Epilepsy Talk

What’s YOUR Story? | January 15, 2013

When did you find out that you had epilepsy?


What did you do after being diagnosed? 

How do you cope with it now?

For me, it was at age 11.

And although I was diagnosed by the Head Neurologist at NYU, no one (except my father) accepted it.

My step-father was a surgeon. (“You have uneven brain waves.”)

My step-mother was a shrink. (“WHAT’S THE MATTER WITH YOU?”

And I was a pariah.

Of course it didn’t get any better…

I was a zombie on Dilantin.

(The only med other than Phenobarbital that was available then.)

I almost drowned in the shower, continued to pass out, walk into walls, and even broke my nose. 

(My mother said: “What a clutz!”)

But adolescence stinks, no matter what shape you’re in.

(“Those were the best days of my life.” You’ve got to be kidding!)

It was awful.

Trying to date. (What would happen if someone kissed me?)

Being ignored. (People were afraid.)

Being shunned. (Really, epilepsy is not catching!)

Epilepsy became my “dirty little secret”. 

Until I got a little older, a little wiser and became more comfortable in my own skin.

And although my epilepsy didn’t go away, my attitude changed.

After all, no one had any expectations of me, so how could I fail?

I couldn’t fail, except in my OWN eyes.

Ok. Yes. I got angry.

Which was a good thing.

I figured, “I’ll show them.” 

And I did.

I sent myself to college and graduated Magna Cum Laude.

Even though no one would pay my way, because they thought it (I) wasn’t worth it.

Next came waitressing.

After all, a girl’s got to eat. 

You can imagine what a disaster that was.

So, it was on to men’s retail clothing.

Until I keeled over on the suit rack.

And there were a bunch of lousy jobs after that.

But my dream was to write.

So after 124 answers to blind ads in the newspaper, I got a call for an interview.

I couldn’t afford the phone call.

I called collect.

And guess what?

They came to Boston to interview me!

Then it was off to Pennsylvania for a “trial run”.

(They paid for my airfare, motel and food. I had NO money.)

And I fell in love. BIG time.

To the kindest, most caring, accepting, positive, person possible.

Someone who believed in me!

I’ve been writing for 34 years.

I’ve been married for 38 years.

(Which, in my family, is an all-time record.)

And yes, I showed them all.

But most of all, I showed myself that I could do it.

Am I proud? You bet!

Now tell us about yourself…


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  1. Hi Phylis, glad to read your story. Sorry that you went through so much. We all did, didn’t we?

    Mine is just as long.

    I was allergic to Dilantin in 1949, when I was diagnosed and put on Dilantin. I had Steven’s-Johnson Syndrome. I almost died. I am Still here, one of my poems that tells all about my epilepsy.

    When I fell in love, I was scared to tell him about my epilepsy. I thought he would drop me. Then I had a seizure on one of our dates. It scared him and he pulled the car over to the side of the road.

    He asked me what happened and I told him that I had epilepsy. He asked me why I did not tell him sooner. I told him why. Eventually, we got married in 1964. We are still married and in love.



    Comment by Ruth Brown — January 15, 2013 @ 7:50 PM

    • Wow, sounds like we were separted at birth. Minus the Steven’s-Johnson Syndrome.

      And you know, I do love that poem. Perhaps you should include it here.


      Comment by Phylis Feiner Johnson — January 16, 2013 @ 10:09 AM

  2. What a great story and inspiration for all of us out there dealing with Epilepsy. I am a mom of a 16 yo gal who has severe Epilepsy and has lost her verbal skills and so much more. She has been through alot including brain surgery, so many meds I cannot count how many she has failed. She is doing so much better now. She is now spelling on a spell board which is very slow but we are making progress. So many people that are supposed to support you walk away and I’m trying to teach her that she can do so much. I will never lower my expectations for her! I’m not sure what the future holds for her but I know we are working hard to gain as many skills so she will have a very fulfilling and rewarding life.


