Epilepsy Talk

Anger and Epilepsy: WHY ME? | September 30, 2020

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 40 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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50 Comments »

  1. Sweet!! 😘🦅😊

    Liked by 1 person

    Comment by Kathy S.B — September 30, 2020 @ 2:26 PM

  2. After taking so many meds for Epilepsy over the years and dealing with all the different side effects, I finally got VIMPAT which has no side effects. BUT it is expensive.

    Liked by 1 person

    Comment by Rita McDonald — September 30, 2020 @ 2:32 PM

  3. I’m recently losing my temper over nothing but I don’t plan to but other people don’t believe me and its causing problems at work tbh think I’ll be giving the push in dec when my trial is over 😥 I’m getting really depressed x

    Liked by 1 person

    Comment by Anna Horrex — September 30, 2020 @ 3:05 PM

    • I got a neighbor with bipolar disorder, with instantly explosive shifting moods from friendly kind gentleman into aggressive belligerent bulldog.
      Once the neighbors found out his mental disorder, they learned to understand & tolerate his mood swings, cooperate & calm down the gentleman.
      Therefore providing your coworkers the benefit of the doubt passing around medical pamphlets educating your coworkers on “mood swings” & your unintentional angers may help you to resolve the unnecessary conflict, making the workplace much more friendly.
      Best Wishes!
      Gerrie

      Liked by 1 person

      Comment by Gerrie — October 1, 2020 @ 9:34 AM

      • Thank you, Gerrie, this is useful.

        Liked by 1 person

        Comment by HoDo — October 1, 2020 @ 11:31 AM

      • You’re welcome HoDo, Anything to help each other better understand making difference each

        Liked by 1 person

        Comment by Gerrie — October 1, 2020 @ 4:08 PM

      • Anything to help each other better understand the causes & effects of our medical conditions, prescription side effects & emotional reactions can help us to make wiser decisions avoiding breaking bridges, unnecessary conflicts & unpleasant environment for our families, friends, neighbors & coworkers unfairly to bear.
        Therefore open communication, providing opportunity to learn for those who don’t understand our medical hardships is the key to resolve the conflict provoked by unintentional anger.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — October 1, 2020 @ 4:46 PM

  4. I think the temper is probably a by-product of the frustration you’re feeling. Especially since people don’t seem to believe you.

    Not exactly a vote of confidence, is it?

    Like

    Comment by Phylis Feiner Johnson — September 30, 2020 @ 3:16 PM

  5. Incredible Phylis. It’s almost beyond imagination what you went through. I had a hard time dealing with a seizure just a few days after surgery. That’s about it. In relative terms it’s pretty well nothing. But I’m thankful allows me to ‘see’ the tip of the iceberg of your experience.I appreciate your advocacy work.

    Liked by 2 people

    Comment by philamisan — September 30, 2020 @ 4:05 PM

  6. Thank you, philamisan.

    Like

    Comment by Phylis Feiner Johnson — September 30, 2020 @ 4:38 PM

  7. And those of us with temporal lobe issues know that one can experience great anger (and, almost as embarrassing in public, great bliss), not AT something, but just because a neuron felt like firing.

    Liked by 2 people

    Comment by HoDo — September 30, 2020 @ 5:25 PM

  8. Oh HoDo, how true. Those nasty little things!

    Like

    Comment by Phylis Feiner Johnson — September 30, 2020 @ 5:27 PM

    • I don’t think of mine as nasty. I think of them as immature,, whimsical and irresponsible.

      Liked by 1 person

      Comment by HoDo — September 30, 2020 @ 5:33 PM

  9. Sounds like me prior to seizures

    Liked by 1 person

    Comment by cairns09 — September 30, 2020 @ 7:36 PM

  10. I feel the rage often, and Keppra makes it worse. It astonishes me to read that people in other countries have to pay for Epilepsy medicine, it seems so unfair.

    Liked by 1 person

    Comment by Michelle — October 1, 2020 @ 4:09 AM

  11. It seems to me that like other emotions that are referred to as “negative,” anger can be used for good or ill. It’s hard to make a case for rage, though that might be possible as well. Anger is energy. You can use it to bash someone or found a non-profit. You can choose. Rage, often, puts you past choosing.

    Liked by 1 person

    Comment by HoDo — October 1, 2020 @ 3:30 PM

    • Anger for me meant “getting even”. Getting even = advocacy and Epilepsy Talk. So, I couldn’t agree more, HoDo.

      Like

      Comment by Phylis Feiner Johnson — October 1, 2020 @ 3:34 PM

      • “Getting even” sounds sort of spiteful until I think of it in the more neutral terms of “balancing.”

        Liked by 1 person

        Comment by HoDo — October 1, 2020 @ 3:44 PM

  12. Well I WAS feeling spiteful, towards all the “odds” against me.

    Like

    Comment by Phylis Feiner Johnson — October 1, 2020 @ 3:50 PM

    • You don’t seem spiteful now. You seem focused and energized, a role model to us all. Eloquent, too. Nearly forgot.

