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Your Story of Strength

Your Story of Strength

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Epilepsy is a very difficult condition that we as individuals, and as a community, have to manage and learn to overcome. EpilepsyU.com is gathering epilepsy stories to begin a page dedicated to sharing inspirational stories about overcoming epilepsy.

Please share your POSITIVE story in the comments below and please post a link(s) to any relevant pictures that we might want to include when we use these to create an epilepsy stories page. Even horrible stories can have positive effects on the people around and on the world at large. Please focus on the positives when writing your stories!

Your Story

Please use this form to submit your story to EpilepsyU! Your story will be read and proofread prior to posting to EpilepsyU.com/stories to eliminate any spam, adult or foul language not suitable for this family oriented site.
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50 Comments

  1. TIP: You can actually comment on this Facebook post with your story and it will post to the blog automatically within about 30 minutes. Only Comments and not Replies will post.

    Reply
    • hello My name is
      Christina Inscoe Gray….I am 41yrs old, Hometown is Pawtucket, RI…but i now Live in Lottsburg, Va…..I have Had Seziures for almost 14 1/2 yrs….the Picture i am sending you are one of me before my Frontal Lobendectomy on July 12, 2012, The Day of Surgery, then a Pic with my daughter 5 months after my surgery and last is me today!!!!…This year has been the first time My seziures have been under control….I take 3000mgs of Keppra and 60mgs of Cymbalta…..I have taken so many other Seziure Meds during the past years all that my body rejected so treating me has not been easy…I started having Seziures when i was 6 months pregnant with my daughter Sky who will be 14 in dec….and it has been a true rough road….they said I have about 20plus different kinds of seziure activity and other parts of my brain is affected…But I am stronger every day and fighting this fight…With my Family, Friends, Church and of course All OF YOU….I FEEL WELL SUPPORTED AND STRONGLY AND WHOLE HEARTEDLY SUPPORT AND ADVOCATE FOR ALL OF YOU….THANK YOU AND GOD BLESS
      AND YES WEARING PURPLE ALL MONTH SO FAR…AND SO IS MY DAUGHTER HER FRIENDS ETC…WE SHARED SHOES AND ARE LOOKING TO START A TEAM HERE MOMMAGRAY!!!
      LOVE YOU ALL
      CHRISTINA GRAY

  2. I sank into depression and lashed out with some wicked anger when my drivers license was taken away. I was having multiple seizures per week, the ‘big kind’ and had recently had one at a most inopportune time, tumbled down the stairs and was using a cane to get around due to injuring my hip. I felt like my life was falling apart.
    I started writing. I wrote down my anger, my sadness, my bitterness. I laughed at some of the things I wrote. For some reason, everything I was spilling onto the paper had a happy ending.
    I had a small stroke in 2003 around the time I was having multiple seizures and landed in the hospital over my birthday. I couldn’t write for awhile after this as my arm was messed up. I got angry again- my poor family!
    Sometimes anger is a jettison for change. I started contemplating ways to change my life. How to become ‘happy.’ I made a plan. I didn’t want the rest of my days to be ruled by doctor and hospital visits. I was sad and tired. Life was short and I wanted to live it. No, strike that- I wanted to live it HAPPY.
    My happiness didn’t happen overnight. I did a stop and start and stop again. I mulled over things to do.
    I finally decided to start running.
    I didn’t take off and run out the door. I didn’t join a running group. Nope, I was embarrassed and afraid of failure so I got up at 4am while my family was sleeping, slipped on some sweatpants and jogged in my kitchen for a few minutes each morning. I kept doing it increasing the time each day until I hit an hour. AN HOUR! Jogging in sweatpants in my kitchen. I started running laps. I pictured myself on a track. I sprinted and smiled and got out of breath and sweaty.
    Soon I snuck outside, still barefoot and in my sweatpants. It was awesome to run on the sidewalk. I felt so free in the wide-open space! I would slow to a walk when cars came by as I was still sure that I looked absolutely ridiculous but I was very much enjoying myself.

    I signed up for a 10K. This meant I had to break the news to my family that I, Sarah, was running. You know what? They didn’t laugh at me. I don’t know if they believed me until they actually saw me run in that race…but they didn’t laugh.

    I’ve been running ever since. I have a much longer time between seizures and when I do have one the after effects are milder. The side effects of my anti-convulsants don’t bother me as much anymore. The biggest effect of running? My mood. I see everything through rose colored glasses now. Epilepsy no longer defines me. I am a hard worker, I’m a mother, I’m a wife, I’m a genealogist, I’m a researcher, I’m a RUNNER. I also happen to have seizures once and awhile. I guess that makes me awesome…just like you!

    Reply
    • Profile photo of Kevin Manning

      That’s an awesome way to come out of the troubles

  3. Good luck everyone. I just love to give away things to our EpilepsyU Users! Have FUN and best of luck everyone. As a non-profit organization we wish we could do more. Thanks for being with us.

