Epilepsy Talk

Epilepsy — Advice and Insights | January 8, 2011

Many of us were diagnosed with epilepsy at a wee age…

Others were completely taken by surprise in their teens or later years.

Whatever age you were when you were diagnosed with epilepsy, I’m sure you have advice and insights to share from your own experiences.

I’m certain you learned a lot (whether you wanted to or not) and I think we could all learn from your struggles for acceptance and survival.

Won’t you please share that wisdom to help us cope and grow…


22 Comments »

  1. This is a great post. I do not know about the wisdom on my part. Phylis, you have the wisdom.

    When I first learned that I had epilepsy, my friends thought nothing about it. I told everyone.That was when I was six years old.

    Later on in school, the same friends started leaving me. I felt that they were not true friends. True friends stay by your side no matter what.

    When I was a teenager, I wanted to go to Girl Scout Camp. I was accepted as friends by the Girl Scouts. My mother signed the release that I could go. I was thrilled when I got on the bus and went. My mother did not tell me that my neurologist had said that I couldn’t do anything. I could not ride horses, swimming or go on hikes. I could go for walks and clean up the cafeteria and I cleaned up the camp site.

    The other girls thought that was mean. They wanted me to go with them. At home, I rode horses and I knew how swim and hike.

    Like

    Comment by ruth brown — January 8, 2011 @ 11:25 AM

    • It WAS mean!

      Like

      Comment by Phylis Feiner Johnson — January 9, 2011 @ 1:11 AM

      • Ruth, I have known you for quite a few Yrs. 🙂 You Have Wisdom! A lot of it is Common Sense mixed w/ Personal Experiences. As you just ‘shared’. 🙂 The rest is what you have Learned Over the Yrs & share w/ others. That, too, is Wisdom! 🙂 There w/in is Your Wisdom! 🙂

        Love & Hugs! Candi

        Like

        Comment by candi — January 10, 2011 @ 11:48 PM

  2. It has been almost 20 years since my first documented seizures. The more I read and learn I believe I was having them in my sleep about a year before my first known seizure. One of the greatest lessons I have learned is keep a journal. I just now started one because the assistant of my new doctor related how important it was. If you are not satisfied with what your doctor tells you FIND ANOTHER DOCTOR. I was seeing one doctor that told me things that contradicted everything I had read. I felt he became non-chalant about things. If something doesn’t make sense, read, read, and read some more. It might get overwhelming, but at some point you will find the answers that make sense and that brings amazing peace of mind. Knowledge is power! I have finally found a doctor that really wants to find out what is going on. He is not making decisions based on previous neurologist notes and tests. It took some time because the number of neurologists in my town is very small but I believe devine intervention helped me find him.

    One other note of advise, if you are married really encourage your spouse to seek answers to his/her questions. It can add a lot of strain on your marriage if your spouse doesn’t understand.

    Like

    Comment by Tennille — January 9, 2011 @ 12:26 AM

    • I also think you should take your spouse WITH you to the neuro. First of all, another set of ears is helpful in remembering things you may have missed or forgotten.

      Secondly, it gets him/her involved and helps them understand what’s going on with you.

      And finally they’re free to ask any questions and have their own fears addressed.

      On more thing. Have them make a list of questions with the most important ones first, in case times runs out!

      Like

      Comment by Phylis Feiner Johnson — January 9, 2011 @ 1:16 AM

    • I need to get a true diagnosis. of my. sei7zure disorder because my seizures are almost daily. I need to see why my mediction @ VNS hasn’t stopped the. 7

      m totally?