      Liked by 1 person

      Comment by HoDo — October 1, 2020 @ 4:12 PM

    • Ah, here in the next email, is the perfect phrase: focused anger can lead to “wise action in the world.” May it be so.

      Liked by 1 person

      Comment by HoDo — October 1, 2020 @ 4:15 PM

      • Obviously, leading to the right logical direction than to emotional breakdown, anger can be positive driving force to search for better alternatives than having to settle for the status quo which proved to be unsustainable.
        All that energy, time & determination can radically change a lifestyle, finding the best way on how to chart a satisfying destiny.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — October 2, 2020 @ 2:32 PM

  13. Yes I have found that in the last couple of months. I can go from being happy to angry to a point where I see red. I’m over it. Either that or I can be sitting here and all of a sudden I’m in tears and for what reason, none that I can think of. It’s depressing. I used to be such a happy person. I often think like you know what did I do wrong to end with epilepsy at the age of 26, but apparently according to my neurologist it does happen.

    Liked by 1 person

    Comment by Tiffany Lumsden — October 2, 2020 @ 8:18 PM

    • Tiffany, it’s sort of like someone throwing a switch isn’t it? Except you can’t control the “on” or “off”.

      Don’t laugh at me, but have you ever considered meditation? Some people find it very helpful. Especially in getting centered.

      Take a look at this article and see what you think:

      Epilepsy: Meditation vs. Medication https://epilepsytalk.com/2020/09/18/epilepsy-meditation-vs-medication-2/

      Like

      Comment by Phylis Feiner Johnson — October 2, 2020 @ 8:52 PM

    • Consider yourself lucky and stop feeling sorry for yourself. When I was 26, I had been having seizures for almost 20 years. That’s the hand you were dealt. Be grateful you don’t have cancer or even Covid. The seizures won’t kill you. 🙄

      Like

      Comment by Deborah Thomas — October 2, 2020 @ 9:33 PM

    • Not to belabor a point I made recently, but what I have found most helpful – and it IS actually from a meditation practice – is to say, “I am experiencing anger,” or “I am experiencing depression,” rather than, “I am angry.” The anger and depression and whatnot coming out of nowhere are happening. They are not who I am. I have found stepping back, linguistically, to work well.

      Liked by 1 person

      Comment by HoDo — October 2, 2020 @ 10:23 PM

    • Tiffany,
      When I started having seizures in the middle of my life when I was close to say I’m achieving my dreams having the best things in life I’ve been dreaming for, I was emotionally breaking down getting angry for having seizures & being told to get medical attention by my family & friends, I felt like everyone is treating me less of a person than I was before.
      Therefore, I kept denying that I’m having any kind of medical disorder & refused to admit that I needed medical attention, while I kept angrily asking myself “how in the hell could this happen to me”?
      Eventually, watching myself having two grand mal seizures on video recorded by diagnosing hospital doctors, became a time for rude awakening to accept the new reality, eliminating the need for denial & cover up of my seizures accepting medical attention, gradually decimating my anger over my seizures like a mist into thin air & searching for more information on how to cope with my newly discovered brain disorder.
      Diverting the energy, time & emotional drain wasted over getting angry over my seizures ended up being replaced by searching for mechanism on how to control my seizures, providing me with the peace of mind & the feeling that I can do something to stop my seizures.
      Once I felt I can be in charge of my own predicament, I felt I can beat this ordeal without tormenting myself with emotional drain.
      Therefore, you can do it too.
      Everytime you feel you’re breaking down into emotional anger & tears, search for an answer for how to control your seizures or read a book about the greatest scientists, musicians, architects, artists, leaders ,,, who made it through the difficult times to get where they successfully ended up despite their struggle with Epilepsy.
      Best wishes!
      Gerrie

      Liked by 1 person

      Comment by Gerrie — October 3, 2020 @ 4:28 PM

  14. When someone starts with the “why me” crap, I tell them to pick up their violin and move on. To me, they’re feeling sorry for themselves. That’s wasted energy. I’ve had seizures for almost 50 years. From the start, I was treated like everyone else and expected to do the same, if not better, than anyone else. Therefore, I expect the same of myself. The seizures may cause me to take a different direction in accomplishing whatever I’m doing. They don’t control me. I don’t look for sympathy or attention of any kind when it comes to the seizures. I’m stronger than that.

    Liked by 1 person

    Comment by Deborah Thomas — October 2, 2020 @ 9:28 PM

    • Strength is good. Attacking other people is not.

