Epilepsy Talk

If you knew someone who had just been diagnosed with epilepsy, what would you advise? | June 10, 2022

I’d advise them to advocate for themselves.

Because there are so many negative, scary, heartbreaking obstacles that they’ll come across out there, one has to be strong…and then some.

What would YOU say?

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Posted in Epilepsy
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15 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — June 10, 2022 @ 9:43 AM

  2. Very disturbed to learn that epilepsy is
    considered a “PRE-existing condition”. Is there anything or anyone lobbying to CHANGE this?!

    Liked by 1 person

    Comment by Anna J Bartlett — June 10, 2022 @ 9:47 AM

  3. I’d advise trying the keto diet before any meds. In my experience most meds are ineffective and alter your behaviour and character.

    Liked by 1 person

    Comment by Yvonne Goodson — June 10, 2022 @ 10:31 AM

  4. To be referred to an epileptologist for treatment! Look into disability. Explore memory issues and depression. And we all need to educate people what to do when we have seizures so that we don’t feel mistreated.

    Liked by 1 person

    Comment by Janet Deardorff — June 10, 2022 @ 1:34 PM

  5. Don’t be quick to believe or disbelieve any doctor. The brain is fluid, and thus your best individual treatment may take a long time to find. I was reminded of that recently in reading the excellent book “A Mind Unraveled” by Kurt Eichenwald about a decades-long horrific experience with epilepsy that he overcame. If he or I had first taken our adult epilepsy directly to epileptologists, how much better the stories might have been.

    Liked by 1 person

    Comment by Deb — June 10, 2022 @ 1:52 PM

    • Wasn’t that a great book? I was lucky enough to meet him at a book signing at Swarthmore. He was brilliant!

      Like

      Comment by Phylis Feiner Johnson — June 10, 2022 @ 7:50 PM

  6. Ultimate question, we don’t want them to deal with all the issues some of us have been through.
    1st refer them to read HERE 🙂 as far back as this goes:) 🙂
    You all said it and is should be the gold standard go straight to a epileptologist or seizure clinic !
    One that has not been included is make sure your”witnesses” someone close to you also knows much of this imfo. at least to the level it will ease some of their fear and to NOT call an ambulance each time you have a seizure!
    Learn the basics of how a brain works or doesn’t work and as someone said how “fluid” it and we are and how we adapt.
    I spent a long time online and in a clinic talking with people who were either have szs. were the witness or are new to having them and the most common link I have is how many have true FEAR of having the seizure itself or had never expressed how they truly felt,thought about all the mental games this can play on us! I would show them to write this down any way they can and how those emotions,feelings also over lap with many ,many other medical issues!
    Find common triggers in yourself, sleep,diet,mental stress, drugs ,alcohol and new ways to change,to adapt.
    So,learn,adapt,limit deep fear and is not the end of the end of the line but also a new door. “Peace Takes Practice” Rick

    Liked by 1 person

    Comment by wichitarick — June 10, 2022 @ 9:22 PM

  7. Having gone throw the tormenting experience of discovering epilepsy & the desperate struggle between denial & cover up to only end up facing & accepting my fate, I would suggest extensive research, candid therapy & deep counseling on the radical changes of life with seizures.
    I believe conquering the psychological struggle is far more vital to cope with neurological disorder than the medical hardship.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — June 11, 2022 @ 5:30 AM

  8. Therapy saved my life.

    Like

    Comment by Phylis Feiner Johnson — June 11, 2022 @ 9:55 AM

  9. Dear Phylis,

    I sent you a response to this latest comment/blog post mentioned below. Did you receive it? It is not showing up.

    Thank you for all you do for us, Phylis.

    Mary Ellen Jacobs

    Pottstown, Montgomery County, PA

    Liked by 1 person

    Comment by maryellenjacobs — June 11, 2022 @ 5:10 PM

  10. How frustrating.

    Mary Ellen, I wish I knew where/what it was. Can you give it a re-think and write back?

    Thanks. And I’m so sorry. 😥

    Like

    Comment by Phylis Feiner Johnson — June 11, 2022 @ 8:16 PM

  11. I wouldn’t treat the person as I have been treated especially since 2011 to now!!

    Stay with a healthy diet if they had one already or were given a different diet to expirement with to make their own only stricter. A work out regime if they have one already… If they’re worried. Ask their doctor or Neurologist. Or as a fitness instructor for the safest/ best way to keep fit. Even Yoga or Tai Chi can help.
    I volunteered a lot until 2 years ago. If it’s possible and safe, why not try “speed walking”?
    Some malls have people speed walking throughout the mall before the mall is open. It’s safer, and should be air conditioned, depending where you live.