      Like

      Comment by bo — November 1, 2013 @ 11:14 PM

  3. It’s been over 30 Yrs since official Diagnosis. But, over the Yrs I have found out from family that my 1st seizures were as an infant/toddler. My next ‘Noticed’ Gran Mal was witnessed by my 5 Yr old daughter. The next by my Basic Training AF Squad. I was Finally diagnosed & Still Clueless about what Epilepsy or Seizure Disorder meant. And my brother claimed my ‘spacing out’ was something I always Did. So, possibly 60 Yrs of seizure symptoms. It took over 10 Yrs to find a med that worked for me. I remained Clueless. Just did as the DRS said. “Take your meds. Report Any Seizures when we see ya again.” 😦 My Seizures had been under control for over 5 Yrs. But, I hated the ‘sleep all the time’ side effect. So, I changed meds. When that med was ‘recalled’ I went back on my Pheno’s & decided to Search for Answers Online. I have been Learning, ever since. Epilepsy truly is a “never-ending, forever Learning Disorder”. I Learned what I know, not just from experience. I Learned from PPL w/ Epilepsy. PPL who Know or understand, what’s what, are those who have been there, done that. I have moved sooo much over the Yrs. I have had Numerous DR opinions. At First, I relied on my Gut instincts & Common Sense. I still do! But now I also have info Thanks to the Friends I have found on the Internet.

    I Learned “Don’t Let Epilepsy Rule Your Life!” I learned to Face my fears, not run from them! And I think the Best thing I ever Read was an Epilepsy Child’s Summer Camp Logo: It Takes Brains To Have Epilepsy!

    Love Candi

    Like

    Comment by candi — January 11, 2011 @ 12:15 AM

  4. That’s an excellent point. The more we share, the more we can learn from each other. I had petit mal epilepsy as a child and start having seizures again as an adult. I’ve learned so much about epilepsy from having it again as a result. But it has taught me to put my health ahead of everything else.

    Lisa
    http://livewithepilepsy.yolasite.com

    Like

    Comment by animalmuppet — January 15, 2011 @ 1:00 PM

    • Thanks for sharing your insights AND your website with us.

      I think that probably the long time between seizures was a time of growth and maturing, making you more aware of yourself and self assured.

      Just having the positive attitude of learning and sharing is a triumph!!!

      Like

      Comment by Phylis Feiner Johnson — January 15, 2011 @ 11:15 PM

  5. I will tell you a little more about my seizures. Thank you Candi for your complement, but I do not feel that I have wisdon. I am just expressing what happened to me.

    My seizures increased when I wan 20 years old. I went from petit mals to Tonic/clonics. I had 3 in a row. I was on my honeymoon. My husband was very understanding, but a little ignorant. He did not take me to the hospital. Our friends kept telling him that I could die from that many seizures. He and I did not understand that.

    When I saw my neurologist, he told me and my husband that our friends were right. I had to be rushed to the hospital when I had that many seizures.

    It is still an ongoing learning process after 61 years of seizures.

    Like

    Comment by ruth brown — January 16, 2011 @ 1:34 AM

  6. On your honeymoon? What a time to begin! 😦

    But Ruth, I agree. I think our lives are an ongoing process of living, learning and understanding. (Plus, LOVING, of course!)

    Like

    Comment by Phylis Feiner Johnson — January 16, 2011 @ 2:50 AM

  7. I watched my brother ,Joe ,having grand mal seizures from the time I was 10 (he was 13 or 14)
    he was medicated beyond recognition until he was 45 then he had a lobectomy,, he became seizure free,, but he missed so much,,think of all the social learning,,,the experiences that make us who we are,
    seeing him making up for it now,, he’s 62 with the heart of a 13 yr. old boy,, he has actually rehabilitated his cheek muscles into an almost permanent smile,, hearing him laugh is my favorite sound,,, he gets excited about picking out his own stuff,,, my mom was kinda bossy,, but she taught him how to hang in there and never give up,,, he is getting a computer soon,,, don’t tell him anything I’ve said,,, allright,, How much is this gonna cost me ???

    Like

    Comment by patricia moran — January 18, 2011 @ 7:02 AM

  8. Does anyone have any suggestions about explaining Epilepsy to a small child. My son is almost 6 and we haven’t told him yet about the seizures. Since I haven’t had many problems in the past we haven’t really talked about it. Most of my seizures have been myoclonic in nature and I have an aura. But the number of seizures and severity has increased and I am worried that I could have one while I am home alone with him. I want him to be prepared.

    Any thoughts or suggestions would be most helpful since I don’t know where to begin.

