Epilepsy Talk

Epilepsy — Advice and Insights | June 30, 2018

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?

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  1. I have learned a lot from my struggle and the only advocate that I can rely on is my self because no one knows what a person goes through and less they are in their shoes and sometimes you got to yell!! for what you need to have I have learned to take one day at a time and to conquer the problems in that day So don’t get discouraged and to remember you your self are your best advocate..

    Liked by 1 person

    Comment by maryleeparker — June 30, 2018 @ 12:09 PM

  2. I have learned that there are more ways than pills to control seizures. What you put in your body and how you treat it are not a separate thing from what goes on in your brain.
    You need sleep. You need to mitigate the stresses of life (in whatever way works for you). You need some exercise (doesn’t have to be running marathons, just movement).
    Above all, what you put (or don’t put) in the tank has everything to do with how a car runs. Same for your body.
    So, first cut out the junk. The booze, the coffee, the cigs, the gluten, the sugar, the packaged processed crud “foods” like Doritos and Twinkies. If you can’t read every ingredient on the label without a chemistry degree, it’s not food. And the best foods don’t even need a label. Steak, broccoli, salmon, apple.
    Then if you want to take a deeper dive into health, research the ketogenic diet. It has a centuries long history of successful use treating epilepsy.
    If you want to take an even deeper dive and try what has cured my seizure disorder, I ask that you please research the carnivorous diet with an open mind.
    meatheals.com is a good place to start.

    It’s your body and your less than perfectly functioning brain is an integral part of that body. Take back control of how it works. It’s your’s not the doctors’.

    Liked by 1 person

    Comment by paleobird — June 30, 2018 @ 12:48 PM

    • Point well taken.

      You literally are what you eat.

      Thanks Paleobird.


      Comment by Phylis Feiner Johnson — June 30, 2018 @ 1:38 PM

      • Yep, you can’t pour corn syrup into your gas tank and then stand there wondering why your car isn’t running right.

        Liked by 1 person

        Comment by paleobird — June 30, 2018 @ 1:54 PM

  3. I am blessed to not have epilepsy, but cursed because my beloved younger brother does. He, like Mary Lee Parker, has often said there is NO ONE whom he can talk to about the disease unless they’ve walked in his shoes.

    He is 59 and has had seizures since he was 41. Being 12 when he was born (and female), I thought he was my child — and treated him that way. To watch him over those years try to communicate with four neurologists, adapt to numerous changes in meds and suffer a steady decline in employability breaks my heart.

    Believe me, I GET the stigma of epilepsy, even as your blog has revealed with neurologists who have seizures who are fearful of telling other doctors, so why are there not support groups for epilepsy? Could not the anonymity of a group similar to AA, Al Anon or Narc Anon be beneficial?

    Liked by 2 people

    Comment by Paget Bridges — June 30, 2018 @ 12:54 PM

    • I hear you.

      There are support group groups regionally, but many people can’t get to them.

      Adult Epilepsy Support Groups


      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 30, 2018 @ 1:35 PM

      • I’m sending this really late, in January 2029. I go to the Epilepsy Foundation support group each month. Every other month we have a guest speaker. The other months we share our experiences with each other. A lot of people go who are connected to someone who have epilepsy, not nessarilly themselves. It’s nice to hear their point of view as well.


        Comment by Debbie — January 14, 2019 @ 5:17 PM

      • I also go to a support group every month that’s run by the Epilepsy Foundation of Eastern Pennsylvania.

        There’s a lot of sharing that goes on: insights, caring and friendships, that last long after the 2 hours are through.


        Comment by Phylis Feiner Johnson — January 14, 2019 @ 5:33 PM

  4. Thank you, Phylis. What a great resource you are.

    Liked by 2 people

    Comment by Paget Bridges — June 30, 2018 @ 8:14 PM

  5. For most of my life, I knew nothing about Epilepsy until being brought to few hospitals & kept waking up in ERs & told that,,, “you’re having seizures”.
    Having no experience, the news became too difficult to believe & the fate becoming too hard to accept, I simply kept rejecting the diagnosis.
    Finally, the employer requiring medical history for “Health Insurance”, became the ultimatum to seek MRI test to clarify the “new numerological disorder”, I never had before.
    The Hospital Neurology department video recording two of my grandmal seizures in a week & the MRI tests became the most shocking moments of my life, forcing myself to accept the new neurological disorder & start looking for ways to cope & learn to live with Epilepsy.
    And for the last 20 years, life becoming an arduous struggle to cope with Epilepsy & seizures, Darwin’s theory “SURVIVAL OF THE FITTEST”, turned out to be my logical process to learn more about seizures & how to overcome Epilepsy.
    Thanks to sharing your experience, I learned a lot from all you to make it this far.
    Now, I know that accepting the fate is much more harder, than coping with seizures & surving Epilepsy.
    Best wishes to all.

