Epilepsy Talk

Working, Seizures, and Secrets | April 17, 2020

When I was in my 30’s, I worked real hard and made pots of money.

No sleep.

Many seizures.

But big bucks.

At the advertising agency where I worked, when I saw the couch in my office, I thought: “Well, I guess I’m important.”

Little did I know that I’d end up sleeping on it. And having many seizures.

Then there was the time I was sent to San Francisco to “save” an account.

I saw the pizza boxes and thought: “Great. I love pizza.”

I didn’t know I’d be eating pizza for the next three days. And having seizures.

At the “victory lunch”, I slid from the chair to the floor.

Luckily, they thought I was exhausted. (Which I was.)

The perfect foil for the seizure I was having.

But I had done it. I fooled them again.

Now, thirty-five years later, I still work real hard.

But I don’t make any money.

I write out of love.

And for all those who have to keep epilepsy their “dirty little secret”.

 

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35 Comments »

  1. I agree, overwork and under sleeping will easily trigger seizures. I cannot speak for you, but I know in my case too many carbs of any kind will trigger my seizures and/or cause restlessness during the night.

    I have found that for me a keto diet greatly improves sleep naturally. I also have zero breakthrough seizures while I stick to this diet

    Liked by 1 person

    Comment by Stephen F. — April 17, 2020 @ 1:28 PM

  2. For me I think the sheer stress and lack of sleep were triggering seizures big time.

    But low carbs is a good, energizing idea.

    Too bad, I was living on pizza! 🙂

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 17, 2020 @ 1:50 PM

  3. I worked for the federal government for over 30 years. As long as I could I kept having epilepsy to myself. It wasn’t until I had a tonic-clonic seizure at work that they found out. By then, they knew it wasn’t a big enough problem to wonder if I could do my job.

    The only big problem came when I had my surgery. I had no clue my epileptologist sent my boss a letter stating that I would be fine when I got back to work. I felt good but memory was a problem. When I said I’d need training to learn the part of my job I just started before surgery, my boss said, “I’d demote you if I could.”.

    After a year of being worried how I was doing, my boss goes on to say, “Stop being so hard on yourself. You’re doing fine.”. Finally, I felt I was going to be treated like everyone else instead of being doubted.

    Liked by 2 people

    Comment by Ed Lugge — April 17, 2020 @ 3:40 PM

  4. Wow, that was nip and tuck, wasn’t it?

    From a threatened demotion to “Stop being so hard on yourself. You’re doing fine.”

    You must have been doing wonderfully at your job!

    Nice to be treated like a human being, again…

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 17, 2020 @ 3:45 PM

  5. Crikey … interesting post and thanks for sharing. I did wonder once whether stressing my husband out would give him a seizure or a heart attack (this is written in absolute seriousness). I backed off the moment I thought of it. I had no idea that ongoing stress and exhaustion can cause this. Katie

    Liked by 2 people

    Comment by howikilledbetty — April 17, 2020 @ 5:09 PM

    • Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress. And, as you may imagine, it’s responsible for several stress-related changes in the body which also may influence seizure activity.

      Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin. You’ll probably find that you have more seizures during or after periods of anxiety or stress.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — April 17, 2020 @ 5:26 PM

      • Oh golly, thanks so much for explaining. I did wonder if he was going to have a complete breakdown … in case you’re wondering, I was totally calm, just had to impart some bad news. I’m glad I’m a little more informed now. Many thanks.

        Liked by 2 people

        Comment by howikilledbetty — April 17, 2020 @ 5:53 PM

      • You’re very welcome.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — April 17, 2020 @ 6:03 PM

      • Funny how we “epileptics” know that, but trying to get our spouses, children or families to realize that seems to be a real challenge sometimes.

