Epilepsy Talk

What Part of Your Epilepsy Do You Hate Most? | May 16, 2022

You might find my answer trite: But I HATE falling down and walking into glass doors, walls, anything you can think of.

And my special talent is falling UP stairs.

My legs are a mess, I’m limping along, but refuse to give up.

Compared to others, I know I’m very lucky, but the concussions really stink.

And the anxiety never goes away.

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29 Comments »

  1. Everything, the falling up steps, the seizures, my memory sucks too not to mention the medication.

    Liked by 1 person

    Comment by Robert Nichols — May 16, 2022 @ 9:00 AM

  2. The worry it causes my loved ones. This has caused me a lot of upset and anxiety. Just recently I split from my partner of almost 8yrs. I’m feeling less anxious overall. Getting better sleep. Oddly enough, at the same time I started taking multi-vitamins. Since this life change, ever day has been fit free, bar one. Now I am less worried.

    Liked by 1 person

    Comment by billywest1967 — May 16, 2022 @ 9:30 AM

  3. With only a few close friends and immediate family, if people know I can have a seizure, they want nothing to do with any social relationship. This happened to me this past weekend with in-laws. WIth numerous events of bloody scrapes to knees, elbows, face and a portion of a lip that was twice the normal size after hitting exterior stairs, like you I consider myself very fortunate and press on.

    Liked by 1 person

    Comment by Roy Anthony — May 16, 2022 @ 9:31 AM

    • Do they ignore your injuries, or pretend they don’t see them? Either way, that’s pretty shitty.

      Like

      Comment by Phylis Feiner Johnson — May 16, 2022 @ 9:52 AM

      • I’m sure the 2 you mentioned play into it, but simply people don’t want to be put into a position of having to deal with “my problem” while in their presence. Plus, the uneducated think you have a disease they can catch. You know that tune!

        Liked by 1 person

        Comment by Roy Anthony — May 16, 2022 @ 1:55 PM

  4. The upset and anxiety I cause to other people I know bothers me the most. My seizures have improved this last 4 weeks since 1, improving my sleep pattern 2, starting to take multi-vitamins, 3, Splitting from a long term partner.
    My seizures are falling away in numbers, and my seizure free days vastly outway the days I have them.
    BTW, my ex partner and I are still BFF and we both feel that the split has benefited us both and was the right decision.

    Liked by 1 person

    Comment by Andrew West — May 16, 2022 @ 10:07 AM

    • My “absence seizures”

      Liked by 1 person

      Comment by Peter — May 16, 2022 @ 11:16 AM

      • Congratulations, Andrew. May I make a suggestion. January was not good for me because I listened to too much news about the border crisis, stress over this and other issues. Didn’t get good/enough sleep. Suggestion: turn the TV news off ! I never listen to TV news and it’s made a difference for me.

        Liked by 1 person

        Comment by Roy Anthony — May 16, 2022 @ 2:04 PM

  5. What if that question was WHAT DO YOU LIKE THE LEAST about epilepsy ? After having these seizures & being a RAT to most neurologist from age of 6 years old when I started seeing neurologists, FINALLY maybe 1 drug EXCOPRI is working for me with the VIMPAT I am on. The WORST thing that I HATE is of the fear of OTHERS who would not ever want me to be part of their schedules or plans socially, as I LOVE TO BOWL & can beat anyone, when I am on my game, but THAT is not good enough for them, as next year in the league have bowled in I may just say to myself THE HELL WITH IT, as they are no better than I am because I can have a seizure in from of them 3 times now when THAT HAS HAPPENED. The only times when I was a choice of theirs to bowl somewhere else in a tournament, was long before they saw me in my 1st seizure at the lanes. Yeah, they know what they deal is, I don’t have ALL they have, and I do not DRINK all they drink & alike, so let’s cancel out Davis as any part of bowling in tournaments anywhere but here where we all bowl. And IF I was ever fortunate enough to had been on the PBA that seizures made sure did not happen, I would have had a STRIKE OUT EPILEPSY program on the PBA & all those famous named bowlers of the past & today even would know who I was & still am today. PETE WEBER & MARSHALL HOLMAN would had been the 1st 2 to make sure I was not allowed to have been a PBA bowler in the 1990’s & 80’s IF THEN I thought I was good enough to have beaten them a time or 2. Like the lyric says in the tune of COMFORTABLY NUMB from Pink Floyd,, ”’ The child has grown, the dream has gone”’,,, IIIIII,, have become comfortably numb””’. And when a seizure is over, you do at times feel COMFORTABLY NUMB, but it’s nothing that Pink Floyd was singing about I don’t think.But when it is all over for a day or 2 I think of the 2 songs Don’t Look Back, & Peace Of Mind from BOSTON. & DREAM ON from Areosmith