    Comment by Jennifer Bertram — January 15, 2013 @ 10:12 PM

  3. Hi Jennifer, I taught my children after they came home from school. I was successful. Back then, children did not have to know how to read to graduate from High School.

    They are in there 30-40 years old. They are very educated and I have 3 grandchildren. 2 of them are adults now. One is almost finesed with High School. I live in CA and they live in PA so I do not get to see them. I went one time and I had too many seizures and had to come home after 3 days.

    I did not let my epilepsy from teaching my children. I was successful and I am sure you will be too.


    Comment by Ruth Brown — January 16, 2013 @ 1:13 AM

  4. Wow! I never knew that Ruth!

    Here, also, you don’t need to read to graduate high school. (At least you didn’t at the time of this story.)

    Somehow, I had this tutoring student who charmed his way through Catholic school.

    He married someone who was an avid reader. Then they had two daughters who loved to read.

    Needless to say, he felt more than a little left out.

    So, he finally took the plunge and decided to learn how to read.

    He was so motivated that he made amazing progress. It was so gratifying to see. And soooo exciting!


    Comment by Phylis Feiner Johnson — January 16, 2013 @ 10:22 AM

  5. I had my first seizure when I was two, but wasn’t officially diagnosed until I was six. I only found out through being forced to take medications after having more seizures.

    At almost 27, I’ve completed two undergrad degrees (with a minor). But considering going back for my MA. Mostly because I’m still struggling to find work in my field as the economy is struggling. But I have hope that all works out.

    My family (especially my mother has been great about my seizures) And I am officially dating someone, and as I write, I’m at GW Hospital in the EMU for testing to find a better treatment. With that in mind, he’s been supportive, as well as the many people in my life.
    I refuse to give up hope and be consistent with what God has planned. I know it’s not about me anyway. 🙂


    Comment by Liza — January 16, 2013 @ 11:17 AM

  6. Liza, you are wonderful. All that you’ve accomplished.
    Hats of to you!

    You’re an inspiration to us all.

    (P.S. They used to give me my Dilantin in with my vitamins. As if I didn’t know what it was! Ahhhh denial. It stinks!)


    Comment by Phylis Feiner Johnson — January 16, 2013 @ 12:14 PM

    • Hi,
      You are all such amazing people! I belong to a support group and was listening to mom’s that are fighting for their childrens medical care and rights and a felliw who’s dealt with
      Cancer and epilepsy. We are tough people. We are still soft and compassionate, eventhough we’ve been “through the mill”
      What a testimony we have to share with a mostly Epilepsy ignorant world. I applaud all of you and thank Phylis for starting this outreach to us. Press on because there is always hope.


      Comment by Charlie — January 16, 2013 @ 12:57 PM

      • Charlie, You forgot to mention that you started your Epilepsy Support Group all by yourself. And all of the people you’ve helped.

        Also your own courageous fight with epilepsy for 53 YEARS.

        You are so generous, caring and kind.

        Modest, too! 🙂


        Comment by Phylis Feiner Johnson — January 16, 2013 @ 3:27 PM

      • Its not about me, it’s about the war we wage daily with this beast called Epilepsy. It’s about educating the ignorant and funding some ‘real’ research so we can bury the beast.


        Comment by Charlie — January 16, 2013 @ 3:52 PM

  7. “Ohhh Good, you are awake”, was the first words I heard.

    Just like if I was in deep sleep & dreaming, hearing the voice of softly speaking ER Nurse,,,

    “Sir, the Ambulance brought you in, because you have seizure”,,,,was my first introduction to something I was TOTAL STRANGER, almost 15 years ago.

    “What,,, And what in the hell is Seizure ???”

    “Who ever brought me here had to be out of his mind”.

    “No, thank you, I NEVER had nor do I have seizure”.

    “Have a nice day”,,, Jumping of Hospital ER bed & walking out of the hospital was my first reaction to something I NEVER knew, I’m going to live with for the rest of my life.