        Liked by 1 person

        Comment by Kathy S.B — April 18, 2020 @ 11:23 PM

  6. The internet era was far on the horizons when my boss came up to me one day & asked me, “hey, we’re starting new company with 10 of my friends & why don’t you move with us”?
    Totally surprised by his request & unprepared for immediate answer, he adds “you can always return back here if you don’t like the new company, you already have many friends & established record here, so you’re NOT risking a whole lot”.
    Needing sometime to answer to his request, I said “Let me think about it & I will let you know very soon”.
    Thanks to the stock market & IPOs (intial public offering), those were the days of start up companies in garage, turning into billion dollar companies overnight for brilliant inventions, without having yet to sell too many products.
    Therefore, while I loved the stability of my old job in a very old well respected established corporation, I was exited to join a new start up company building new products for the new generation of technology, in the inception of wireless network products providing mass information at your finger tips, anytime & anywhere.
    While the excitement of working on new products was overwhelming, little did I knew that the very new start up company I’m joining with limited resources & manpower is going to need a very long hours of hardwork for seven days to complete projects that has already been scheduled for release on certain quarters of year.
    Therefore while the money behind the pay scale, the stock options & profit sharing was unbelievable good, I never realized the tall of the sleepless long days & nights was taking on my my physical & mental wellbeing, I started having seizures.
    But knowing nothing about seizures I only thought I was having bad dreams until I ended up having grand mal seizure in the company floor for all the employees to see, panic & call for ambulance & I had to stay at hospital for two days.
    By now, my secret is out & the mistry behind my bad dreams has come to surface.
    Therefore, there was no place to hide.
    Finally, the very startup company I helped to build into midsized corporation requested me to provide “Doctor’s clearance” to keep working in the same environment I had been working for 30yrs.
    Ultimately, recommended to see Neurologists in Stanford University, I ended being barred from driving & working in the same corporation as I worked before, until future brain surgery stabilized & determined the status of my epileptic seizures.
    Thanks to epilepsy, the flood of money & the excitement of working on cutting edge new technology & driving around town whenever & where ever possible, ended up being the story behind the good old days.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — April 17, 2020 @ 8:35 PM

    • What a story. What drive. And courage.

      But you left me hanging at the end. I’m in total suspense. What ultimately happened?

      Did your job end? Were you bought out? Did you retire? What?

      How do/did you feel about all of this? Then and today?

      Like

      Comment by Phylis Feiner Johnson — April 17, 2020 @ 9:04 PM

      • Yes Phylis, Thank you for your inspiring complements but in a rush to catch up a car ride from a friend driving to the grocery store in the age of COVID-19 national emergency & restrictions to “stay at home”, yes, you’re right I agree with you that I did NOT get to complete the whole story.
        Sorry for failing to complete the whole story but after staying in Stanford University Hospital for a week, the Nuerologists analyzing my MRI tests immediately suggested & recommended that I must automatically stop driving cars & going back to work, until the hospital completes more tests to carry out my brain surgery to control my seizures, which is going to take a whole lot of time to diagnose, carryout, rehabilitate & recover in a very time-consuming process to stabilize & control my seizures.
        Therefore, there was limited options left to choose from.
        Obviously, the Nuerologists made it clear that my priorities are controlling my seizures more than stubbornly keeping doing what I’ve always been doing with rewarding outcome.
        Therefore, I was literally forced to retire to fight the battle against my seizures based on Stanford University’s recommendation & “clearance letters” to my employer, DMV & State agencies.
        While I have yet to go through my brain surgery, I missed the days of driving to work & the pleasure of completing my day with another achievement in production line of exiting technology.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — April 18, 2020 @ 1:04 AM

      • It seems so unfair. That epilepsy should stop you in your tracks.

        But there you were, gracious and grateful as always.

        An inspiration to us all.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 18, 2020 @ 10:49 AM

  7. I had a fantastic but very stressful social work career. In addition, I had also become licensed as a clinical social worker able, if I wanted, to go into private practice. Wandering the halls of the agency it was impossible to keep my first, of many, seizures secret. Thus began a whole new strange chapter of existence. Society really doesn’t like “differentness”, and this is coming from a trained psychotherapist! Oh, I was let go from the agency.

    Liked by 1 person

    Comment by skolly9 — April 17, 2020 @ 10:57 PM

    • OMG. Were you “let go” because of your epilepsy?

      As a clinical social worker?

      By a psychotherapist?

      That’s obscene!

      What’s wrong with this picture?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 17, 2020 @ 11:36 PM

    • Sorry to hear about you employment status, but the way I see it POOR SOCIETY!! THEY DON’T KNOW WHAT THEY HAD!!!!! It’s Their loss really and not yours! I have “social workers” in my family and have also had to deal with the flip side of the coin (having had to adopt family members ourselves) and I have to admit IT TRULY FEELS LIKE A “NO WIN FOR ANYONE SITUATION”!!!!!!! As YES VERY STRESSFUL ALL AROUND!!