    Reply
  4. im not writting this for a computer.im writting this to relieve my stress n angrer over the education of epilepsy.i wasnt born with seizures i started to have them in 2001 after i played 4 yrs of high school football n 1 yr of college football n ever since then my life has been filled with seizures n the aftermath of having them from professional to personal.this month is breast cancer month n every1 is going crazy buyin these 5 hour energy drinks thinkin there helpin the fight against it but bottom line is more people die from seizures than breast cancer n november is national epilepsy awareness month n its not out there for people to be eductaed on seizures.people ask me if they shove a wallet in my mouth if i have a seizure.what is that a 1932 way to help a person durin a seizure.n where u have a condition that u have to relay on people to handle u when ur knocked out that scares u to hear a wallet to be put in ur mouth.my back,knees,shoulders,wrists,nose n head have all suffered from seizures.4 to 5 a month for 12yrs will have a toll on ur body also.what also stresses me out n depression is the medicine situation.1500 dollars a month for medicine that gives me more seizures yea i dont think so.marijuana is the only medicine that works with no side effects but its such a deadly drug according to our government.get ur head out ur ass n make epilepsy medicine legal cuz i still work with no government help or no donations from a energy drink just determination that my condition gave me.i believe that all of us with epilepsy have a story of triumph n i hope that all of u have people in ur life that stick by u through thick n thin.good luck

    Reply
  5. As the CEO of EpilepsyU I assure you that this non-profit organization has no bias and serves person with epilepsy in our clinic of all races and as our Administrator has clearly stated we have staff and Board Members representing various races and cultures to be a diverse entity. Our contest winners are selected at random by software and not staff. This new contest will also have the element of Users selecting the story of their choice. We apologize for the statement posted by this individual.

    Reply
  6. Hi, my name is eleshia! I have a five year old son that started having sezuires at the age of 2! He had never had one before that! I had never been around anyone that had sezuires! No one could tell me why! Well got our first neuro appointment and meds! Then a eeg and mri, he has a tumor on his optical nerves in his brain! I was one terrified momma! He has now been on meds since and has started kindergarten! He is having alot of learning problems! I would love to win this to help him with his education! Not only for him but my education! Im a single mom of four and can’t afford child care to do ged classes!

    Reply
  7. Epilepsy is a very difficult that can change your life in a second. One minute your going about you daily business and the next minute you have a seizure. It erases you ability to remember and it leaves you in a fog that takes over the ability to function. It takes you to a place that most people can not handle. Epilepsy is your own personal terrorist that strikes out of no where and hides out and then re appears. It is a disorder that has so many facets that not two people have the same epilepsy everyone ends up with their own story. Epilepsy is lonely, sad, terrifying controlling empty if you have epilepsy you understand this if your loved one has epilepsy you have witnessed it

    Reply
  8. I was diagnosed at age 50(12 yrs ago) with complex partial seizures. My driving rights were taken away that same morning and my life was forever changed. the great part was now i was being treated for the seizures I had been having for yrs and didn’t know what they were. i now have 3 different types of seizures and for now am not driving. In the past 12 yrs I have gone back and forth with driving and being seizure free for a year or so at a time. I am greater than this disease and pray for the cure. My brother and my niece have epilepsy.

    Reply
  9. I have seizures was diagnosed with it when I was 46. Have had 2 so far. The 2nd one was a bad one. Yes we need a cure.

    Reply
  10. THIS MY JOURNEY:

    Meet Epilepsy . Let me introduce you.

    It does not care about your age, your race, your religion , your job.
    It does not care if your driving , sleeping, showering, eating, walking the dog.
    It does not care if your alone, or married, if you have children or if your pregnant.
    It does not care if you are famous, rich or poor.
    It does not care if you have dreams, goals or aspirations.

    Epilepsy does not care.

    Epilepsy decided to shake my hand at the age of 16.
    I was just sitting in a car. After school. Waiting for a friend.
    She did not care .
    Epilepsy comes in lots of forms, in that vehicle that day Epilepsy introduced herself with grand mal seizure.
    She did not care.
    In the Hospital, days after days she continued to knock at my door, and put my body and brain through hell.
    She did not care.
    My family and friends were scared and they prayed .
    Epilepsy did not care.

    For years Epilepsy did not care, she didn’t even care about all my pills.
    So I decided I didn’t care. I became hateful and bitter and started to give up.
    I did not care
    I started to par-take in drugs and alcohol , I seized.
    I did not care
    I had a seizure while driving my car.
    I did not care.
    I wasted doctors time as I lied about my meds and lifestyle
    I did not care.
    I listened to my family talk about them seeing me have a seizure
    I did not care.
    I prayed to Heavenly father many times and asked him WHY ME?
    I never got an answer so …. I thought
    He did not care.

    THEN SOMETHING HAPPENED…..
    I was pregnant.
    It was time
    For a change!

    I NEEDED TO CARE.

    Even if I knew Epilepsy didn’t,
    I was stronger and now I was fighting for two!
    I researched Epilepsy
    I researched Meds
    I researched dos and don’ts, grand mal Seizures, every seizure, those things called Auras, doctors, options ,oh I read everything .
    I dove in! I faced her!
    I CARED !

    So 12 years now I have had this “relationship” with Epilepsy.
    With all the experience I know this ….

    Epilepsy will never care , what I am doing or where I am going in my life.
    She will always be in my head shaking things up .
    She will always remind me when I am stressed or when I need more sleep.
    She does not define who I am. She does not take away my passions or dreams.
    She will not defeat me but stand by me!
    I have excepted her.

    She knows she saved my life!

    Written By: Jennifer

    Reply
  11. There are only 7 entries so far! Thank you to all who have posted, good luck! There is plenty of time left, and we will keep reminding everyone to post and vote until December 1!