    Arrogance, ignorance, rejection, denial, cover up, insecurity, fear of DEALING WITH THE UNKNOWN NEW ORDEAL,,, only brought more seizures, ambulances, Hospital ER stays,,, to the point of losing driving privileges, long time permanent employment, families, friends,,,etc.

    Even frustrated BOSS & NEUROLOGIST had to record my TWO Grandmal Seizures on video to CONVINCE ME, something SERIOUS is going on with my life.

    Looking at myself having TWO GRAND MAL SEIZURES IN TEN DAY on video, forced me to swallow the bitter pill,,, Life ain’t going to be the way I was accustomed to.

    The adjustment was NOT picnic but,,,,

    Thanks to ALL of you in Epilspsytalk sharing your experience with me & with the rest of the world, finally i learned to accept & live with epilepsy.



    Comment by Gerrie — January 16, 2013 @ 5:39 PM

    • Acceptance is difficult at best. Especially with epilepsy, that you know is going to change your life.

      As I always say: You can be a victim of epilepsy and let it rule your life, or you can decide your own fate.

      Gerrie, I thing you’ve done wonderfully in adjusting (despite the initial denial) and really made something significant of your life.

      If you don’t give yourself credit, I DO!


      Comment by Phylis Feiner Johnson — January 17, 2013 @ 10:49 AM

  8. Great post Phylis. My story is very similar to yours.

    I was first diagnosed with epilepsy after taking a tonic clonic at age 2. My mother put my sister & I down for a nap only to come find me blue – I wasn’t breathing. My grandfather & a nurse took turns giving me CPR until I was life flighted to our local Children’s hospital. I will forever have a bond with him because of that.

    My youth was hard. I took wandering seizures. I walked out of school once. I was lost in our small town once for several hours.

    When puberty arrived, things got worse with my seizures. And although we had the Foundation come in to speak to my classmates, I was bullied and eventually abused physically. Finally, my parents had enough and we moved school districts.

    The new school helped some, but take a tonic clonic and be life flighted from the track field and you quickly get labeled. It made me the “queer” and I fought depression.

    Still, I managed to have strong academic work. I finished high school and moved out on my own. I’ve had a hard time finishing college because of trouble my seizures (I have my associates degree & am “this close” to graduating with my bachelor’s). But I haven’t given up.

    I’ve been determined to be independent. I have my own place and pay my own bills. Mr. Right, who understands and accepts the epilepsy, still hasn’t made his appearance, but I try to remain hopeful.

    In the meantime, I continue my journey with epilepsy. Right now, I’m being evaluated for surgery. It’s been a learning experience, which is why I started writing my own blog: http://enduringpilepsy.blogspot.com

    To share about the steps along the way, start conversation, and help raise awareness – as you do here 🙂


    Comment by pghkatrina — January 16, 2013 @ 6:51 PM

    • Wow. What a success story! Despite the odds.

      You should be VERY proud of yourself for all you’ve overcome. Congratulations!

      By the way, you might be interested in the article

      Bullied Because of Epilepsy

      “Like lions, they smell the difference…
      Like hawks, they sweep down on you…
      And like hyenas, they laugh and eat your heart out.”


      I think you’ll relate to it.


      Comment by Phylis Feiner Johnson — January 17, 2013 @ 10:56 AM

  9. HI All,

    For me it all started after a baseball size tumor was taken out of my head. Luckily it was not cancerous and i was so happy. Before they found the tumor, i was having issues, that made me feel like i was going to die soon. I didn’t know how to explain it to the doc, other then i was having mega headaches. Well after surgery i started to have numbness in my finger tips. First they were small, then more fingers were involved, then the hand and soon the tingling started with the numbness. It would only last about a minute or so, no big deal right. Well then it started to effect my forearm, then the thumping started with the numbness and pins and needles feeling, as well as the flailing in my hands and arm. Each time this would happen, it was like having a religious moment. At the onset of the seizures, the thought of death always came into my mind. What if this will be the last seizure i have, what if it finishes me off. Luckily it never went past my arm, once in a blue moon i would feel numbness in the side of my face, one of those moments, it felt like worms running around under my skin around the mouth area.

