatives were very confused. I was put on trileptal, lamictal, and topamax simultaneously with other medications rapidly being changed since my medication was primarily prescribed by a psychiatrist. I went to a neurologist in the city because my mom literally had no clue what to do. I don’t even remember seeing him all that often. Maybe 3 or 4 times. I was believed to be seizure free for over a year. Recently, I started going to a neurologist again. They gave me EEG tests and said I have been having “mini seizures” this whole time. My family was really confused just by the grand mal seizures, so hearing that I’m now having a different type they had a hard time accepting/believing it. I don’t know what kind of seizures they are yet. (which is nothing new, I never had a point in life where I knew actual details about what was going on with me). I go next month and hopefully I find out. But I’m glad I started going to the neurologist again. ° ° ° However, my long term memory is gone and I almost have no short term memory. I’m 19 and don’t remember even remember things as recent as high school. Just minor details and fuzzy memories of important events (like my first seizure, but you might’ve noticed I don’t recall my exact age, the year, or grade). The doctor said it could be from my epilepsy. I was also recently put on kepra, I hope to keep on track with taking it and see where that leads me on improvement. (I apologize I didn’t realize this would be this long of a story)

[myepilepsydiary]

#myepilepsystory Leighton Milton @leighton_milton Click link in bio for Leighton's story.. He talks about the brain tumor, which resulted into him having a epilepsy, taking about epilepsy medicine, & so much more. ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy#lymedisease #health #epilepsyvideo #youtubevideo#education

[myepilepsydiary]

Just a friendly reminder!! Gather your friends, family, & colleagues to decorate some pumpkins for #EpilepsyAwareness painting #purplepumpkinproject day !!! PAINTING PURPLE PUMPKINS PROJECT DAY IS OCT. 20!! Have a purple Halloween....! ° ° ° ° ° ° #seizure #seizuredisorders #seizuredisorder #epilepsy #epileptic #epilepsydisorder #epilepsyawareness #neurology #epilepsyfoundation #blogger #nolablogger #disability #disabilities #disorder #purplepower #absentseizures #seizurefree #dizzy #dizzyspells#aura #LivingWithEpilepsy #myepilepsystory #purplepumpkinproject

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#myepilepsystory# Aubrey Winkie @aubreys.lyme.journey When did you start having epilepsy? I was first diagnosed with epilepsy in high school. I had two grand mal seizures during the night. Apparently my cat woke my mom up and she went into my room to find me unconscious with blue lips. I was rushed to the ER and then sent an hour and a half away to a different hospital. This wasn’t the first time I had a seizure. I had been having partial seizures for a year and a half prior but doctors told me it was just acid reflux because the aura I would get before one involved a bad taste in my mouth. Once we found the right medicine my seizures were well controlled. Any break through seizures? Right before going to college I underwent more testing and I was told that I had grown out of my epilepsy. A few years later I contracted Lyme disease and my seizures came back. I was told that I should have never been taken off of anti-seizure medicine and you can’t grow out of epilepsy (I’m still not sure what is true). I started having partial seizures again and this time they weren’t controlled by medicine. How dod you try to the seizures? We tried so many different kinds. As my Lyme disease got worse so did my seizures. I would get clusters of them and they wouldn’t stop until I fell asleep. I was lucky that they were only partial seizures but sometimes I think there is a misconception about partial seizures. Explain what a partial seizure is? Some people say well it's just like you are zoning out. This is not the case you are still conscious but you can’t move or talk. You feel disassociated from the world like someone just removed your soul. It is a terrible thing for anyone to have to go through. How is the relationship between you and epilepsy? I used to be embarrassed to tell anyone that I have epilepsy but now I talk about it freely to increase awareness about the disease. Even though my seizures aren’t controlled by medicine. I am still able to live a happy life.I have a service dog that is trained in seizure response tasks and helps me so much. ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy#lymedisease #health

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[myepilepsydiary]

#MyEpilepsyStory : Christyna (@whatsa.mexiverdean) When were you diagnosed with epilepsy? Well, I was diagnosed at 14. I started having grand mal seizures out of no where, so everyone was pretty freaked out. No one in my fam has/had epilepsy- or even a seizure for that matter so it was really a time of concern. After my first one, I just kept having more & more so I had to find a medication that would control them. How was the adjustment? It was hard for me since I was a super active teen. I loved being involved in any & everything I could get my hands on- sports, theater, outdoorsy activitieslike hiking/climbing, swimming were my favs but all that was put to rest bc I never knew if I was just going to fall out into another seizure. What did you struggle with? So it's been 14 years now since I've been diagnosed, and I've had alot of bumps throughout the way. I struggled with finding the right meds for me, I couldn't get a license or a job when I wanted to. I had to wait until I was seizing less often. Around 18, they were more controllable thanks for the meds, so I was able to get a license & job....For the FULL STORY, click link in bio ! And please like page!! 💜💜💜

[myepilepsydiary]

repost via @instarepost20 from @angels_of_epilepsy Happy #PURPLEFriday! 💜 May you all have a safe, fantastic weekend! And to the amazing #EpilepsyChampions, we pray that's it's #SeizureFree & many days to come. 😀Please help us #SpreadEpilepsyAwareness & support the many #LivingWithEpilepsy - #seizures! #AngelsOfEpilepsy #EpilepsyLivesMatter #EpilepsyAwareness #EpilepsyOutreach #SupportEpilepsyAwareness #EpilepsyLivesMatter #Advocate4Epilepsy #seizures #Neurology #Neurologist #Neuro #NeuroDoctors #doctors #medical #Purple #SeizureDisorder #SaveLives #HelpSaveLives #SeizuresSuck #CURE4EPILEPSY #CureForEpilepsy 💜 #charity #donate #sponsorship #partnership #instarepost20