    Reply
  12. After graduating high school my seizures began spiraling out if control. I was having them 3-5 days a week and multiple times a day. I wasn’t responding to almost every AED out there. My medicine was being changed 1-2 times a month. This continued for almost 2 years. I almost lost my job because the side effects or the medicines and them being changed so much was constantly making me dizzy, tired, sick, ect and I simply could not function, and also was forced to drop out of college because I was missing so many classes due to this as well. As my seizures began to get worse I began to loose hope. I became very depressed and confused. I couldn’t imagine why this was happening to me; I had epilepsy my whole life and I didn’t understand why at the peak of my life it was get out if control. My doctor started insisting on brain surgery which I kept turning down because it scared me more than the seizures but I was growing desperate. Finally one day she introduced me to VNS therapy. She sent my mother and I home with a DVD about it and we called her right away telling her I would like to go through with the procedure. It has taken almost a year and a half to two years to fully adjust to it but I can proudly say that I am now almost totally seizure free! With the help of the VNS and two strong AEDs I rarely ever, ever have a seizure! I can honestly say that it had completely changed my life. I now have a job, am doing great in college, I live on my own, and am getting married in March! I will forever be grateful to my doctor for introducing me to VNS therapy. I no longer feel depressed, or say ‘why me’. I feel healthier and happier than ever!

    Reply
  13. What wonderful stories submitted so far and nice to read them. Such strong people! 🙂

    Reply
    • As a little girl I was very dramatic. I can remember always feeling sad. My parents put me in therapy at the age of 5. The therapist concluded that I was a very vindictive child. My siblings and mother always made me feel like my problems were made up. Many nights I thought of putting a pillow over my face because death seemed so much more appealing then life. I was around age 7 that these thoughts began. Besides the horrible depression I noticed that I could not look out a window that had blinds or i would stand and stare at them and be unable to pull myself away. I could not get anyone in my family to understand. The school would call my parents daily because I would fall asleep in class. My mom started putting me to bed at 5:00 pm before the sun would go down. By the age of 16 crazier things began to happen. I would be driving down a sunny road and the sunshine would blink from under the trees and my head would start uncontrollably shaking. It was like I was having some major déjà vu. I could never explain to anyone the pain or things that were happening to me. I went thru many bad relationships in my life unable to control my anger or depression. And then at age 27 my whole life changed. I was riding down the road and had a grande mal seizure. The sunshine had got me once again only this time it changed my life forever. My drivers license was taken on the spot. I had a very successful job which I lost after two yrs of having to find transportation every day. The struggle to find a dr who could get to the root of the problem took 2 long agonizing yrs. I felt as if nobody believed me. After many tests and a lot of time I was diagnosed with epilepsy, cataplexy and narcolepsy. I am now 40 and a mother of two precious boys. One inherited the disease and the other has type one diabetes. I lived many hard yrs full of depression until I realized…. God felt that I was strong enough to carry and live thru this pain. Instead I am proud to be the one to tell and help others in similar circumstances. The one and most important thing I left out is that I inherited these diseases and I now carry them with a smile in my heroes name, my daddy.

  14. I have lived with this disease almost 14 yrs now….started out when I was 6 in half months preg with my 13 yr old….one day coming home from school I guess I had a seizure so they told me 3 days later in the icu hospital bed…..from that day on I had seziures of all kinds regular…2 or 3 grand mals a month….then after my daughter’s birth I started taking meds and none seemed to work…I was allergic to most of them…tegratol, Topamax, vimpat, and so many oothers…then they put me on Dilantin starting at 300 mgs a day…then I got up to 3000mgs a day and when I would go for my blood levels it would show that no meds were in my system…really odd but did….then a doctor put me on some tests and told me one of my kidneys was not working properly and said it was because of the Dilantin…..so then I continued to have grand mals, petite mals, absent seziures, black out seziures (where I function but unaware) stare seziures…and as of 2 in half yrs ago was having up to 20 different kinds….still meds could not control them and I was getting hurt….then great dr.s in VA and VCU/MCV got me on the right track…july 12, 2012 I had a right frontal lobendectomy….and then they have me on 3000mg of keppra a day and a 60mg of Cymbalta…..and so far I have only had 1 grand mal to date….so so far things are looking up…..it is and has been a long journey and I am still traveling….but I am good…with prayers, family, and a great doctors watching me someday I will be seizure free…..also ther is a great story on my daughter Skylynn Gray at the age of 8 saved my live while living in rhode island after I fell and really hurt myself….she was honored for a hero of year award…so check it out….just a little of my story….but felt I needed to share…..and to all of my fellow brothers and sisters….we will fight this horrible disease together….good luck with your daily treatments and know I pray for all of us ever day……and ty EPILEPSY U FOR HAVING AN AWESOME SITE FOR US TO COME TO….