    Well to skip ahead, two years ago i had a grand mal seizure, that was not fun. I thought my seizures would always stop at my arm. Well 1 year ago, due to the meds i was on, i had 2 seizures that really beat me up, the second one lasted for 4+ minutes. Afterwards, i couldn’t bring my head up, it was in a slouching position for a few minutes. I couldn’t move for like 20 minutes after that one. I told my doc this and he increased my meds, but that increase caused me to have shortness of breath. I had to tell the doc that he did not realize the severity of what has happened to me and i told him that i demand to be taken off that medicine. So he moved me onto another one. But i also asked him for an emergency pill, that i had read about from a blog i had read daily, by David Welch. They gave him Ativan to take if he feels a seizure coming on. So i was given the generic version of that to take when i feel one coming on. Luckily i have an aura that tells me when a seizure is about to happen. My seizure still start with numbness first, then pins and needle in my finger tips. When this happens i take the emergency pill. This pill is highly potent, it makes one very sleepy after a while. Then the next day i can still feel that i’m not totally myself. So far, my seizures have not gone past my arm since. I just hope it’s because of the Epill. Living in the shadows of Epilepsy is not fun. I don’t do much socializing because of it. No one can tell what has happened to me by just looking at me.

    Having a seizure in public is the worst thing that can happen, having a seizure anywhere outside ones home is not fun. Luckily this last year most of my seizures have happened in the mornings. I attribute this to the medicine i now take, Gabapentin. It only works well for like 6hrs, so i take it in the morning, then at noon, then at 6pm. So by the time morning comes, i don’t have any medicine in me, so i think that is the reason why they have occurred in the mornings. I think that is great, if i could have all of them in the mornings, that would be a blessing.

    After my tumor surgery, i had 44 stitches in the shape of a horseshoe on the side of my head. All the stares i got from people looking at me when i went to the grocery store, made me feel like i had a clowns outfit on. Even the little babys in the shopping carts would say look mommy that man has metal in his head. 🙂 Doh!#@$

    When my family and friends see me have one, they freak out too, they want to help so much, but i tell them there is nothing they can do, just leave me be and let me ride it out.

    All i can say is that having a seizure is the worst thing anyone can go through and to have it on a regular bases is a nightmare.


    Comment by zolt — January 16, 2013 @ 7:22 PM

    • You and I are pretty much in the same boat. Right after I was diagnosed and I told my employer he laid me off and refused to take me back. So far for the past 20 years no other employer has been willing to accept me. Also I no longer have a social life, so epilepsy brought my life to a scretching halt.


      Comment by Shawn wittman — January 16, 2013 @ 8:48 PM

    • Zolt, I asked Charlie why he wore his hair so short, because it obviously showed his umteen surgery stitches.

      He said it was a “badge of honor” and whenever someone looked at him, he took the chance to tell them a little bit about epilepsy.

      As for your meds, is a time-release formula available?

      And for seizure stoppers, have you considered the somewhat new med Midazolam?

      To find out more, you might try looking at

      Stopping Seizures…


      Also, you might be interested in reading
      The Isolation of Epilepsy (a subject we know all to well…)

      “You’re reluctant to go out. Because having a seizure can be so unpredictable and embarrassing.

      You think: ‘What if I have a seizure? What will people do? What will they think of me?’

      Those and many other self doubting questions run through your mind.

      Even if you’ve only had a few seizures, there’s always the fear that silent (or not so silent) enemy may strike again. So why chance it?

      All over the world, the social consequences of epilepsy are often the cause of more suffering than the seizures themselves.

      So isolation becomes preferable to social interaction.