    Liked by 1 person

    Comment by James D — May 16, 2022 @ 1:18 PM

    • Can’t you bowl now that the EXCOPRI has been successful in mitigating your seizures?

      Or has the train left that station and it’s too late, now.

      Like

      Comment by Phylis Feiner Johnson — May 16, 2022 @ 1:46 PM

  6. Anxiety, sleepiness, and depression caused by drugs. It feels like a curse.

    Liked by 1 person

    Comment by Kathy — May 16, 2022 @ 1:48 PM

    • You’re so right, Kathy. Does your “sleepiness” mean you’re not getting enough sleep or that you are sleepy but can’t get to sleep soundly?

      Liked by 1 person

      Comment by Roy Anthony — May 16, 2022 @ 2:17 PM

  7. Im there with all the replies! I hate the damage it does…. preventing me from eating solid foods or using mouth wash!

    I used to get up early to prepare for the market but most of my seizures happen in the morning so now I take my meds and then stay in bed for a few more hours so that I feel safer when I do get my morning started! But late mornings make things socially tough!

    Luckily my best friend is a firefighter, and he grew up with another friend that has seizures so they dont freak him out at all…. he knows how to handle them and keeps me safe! Unfortunately, he just moved into another place and now I have to find a new roomate….. another thing I hate about my seizures! HAVING to have a roommate! It creates a vulnerability that isnt easy to deal with!

    I dont feel safe taking a shower or sitting in my hottub without a “babysitter” 😦

    I hate that everything is a hazard! I cant use ladders or go onto my roof to clean it or the gutters….. extra money spent to have someone else do it!

    Driving is scary and I have a perfect record! But if something ever happened and I hurt someone else, I dont know how I would live with myself!

    I do dog behavior work and have to work at the clients home to make solid healthy changes but driving to their home is a serious risk so that limits my clientele unless I have an assistant to help me! But then I have to charge more so that I can compensate my assistant!

    I just feel like I have all these blocks in my way due to my seizures! Ive studied, prepared for, and dreamed of hiking the Appalachian Trail for over 25 years…… not anymore!

    Havent talked to my mother in over 12 years…. *shrugs*….. loneliness, anxiety, stress, physical pain, worry….. it all just sucks!

    Liked by 1 person

    Comment by Aaron Holmes — May 16, 2022 @ 3:16 PM

    • Sounds like a compendium of problems…

      Zolt has nocturnal seizures, so, as he optimistically says “he’s ready to face the day.” (Not a direct quote.)

      I haven’t spoken to my mother in 18 years. The ignorance and the denial finally got to me. (You’d think I’d get over it. Nobody would say the “E” word for 51 years. That’s with a psychologist as a step-mother and a surgeon as a step-father.)

      I became a freelance writer, because I was tired of hiding behind closed doors.

      And yes, my first seizure was in the shower and I almost drowned.

      Ain’t life grand? But happily, we have each other. And, to me, that’s a BIG plus.