    Reply
  15. lukuz rilea gelb born july 29,2008 healthy baby boy and handsome. On september 29, 2008 he went to the dr for his 2 month shots and check up and got a clean bill of health. sept. 30, 2008 i left to work and he was sleepin in his crib perfectly fine. i got home from work that night to find my son gasping for air every 5 min and lifeless i call 911 and performed cpr on my son while wainting for them to arrive. when they got to the house they took him immediatly to the truck and got him breathing we leave to go to bayonet point hospital we get there and his is crying they did scans and found 5mls of blood surrounding his brain he was then bayflighted to all childrens hosp to find that he also had severs strokes on the right side and there was so much pressure they had to perform surgery to relieve the pressure and they gave me a 75% rate that he would make it they did the procedure and removed his right side of his skull he came out of surgery ok in a coma state for a while i was told that he had broken bones in his legs and bilateral retinal hemorrage and the strokes took his brain that even if he did survive he wouldnt make it for very long and they said he wouldnt make it to leave the hospital among all that the state pulled all my kids from me like i was the bad guy. all everyone kept telling me was he will be ok and be strong and how can you stay this strong you havent broken down. i knew that if i broke down i would either be in jail or commited so i had no choice but to stay calm and focus on him. they put him in medical foster care in fort myers so io could only see him once a month if i could make but thank god for my parents my dad was there he drove me down there almost every month to see him and thank you to my sister she took care of my boys when the state took them from me and steph for stepping up and taking them when my sister had to leave florida and most important thank you to the man everyone said was bad for me but he was the only one that truly knew how i felt and forced me to get out of bed when i didnt wanna move or when all i wanted to do was cry the only one that didnt give me the line everythin will be ok he just stayed quiet and let me cry and poor my heart out and let me talk about how i felt and didnt tell me that i was wrong for feeling the way i did and he was the one that pushed me to go see my boys when i had no energy to move out of my house because that was the only memory i had of my son was in that house thank you dustan with out you i dont know if i could have made it through that part of my life he helped keep me strong for my kids and he was and is my back bone. to my aunt haydee that took time out everyday almost to come and pray over my son and keep me company my entire family i am so sorry this had to happen to us and i feel like such a failure for not seeing who that man really was and lettin him hurt my kids. on july 29, 2009 my lukuz came home and spend his 1st birthday with his mommy and daddy(dustan) then in jan he was here to welcome his little sister leticia home and now we are doin ok i love everyone that has been there for us since this tragedy took place i know i was a pain and horrible throughout it but i pray that noone ever has to endure the pain and suffering that we had to go through. i will celebrate everyday of his life god gave him a chance through god all is possible. It’s hard a single mom trying to keep a job. I do this alone no help from others

    Reply
  16. Profile photo of Allyson Robertson

    I was diagnosed with epilepsy when I was six months old. At that time they were just petit mal seizures. I was always an active girl and didn’t let the seizures slow me down. When I turned 14 my seizures went totally out of control. I started having grand mal and petit mal seizures. I lost count of how many times that I was called fit girl during high school. They didn’t realize that they were making me stronger! By the time that I was 31 years old I was having 6 to 8 grand mal seizures and up to 40 petit mal seizures per day. It was frustrating but I didn’t let it get me down. I always wanted to be a nurse but was told, “No you can’t be a nurse because you are epileptic!” In 1993 after extensive testing, I had a lobectomy done in the right temporal lobe. I only have seizures now if my fever goes over 100 and have been a CNA working with the elderly for 20 years. I am in the process of getting my RN and continuing to work in geriatrics. I am a mother, grandmother, square dancer, and love riding horses. Always remember when you feel depressed…can’t never could and can always will! We can overcome anything that gets in our way!

    Reply
  17. When I was young, I got 107 degree brain fever, and again at age 8 a flu with a high fever. About age 10, I was molested, several times until I disclosed what was happening. That was when I started having petit mal, just before I fell asleep, about age 10 and 1/2., while stationed in England. At age 12, while we were stationed at Hill AFB, Utah, I started having grand mal and went thru tests that no longer exist, that were very painful because of the air pumped up my spine, so they could see if anything was growing and another filling my artery with dye and xraying this also all while I was conscious, but ended up bedridden for days after while it somehow seeped out.

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  18. Things have changed and I have had lots more tests and different meds through the years. I even gave in to brain surgery 5 years ago, without success. I still take lots of pills and live for the day that the treatments to create chemical balance can be done more naturally, by finding the foods and nutrients needed to create a chemical balance. Our society is moving away form eating healthy naturally grown foods, using chemicals to get as much possible out of the ground instead of the best and most natural. I have done a lot of research the last 50 yrs and hope that someone will help find healthier more natural ways to recreate the balance needed, since the chemicals come from plants and foods. Besides the meds ruin our teeth and gums, and I have crushed most of my teeth taking meds and having seizures. Doctors, farmers, biologists find a better way for my sake and not the industry’s sake.

    Reply
  19. I think I was 14 when I had my first gran mal seizure. I was in a public bathroom (alone) and standing infront of the mirrors. Suddenly my vision was a foggy blue and everything looked like it was shaking and goin upward! Turned out it was me shaking, and falling down, haha. Oh the crazy paths my life has taken since then. I ended up in a doctor’s office having an e.e.g. done when I was 16…and whoever invented that test was a genius, but shoulda came up with the glue too! I was diagnosed with “adolesense absense” and told that I should grow out of it. BZZZZ wrong answer george! Haha oh well. I am now 31, and have 4 different types of seizures…but it definitely makes life interesting to say the least. I’ve been blessed enough to find a man who has been willing to accept me seizures and all and to walk down to aisle. Now I’d be lying if I said I never got down or depressed. Turns out my little brain is just stuff in overtime, because the docs said Ihave medication refractory epilepsy. Means my seizures will never be able to be fully under control. Guess my parents were right and I really am stubborn! But, we are at a point that they are managable. And I’m good with that. I spend my time informing folks best I can about this thing that still seems to be hidden in the shadows.

    Reply
  20. I am now since last year I had two brain surgeries at tampa general hospital. I was doing great was 1 year and two months without a grand mal or ped but had started Zimpat after the second surgery. I just got out of 5 days of monitoring because I had 3 grand mals in my sleep after those I freaked out I was not right. I actually accused my wife of poisoning me and one min I would be so mad next I would be crying. The reason I am telling this story is as soon as I went off the Zimpat things went back to normal be careful if you are on it I was on it for awhile then all the sudden all that. Well so far I just keep praying and thanking the Lord for what I have I could be still having 3 to 4 grand mals a week thank you tampa general 9th floor monitoring unit God is good do not stop trying to stop the seizures. I love all you people that deal day to day with this my 33 years has not made me want to stop trying to get rid of this curse!