      In one study, participants anticipated that their self-perceptions and self-esteem would be more positive if they didn’t have epilepsy.

      Self-perception turned out to be one of the most important predictors of successful social relationships in people with epilepsy — even more important than seizure frequency, severity, or other medical factors!



      Comment by Phylis Feiner Johnson — January 17, 2013 @ 11:26 AM

      • Hi Phylis,

        Thank you so much for sharing your story. When I was 2 years old I fell off a tricycle and hit my head. I then had a condition in the mornings which one doctor called epilepsy and the other didn’t. It was Ireland in 1979. I would be scared and would always have to have a sleep after it. I couldn’t find my way back from the school bathroom on one occasion and teacher didn’t understand. Whatever they were they went away when I was six and the meds stopped 2 years later.
        Mornings changed again when I was 13. After waking and dressing I would find myself wandering around my room, confused, dizzy and cold looking for the door. I didn’t link it to other female developments until I was in my mid twenties and rebelling against my meds and had my only generalised seizure 2 weeks through another important female routine. By that time they had tried me on every medication known and I had had every side effect known.

        In my mid-twenties, I met the love of my life. He knew always I was getting one when I went quiet. (You can tell by now that usually that’s not in my nature.) He would hold my hand, tell me I was ok and get me the water when I needed it. He was there to tell me what happened afterwards. How many times had I said Bistard? The day I married him, I swore in Italian while having my makeup done. The word ended with stardo and I’d say the beautician understood. I often said similar words in an attack, trying to tell the epilepsy where to go!

        After many tests and meds, they offered me surgery but said it might not work. I’m a vision impaired part time teacher, a musician and songwriter and couldn’t take the risk.

        One morning after starting to do the ironing I had an attack as I was leaning forward. It inspired me to write an instrumental piece of music called Lost Moments. The piece tells of how I woke with joy full of energy, ready to do everything for the day. The morning twilight was beautiful. Then it happens, the feeling in my inner stomach, the saying ‘NO’ being confused by familiar objects in the room around me and then regaining alertness, feeling tired and not remembering what happened. The moments are lost and your perception of the day has changed.

        Writing the piece helped me to finally accept my epilepsy. The moments are lost in a seizure but the time around the seizures is always there to be gained. I am no longer ashamed if I get one in public. I know it isn’t my fault. To hear my music check out reverbnation.com/annemariekearney


        Comment by Anne Marie Kearney — January 17, 2013 @ 4:08 PM

      • Hi Phylis,

        You ask, “As for your meds, is a time-release formula available?” Maybe, but i am glad that my seizures happen in the mornings. Normally like 1/2hr after waking. The reason i’m glad for that is because I know i will have a seizure once a month and to have it happen in the mornings, while i’m at home is great. I haven’t went to work yet and i just take the day off. Luckily i work for a big company that can mange a day or so without me.

        I’ve taken meds that would push my seizures out for more then a month, but those seizure would be stronger. Like Lamotrigine, that was the drug that pushed it out to every 2 months, but those were the ones that beat me up. The ones i mentioned earlier. The electrical discharge in me will happen and it just needs to be discharge eventually. Wish i had a ground strap connected to the brain, that would discharge it without any problems. 🙂

        I’ve never really been a social butterfly, so i have no problems being alone. I’ll go out and get the stuff i need, then go home. I can drive, but i try not to as much as possible. I’ll take trips to my moms house 140 miles away, but even then i will not take the highways, i prefer the roads less traveled. A lot less stress involved and the beauty of the back roads are great. I have a lot of pictures from that.


        Comment by zolt — January 24, 2013 @ 7:40 PM

  10. Anne, is that the exact spelling of your website?

    It’s amazing all that you’ve accomplished, despite your epilepsy. (I used to write poems too. But when I became a full-time professional writer, poetry was the last thing on my mind. I was too brain dead!)