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 1, 2018 @ 7:34 AM

    • “Accepting the fate” comes with so much fear, trepidation, and anticipation.


      Then, when the inevitable comes, the storm begins.


      Comment by Phylis Feiner Johnson — July 1, 2018 @ 10:02 AM

      • Exactly right Phyllis,,, waiting & waiting for the unpredictable fate, makes it more complicated & difficult to accept the inevitable.
        Therefore, since giving up is NOT an option, the struggle got to go on.

        Liked by 1 person

        Comment by BahreNegash Eritrea — July 2, 2018 @ 6:05 AM

  6. I have learned the best way to keep seizures away is by staying positive and keeping stress as far away as possible. Stress is the the number one seizure factor and I live by the saying “make the most of every day.” I know no matter how bad my situation may get there is always someone out there who can’t even get out of bed or go to the bathroom by themselves. Another thing that’s worked well for me is I have been on the ketogenic low carb/ high high fat diet (20 carbs a day or less, no sugar, no flour, no starch) for a year and 3 months now; I went from grand mal seizures to absence seizures.

    Liked by 1 person

    Comment by Melissa Reed — July 1, 2018 @ 4:26 PM

    • Words of wisdom and good advice.

      Also, I applaud you for your discipline. The Ketogenic Diet is a difficult one.

      (I’m not as disciplined. I’m a Modified Atkins Diet lady, myself!)


      Comment by Phylis Feiner Johnson — July 1, 2018 @ 4:51 PM

      • Melissa, that’s awesome. I really love to see someone taking the reins back in their life. We are not weak helpless creatures dependent on the doctors.
        You did some research and made a plan for yourself and made it work.
        Much the same thing happened to me when I went keto. I went from tonic clonics to partials.
        Since I have gone carnivore, even the partials are gone. I’m at 50% of the meds I used to take and working on cutting back the rest.

        We do not need to sit down and “accept our fate”. We need to stand up and change it. It can be done.

        And Phylis, please not another word about how hard it is to do the keto diet how disciplined one has to be. Really? It’s easier to have a bunch of seizures or be zombied out on meds than it is to eat eggs for breakfast and a steak and salad for dinner?

        Liked by 1 person

        Comment by paleobird — July 2, 2018 @ 12:44 PM

      • Ok. Ok. Point well taken. 🙂


        Comment by Phylis Feiner Johnson — July 2, 2018 @ 12:47 PM

  7. My Epilepsy started the day after half of my 4th grade class fell down on top of me, in all of the places, a church. My first Simple Partial Automatic seizure happened the very next morning, and the first Complex Partial was months later. But the one thing I learned that’s helped me the past 37 years has to do with how my class acted after they saw me have a seizure. They started making fun of me, until one teacher, who’s daughter had Epilepsy, stopped them. She told me that I was going to run into a lot of people like that, and that they were just hidding their fear. She said to just think of it as their loss, and not mine. Also with my Epilepsy turning out to be Irrifractable, I came up with a phrase that’s helped:
    “For there to be a problem, there has to be an answer.”

    Liked by 1 person

    Comment by David Jensen — July 2, 2018 @ 11:59 AM

    • Great advice. And hooray for the teacher.

      I had a seizure standing on the top of a bleacher and sent three rows of poor other kids tumbling.

      (Of course, I was at the top because I was so tall!)

      Liked by 3 people

      Comment by Phylis Feiner Johnson — July 2, 2018 @ 12:17 PM

  8. I was taken by surprise at the age of eighteen, but neither I nor anyone else recognized it as epilepsy at the time. (One doctor thought I might need a psychologist!) It was nine years before I went on medicine, and another thirteen years before I had surgery. It wasn’t entirely successful, and I’ve realized that I just need to do more of the research myself. Doctors are too busy to investigate supplemental options. I haven’t identified my triggers or anything that can be guaranteed to help after all of these years, but I’m treating my brain to a healthy lifestyle in the meantime and have nothing but very occasional auras.