    Reply
  21. Epilepsy is a war that I have been fighting for years. I feel lately as though I am fighting an invisible brain ninja. I really don’t like to talk about having seizures, but I have to. I have a job, a family and a life that is moving at hyperspeed, it seems. There have been long spans where I have been great for a while, with seizures many months apart, only to have it come and have two seizures inside of a month. You just have to wait until the storm passes. However long that may be, I have no idea. This disorder, this frustration…I have had to say these things for a while, but haven’t. November is Epilepsy Awareness Month, but in honor of my dear friend Rene who is battling breast cancer, I won’t be changing my Facebook cover page. I am telling you a portion of my story instead.
    Just this past week at work, I felt that familiar aura. The stomach rising, you know the one where you are on the top of a roller coaster? I was in the ladies restroom with the door locked and all I could think was, I have to get out. The cold hard tile, broken bones…carpet is so much better. I awoke to a colleague telling me, “You just had a seizure.” “Um… Okay. I’m so sorry” is my typical confused response. I am there, I’m gone, I’m back, and I am confused as hell. I have no idea what my seizures look like and the descriptions just make me laugh or cringe. I have seen my dog seize and one other woman and it made 2 minutes seem like 2 hours. I am the lucky one, although terribly embarrassing, I will take that over the heartache that my family and closest circle of friends have had to see. My daughter, Kay-Kay did a speech this year about me being her role model. I consider these kids of mine, these young people entrusted to me by God, who from the age of 5 and 7 have known what to do, have called the ambulance when Eddie was deployed, have probably been terrified more times than I can imagine or will let myself. They are the strong ones. I don’t worry about them when it comes to life throwing them curve balls. They can handle it and have been doing so for well over a decade. I am probably more protective than your average Mother Bear simply because of this. My kids have picked me up and carried my broken body back to bed many times. This is not how life should work, not at their age. I make no apologies for protecting them and never will. Judge me, and then please, walk in their shoes for a day.
    There is not much I can do. Seizures are part of who I am. I had to say goodbye completely to driving. I will never drive again. My first tonic-clonic was behind the wheel. It was a hard break-up. I cried. I simply adored driving and I started at fourteen. It was a true love affair as I was a safe driver and enjoyed every ounce of my independence. I may have glossed it over in my mind by now after all these years. However, we are divorced now and will never reunite according to the Doctor. It’s been years now, so most days I don’t have to think about not driving. It’s humbling to depend on other people for rides, especially when one is your son. I hate having to ask. I feel so weak. I also hate having to bring up the old ” if I should have a seizure….” It’s awkward and makes me feel weak and I much prefer to feel strong and capable in the task of defeating this disorder, this invisible ninja, as I like to call it.
    I believe that in standing strong and together, we can raise awareness. We as humans, are not the scarecrows in the Wizard of Oz. We all have brains, capable of complex thought and love and so much more than even our greatest scientific minds understand. If you have a brain, you are also at risk for the Invisible Ninja attack. It’s time to find a cure and kick epilepsy’s behind.

    Reply
    • Kimberly I know how you feel been doing this for a long time I was 12 when I had my first seizure I am 45 now 33 years of hell. I have had two brain surgeries in the last year and 5 years ago I had a VNS put in. It kinda lost its effect I was having 2-3 a week grand mals. One thing I want to say is do not ever watch yourself have a seizure. I watched a real bad when I was in monitoring. I wish I never would have done it and don’t be sorry when you have a seizure.But I understand I think the worst thing is to see someones face when I am done. I just was back in monitoring again last week. I was on a drug vimpat I went 1 year and 2 months without a seizure and then a med makes me have three grand mals in a row in my sleep. Then the bad thing is I started hallucinating and I accused my wife of poising me. That stuff messed me up but was up there for 5 days and did not have a seizure they took that and cut two of my meds and sleeped deprive me for 3 of the 5 days 3 hours a night on camera the whole time

  22. I admire your strength and honesty! Beat those Ninjas!

    Reply
    • Profile photo of Kim Harding

      Thank you so much!

  23. Lexi Simpson u should read these they r inspiring n may help

    Reply
  24. God bless you I am so glad you found your niche to help you deal with the depression epilepsy causes. I hope you win you deserve a little happiness in your life may the rest be blessed with healing I am close 33 years of doing this I understand it is hard not to have not had lic. in 15 years good luck!

    Reply
  25. That story is definitely inspiring!

    Reply
  26. Profile photo of Amanda FIlippone

    My names Amanda, and im 20 years old and a Junior in college. I was diagnosed at age 7 and have been battling Epilepsy for now almost 14 long years. I have been hospitalized many times. Not only do I have GrandMal seizures but I also have Partial/Complex. Living with Epilepsy at such a young age was truly the hardest thing I thought I would ever face. Ive had seizures in front of my family, friends, and most of all my teammates. Along my journey of Epilepsy, I have hit many bumps in the road. Some of the GrandMal seizures ive had was riding a bike, down a flight of stairs, while eating dinner, walking off the soccer field, on the playground, in my classroom junior year of high school, in front of my roommate, and the most recent one was about 5 weeks ago 20 minutes before my college soccer game. Every doctors visit I seem to be getting told bad news each and everytime. Just when I thought i hit rock bottom, I was told about 4 weeks ago that I was not able to finish out my Junior year of soccer. This year was important to me because I was named captain and soccer is the one thing I am allowed to do. I have so many restrictions in my life now and it makes me feel not normal. I can’t drink, no driving, takes me longer than everyone else to study or to finish a test, no rollercoasters or upside rides, and etc. Going to the doctor every 6 months and bloodwork every 3 months does get very annoying. I have been on many different types of medications. This past year I was hospitalized because the medication my doctor had me on for about 7 years, was toxic to my body. I was in the hospital for 10 days and then 2 weeks later was back in for about 4-5 days. I was sleep-deprived, detoxing, hookedup, couldnt go outside, and much more. Living with Epilepsy has been the toughest challenge of my life and still is. The fact that I may have to live with this for the rest of my life scares me. I am sharing my story on here to show you guys what I have been through for so long and also I want to inspire others. Please vote for me or leave me comments! I wish you guys and girls a Seizure Free Day/Life.

