Epilepsy Talk

Anger and Epilepsy: WHY ME? | May 18, 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, 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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16 Comments »

  1. This sounds so true. I’m so happy you met Prince Charming and he loved you for you. My daughter went thru this too. She met her Prince Charming 7 years ago, they’ve been together since. It takes a special person to understand seizures and epilepsy. I’m very happy for you. God’s Blessings.

    Like

    Comment by Gwen — May 18, 2017 @ 3:36 PM

  2. Phylis, I admire your openness and honesty in telling your story. It reminds me just how lucky I have been in comparison. The next time I start to feel sorry for myself in a “Why me ?” mood, I hope I can remember that so many people have to put up with situations that are so much worse than mine. Thank you!

    Like

    Comment by Michael — May 18, 2017 @ 3:45 PM

  3. I count the blessings more than the troubles and have many to count. They are all people and the fact that my epilepsy only offers up seizures a couple times a year. But what was that bit about the coma? Did that have to do with the epilepsy? Yuk!

    Like

    Comment by Kate Jacques — May 18, 2017 @ 3:57 PM

    • Yes Kate. I took a drug (Wellbutrin) that was counterindicitive with my Lacmictal.

      The Lamictal level was too low (50%) and the Wellbutrin was too high.

      Like

      Comment by Phylis Feiner Johnson — May 18, 2017 @ 4:01 PM

  4. NO. You never get even, only ”ONE BETTER”. That way you come out on the top & they are on the bottom. Try today though to get a GOOD service from anyone in this medical world, with $$$$$$ signs behind their last names, no matter if it is a doctor, drug, or a supplement company. They ALL use TOXIC chemicals & additives in 99% of all they sell to us, that WE NEED of course, and they only make us feel worse for the majority of people that HAVE TO TAKE all this crap, to be a part of their family & numbers game of a failed or successful person with or without seizures in our life. L E / Life Extension according to them as to have the BEST supplements & vitamins on the planet, yet after reading MANY labels, most to all I have read can cause seizures. Well well, isn’t that like the drug industry, that makes AED’s that causes seizures like ONFI, PARAPANEL, & others that can be dangerous to take ? Sure I am BLESSED as I thank God for the knowledge that I have learned ON MY OWN, where no doctor ever has ever said to be AWARE of the toxins & chemicals in everything, from drugs, foods & supplements that have these G K A S ”Generally Known As Safe” fillers in everything that causes seizures and other brain / neurological conditions, many that were never diagnosed until after 1990, but some people have had them since 1950. Problem today MANY people have them ALL today because they diagnose EVERYTHING today only to sell a drug, while all these G K A S fillers,chemicals,additives, & preservatives in everything is killing people every day, as a rate of every 18 minutes of each hour, every day from these G K A S FDA & USDA approved toxins we are forced to have to use 365 days a year. You winder WHY people are MAD & HAVE SEIZURES ? All of you do your brain a favor and just FAST from these toxic & contaminated foods, drugs & supplements in this world that all say,, WE CARE ABOUT YOU, and will only do OUR BEST FOR YOU. << That alone is a true WARNING for all man kind, no matter if you have seizures or not. Never thought only 5% of all supplements I am able to take, as 5% of the foods I can eat is another issue for staying seizure free the best way I know HOW to do it, as WHY I do what I do, ( to PREVENT a Grand Mal seizure from happening) if people can not get that, then THEY are worse off than I will ever be, especially if they believe this can never happen to them. MAGNESIUM STEARATES in any AED can result alone in MORE seizures, as will all other MSG & other chemicals that are in our drugs, and we wonder WHY the drugs never help us ? Yeah I am mad, but under control to the degree, I know my brain, where others think it is their legal toy to experiment with. My brain is not their toy. What do you say about your brain & WHO will do for it staying seizure free or less of them ?

    Like

    Comment by C D — May 18, 2017 @ 4:53 PM

    • I like: “You never get even, only ”ONE BETTER”. That way you come out on the top & they are on the bottom.”

      Like

      Comment by Phylis Feiner Johnson — May 18, 2017 @ 5:17 PM

  5. I think I out grown my seizures, because what I had had on my eeg. I was they were not seizures, they were arus. Now I think I out geown them to, but I not going to I may never have one again. I went for 5 years not having any, thinking there gone but will come back sometime. You will always epilespy until the day you die, so stop try find a cure and just live with it. I have for 51 years.

    Like

    Comment by Michele Metzger — May 18, 2017 @ 9:30 PM

    • Many people go for long periods without seizures (me included) and then the seizures pop up again.

      I don’t know if its chemistry, hormones, life’s events, stressors, etc. but they do.

      Are you now having auras without seizures, Michele?

      Like

      Comment by Phylis Feiner Johnson — May 18, 2017 @ 9:50 PM

  6. My husband started new medicine and I’m not sure either one of us like. It makes him exhausted most of the time and short- tempered with our our children and myself. He Started Keppra.

    Like

    Comment by Vicky — May 19, 2017 @ 6:55 AM

  7. I was diagnosed with epilepsy in 2006 at the age of 24 years old just out of nowhere I woke up one day dying I have grand mal seizures in my sleep at first and then a few years later started having grand mal seizures to the day and also at night at first I was on Dilantin for three years but it was the worst experience of my life the talks in my blood gave me bad depression and even suicide Suicidal Thoughts they switched my medicine then to Lamictal and Keppra I am still having seizures and the Capra’s since I started taking it I do feel very angry just out of nowhere just sudden bursts of anger and frustration also I start crying out of nowhere nobody seems to understand I have no Outlet to talk to anybody and I hardly have any friends like everyone is scared to be around me nobody knows what to do when I have a seizure I can’t drive I can’t swim I can’t ride a bike I was on the bus and January and had a seizure some guy took me off of the bus and robbed me nobody said anything I’m still very lost and confused and wondering why this is happening to me

    Like

    Comment by Tracy Eichel — May 19, 2017 @ 4:06 PM

  8. Hi, thanks for your post, good timing, we are just weaning my son who is 12 and has epilepsy off keppra due to the side effects, but this is his 6th drug that hasn’t worked other than given him side effects, I think I’m the one that’s angry I’m done with the medics prescribing one thing after another like mini science experiments. We are trying the neurotransmitter GABA in a supplement form and since starting 3 weeks ago he hasn’t had a seizure the longest seizure free time for him in over a year. Diet and sleep also make a huge difference, really low carb, not the ketogenic diet just low carb and healthy fat. We’re doing our own experiments now but not with more toxic drugs on an already overloaded little body. Will let you know our journey, I hope it helps, 3 weeks is good for us, and it’s certainly side effect free. 🙂

    Like

    Comment by Jules — May 21, 2017 @ 2:39 AM

    • Good for you, Jules! And all your persistence. You’ve turned lemons into lemonade to become your son’s own advocate.

      As good (or bad) as doctors are, only you know your own body and your son’s body best. And you’re in the best shape to take care of it.

      Let me know how the GABA and low-carb diet go.

      Like

      Comment by Phylis Feiner Johnson — May 21, 2017 @ 9:18 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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