    Like

    Comment by Tennille English — January 19, 2011 @ 11:25 PM

    • There’s a wonderful book available from Amazon.com called “My Mommy Has Epilepsy”

      http://www.amazon.com/Mommy-Has-Epilepsy-Stacey-Chillemi/dp/1435729102/ref=sr_1_1?ie=UTF8&s=books&qid=1295464670&sr=1-1

      Here are two reviews:

      “I found this book a very easy read, which is important in trying to explain epilepsy to children. To educate children of the disorder is something that might seem like a difficult task, something thats pushed off to the side for a later date.

      However, with this book, it’s a task that doesn’t look so daunting. You can explain epilepsy to your children in language that they understand.” –Reader

      “I found this book very insightful. Although not having epilepsy myself, I think this book is a good way to explain to children about epilepsy. I, myself, learned quite a bit about the disorder from reading it. Being prepared and knowledgeable is the best way to help someone with epilepsy. This book helps children become prepared.” –Reader

      I hope this helps Tennille…

      Like

      Comment by Phylis Feiner Johnson — January 20, 2011 @ 3:25 AM

  9. Hi Tennile,

    You can chek w/ your local library for availability of that book & others. Talk w/ the ‘Research Librarian’. 🙂 I Mite have that Title wrong, but, it’s what cliked into my brain. 🙂 More books recommended for Kids: 🙂

    http://www.epilepsyfoundation.org/local/efneny/books/cfm

    For you: ask about ‘Treating Epilepsy Naturally’ by Pat Murphy. It has been recommended by several of my ‘previous’ members, over the past 15+ Yrs. 🙂 🙂

    Love Candi

    Like

    Comment by candi — January 22, 2011 @ 6:58 PM

    • Thanks, Candi. I’ve been looking on our library’s web site. But I think the Epilepsy foundation web site might hav something useful, not to mention the proceeds go to a good cause. I’ll also check into the “Treating Epilepsy Naturally”. I’m open to anything.

      Like

      Comment by Tennille — January 24, 2011 @ 10:35 AM

  10. Hi Tennile, from the time my children were little I taught how to call 911. I explained my seizures in a simple way that they could understand. When I had a seizure, I told my children. I said, “This is wat a seizure is.”

    It did not take them long to learn and there were times when they did call 911. Children’s brains are growing and learning at that age.

    Like

    Comment by ruth brown — January 23, 2011 @ 1:18 PM

    • That is FABULOUS advice, Ruth!

      Like

      Comment by Phylis Feiner Johnson — January 24, 2011 @ 12:36 AM

    • Thank you, Ruth. I have been so tired lately because of med changes (which I think is also causing thyroid issues) I felt that I needed to try to explain something to my son. He is such an understanding and sweet little boy. I have always been afraid to have a seizure while he is in the room because my sisters were so scared when I had my first seizure and they were older (the youngest was 12).

      Just curious — How did you teach your children to call 911 w/o really calling 911? My seizures so far don’t really require going to the hospital, but I know I should teach him anyway.

      Like

      Comment by Tennille — January 24, 2011 @ 10:32 AM

  11. I taught my children to call 911 w/o really calling 911 by showing them the numbers on the phone and writing down the numbers. They were quick to catch on.

    I think that I had seizures only once or twice that were severe ebough for them to call 911. They did and were not afraid to. They were glad that they could help their mom.

    Like

    Comment by ruth brown — January 24, 2011 @ 10:54 AM

  12. I don’t have much experiance with Epilepsy until recently. I’m learning as much as I can and making sure that family and friends understand what they need to do just in case. It’s amazing how many people don’t know what to do. I mean everyone knows how to do CPR, so why can’t we teach about seizures. Just as important could save someones life. I have even started to train my co workers and friends on what to look for and if they really need to call 911.
    It’s been a tough road but know that there is a light at the end of the tunnel. I do have to say if you are not happy with your doctor then you should change him/her. There are a lot of good ones out there and once you find him/her then it will make things that much better.

    Like

    Comment by Adam — February 3, 2011 @ 12:53 PM

  13. Welcome Adam and I think you’re 100% correct. You might be interested in a new article I posted last night:

    Epilepsy and education…coming out of the closet
    https://epilepsytalk.com/2011/02/02/epilepsy-and-education%e2%80%a6coming-out-of-the-closet/

    Like

    Comment by Phylis Feiner Johnson — February 3, 2011 @ 2:07 PM


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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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