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  27. I had benign childhood epilepsy as a child, which i outgrew at 12. now my daughter has inherited it from me, and we are going through the whole process again. EEGs, neurologist appointments, tegratol.. it hurt my heart that she inherited it from me but i am soo thankful i live in Canada and our medical system pays for all the help we need.

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  28. My 2 year old daughter has epilepsy. She regressed a lot when it began. She cannot see very well from CVI. But, she really enjoys using tablets/Ipad to help see better. Her Eye Specialist uses it a lot with her.

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  29. My story of strength is a story of my dad. His name was Rex. He was the best dad anyone could ever ask for. I was his first born child and his only daughter. Needless to say. I was Daddy’s Little Girl!!!!

    This is HIS STORY! In 1976 he started having ‘spells’. The family doctor treated him for inner ear infection. His ‘spells’ went on for a long time. I did some research and encouraged my parents to get another opinion. He went to 3 different places. They all said, it sounded like he had epilepsy, but that he was too old. I wondered what age had to do with it. The kind of seizures he was having was the petit mal or now called absence. Back in the late 70’s and early 80’s the doctors thought those type of seizures were only found in children.

    It took over 7 years to get him properly diagnosed. But, he finally was diagnosed with Epilepsy. This was about 1983. At that time, there was only 3 seizure medications and they put him on all three. I watched my wonderful dad loose so much due to seizure activity. He would have up to 200 every day. The medicines he was on did not help his type of seizures.

    He passed away in 1990. That was a horrible time in my life. I thought my dad would live forever. Life took a new path for me in 1997. I decided to move from Indiana to Florida. In 2001 I accepted a position with the Epilepsy Foundation of NE Florida as a Case Manager. I was the case manager in the Daytona Beach area for over 5 years before moving back to Indiana. When I moved back to Indiana, I remained involved with Epilepsy as an Epilepsy Educator. And I hold that position to this day.

    The strength I want to pass on, is that Epilepsy changed my dad’s life and it changed mine. I am one of the biggest advocate for Epilepsy and those who endure it. I love helping people and it is my hope that I keep helping people in every area. Please feel free to contact me if you have any questions or have any needs.

    Carol

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    • Thank you so much for caring so much!!!!

  30. Profile photo of Crissie T

    Seems like just yesterday Bailey was 18 months old..we were at Shands hospital after our very first Tonic-clonic “grand mal” seizure that lasted over 4 1/2 min from the time I saw it! (I was driving and she was sleeping and like most mothers .. Once they are sleeping .. YOU DRIVE) well since then things have changed.. My rear view mirror stays on her AT ALL TIMES! I remember being so scared as I watched my hero of a husband Eric Trussell completely take control and know exactly what to do, full paramedic mode clicked and he was focused … I watched him get her out , immediately start watching his clock, taking her pulse, watching her take breaths , all while stripping her clothes off and putting her on the kitchen counter.. I will never forget the clicking sound that she was making, seeing her eyes rolled completely back in her head, while there was “white foam” (as you know it) coming out of her mouth, shaking non stop with her head side ways and her arms and leg forced “tucked in” He knew what to do.. He was talking as calm as he could while I “ATTEMPTED TO CALL 911.. (It did not go sooooo well) at a moment like this you would be surprised that you can forget your address. all I could say is … “Tell station 18 to go to Eric trussell’s house”.. I replay this over and over in my head every day! Each time she has one IT STARTS ALL OVER! Today I am thankful first to my GOD for not letting it be any worse, 2nd to MY ROCK ERIC , the friends at station 18, that I am sure broke more then one law while coming to our house (record timing there boys and for this I thank you) Nick and drew for not only not letting me drive to the ER , (nice block drew) but also for transporting us to the next hospital at 3am when it was not even your call just because we are family !! To my wonderful neighbor Tammy for driving me to the ER (because eric rode with with Bailey) To my sister Amy for being there (before me) still not sure how you live 45 min the opposite direction and still beat me?? I am sure she broke laws as well) it’s because of all of you and a few more that I got to hold my sweet baby again!!!! Thank you to you all! You will forever hold an extra deep place in my heart!!! If your wondering why I went into such detail… Well I wanted everyone that reads this post to feel just a fraction of the fear that happens when she has a seizure… It is something that you can not explain until YOU HOLD YOUR CHILD LIFELESS AND PURPLE… This could possibly all become just a memory with the use of medical marijuana… can you please help us to get it on the 2014 ballot? All we need is signatures to be turned in .. please I beg you.. Lets be the voice for her and many others… WILL YOU????? Let’s get her OFF THE PHARMACEUTICAL BAG OF TRICKS that is killing or damaging her other organs! You do need to be a registered voter in the state of Florida before you can sign the petition. So today my story of Hope is for a cure to get my sweet girl and so many more better!!! Thank you EpilepsyU for doing what you do!!!