    Liked by 1 person

    Comment by Deb — July 2, 2018 @ 12:30 PM

  9. For those suffering from epilepsy maintain a dictionary and keep note down timings of seizures, the way of reaction from friends, relatives, colleagues would be helpful. Medicines reaction on the studies, work and choose your work on the basis of doctor advice

    Liked by 1 person

    Comment by Yusuf — July 2, 2018 @ 12:34 PM

  10. Hi folks – This is on the subject of VNS. I’m not sure where to leave this question/comment so I’m trying here!! Having been on Lamotrogine (Lamictal) for 12 years (late onset epilepsy sufferer at age 58 – now nearly 70), the docs having had to try, at the very beginning, for 4 years, to find this drug worked pretty well for me. Then, 2 years ago, out of the blue, the stupid seizures decided to rear their ugly heads again very frequently and forcefully – mainly, although by no means entirely, as nocturnal ones. The doctors (my great GP and 2 specialists) have tried for the last 2 years to find another drug to use as an add-on to the Lamictal, but without success (either ineffective or with massive side effects). I am very reluctant to give up the Lamictal entirely as it has been successful control as a base for my seizures in general. They have now said that there is no other “group” of drugs left to try so they are offering me VNS (vagal nerve stimulaltion) but I am very nervous about having “wires stuck into my brain”!! Do anyone have any experience/knowledge about this – I’d be grateful to hear anything from any of you out there. Thanks a lot.

    Liked by 1 person

    Comment by Margaret Hay — July 20, 2018 @ 6:18 AM

    • Hi Margaret,

      I think you’ll find the article below to be helpful:

      Vagus Nerve Stimulation…Is it for YOU?



      Comment by Phylis Feiner Johnson — July 20, 2018 @ 7:17 AM

      • Hi Phylis – thank you for your link, which I have just read! Not because it didn’t interest me but because I am not long out of hospital after a 2 week stay, My symptoms were violent collapses where I just appeared be poleaxed to the floor unable to get back up as my brain messages were not getting as far as my lower body muscles. It was truly very frightening. After 3 weeks of this, getting worse and worse, one day it was so violent that we asked our GP to get us an ambulance for A&E in our nearest city hospital. The thoughts were that it was being caused by the introduction of yet another “top-up” AED to try to help my returning seizures. Anyhow to try to cut this sage short it now turns to have been caused by a cluster of small brain haematomas caused by the medication I had been taking for some considerable time as an anti-coagulant safeguard in conjunction to my cardiac arrhythmia!!! Fortunately, it appears that the doctors believe that they are of a type that will disappear over time and they are changing my anti-coagulant meds – thank goodness for that – apart from the clots, you wouldn’t want to have seen the size and colour of the bruises these drugs caused – some were jet black patches as big as 12″ long and 8′ wide!!!
        Anyhow, the reason for this saga being a part of this former comment of mine about VNS is that although I had taken the decision that I would actually go ahead with it, now they will NOT do it due to my recent cerebral problems. It is unknown whether I will ever be considered suitable candidate for it. A bit of a blow of course but better safe than sorry! The lesson from this to everyone is that it almost certianly will not be worth you starting to consider VNS if you have had any relatively recent cerebral or cardiac problems and please make sure your doctors are aware of ALL of your medical history – don’t miss anything out of any information you give them – it could be dangerous.

        Liked by 1 person

        Comment by Margaret Hay — August 8, 2018 @ 3:33 AM

      • Oh poor Margaret!

        Well I’m (not exactly) glad it was your anti-coagulant meds. But those bruises must be doozies.

        And then the added disappointment of the VNS. I’m so sorry.

        But yes, your advice is golden.

        “Please make sure your doctors are aware of ALL of your medical history – don’t miss anything out of any information you give them – it could be dangerous.”

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 8, 2018 @ 9:00 AM

  11. My biggest advice is to be comfortable with a tough situation. Seizures result in having to take medication that has the most uncomfortable side effects that people cant even see (internally). Medication has been the hardest part of my journey. I have done a few things to help cope with it though. In my blog post https://selfimprovedfitness.wordpress.com/2018/06/28/how-to-handle-being-on-keppra-seizure-medication/ I explain how I have been able to cope being on Keppra after being on tegretol in the past and now keppra.

    Liked by 1 person

    Comment by Ahmed Jabai — July 22, 2018 @ 2:56 PM

  12. For me I found keeping seizure diaries to be useful, they helped me to avoid my triggers.
    I’ve also learnt to relax and try let go of the small things.
    I’m over 5yrs seizure free and I thought my life would be perfect, but the stigma still followed and it hurt. It alerted me to how much awareness is still needed and encouraged me to start my blog.


    Comment by Becky — August 20, 2018 @ 5:09 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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