      Like

      Comment by Phylis Feiner Johnson — May 16, 2022 @ 4:21 PM

      • You are absolutely correct Phylis!…. with all the Pandemic work from home stuff going on Ive been working on expanding my coaching business to online work helping people achieve their goals and dreams!

        I also joined the Williams Fire Department Support Group which is an administrative position, helping with fundraising events and keeping track of funds, recruiting more members, etc! I was voted in at the last meeting and of course I wanted to be completely honest about my health situation so they knew what they were getting into by including me! And they were still very happy to have me!

        Bob Melvin, famous Baseball Coach, said a couple years ago in an interview, “If you put it in play, something good can happen!”

        As well many famous entrepreneurs and investors have said, its never about how we fail, its about how we deal with that failure that makes all the difference!

        Thanks again for all your amazing information and support Phylis 😀

        Liked by 1 person

        Comment by Aaron Holmes — May 16, 2022 @ 5:28 PM

  8. Aaron, you are a living inspiration. That you for being part of our “family”.

    Like

    Comment by Phylis Feiner Johnson — May 16, 2022 @ 5:46 PM

    • WOW!…… what an honor, thank you for the compliment Phylis!! Glad to be here! Whenever I run into a person where I live that has seizures or has a family member that has them, I always tell them about you and this group!!

      Thank you again!! *HUGS*

      Liked by 1 person

      Comment by Aaron Holmes — May 16, 2022 @ 6:13 PM

  9. After learning to accept the tormenting ordeals of having to live with seizures the hard way, the postical part of my seizures gets me disoriented, confused, frustrated, angry & belligerent until the whole neurological storm is over & I regained full consciousness.
    While the whole episode gets me to be embarrassed at myself, it hurts to know my family & friends have to walk in my shoes & I can’t help them to avoid my fate.
    Therefore, thanks for asking a very critical question, but unfortunately the psychological agony seems more painful than the physical ordeals of seizures.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — May 17, 2022 @ 5:08 AM

    • Some people say they’d rather have the seizures than the symptoms. Does that make sense?

      Like

      Comment by Phylis Feiner Johnson — May 17, 2022 @ 8:44 AM

      • Yes Phylis,
        Knocked out unconscious knowing nothing about what’s going on, I totally agree with the people who say that they would rather have the seizures than the tormenting symptoms.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — May 17, 2022 @ 1:44 PM

  10. As I read and reread these honest comments the thing I hate – emphasis hate – about epilepsy is that it still gets to us. And thank God we can share that in a place where others can too; if not by writing that in the comments, by reading and perhaps nodding our heads in agreement. So, thank you, Phylis for giving us a place where we can safely share our weaknesses.

    As I went through the comments once more, I just kept nodding along especially coming across Aaron’s comment “it all just sucks.” It really does. It really does.

    So to make it personal: and call me petty but maybe that is what I hate about epilepsy the most – when I finally mustered up the courage to do something to stop these seizures, I asked my epileptologist to approve a surgery in order for Medicare to pay for it, in which he did. I actually got on a cancelation list for the VNS surgery.

    And then it happened; I was in. There was a cancelation. With no hesitation, I accepted. Medicare agreed to pay for the surgery and an angel of sorts agreed to pay the co-pay. The surgery happened with success. Two epileptologists talked so that I would have the VNS programed on a local level of 20 minutes away instead of having to get back and forth to a hospital three hours away. It was all going forward. I was all built up. Perhaps you are too.

    To make this long story short, when I get to the office to check in, the Receptionist asked me to sign in and then fill in some papers. I filled in everything and also told her why I was there. “Oh, he doesn’t do that on Mondays.”

    And that got to me. It actually did. When they took my blood pressure it was noted that it was on the high side. I was eventually seen by this other epileptologist.

    Perhaps others can relate that it can even be the petty stuff that we just hate the most.

    Liked by 1 person

    Comment by George — May 17, 2022 @ 11:28 AM

    • George, we can share our weaknesses and our strengths here. Not to mention our frustrations, which I’m sure countless of our Epilepsy Talk family share.