    Did you consider that you might have/had Catamenial Epilepsy? If not, this link might be useful:

    Catamenial Epilepsy – Do You Have It?


    Whatever type of epilepsy you have, congratulations on your talent and artistry and never giving up.

    HOORAY for you!


    Comment by Phylis Feiner Johnson — January 17, 2013 @ 4:20 PM

    • Hi Anne,
      You have an incredible talent. Writing, singing, and playing instruments. I listened to all your songs on reverbnation.
      I dont know how to find the piece about lost moments though. Any tips.
      You are just another testimony of why we shouldn’t curl up in a ball of self pity and hide whatever talents we might have. Sing on!


      Comment by Charlie — January 18, 2013 @ 6:38 AM

      • Hi Charlie, I know that you have had a tough time in life. You have come through with flying colors.

        Like you, Anne, Phylis and me, we are all positive thinkers. That is why nothing in life gets us down. We just do not let it.

        If I left anyone out who is a positive thinker, I include you, as well.

        My religion is my main focus in life. It carries me through. I have a hope that I wish you all had and maybe you will.



        Comment by Ruth Brown — January 18, 2013 @ 7:11 PM

  11. I discovered I had a seizure condition secondary to brain surgery when I was 42, a year after 3 brain surgeries to remove a huge malignant tumor. I probably had seizures before then, but my “O so loving hubby” left me alone in the house for most of the year prior, so I don’t know.
    I have no idea what my triggers are (lack of memory for most of the day prior) and have them successfully controlled with Dilantin and Nuerontin.
    Hubby has divorced me and is trying to take my kids (for reasons other than the seizures ~see brain tumor) but with prayer and support from my family I am starting over, getting an apartment, and looking for a job.
    I have never been afraid to go out in public b/c of seizures, perhaps b/c I haven’t had one in 3 months and perhaps b/c I was with friends who rushed me to the hospital each time I had a seizure prior.
    Call me naïve or optimistic, but I like to think that most people would call EMS if they saw someone having a seizure.
    My greatest fear would be to have one in front of my kids (they are 5 and 8 and would be scared). I don’t mind driving restrictions right now, as they keep me and others safe.
    All your stories have been inspirational and make me realize that however hard my life has been these past 18 months, it’s nothing compared to the struggles you have gone through.


    Comment by Regina — January 23, 2013 @ 12:29 PM

  12. Regina, you should be proud of YOURSELF. And YOUR story is certainly inspiring.

    A few words of advice that might help…

    If you’re concerned about your triggers, keep a Daily Seizure Diary of your sleep patterns, what you eat and when, daily activities (including emotional upsets), how you feel before a seizure (auras?), during a seizure, afterwards and the duration of the seizure, if you are able.

    As for your children, take a look at:

    25 Best Epilepsy Books for People of All Ages


    There’s a book called “My Mommy Has Epilepsy”
    By Stacey Chillemi

    As a mother of three and a woman with epilepsy, Chillemi is realistic about her limitations, “Having epilepsy and being a mom is difficult at times because I worry that if I have a seizure and I am unable to recover fast enough, that my kids will suffer,” said Chillemi.

    In fact, the entire time Chillemi has been a mother she has had only one tonic-clonic seizure resulting in serious injury.

    According to Chillemi, she was walking the dog with her children when she felt a seizure coming on.

    She immediately instructed the children to go inside and wait downstairs for her.

    Following the seizure, Chillemi realized she had suffered a head injury and reached out to a neighbor for help.

    After the tonic-clonic seizure Chillemi decided to write a children’s book, called “My Mommy Has Epilepsy”.

    Also, Ruth (one of our Epilepsy Talk “family” members) taught her children at a wee age how to recognize a seizure and how to make a phone call to 911.

    The education “My Mommy Has Epilepsy” offers can help relieve you of the uncertainty and burden of the children not knowing and give them a purpose and a plan to help.

    Children are more intuitive than you may think. And ready to help their mommy, if they know what to do.