      Liked by 1 person

      Comment by Kathy S.B — April 18, 2020 @ 11:32 PM

  8. I can’t help but to say,,I LOVE my pizza BUT I am no lover of the GRAND MAL that I can have later, & you are at greater risk, if you think having 1 or 2 slices of a pizza with a DIET SODA that you are not indulging yourself, Well the damage is done with ASPARTAME, MSG’s, NITRATES & NITRITES all from Tomato Sauce, Pepperoni, Sausage, Cheese, & the crust which ALL have more than 1 type of MSG’s in them, along with NITRATES & NITRITES in the meats of pepperoni & sausage. REAL MUSHROOMS do not hurt the brain as it is a BRAIN FOOD and has NO MSG in them as many reports I have read are saying that mushrooms have MSG in them. Our family in the 1960’s, & 70’s grew them & we had them to eat every week eating what we grew. and they were never ever packed in PLASTIC & CELLOPHANE. So test it out again as I have done, as I FAILED to think that was just 1 time that happened, as it happened again, and that was when I made it 0 TIMES that ever happens again. I’m tempted now to try 1 slice of what I like on pizza IF I use SUGAR, & take about 4 to 5000 mcgs of VITAMIN C that does somehow depletes ALL NITRATES & NITRITES & other acids that all have a TOXIC chemical base to them.like having BEACON on pizza which i all but forgot. SUGAR will cut down all acids as well, which helps VITAMIN C work better. BUT NO it’s not worth the money wasted just to tempt my brain to be truthful that another GRAND MAL WILL HAPPEN especially as you are getting older. So it’s up to you or anyone to answer, DO YOU FEEL LUCKY ? No face mask or social distancing will ever stop a seizure.

    Like

    Comment by James D — April 18, 2020 @ 1:51 PM

    • As bad as it may be for me, I’m not giving up pizza.

      Plus, I’ve been 99% seizure-free for 10+ years, so I think, I’m safe!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 18, 2020 @ 4:10 PM

      • In my case, while I got no problem with pizza & maintaining social distancing for I’m NOT interested in intimate relations in public area 😄, wearing that suffocating mask makes me more concerned about having another grand mal seizure than protected from the infection of corona virus.
        Therefore, it’s looking like a matter of juggling different choices which may or may not to be effective to carry on our daily lives without medical hardships.
        And after all these years of having survived & overcome the long way to beat the odd, it’s time to be grateful I made it this far.
        Bless you all for having been there for me, when I knew nothing about how to survive the medical hardships I never had experience before.
        Cheers!
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — April 18, 2020 @ 10:30 PM

    • Funny how they say pizza is actually good for athletes after a game because it helps the body re-generate the loss of sugar and carbohydrates. Pizza and chocolate milk. Hmmm

      Liked by 1 person

      Comment by Kathy S.B — April 18, 2020 @ 11:36 PM

      • Pizza WITH chocolate milk, UGH.

        Pizza and/or chocolate, yum. 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 18, 2020 @ 11:39 PM

      • Lol okay the “YUM” is what I mean lol plus it’s faster and easier to eat and drink between games!!

        Liked by 1 person

        Comment by Kathy S.B — April 18, 2020 @ 11:50 PM

  9. I’ve had epilepsy during my whole life. During my last 45 years, I have been working in stores. The longest job that I have had, was 19 years long. When I first got that job, I made sure that they knew that I have epilepsy. Mainly during the summer is when I was having seizures, while on the job. Those were when I was outside for a while, during the summer. They never told me that I don’t have to be out in the hot sun. When I had been there 19 years, I had a Grand-mal seizure at work. I went home, to sleep and that would go away. I went back to work the next day. I wish I had not gone back. When I got there, the store manager asked me to his office. He told me that some customers complained about my having the seizure. He told me that I was yelling during that time. I was fired because of the seizure. I got a different job, where I’m still working. My co-workers and manager understand my epilepsy. This job is so good!

    Liked by 2 people

    Comment by Bill Whittemore — April 18, 2020 @ 2:16 PM

    • Well that is sure bad news and good news.

      So many years at a job and then getting fired for having a “noisy” seizure. 😦

      But, I’m glad you got a new job that you like and where you are liked and understood.

