Epilepsy Talk

What Part of Your Epilepsy Do You Hate Most? | June 14, 2017

You mind 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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  1. i hate it when people think i am just making having a seizure so that i can have people feel sorry for me


    Comment by pooterbear — June 14, 2017 @ 3:21 PM

    • People feeling sorry for you — whether they are, or you think they are — is truly the bottom of the barrel.


      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:24 PM

  2. I hate the underlying after effects that can occur after seizures. (Postictal Psychosis, depression, anxiety, etc).

    Hi Phyllis,

    I was wondering if you have created any articles or research on Postictal Psychosis. I was previously told about it last year after my run in with it. Of course I am still running into it now ever since. I want to try and help educate our community more about the after effects of seizures with more definitive information about it and not just my own experience with it.

    Thank you always for your help in educating our community.

    Thank you,

    Joseph Laxamana
    (808) 391-1894


    Comment by Joseph I Laxamana — June 14, 2017 @ 3:42 PM

  3. i hate the side effects of my medication and my fear of changing to another in case its as bad or worse


    Comment by phil — June 14, 2017 @ 3:47 PM

    • It’s sort of being stuck between the devil you know and the devil you don’t know. But they’re ALL devils. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:25 PM

    • I hate the side effects of medication so I am taking CBD oil. My problem is my epileptologist just believes in drugs. He has me on Keppra 1000 mg. but I reduced to 300 mg. and CBD oil. I will be so glad when insurance pays for it because it is expensive. Mary Jane

      Liked by 1 person

      Comment by Mary Jane Levell — June 14, 2017 @ 5:57 PM

  4. Not being able to drive for 3 months. This is worse than the seizures.


    Comment by Kate Jacques — June 14, 2017 @ 4:09 PM

    • I’m not able to drive for 6 months and have to apply for a new license…. Agree it can be worse than the seizure….


      Comment by deborah — June 14, 2017 @ 4:18 PM

    • I’m in the middle of the not being able to drive phase. I’m hoping to be able to drive in the fall. I don’t like losing my independence, and I’m going stir-crazy. It’s beautiful weather, I can see my car out the window, but I have to depend on my husband to take me anywhere – after he comes home from work.


      Comment by Sherry Smith West — June 16, 2017 @ 11:07 AM

  5. I can’t drive for 12 months after my last daytime seizure – I live in the middle of the countryside – no public transport – I HATE it!!


    Comment by Margaret — June 14, 2017 @ 4:43 PM

    • Well Margaret, you’ve got us all beat. What did you do?

      I kissed up to neighbors. Friends live too far away.


      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:28 PM

      • Sorry folks – I just realised it looks as if I forgot to join in/reply to this last chat! Although my daytime seizures are under control with my Lamictal, my nocturnal ones have now become so frequent again, and are verging on daytime, that my medics have decided once more that I can’t drive – just as if my seizures were daytime ones – and unfortunately I have to be realistic and agree with them!! Over here – and in the UK too – the ban, normally just on daytime ones, is from 12 months after your last seizure so each time you have a seizure, even at 11 months and 29 days, the ban starts all over again at 12 months – is it the same method on your side of the Atlantic? As I said, I live almost literally in the middle of nowhere and my husband has to take me absolutely everywhere – even to get my legs waxed, ladies!!!! It is causing tensions between us too, no matter how patient he tries to be – and I understand. I truly don’t know what we are going to do if things can’t be got under control!?


        Comment by Margaret — June 18, 2017 @ 7:43 AM

      • Loss of freedom stinks. It appears almost all of us have been there.

        And the tension that can follow is just like a double whammy.

        Another kind of punishment, even if not intentional.


        Comment by Phylis Feiner Johnson — June 18, 2017 @ 10:07 AM

  6. Incontinence


    Comment by Marie — June 14, 2017 @ 7:15 PM

    • Ugh. How humiliating that must be. If you don’t mind me asking, what do you do?

      (You don’t have to answer that question if it’s too personal.)


      Comment by Phylis Feiner Johnson — June 14, 2017 @ 7:26 PM

      • Sorry Marie – I meant to reply and forgot. When my seizures were at their worst – before the doctors managed to get any kind of control over them – as I said in another section of this chat, I have late onset epilepsy so was 56 when this started – I am 68 now. During the first 3 years , I had incontinence on a good few occasions – and most embarrassingly – several episodes were of the “double” version!! I was “fortunate” enough to have these in my own home – I was living alone at the time – and to be found by friends – but it was still mortifying – I wouldn’t wish it on any compos mentis adult!