[myepilepsydiary]

Very accurate. When you are pre-seizure, during a seizure, or post-seizure-there is no thought process! Here is what you do during and post seizure-if someone you know has epilepsy. ****************************************************** How to help during a seizure °Protect the person from injury. °Keep him or her from falling if you can, or try to guide the person gently to the floor. °Try to move furniture or other objects that might injure the person during the seizure. °If the person is having a seizure and is on the ground when you arrive, try to position the person on his or her side so that fluid can leak out of the mouth. But be careful not to apply too much pressure to the person's body. °Do not force anything, including your fingers, into the person's mouth.Do not try to hold down the person. °This can cause injury, such as a dislocated shoulder ****************************************************** How to help after a seizure °Check the person for injuries. °If you could not turn the person onto his or her side during the seizure, do so when the seizure ends and the person is more relaxed. °If the person is having trouble breathing, use your finger to gently clear his or her mouth of any vomit or saliva. If this does not work, call for emergency help. °Loosen tight clothing around the person's neck and waist. °Provide a safe area where the person can rest. °Do not offer anything to eat or drink until the person is fully awake and alert. °Stay with the person until he or she is awake and familiar with the surroundings. °Most people will be sleepy or confused after a seizure. ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy#friendswithepilepsy #withseizures#familywithseizures

[myepilepsydiary]

Dance to the beat of your own drum. ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy

[myepilepsydiary]

#MyEpilepsyStory : Angelika (@fishadventures17) When were you diagnosed with epilepsy? I was diagnosed with epilepsy when I was a year old, so all my life know I am a adult living with epilepsy. How do you stay strong, when you feel tired? I believe that my family, friends, and God helps me stay strong. I have a great support team. That I can go to for anything. They are always there to help me! What makes you get up everyday and enjoy life? What helps me get up everyday is knowing that God is always with me! My friends and family help me. And there is always new day! How do you like your seizure medicine? The seizure medicine I am on know is ok I just don't like the side effects it makes me feel sick and tired. What do you enjoy? I enjoy blogging and sharing my story on how I live with epilepsy. I also enjoy spending time with family and friends. Whats your purple power? My purple power would be sharing my story so everyone knows what epilepsy is. Awareness? This Halloween I am spending epilepsy awareness by having my family and friends paint a pumpkin purple for epilepsy #purplepumpkinproject. I hope people will join me as I spread epilepsy awareness.There are times I feel left out because I can't do everything my sisters and friends can do. It does get frustrating but I am thankful for the things I can do and I try not to think of the things I can't do. -Angelika. ° ° Check out her blog! www.fishadvertures17.blogspot.com ° ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy

[myepilepsydiary]

Take care of yourselves...With everything that's going on today. Prayers go out to the people in Mexico, Florida, & the Caribbean islands. ° ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy

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[myepilepsydiary]

Sept. 27, 2017 #MyEpilepsyStory : Rob Cucuzzella(@robcucuzzella) What keeps me going? Idk what keeps me going? I hate pills - I hate the side effects - Its the hardest challenge of my life. When did you start having seizures? They only started 10 years ago to the date almost 09/08/07. Crazy, I was in Peru visiting the pyramids. I was in the ocean and got tumbled underwater hit my head. Then...I WOKE UP IN E.R. - A WEEK LATER IS WHEN THE SEIZURES STARTED... Have you been seizure free? YES! I HAVE BEEN SEIZURE FREE FOR THE LAST 3 YEARS NOW THANKS TO MY NEUROLOGIST. Check out his epilepsy #e-store (link in bio) and his website www.epilepsyinfo4u.com ° ° ° ° #disorders #disorders#helpfulinformation #aura#aura #livingwithepilepsy

[myepilepsydiary]

#MyEpilepsyStory: Derra Howard (@derrahoward)

I want tell you guys about my struggles with epilepsy.

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When did I start having epilepsy?

At the age of 9, I had my first seizure. I was at school, in the snack line. It was like I was walking into a dark tunnel and that's all I remember.Then, I woke up in the hospital.

Loss time?

Having epilepsy, it's like I literally have loss time. These are moments in my life that I could be walking or doing things that I thought about doing prior to the seizure. The seizures would come and I can't control it. I'm just in it.

What is epilepsy?

Epilepsy is the fourth most common neurological disorder and affects people of all ages. Epilepsy means the same thing as "seizure disorders." So yea, it's the same thing. lol. Epilepsy is a condition with a wide range of seizure types and differs from person-to-person.

I've been having epilepsy for over 20 years. I wasn't one to yell out and say "hey I have seizures!" lol. But if I had one, then you knew I had one. I tried to be normal. But my normal is a little different. It's been different since the age of nine. I've been on medicine since 9. My medicine makes me tired, drained, & various other side effects.

What triggers your seizures?

I know STRESS definitely can bring on a seizure.

What's my purple super power because of epilepsy? And why?

My faith in God. Even when I'm not with God, He is with me. In 2010, I had a seizure while driving. I wasn't feeling well before I got on the road. I prayed. All I remember stopping at the stop sign at the end of my street. I woke up in the ambulance. In my seizure state, I turned left and drove down the street across a 4 lane highway. Then I coasted in someone's driveway and tapped their vehicle. They saw a car in their driveway. And called 911. I nor their vehicle had a scratch. That was only God.

What's one thing I have learned?

Having seizures/epilepsy may be apart of my life and that's it. As someone who has struggled from time to time, my circle matters a lot. Know your circle.

What caused my epilepsy?

Well, it's unknown for me. °

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#nolablogger #disorders #disorders#helpfulinformation #aura#aura