      By the way, you might find this article interesting:

      Heat Is Not Our Friend:

      https://epilepsytalk.com/2016/06/26/heat-is-not-our-friend/

      Like

      Comment by Phylis Feiner Johnson — April 18, 2020 @ 4:23 PM

    • Wow!! I really like being out In the sun MOST OF THE TIME!! I played baseball and all form of sports and riding horses lol and tractors and bailing!!!!! I never thought of the heat until last year when my doctor told me she didn’t want me to sweat anymore!!!!!

      Liked by 1 person

      Comment by Kathy S.B — April 18, 2020 @ 11:41 PM

      • Well, what’s good for one, isn’t good for all…

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 18, 2020 @ 11:57 PM

      • Ya apparently heat and sweating isn’t good for me now!! Now I just need to learn to time myself and pay more attention to my body in the summer or when I sweat

        Liked by 1 person

        Comment by Kathy S.B — April 19, 2020 @ 12:04 AM

  10. The legal implications. I worked with people of all ages and often drove a car to do my casework is what I presume led their decision.

    Liked by 1 person

    Comment by skolly9 — April 18, 2020 @ 7:32 PM

  11. I understand what you’re saying but, according to ADA law, they should have made “reasonable accommodations”.

    Epilepsy, Employment and the Law

    https://epilepsytalk.com/2019/02/20/epilepsy-employment-and-the-law/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 18, 2020 @ 7:59 PM

    • While employers might be concerned with liability for your medical conditions under your/their employment agreement/contract, from my personal experience, I think Doctors got more power to decide your fate more than you or your employer in designation of your ability or disability to perform your job or drive your car.
      Therefore, having Doctors clearance certification or disability confirmation letter is vital evidence to pursue your career with the same or different employer or qualify for disability insurance to retire & end your professional career.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — April 18, 2020 @ 11:52 PM

  12. In my culture we or I was taught verbally and by shown how to do things. Then we/I showed my grandma and great grandparents what they taught me. They also taught through verbal stories of their lives and how they learnt their lessons. Nothing was ever really written, but the lessons were taught through stories and different forms of art and through the old people to us younger people. However for me I had an uncle come when I was younger and put up a “punching bag” and then of course sports and our way of life. So having to go from being physical to not so physical seemed to be the biggest challenge for me. Especially during stressful times!! Weird I know.

    Liked by 1 person

    Comment by Kathy S.B — April 19, 2020 @ 12:25 AM

  13. As a closeted epileptic, right on sister!! I too can only keep my high stress, high paying job if they knew I could have a seizure at an moment and most of us who have partials have become masters of hiding our seizures. I get auras so I have nice little warning signs. For those who say it’s illegal to discriminate, of course it is but most companies are ‘at will’ and it’s very easy to get rid of problem employees.

    Liked by 2 people

    Comment by Jennifer — April 20, 2020 @ 9:05 AM

  14. Jennifer, at work epilepsy was my “dirty little secret”.

    Fortunately, my office had a door.

    When I felt an aura coming on (a disgusting metallic taste in my mouth), I would hit the floor, before the floor hit me.

    One time, when I was out cold, the copier next to my office went on fire.

    Everyone was evacuated (except me, I was oblivious in my seizure) and when I came out a few hours later, I asked where the copy machine was.

    Every one looked at me like I had three heads.

    But my seizure was still a secret.

    Like

    Comment by Phylis Feiner Johnson — April 20, 2020 @ 10:15 AM

  15. Phylis, you were very lucky to have been able to continue your career while keeping your “secret”. My employer did say I could come back when I was better. However, between the horrible side-effects of the meds and the potential for more seizures, I had the moral integrity to not want to put already fragile clients in more danger. Feeling how utterly bazaar I felt on Depakote, or Dilantin, etc etc, I thought gee, if my doctor, nurse, counselor was feeling this way right now, I sure wouldn’t want to be treated by them

    Liked by 1 person

    Comment by skolly9 — April 21, 2020 @ 7:31 PM

  16. Well Skolly, I was just a writer. There was nobody I could hurt. (Except the typewriter!)

    You were in a much more important and vulnerable position. People relied on you. They depended upon you.

    A very different kettle of fish.

    Like

    Comment by Phylis Feiner Johnson — April 21, 2020 @ 8:01 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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