        Comment by Margaret — June 18, 2017 @ 7:51 AM

      • when someone finds me down on the floor and my panties are wet from me peeing in my pants


        Comment by pooterbear — June 18, 2017 @ 8:07 PM

      • 😦 😦 😦


        Comment by Phylis Feiner Johnson — June 19, 2017 @ 9:00 AM

  7. Living with seizures for over 56 years, & since 7 months old being on AED’s, I think the BETTER question can be this,>> What 1 THING or more things do YOU LIKE, about having Epilepsy / Seizures ? I see no advantages or benefits to have seizures for over 56 years & I may never be a seizure free person before I am 6 foot under. When that happens, THAT DAY will be the best day ever, as I know then where I am going to be, and nothing will ever make a seizure happen, & I WILL be healed forever living in HEAVEN. No drugs or side effects there, just a totally healed body & BRAIN, if we have brains in HEAVEN


    Comment by C D — June 14, 2017 @ 7:38 PM

  8. i hate it when people think I amy just doing the seizures to get people feel sorry for me thay think I am making it up


    Comment by pooterbear — June 14, 2017 @ 8:35 PM

    • That’s so unfair — whether they are — or you think they are. It’s rude and ignorant.

      Pardon my vindictive language. It just makes me crazy.

      The only thing that makes me crazier is people who make fun of you having a seizure.

      That’s plain unforgivable.


      Comment by Phylis Feiner Johnson — June 14, 2017 @ 9:22 PM

  9. The realization that I must have just said or done something bizarre because someone’s looking at me as if I’m insane!


    Comment by Deb — June 14, 2017 @ 9:57 PM

  10. Phyllis,
    You have built the most trust-worthy comfort zone to express our deepest concern to the chains of Epilepsy.
    Thank you for your time & dedication for sharing our lives with seizures.
    Imagine being suspected for illegal drug abuse to having grandmal seizures & handcuffed to ambulance & hospital emergency room bed for two days, until friends showed up at the hospital & DEMANDED/FORCED the hospital to release the patient ???
    Now, imagine the anticipation of another dreadful seizure coming & the helplessness to STOP the seizures & the hospital maltreatments on tracks?

    Without your informative, educational, inspiring & uplifting forum, learning to cope the ordeals of epilepsy would have been very frustrating journey.
    Learning & gaining comfort in KNOWING the effects of seizures, now you know why, some of us trust & worship your forum more than the hospitals, who handcuff patients to Emergency Room bed.
    Keep up the excellent mission.


    Comment by Gerrie — June 14, 2017 @ 10:32 PM

    • OMG, Gerrie. Was that you? Sensitive, sensible you?

      That’s too horrid even to imagine — no less conceive — that happening to you, my dear friend.

      If I can be a comfort, then a large part of my mission is realized.


      Comment by Phylis Feiner Johnson — June 15, 2017 @ 7:38 AM

  11. I hate it when people call 911 when it is unnecessary and the paramedics come and make a scene.


    Comment by Soo Ihm — June 14, 2017 @ 11:03 PM

  12. Hi been on tegretol for last four years with awful side effects struggling here and know i need to change to another med has anyone got any suggestions which one to try ..is there any one that is known to have the least side effects ..i have complex partial seizures ??


    Comment by phil — June 15, 2017 @ 4:08 PM

    • I cannot do anything other than agree with Phylis about none of us on here being doctors – it would be very dangerous of us to think otherwise but I can only comment on my own experiences. I have “late onset” epilepsy – started at age 56, out of the blue, and took 5 years to get under any kind of control. I took quite a large catalogue of AEDs without success – and with nasty side effects – before finding that Lamictal works for me. I stress “Lamictal” – as opposed to its generic form, Lamotrigine – as my GP and I found that, for some strange reason, the generic form gave me some side effects which the brand name didn’t!! I am unaware of any side effects (on me) of Lamictal except a degree of dry mouth. The only other AED which didn’t give me side effects was Topirimate (Epitomax here in France) but it, alone, didn’t control my seizures. Don’t know if this will be of any help but thought it worth contributing.
      Phil, I also completely understand your fear of changing drugs – for better the devil you know etc – my nocturnal seizures started again 2 years ago and I refuse to try anything completely new to control them as I am terrified that a new drug will stop controlling my daytime seizures – which my present Lamictal does brilliantly – and so I am only “allowing” the medics to experiment with adding “top up extras” – at the moment they are trying Topirimate – with little success!!!



      Comment by Margaret — June 15, 2017 @ 5:05 PM

      • Margaret, I’m on Lamictal also.

        At first it made me crazy/hyper. But when I changed my dose from bedtime to 5PM and added Klonopin, all was well.