      I’m sorry after all you went through. You had to get an insensitive slap in the face. Like “who really cares?”

      What the hell did he think you were there for? A poetry reading?

      Like

      Comment by Phylis Feiner Johnson — May 17, 2022 @ 12:11 PM

  11. Seizures happening unexpectedly, out of nowhere, in public places.

    Liked by 1 person

    Comment by Alan Bishop — May 17, 2022 @ 11:51 AM

    • Tbh that’s when I pretty much get mine. In my house I just say (seizure mode) if I do happened to fell 1 coming on

      Liked by 1 person

      Comment by Kim — May 17, 2022 @ 11:16 PM

  12. I hate the empty hollow feeling. I hate feeling the dementor just sitting there waiting to suck everything out of me.
    I hate my constant neck and back of the head aches.
    I hate the seizures. I hate that I cant communicate or move for a bit after.
    I want to drive. I want to pig out on a box of chocolates and have a drink without worrying about how the increase in my sugar levels and how that could make me fit.
    I do however love my life. I have a good one. Great family and friends. Si I shouldn’t complain.
    50 years ago we wouldve been in a mental asylum. At least we are freeing! Good day!

    Liked by 1 person

    Comment by Tracy — May 17, 2022 @ 6:09 PM

  13. oh, everything! The fact that it can happen at any time while I’m sleeping is awful.I can fall from the bed when I least expect it, Agonizing headaches for hours, no appetite, lost for words (literally), dizzy, weak, missing work. It just ads up into one big pile of… 😉

    Liked by 1 person

    Comment by kate — May 18, 2022 @ 1:11 AM

  14. Geez, What to hate about living with Epilepsy??
    1, As stated before having the Seizures in public places and having them been witnessed and or joked about where I was found … Or ignorant people still saying/yelling that “you’re Drunk/stoned!” Or on the phone to emergency as they say that I just fell.
    The tons of injuries that I had.
    The blood loss.
    The more people that take advantage of me because “she’s disabled!”
    Where I am they break& enter my room and still steal! They’ve been a game called, “I’ve stole your email address because I read minds!”
    They’ve even known who stole my apartment…
    Every 6 Friday’s, I’ve had Epileptic Seizures!
    My last seizure was tonight.
    Cyberbullying, harass, bully MailFraud all the above because of my Epilepsy and their taking advantage of me. Not getting mail for 17years that was addressed to me already opened, delivered by break & entering and trespassing and stealing mail that was already in my then apartment from best friends, my families and my then fiancé(is he still?!) they stole their letters used the numbers and emails addresses, even Military addresses that I, myself had full permission to use ….
    As for these thieves? They harassed my friends, former employees that I worked with and volunteered with and heresy from rumors that I’ve been hearing for years these people have told my family that I’m “dead!”
    Also looking for something 💵🤑🤑they 🤑💵can’t get from me.

    Currently I’ve got staples in my head from two Epileptic Seizures.
    On my return I went to do something outside my room, when I returned my patient discharge and other forms were gone as they were together.

    Isn’t this against my Human Rights and Trespassing?!
    No one knows about CyberCrimes where I am if they did … The doctors if it weren’t for Covid-19, they know that power surges, poor electrical areas, and of course what their reading.
    Again when I was forced in the city there were too many people that said out loud, “we can read minds, can’t you?!”
    It was creepy then and tonight I heard something too similar to that quote, and these ignorant people that want to learn nothing about Epilepsy say that and my Anti-convulsants are “mental health” or Psych pills!

    Did I mention that the monster that Sexual Assaulted me did it because I live with Epilepsy!
    The creep that Raped me did it because it possibly because he was stoned and he listened to the how to Rape, from the apartment of thin walls that the police DON’T want to talk to me after I did everything that I was supposed from the night of!

    Where’s MY justice??

    Like

    Comment by Tabitha — May 18, 2022 @ 2:09 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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