    If you’ve had your first EEG, some select few technicians and the doctors can talk answer some questions that you might have about the EEG and if your scared.
    Some are or were pretty nice and could answer questions when you couldn’t get in touch of your Neurologist or Doctor time restraints…
    If you already know that you’re allergic to some foods and spices keep them out, after all it’s your health!

    What I’ve learned for myself is that I need more shade, less sun. No, I’m not photosensitive, though I still don’t recommend Superman the newest on be screen with IMAX or since its on DVD now, if you’re having a bad day of Epileptic seizures have a day/night in. I saw it when it was in theaters on IMAX. I didn’t feel anything wrong until the movie let out, and I walked back to my apartment carefully. I wasn’t so wobbly or scared that I was going to have Epileptic seizures on the way back..
    I know I stumbled to get to the grass. But I was very lucky I wasn’t rushed across the bridge!

    I’ve been trying to find a way to get certified again for first Aid/Cpr/AED.
    May that person had something that they would like to try to volunteer in that’s not violent.

    If you feel as you are safe to, bring a vial or a pill box of your AEDs for the “just in case I have a seizure that I have to go the hospital!”
    Your hospital might not have your AEDs in their storage when the pharmacy is closed. At least you, yourself know that you will have you prescribed AEDs dose.
    It’s that better that you have it with you than being damned for missing a AEDs dose by another doctor from another shift!

    If can download an Epilepsy app that you can put your information on it and keep it updated, and away from cybertrolls that mess up Internet of other people because they can…. Too time on their hands…

    Epilepsy is NOT contagious! Does not make you an “involvent” or a cripple!
    People with small brain cells that are not used positively & productively cause rumors, gossip, lies, and more ignorance to explode and grow like spurs that never get fully pulled off you from walking and/or horseback through trails.
    Or the science spawns under a microscope that move and grow in a Petri dish!

    I can’t say, “suck it up! It will get better!” Because listening to what I’m forced to is too coincidental of adults flipping out, yelling and slamming doors at 03:13hr as I’m typing this and walking around listening for sounds!!
    Disturbing!

    ***
    I knew that I was around healthy or moderately healthy people and an environment by the number of Epileptic seizures that I had.
    I was active.
    Volunteering.
    Working ….
    Eating healthy.
    My family helped me when I was first diagnosed with Epilepsy. I was always thankful for them. Làmh chuidithe a thabhairt do Shiite, at Titmeach🙂

    Like

    Comment by Tabitha — June 13, 2022 @ 3:48 AM

  12. I would advise they get a 2nd, 3rd & 4th opinion. Then I would reassure them their life is not over. Then I would advise them without overwhelming them, to spend every available moment researching all natural alternative treatments before resigning to prescription medications and further to heavily research any prescribed meds (from sources NOT influenced by anyone recieving incentives for the sale of said prescriptions). Finally. to be patient w/people that do not understand, try to inform them, and seek out local epilepsy awareness groups, you would be amazed by how much more you can learn from those w/experience vs “professionals” that have read it from books.

    Liked by 1 person

    Comment by Crystal Ann — June 21, 2022 @ 3:45 PM

  13. Bravo Crystal Ann! You’ve got all the bases covered.

    Here are some articles to bring it all home:

    Before you agree to surgery… https://epilepsytalk.com/2021/09/08/brain-surgery-questions-to-prepare-yourself-2/

    12 Things Your Doctor Won’t Tell You… https://epilepsytalk.com/2020/05/29/12-things-your-doctor-wont-tell-you/

    AEDs…Surgery…and Alternative Treatments… https://epilepsytalk.com/2021/03/21/aedssurgeryand-alternative-treatments-2/

    The Stigma of Epilepsy… https://epilepsytalk.com/2021/05/05/the-stigma-of-epilepsy-2/

    Epilepsy and Education…Coming Out Of The Shadows https://epilepsytalk.com/2021/05/27/epilepsy-and-educationcoming-out-of-the-shadows-2/

    Expanded Guide to Epilepsy Books for People of All Ages https://epilepsytalk.com/2014/08/31/expanded-guide-to-epilepsy-books-for-people-of-all-ages/

    12 Recipes For Happiness — Even If You Have Epilepsy! https://epilepsytalk.com/2022/03/29/12-recipes-for-happiness-even-if-you-have-epilepsy/

    Maybe just one of them can help somebody.

    Like

    Comment by Phylis Feiner Johnson — June 21, 2022 @ 5:14 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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