Epilepsy Talk

Anger and Epilepsy: WHY ME? | June 24, 2017

Suddenly, you’re feeling edgy. Lashing out at loved ones for no reason at all. It’s not anybody’s fault. It’s that old familiar enemy. Epilepsy. Again.

Why me? Why now? It’s not fair.

No, it’s not, but it’s part of our physiology. Since the brain is control central, sudden changes – like a seizure – wreak havoc. And you get even angrier, for what seems, like nothing at all. The outbursts, crying, come out of nowhere.

But they’re giving you a warning.

I used to get my red alert when my mouth filled up with saliva. (It was disgusting.) I’d hit the floor and close the door – if I could. Of course when I was drowning, or falling down the stairs, or walking face first into a wall, there wasn’t much I could do. (Except have my nose repaired twice.)

And no one around knew what to do.

My parents refused to use the “E” word, which made me furious. People treated me like I was some kind of pariah which didn’t make me feel warm and fuzzy either.

Guys never called back for a second date. (And I was pretty!)

The Dilantin made me feel like a zombie. I even went into a coma once.

And my beautiful, long hair was falling out.

Was I angry? You bet!

I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.

One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.

So I quickly had to make up some lame story. I was mad. And exhausted. I couldn’t even have a seizure in peace.

Epilepsy was my dirty secret. Like it or not…

Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was floored and said to myself: “He’s a keeper!” And he has been for 37 years.

Then, a few years ago, I almost died. My heart stopped. I was in a coma and on life support — followed by 5 days in the hospital — until I was transferred to another hospital for rehab, and then 4 weeks of out-patient.

But I still couldn’t button a shirt or tie my shoes, no less find the keyboard. Exasperation turned to tears.

I was useless.

Yet there was certainly time to think. (Almost dying can certainly change your perspective.) And I realized I was one of the lucky ones. After all, I was still alive.

No, I wasn’t mad any more. Instead, I found the perfect outlet. I ditched my day job (I had my own freelance writing business for 25 years) and said bye-bye to my anger. And I became a full-time epilepsy advocate.

“Don’t get mad. Get even!”

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Posted in Epilepsy
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24 Comments »

  1. To get even does not ever work for me, but GETTING ONE BETTER DOES. Always knowing that since 5 months old that I have had seizures am 57 today, many times I thought to do some crazy things, yet the SEIZURES KEPT ME FROM DOING ALL THAT CRAZY STUFF, because I was always afraid if the seizures would be more & worse. So I said NO, to the other drugs, alcohol, & other junk offered to me, as I remembered in those days of R&R tunes ARGENT with HOLD YOUR HEAD UP, among others that was music with inspiring words to it. So I try to Hold my head up, & Don’t Look Back, I’m much too strong not to compromise, But I can be strong,, oh yes I will. Still I hate having seizures & the fear of one when I know they can happen, or that time when 1 is starting to happen.

    Liked by 1 person

    Comment by C D — June 24, 2017 @ 8:26 PM

  2. Last week, I had a steel plate removed from my right foot. I’ve felt much better. Even the three Auras were not full-blown Parcial Complex seizures. I considered this a “Positive.” Then today, I decided to take an *extra 50Mg. Zonisamide, just to be sure. And later, today, “BINGO!” I had a REALLY bad one! Was doing stuff around the house. I told my husband, “I’m not feeling good.” This means, “Look out! One is getting ready to try and ‘take over!'” And it did! I don’t know how long it was before “coming out of it.” My husband said I was in Post-Ictal Confusion for about seven minutes after the “blackout.” Much later, I asked him if I’d finished folding the clothes and put them away. I was sitting on bed and separating the clothes when “it happened.” Tonight, there was a monthly music jam we attend. I still mustered-up the strength and went. Why? *One person called, leaving a voice mail that she’d been praying for me and was looking forward in seeing me there! We stayed about 3 hours. It was my 3rd day since getting stitches removed from my foot! Today, I was wearing socks for the first time in years! Did I have “fun?” For a brief time. Other challenges–I play harmonicas and Tambourine. And I’m a female. Those who “play strings” stand up to the mics provided while I sit in the back, usually alone. No mic given to me! Today, two other people joined me. Guess who was *the LAST person asked to play a song of choice? You guessed it! To be fair, two other females were there. One playing a synthesizer and the other, *strings. After the Accordion Player and Violinists left, I took this time to do the same. The loud music bothered my husband, anyway. *One person said “Bye” when I was leaving. The others were in their own world. Until next month—.