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  31. Congrats to our winner!!!

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  32. Congratulations to the winner

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  33. Profile photo of Richard t Jaeckel

    I want to thank EU for all they do for us this came at a great time for me needed a boost and this did it. I think you guys there should be so proud of what you do it is a inspiration to me to see someone care so much. God bless you all and he will!

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    • Profile photo of EpilepsyUni

      Thank you for the very kind words Richard!

  34. Our stories are very similar …

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  35. epilepsy is one of the hardest condition’s to deal with . some days it seems like i will never get though the day much less the past 57 yrs.but i’am hear to say it can be done. just take one day at a time…. <3

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  36. My perfectly healthy, extremely athletic son Dezmond’s first seizure was at the age of 15 on June 25, 2010 in the back seat of a car north of Santa Fe, about an hour and a half away from where I was in Albuquerque at the time. I received a panicked phone call from my boyfriend at the time” your son is foaming at the mouth, shaking and turning blue, he’s not responding and his eyes are rolled in the back of his head what’s wrong with him what do we do?” All I could do was ask where they were and told them to get him to the nearest hospital while I ran to my car and began driving. I called the hospital in SF to let them know that my son was being brought in by personal vehicle and I believe he is having a seizure. By the time he arrived at the hospital, the convulsions had stopped but he still wasn’t breathing properly, he was blue and wasn’t coherent. That drive from Albuquerque to Santa Fe was the fastest I have ever driven. When I arrived to the hospital in Santa Fe I was informed that they didn’t know what happened but his oxygen levels plummeted to 32% and his heart rate was at 51 so they were going to keep him on oxygen and a heart monitor until they felt he was stable. As my son regained consciousness he asked me where he was and what happened. Much like everyone else, I had no answers so I told him “were at a hospital in Santa Fe we think you had a seizure so they are running tests to make sure your ok”. After running and EEG, MRI and CT scan and finding nothing, we were released and sent home without any answers.
    Two days later early in the morning we were at home and I hear my boyfriend’s daughter’s terrified blood curdling scream. We came running to find my son lying in the hallway in a pool of blood having difficulty breathing. 911 was called and EMT’s were quickly there. He was rushed to the hospital where I explained that he also had a seizure a couple days prior. We were told that since he had not previously suffered any head trauma and didn’t have any family history of seizures, that he probably just tripped and knocked himself out. As the ER tech was doing vitals for discharge Dez went into a full tonic clonic seizure. Fortunately all the doctors including neurologists were still standing in the doorway discussing our “situation” and saw the entire thing. As all the oxygen and heart monitors began alarming several of the ER staff came running into the room clearing us out so they could observe as they rarely get to actually see the entire seizure. Dez was admitted into the hospital for observation and medication determination. After a week of hospitalization and 68, 13 of which were myoclonic or tonic clonic and trying 3 different medications during hospitalization, I was told that my son had Epilepsy…I hadn’t even heard of Epilepsy prior to this.
    Over the last three years Dezmond has continued to attend public school and do well, he has continued to play football, basketball, baseball, cross country and MJROTC. He has also had more seizures than I can remember without looking at his seizure log. We have spent more time in and out of the hospital due to injuries from seizures than I care to admit and sadly, the PEDS ER staff and General Peds unit know us well. As time went on we have seen 3 different neurologists, 2 epitologists run 6 EEG’s 4 MRI’s 7 CT scans and that’s not counting the 11 different x-rays to verify what if any bones were broken in the process of the fall or the seizure from slamming body parts on things. He’s almost knocked out his teeth 4 different times thankfully his braces held his teeth in the gums so they were just really loose but never came completely out. He’s broken his nose several times had several gashes in his head, fractured ribs, fractured his arm, sprained his knee and leg but the scariest moment we ever had was hearing a strange sound and walking in finding him not breathing at all because he was doing something and fell between the bed and dresser in such an odd way that he was pinned so he couldn’t breathe…that was the day I decided it was ENOUGH. No one ever told me I could loose my child to this at any moment. The doctors just kept telling me that this is normal. My son says I have “Epilepsy PTSD” and he felt bad that I could never sleep and I was always checking on him and nothing about any of this is normal, so I decided to do something about it to give me some sort or piece of mind and give my son some sort of independence/NORMAL life. We began our hunt for a Seizure Alert/Response Service Dog. I found out that they are very hard to come by and extremely expensive so I searched for an alternative route. I asked every person that I saw with a service dog what, where, how questions and finally I found an alternative. We found a local trainer that was certified to train service dogs and began our hunt for the dog. Even though all the companies that train Seizure dogs said it had to be a dog of their choosing we decided it would be worth a shot to rescue a dog from the pound. We found Shadow a Pit-bull/Lab mix at the local shelter. A few weeks after bringing him home we realized that he was picking up on some of Dezmond’s seizures before they occurred. We immediately contacted the trainer to expedite the training process. We were blessed that Shadow was easy to train and picked up on things quickly. Training began in January 2013, we anticipated Shadow’s certification after at least one full year of training but he was able to begin attending school and going everywhere with Dezmond after 3 ½ months. Life with a service dog is much different in a positive way. Dezmond still has uncontrolled seizures but Shadow can pull Dezmond into a safe position so that his breathing is not obstructed then find help. There have been several times that Shadow has found someone to lead them back to Dezmond or come running out of Dezmond’s bedroom looking for me to let me know something is wrong. I am relieved that we finally have some sort of peace of mind that my son at least has a fighting chance. What I didn’t expect was for my son to find his voice for Epilepsy Advocacy thru his dog. Just like I would ask people questions about their service dogs, people are constantly asking Dezmond what his dog is for because he is a big perfectly healthy looking young man. When he explains why he has Shadow and how Shadow can help him they begin sharing their stories of someone in their family or someone they know. And much like we USED to be, their families are struggling finding answers and struggling with the lack of independence as a result of coping with epilepsy. Then one day Dezmond told me, “Mom we have to do something to help these people so they don’t have to go thru everything we went thru, what can we do? How can we help them get dogs and find out information about this disorder?” From a simple question, he created Paws for Epilepsy, a resource for Epilepsy patients and their families, and a foundation that can help families obtain Seizure Alert/Response dogs and save dogs from shelters and rescues. Since this journey has begun we have learned a lot and try to be a resource for others. Of the 40 different types of seizures, Dezmond has 9 and the most recent MRI’s have shown that he has brain damage from the seizures and falls from his seizures. That hasn’t stopped him from playing in sports for his school, or from getting good grades, dating or making life plans. He wants to go to College at CSU to become a Vet and he wants to help people. Dezmond is now 18, a Senior in High School on the Varsity Cross Country team and Varsity Basketball team and a Commander for his MJROTC program. In his spare time he visits children in the hospital suffering from seizures to deliver stuffed animal puppets from his Paws for Epilepsy Foundation or volunteering at the local animal shelter to help find homes for dogs and match seizure patients with dogs to begin their training. I guess the moral of this really long story is, Epilepsy is scary, it can kill you, it can even destroy families if you let it, but you can also do something about it. You can live a normal life, play sports, date, and hang out with friend, work, get married or even have a family of your own. You have to have faith, courage and hope and believe that you can do just as much as the next person. And you have to remember that no matter how rough things get in this fight, you’re NOT ALONE. That’s what we realized, we weren’t the only ones. Now, my son always finishes his conversations about Epilepsy with “don’t be afraid to call me anytime, your not alone and we understand what your going thru.” My son Dezmond is a true warrior and my hero.