        No side-effects and 99% seizure-free for 10+ years!


        Comment by Phylis Feiner Johnson — June 15, 2017 @ 5:14 PM

      • thanks Margaret had late onset epilepsy too at 53 will do some research on lamictal it helps to hear you have no side effects from it do you mind me asking are you on a very high dose Again thanks for taking the time to respond to me !


        Comment by phil — June 16, 2017 @ 6:10 AM

      • Hi Phil,
        No problem asking about dosage. Yes, I’m on a high high dose- maximum in fact; i.e. 500mg daily. 200mg morning and 300mg evening. Obviously built up to that from 150mg daily – which wasn’t effective enough. No side effects for me.


        Comment by Margaret — June 16, 2017 @ 6:55 AM

  13. Sorry meant to add have terrible depression from it do all aeds cause depression ?/


    Comment by phil — June 15, 2017 @ 4:09 PM

  14. Mine is the uncertainty. I’ve only had two seizures, about 2 months apart, and quickly got put on Keppra which is controlling them. But I’m always fearful of another one. And my son as well is on Keppra, so even at 24 years old, he’s still my baby boy, and I’m always afraid of him having seizures.


    Comment by Theresa Spooner — June 16, 2017 @ 10:37 AM

  15. I agree loosing the freedom to drive is frustrating. It’s been close to 2 yrs since I was allowed to drive but next month I can reapply for my licence and drive around town. I started seizures in my late adult life..


    Comment by deborah harley — June 16, 2017 @ 3:24 PM

  16. Having just gotten a confirmed diagnosis of drug resistant intractable epilepsy I have to say the anxiety is ramped up when I have to go out in public.


    Comment by Tracy — June 17, 2017 @ 10:00 AM

  17. I hate other people’s reactions to my seizures. For instance, had one at Walmart, knocking over a display. When I became conscious, people were standing around staring, some with disapproving looks, or shaking their heads. It’s embarrassing and frustrating.


    Comment by Michele — June 17, 2017 @ 1:20 PM

  18. Never knowing when its going to hit. Trying to hide it at work meetings (which is my whole job – meeting with clients) when I’m in an altered state of consciousness for long periods of time.


    Comment by Jeannette Barber — June 17, 2017 @ 3:50 PM

  19. when people find me on the floor and my paints are wet


    Comment by pooterbear — June 18, 2017 @ 8:08 PM

  20. My seizures started in my lates 50’s. I had to quit my job and stop driving.


    Comment by Deborah Harley — June 18, 2017 @ 8:58 PM

    • That’s a double whammy.

      Losing the financial independence of working and losing the physical independence of driving.

      How frustrating!


      Comment by Phylis Feiner Johnson — June 19, 2017 @ 9:21 AM

    • i hate it when people think that I am making it up just because I want them to feel sorry for me


      Comment by pooterbear — June 19, 2017 @ 1:45 PM

  21. Thank you for writing “falling upstairs!”


    Comment by red2robi — June 19, 2017 @ 9:37 PM

  22. Falling Upstairs 😊 Is a total talent I will agree!


    Comment by red2robi — June 19, 2017 @ 9:42 PM

    • And FEW share it. Just those of us who are privileged.


      Comment by Phylis Feiner Johnson — June 19, 2017 @ 10:04 PM

      • Upstairs, downstairs, sideways – it doesn’t matter sometimes!!! Folks always look at you as if you have had “one too many”!!! My total balance is lousy since my seizures started 12 years ago.


        Comment by Margaret — June 20, 2017 @ 8:13 AM

  23. Margaret, I went to Physical Therapy for 1 1/2 years to improve my balance and it really worked!


    Comment by Phylis Feiner Johnson — June 20, 2017 @ 9:45 AM

    • Thank you Phylis. I’ve just discovered that my right eye is totally not “focusing” – thought to be possibly because the muscles have been damaged by the seizures and I am starting some sessions to try to retrain this. Don’t know if it will change things but anything is worth trying. It’s cover by state insurance over here so nothing to lose.


      Comment by Margaret — June 20, 2017 @ 12:51 PM

  24. Sorry – meant to say that this is thought to be the possible cause of the stumbling/bad balance.


    Comment by Margaret — June 20, 2017 @ 12:53 PM

    • Definitely. 😦


      Comment by Phylis Feiner Johnson — June 20, 2017 @ 1:03 PM

      • Thank you Phylis – am really hoping to see at least some improvment. Will let you know.


        Comment by Margaret — June 20, 2017 @ 1:12 PM

  25. Keep me posted…


    Comment by Phylis Feiner Johnson — June 20, 2017 @ 1:14 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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