    Don’t leave them in the dark. By not telling then, you’re perpetuating your own epilepsy stigma. Let them help you. They love you.

    As far as your husband goes, F**k him. Your neurologist can plainly prove that you’re capable, responsible and quite able to take care of your children and yourself. Otherwise, how could you be looking for a JOB?

    Please Regina, give yourself a little more credit!


    Comment by Phylis Feiner Johnson — January 23, 2013 @ 6:20 PM

  13. Hi Regina,

    Sorry to hear about your tumor, were they able to completely remover your tumor? Mine was a grade II, which is one step below malignant. Mine was on the fence, couldn’t decide whether or not it wanted to be malignant or benign. I was 38 when they found mine and now 6 yrs later and MRIs every 6 month, the tumor has not returned. Knock on wood. I hope urs will do as well.


    Comment by zolt — January 24, 2013 @ 7:07 PM

  14. Zolt, do you have any auras before your once a month seizures?

    Why do you isolate yourself? Are you a lone wolf or afraid that they will “strike.”

    Do you feel a lack of confidence? Because IF you do, get out there and start with one friend or two and build on.

    You have so much to offer…it would be wonderful if you would share it.


    Comment by Phylis Feiner Johnson — January 25, 2013 @ 8:41 AM

    • Hi phylis,

      Yes, thank God for auras, i get them in the finger tips numbness and tingling. By the time it gets to pins and needles feeling, i know it’s time to get my emergency pills out.

      Not sure if i would say isolate, i do like to take nature trips whenever possible. I also have a lot of aquentences and a few trusted friends. But i’m sure like a lot of people here, will agree, that after working 8 hrs, one feels very tired, especially with some of the pills we take. My day starts at 6am at 8:30am i’m at work, I get home at 5:30pm, make dinner, then afterwards i’m all pooped out, I’ll get on the computer or watch tv for a couple of hrs, then at 10pm head to bed. 5 days a week that’s normally my routine. On weekends, i’ll do laundry, run to the stores if i need something. Have friends come over, or go over to there house. I’m not really a fan of Hollywood, so i do not go to movies. I’ll go out on dates every now and then, but nothing like i did back in my 30’s. Weekends, just Saturday i try and set aside for me. To catch up on things or just to relax. Sundays, well on football days you can find me watching the games.

      Confidence, i don’t think i lack that, i can do whatever my mind set on doing.


      Comment by zolt — January 28, 2013 @ 4:11 PM

  15. Good for you Zolt. It sounds like your day is FULL and you’re doing what you’d like to be doing.

    I was just worried from your last post that you were isolating yourself.

    I’m much relieved. Thanks for correcting me!


    Comment by Phylis Feiner Johnson — January 28, 2013 @ 6:16 PM

  16. fjmb@richemp.org.za
    Is their any stories about people who outgrow their epilepsy.


    Comment by Hannetjie — January 29, 2013 @ 2:36 AM

  17. Usually, it happens only with childhood epilepsy.

    “Epilepsy can begin at any time of life, but it is most common in children under five years. Although epilepsy varies from person to person, children with epilepsy generally have seizures that respond well to medication, and they enjoy a normal and active childhood.

    More than half of children with epilepsy will outgrow their seizures as they mature, while others may have seizures that continue into adulthood.”



    Comment by Phylis Feiner Johnson — January 29, 2013 @ 10:03 AM

  18. My epilepsy began when I was 11; I was in a near-death experience and had a closed head injury the near before. I made a full recovery, but it began and will always be there (my old step-father thought I was faking it). Due to it, I never learned how to drive and so looked down upon. I had brain surgery years later, but they only returned worse than before. I am sick of being looked down upon by society and had the VNS recently put in hoping that this is going to at least reduce the severity of my seizures. I have an undergrad, but still looked down upon by people/society.