    Like

    Comment by EJ Parker — June 24, 2017 @ 10:16 PM

    • Ouch EJ, I hope your foot feels better. Because seizures or not, you still sound in fine fettle, letting nothing stop you. Grab that mic lady and play!

      Like

      Comment by Phylis Feiner Johnson — June 24, 2017 @ 11:32 PM

  3. Phylis I admire your fortitude and dedication and that of several others that have contributed to this web site in the last few years. Your experiences remind me that my own experiences while bad could certainly have been much worse.

    Thank you.

    Like

    Comment by Michael H — June 25, 2017 @ 7:29 AM

    • Well said, Michael. Thank you for the compliment and to everyone for all the struggles, wisdom, generosity and care they have chosen to share.

      Like

      Comment by Phylis Feiner Johnson — June 25, 2017 @ 10:06 AM

  4. Thanks for sharing the painful details. Your story is a fantastic reminder of my own ability to endure, to climb the hills, not be overtaken by epilepsy!

    Like

    Comment by Suzanna Price — June 26, 2017 @ 9:56 AM

    • I think we have ALL been there at some time or another! That’s why we need each other. To listen, advise, help and share our own experiences!

      Like

      Comment by Phylis Feiner Johnson — June 26, 2017 @ 5:14 PM

  5. I lost so many friends through my short fuse, and my brother no longer keeps contact, my dad just doesn’t understand. Now I’m off Keppra and on it’s derivative Briviact (does the same job, but without mood swings, rage etc) I’m a completely different person. No longer lose it any more, have lost weight, and feel so much less emotional, with excellent seizure control. Until there is more exposure given to epilepsy, there will always be this fear and ignorance from society. Maybe one day my family will understand that I do not have “selective memory”

    Like

    Comment by Elaine Howell — July 2, 2017 @ 5:11 PM

  6. I never had a life so why do people bitch about having a few seizures?I’ve never driven, had surgery,VNS none of them worked for me;people are so weak and its been all my life.

    Try having to put up with uncontrolled seizures all ur life .

    Belinda

    Like

    Comment by Belinda — July 24, 2017 @ 11:30 AM

  7. Another reassuring article and sadly one I could completely relate to, having upset my father and brother with arguments, and losing friends over the years, one accusing me of having “selective memory.” I have always tried to keep those close to me aware of all reading material out there, that will help to understand my epilepsy and my memory problems, but they still don’t understand, very frustrating.
    I can’t help thinking that the British media could help this by putting out documentarys and articles about epilepsy, this year, every Neuro condition has been featured on radio and TVs during prime time, but epilepsy misses out every time. My mood is much improved now that I’m free from the dreaded Keppra, I’m gradually making new friends, and am a much calmer happier person, fingers crossed it continues. 🤗

    Like

    Comment by Elaine Howell — August 3, 2017 @ 12:38 AM

    • Yes, education is key. Both to those around you and society at large.

      Things proceed very slowly here but you have to be your own advocate.

      That means standing up to your family, too. Hard as that may be.

      I’m so happy you’re making new friends. That’s the key.

      To be happy and a part of real relationships.