      Like

      Comment by Phylis Feiner Johnson — October 3, 2020 @ 9:17 AM

    • One can NOT deny that for those who lived with Epilepsy for most of their lives, every seizure is just another incident they have learned to cope with for a long time.
      But for those who’re just discovering the ordeals of epilepsy shaking their lives, seizures are very bitter pill to swallow & difficult ride to accept.
      Therefore, it would be very natural to ask yourself “why me & why now”?
      From personal experience, knowing nothing about epilepsy, I’ve been there & done that before.
      But thanks to EpilepsyTalk, I found out & learned it was NOT just “me”.
      There are millions of people like “me” out there, expanding my scope beyond my personal concern & self-interest.
      Therefore, providing helpful information & encouraging support to the inexperienced victims of Epilepsy would be far more appreciated.

      Gerrie

      Liked by 1 person

      Comment by Gerrie — October 3, 2020 @ 6:12 PM

      • This can be a tricky subject. I have had “stuff” – not grand or petit mal seizures, but things like a 13-hour hallucination – and, yes, it was just one more of those things in a lifetime of those things.

        It wasn’t until I was 30 that there was a diagnosis. It was a shock. EXPLETIVE, epilepsy!? NO!! So what I had responded to was the term, and the stigma attached to the term. (Also, a bit, to the neurologist. I’ve known auto mechanics with better bedside manners.) It was a relief to know that what I had experienced was not a brain tumor, nor was I imagining things. I was not an evil person lying for personal gratification.

        Anyway, there are multi-levels of information and experience and feelings to get used to: about the symptoms, about the diagnosis, the stigma, the response of people around you, the meds. It can be overwhelming at each point. It can take a long time to process. Years. Some crying is often helpful for some people. We each get through it in our own way, in our own time, with more support or with less.

        Liked by 1 person

        Comment by HoDo — October 3, 2020 @ 6:41 PM

  15. There is an additional sticky point around anger, and sadness as well. People who don’t have brain issues get angry AT something. “This bill for $16,000 came from the hospital, I can’t begin to pay it, I feel angry.” It is something which can be parsed and discussed.

    If, however, the brain is having one of those days, there may be emotion without an external trigger. Midnight, deep sadness. Morning, rage. Talking with a friend or psychotherapist ignorant of epilepsy about these unprovoked emotions can lead to incredible frustration on both sides. I may need validation, which isn’t forthcoming. The other person may want to fix the unfixable.

    There are basic safety measures that I take if it’s anger that’s happening. Stay away from knives. Move more slowly. Having recognized what’s going on, take care speaking with others. And, when my psychotherapist tried to cram me into the normal-person mold she’d learned in graduate school, in spite of my repeated efforts to explain – I was in effect paying her and teaching her about my condition – I changed therapists.

    Liked by 1 person

    Comment by HoDo — October 3, 2020 @ 7:57 AM

  16. I may be getting closer to clarity on the anger issue. There’s the natural anger I feel at the unfairness of brain damage and its fallout. Similarly, there’s natural anger at being treated badly.

    But there’s also my brain on a toot, pushing doorbells at random, now Terror, now Ecstasy, now Anger, now Sadness.

    The problem is – one of the problems is – what are my responsibilities, as a disabled person, to the people around me? When natural anger is out of control, one can take an anger management class, learn to apologize, learn to count to ten. With brain toot anger, there IS no counting to ten. With brain toot sadness, looking on the bright side is beside the point.

    My tendency is to hide until it’s over, but that, too, has drawbacks. Asking for help depends on articulating the right question to the right person. No answers yet, pharmaceutical or otherwise.

    Discussion invited.

    Liked by 1 person

    Comment by HoDo — October 7, 2020 @ 9:32 AM

  17. I think hopeless and helplessness are what trigger my anger.

    How to act around other ignorant people is downright infuriating.

    And relying on drugs is just a band aid to the problem which is far more deep seated than that.

    Like

    Comment by Phylis Feiner Johnson — October 7, 2020 @ 9:40 AM

  18. Helplessness is one of my outer triggers. The origins of the neurological triggers are unknown. One seems to be seasonal.

    Liked by 1 person

    Comment by HoDo — October 7, 2020 @ 10:46 AM

  19. ???

    Like

    Comment by Phylis Feiner Johnson — October 7, 2020 @ 11:50 AM

    • Interesting discussion to consider the effects of seasonal changes to seizures.
      I’m NOT sure if weather have anything to do with seizures but I would think that autumn & spring being the time for seasonal changes with shifting transitional weather from low into high temperatures or from high into low temperatures, the stress level to keep up with the shifting temperatures might end up affecting brain chemistry triggering seizures, just like the flue season around the corner affecting breathing conditions.
      I would think that summer & fall having relatively consistent weather conditions, the brain chemistry might be more stable to cause shifting electrical discharges to trigger seizures than autumn & spring.
      I got no scientific data nor analytical research to prove my opinion beyond personal suspicions to the seasonal seizures HoDo brought up for discussion.
      Therefore, I don’t claim that my opinions are evidence for seasonal seizures.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — October 8, 2020 @ 1:20 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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