    Comment by Nathan — February 3, 2013 @ 12:39 PM

  19. Congratulations on your success, despite the obstacles and ignorance. (That’s what lies behind prejudice.)

    As for the brain surgery, not that you’re up for it, but a member of our Epilepsy Talk “family” (Charlie) had botched brain surgery once.

    Then, three years later, he had it again in a renowned neuro hospital in NYC. He’s been seizure-free ever since.

    Here are two links you might find useful:

    2013 Top Ranked Neurology and Neurosurgery Hospitals — For Adults and Children


    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors



    Comment by Phylis Feiner Johnson — February 3, 2013 @ 12:59 PM

  20. i found out i was epileptic at 3 they stopped for awhile and came back and are getting worse now and idk what to do or how to deal with


    Comment by jessica — February 25, 2013 @ 1:35 PM

  21. Have you seen a new doc and had proper diagnostic testing?

    These links may help:

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors


    Beyond EEGs…Diagnostic Tools for Epilepsy



    Comment by Phylis Feiner Johnson — February 25, 2013 @ 1:56 PM

  22. I began having seizures at age 7 after having encephalitis and in a coma for over 2wks. but becuse of the type I was having I was not diagnosed until I was in Jr.high school becuse of finally falling down infront of a teacher.
    To this day their is no name to those type but if you do reading on encephalitis , it now describes to the “T” what I tried for years to explain to friends and family was going on but becuse of doctors it was said i was just having psychiatric probs.
    Finally in 2005, at the age 32 , I finally after being on every single seizure med out and none worked had a VNS IMPLANT but after it didnt work either , in 2011 was sent to the Cleveland Clinic for a right temporal lobectomy. It worked for almost 18months … SEIZURE FREE BUT THEN BOOM SEIZURES 10FOLD HARDER AND DIFFERENT AT TIMES. I have all types grand , petit and migraine but JUST STRONGER AND HARDER NOW.
    I Just started taking hemp as an extra ulternative to and with my meds ( MY MEDS DO NOT WORK)


    Comment by Amanda — November 24, 2015 @ 10:06 PM

  23. What a long, hard trip you’ve had. How is the hemp working?

    I pray it’s giving you some relief.


    Comment by Phylis Feiner Johnson — November 25, 2015 @ 8:55 AM

  24. When I was a child seizures were observed by parents frequently transfers of my father when on duty as an engineer of state government and I undergone so many medicines were changed but the result was bill.
    Ayurvedic medicines prescribed in childhood days but no result.
    One person suggestion a famous neurosurgeon cum brigadier Dr. B. Rammoorthi he was no more of Chennai
    Prescribed Dilantin, Emgard and calcium
    Some years,were passed education was continued he never said to discontinue education and some years changed prescription and Dilantin was stopped
    Tegritol, Mentat and Emgard was continued since 2000.
    Now Frisium, Zeb retard was in continuation .


    Comment by Yusuf — September 21, 2018 @ 11:29 AM

    • How do you feel now? What is your frame of mind?

      I also want to many schools (12 in 12 years) and I must admit it had a lasting effect on me.

      Not only was I the “new girl”, but I was the new girl who had epilepsy.

      It was a real freak show. One I’ll never forget.


      Comment by Phylis Feiner Johnson — September 21, 2018 @ 11:41 AM

    • How do you feel now? What is your frame of mind?

      I also want to many schools (12 in 12 years) and I must admit it had a lasting effect on me.

      Not only was I the “new girl”, but I was the new girl who had epilepsy.

      It was a real freak show. One I’ll never forget.


      Comment by Phylis Feiner Johnson — September 21, 2018 @ 11:41 AM

    • How do you feel now? What is your frame of mind?

      I also want to many schools (12 in 12 years) and I must admit it had a lasting effect on me.

      Not only was I the “new girl”, but I was the new girl who had epilepsy.

      It was a real freak show. One I’ll never forget.


      Comment by Phylis Feiner Johnson — September 21, 2018 @ 11:41 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

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