      Like

      Comment by Phylis Feiner Johnson — August 3, 2017 @ 9:39 AM

  8. Reblogged this on Karen's mixed up mind.

    Like

    Comment by karebear1967 — August 28, 2018 @ 10:02 AM

  9. Phyllis you have been VERY HELPFULL! Not only have I had to deal with neurologists, who said that my Epilepsy was either Psychological or Non-Epileptic just because it didn’t show up on the EEG, which I still do not believe after having had to undergo a Left Temporal Lobe Lobectomy. But I do find the hardest part about Epilepsy, is the frustration. Having to quit college because my medications made it hard for me to study, losing 2 jobs because of it, never having had a driver’s license and even though my family is very helpful, watching them be able to come and go as they please, while I can not. But the hardest part has been watching friends be able to move on with their lives, or become afraid of me after seeing me have a seizure.
    Along with all of this, my body has been slowly getting over what almost seemed like a Toxic Reaction, after Johns Hopkins quickly made a change in my medications, and put me on Vimpat. Which is a time release version of Dilantin, and I almost had a Toxic Reaction to that back in the 90’s. All of this is just another bit of frustration towards the neurologists. But one thing that I find helpful is to play a Harp program on my Smart Phone.

    Like

    Comment by David Jensen — August 28, 2018 @ 1:58 PM

    • Harp program?

      I also went toxic on Dilantin in the 60’s, before blood level tests and monitoring.

      Not a pretty picture! 😦

      Like

      Comment by Phylis Feiner Johnson — August 28, 2018 @ 2:03 PM

  10. I needed this this morning!!!

    Like

    Comment by Michelle Hembra — August 29, 2018 @ 11:00 AM

  11. Phylis Feiner Johnson, the only time I feel edgy, regardless of whether or not it is displayed, is if I feel like my time is being wasted with irrelevant things. Unless I am forgetting a certain detail about something very specific, if I am told something repeatedly that I already know otherwise, I feel like it is an unnecessary waste of time, as well as inefficient.

    Like

    Comment by Jeffrey Liakos — September 9, 2018 @ 10:32 PM

  12. I have had epilepsy now for 36 yrs and it is controlling my life to the point where I can’t believe that my life isn’t worth living anymore😢 ! It’s sad to say that even though in the last 2 yrs I have met and got engaged and planned out a wedding for nxt yr to a wonderful man, I feel that I cannot burden my partner with my health anymore. He went through the process of nearly losing me last year when I had 12 seizures one after the other(status epilepticus) and on top of that a chest infection 😢he wasn’t sure if I would make it. He suffers with health problems too which doesn’t help situations,but I must admit he is very caring and loving x😊I have recently seen a neurologist and he has suggested taking me off Lamotrigine and introducing me to Epilim because now as well as having Idiopathic epilepsy, I have been diagnosed with juvenile epilepsy. If I go on Epilim this means that me and my partner can’t have a family which has put us in a big dilemma 😢Thank you for listening.

    Like

    Comment by Nikki Burton — September 21, 2018 @ 4:26 AM

    • First of all, don’t throw the baby out with the bathwater. It sounds like you’ve got a real keeper.

      I know because I’m in a similar situation. But I’ve been happily married for 38 years.

      As for meds and starting a family, tell your neuro your wishes outright.

      There are a zillion drugs out there, surely there must be one that doesn’t limit your pregnancy possibilities.

      The best rule is to use the single medicine that is most effective in treating your seizures, but with some bias toward the newer FDA category C antiepileptic drugs such as: Neurontin, Topamax, Zonegran, Trileptal, Lyrica, Keppra and Vimpat.

      And also, these may help:

      Pregnancy Registries

      Several pregnancy registries track safety of AEDs. Participation is free and the registry will both provide you with information and help the epilepsy community to better understand the safety of AEDs during pregnancy. It’s a good idea to contact one of the registries if you have epilepsy and are pregnant. A list and links can be found at:

      The Antiepilepsy Drug (AED) Pregnancy Registry http://www.aedpregnancyregistry.org/

      North American Pregnancy Registry http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medications-and

      The best of luck to you, Nikki.

      Like

      Comment by Phylis Feiner Johnson — September 21, 2018 @ 10:42 AM

  13. Phylis Feiner Johnson, I am a very tolerant and patient person for the most part. The only thing I have very little patience for is being reminded of something I already know with much persistence. Maybe one reminder would be a non-issue. However, if something is in my conscious thinking already, being reminded of it repeatedly is something that serves no purpose.

    Like

    Comment by Jeffrey Liakos — September 21, 2018 @ 6:23 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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