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  37. How and when did epilepsy first touch my life? What difference does epilepsy make for me, my family, friends and community?
    I was first diagnosed with epilepsy at the age of 10, almost 41 years ago…gran mal seizures. I have been so fortunate that I have been seizure free for over 30 years. Still on medication and still dealing with all the side effects, but it works!!
    The difference for me in dealing with epilepsy, was that as a child there was limited information made available and I would have seizures at school and as the saying goes “kids can be cruel”. And so can adults, this form of hate and bullying is a cycle that must be broken.
    As an adult, I do become frustrated with this “chronic worsening illness, due to the fact that people do not understand my condition and restrictions, especially as I get older. The sad part is that most chose not to spend the time to become informed. It is so much easier to ignore me than to “have” to deal with me.
    To me epilepsy is the “invisible disability”. Until you have a seizure (and it should never come to this) you may just seem a little “off” or “unattentative”or “lazy”. If one does not understand the symptoms of epilepsy, then these observations are made quickly and without hesitation. At work, awhile back, I was told that I didn’t look like an epileptic”. How do you respond to that? Is there a correct answer? And this was from the HR Director of a billion dollar company. Yes, sometimes, I feel as if I will never get away from this stigma. Comments such as these and worse have made me pray with all my might that at least there is no epilepsy in heaven.
    What is my greatest challenge in living well with epilepsy and how do I successfully meet the challenge?
    My greatest challenge would have been being a single parent. I raised my daughter, since age 5, by myself. She is 31 and currently married with a wonderful husband and two precious grandchildren which make up her family. She spent six years serving her county, by way of the Air Force. And yes she was deployed, as most have been. She recently obtained her Master’s Degree. Obviously, I am a very proud parent and am so very happy that I had the strength not to listen to those who insisted I never have children. And to answer your question, no she does not have epilepsy.
    How I meet the challenges. I must say my parents provided the foundation for that. As a child, although protective but not over- protective, they did not treat me differently than my siblings or other children. They said I could do anything and encouraged me to do so. They never made me feel like I had a disability and I have lived that way all of my life. This has enabled me to overcome most of the obstacles that this disease throws ones way. Others are not so fortunate. Their life is filled with unnecessary hardships and pain. I feel that I, alone, could have filled an ocean with my tears that I have shed due to the “E”.
    Why are the Epilepsy Organizations so very valuable and important to me?
    The various organizations allow push for EEO laws, provide counsel if warranted, provide medication, job training and much more. There research to find a cure is not only remarkable but unstoppable. But also they are as very important, as they provide a place where individuals, who have epilepsy may meet with one another. It is a great support, as it is a group of friends with common denominators or problems, if you will. It is a sounding board. A community. A lifeline of information. This is where “my people” are if you would. I am not embarrassed here nor do I feel any shame. I am not made to feel stupid or that my life is unworthy.
    It is a place which I would hate to ever see disappear…unless, just unless..all our hopes come true. And that maybe, just maybe, one day there will be no need for such organizations.
    Dreaming the dream ~~ please help to find a cure.

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  38. Yay!!! Thank you so much

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  39. Saweeet!

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  40. Beautiful story! My life hasn’t been the same since I had that first seizure!

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  41. I got mine on Saturday I love it thanks EPU Sarah you will love it

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  42. I know about this all too well. My position was “ELIMINATED ” on more than one occasion.

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  43. As the Founder of EpilepsyU I congratulate Sarah. Everyone who shared their personal Story of Strength at http://epilepsyu.com/blog/your-story/ are all winners in my book. Thanks for sharing your inspiring stories!

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