Epilepsy Talk

Working, Seizures, and Secrets | June 8, 2014


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.”

Little did I 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 years later, I still work real heard. 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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40 Comments »

  1. You write out of love, Phyllis, and your loyal readers love you for doing it!

    But not to feel bad! Alexander conquered the known world with epilepsy, never knowing when he would have a seizure. Likewise, Julius Caesar. These guys were on military campaigns for years, sleeping out under the stars, eating erratically, certainly not living the way a person with epilepsy “should” live. They died young, but not from epilepsy.

    I don’t need to tell you how many famous people have had epilepsy. In the ancient world, such people were considered very special, touched by the gods.

    It would never occur to me to be secretive about my son’s epilepsy (or autism). We are all fragile and breakable, but some people have to wait longer to discover that.

    Comment by Martha — June 8, 2014 @ 1:04 PM

  2. Thankyou for posting this. You have given me a little bit more confidence. I am too embarrassed to go out now in case I have a seizure in public! It’s my worst nightmare. Had my first one this week whilst standing up & it has really scared me. Don’t want to go out now at all, not even Church. Feeling very depressed. :0(

    Comment by Libby Masterman — June 8, 2014 @ 3:08 PM

    • Libby, it took me years to realize that I was not an “epileptic.” I am a person with epilepsy. I know it’s easier said than done, but you can either live your life as a victim of epilepsy or chart your own course.

      You might want to read this article:

      The Isolation of Epilepsy

      http://epilepsytalk.com/2010/07/09/the-isolation-of-epilepsy/

      And remember, we are here — all of us — to talk to, answer questions, seek advice, comfort, and caring.

      You are not alone. Not here.

      Comment by Phylis Feiner Johnson — June 8, 2014 @ 11:31 PM

  3. Exactly Philis,,, That’s why we LOVE reading your articles, as if we are reading the Bible, the testaments of love.
    After all, money never bought happiness as much as LOVE does.
    Therefore, life is about love & certainly NOT about money.
    KEEP SPREADING THE LOVE, FOR MANY ARE HUNGY FOR ONE.

    Comment by Ghebre — June 8, 2014 @ 4:40 PM

  4. Thank you so much Phylis for your dedication and caring for each of us. I have learned more from you in the past four and a half years then I knew my entire 50 years of seizures. Thank you so much, keep up the good work!!!!
    by the way, tomorrow night is our support group meeting. I will have to look through your articles for a discussion topics. Thanks again

    Comment by charlie — June 8, 2014 @ 7:17 PM

  5. Add a donate button! You Rock!

    Comment by Alan — June 8, 2014 @ 7:50 PM

    • Exactly Allan,,, EXCELLENT IDEA ,,, Anything to support this site to keep going, is ended for the good of many us who benefited a whole lot for so long & learned how to survive Epilepsy.

      Comment by Ghebre — June 8, 2014 @ 10:00 PM

  6. You know I do it all for you. I don’t need money to support me. YOU support me with your love and caring and compassion for one another.

    YOU are what makes me special. Because YOU are special to me.

    Comment by Phylis Feiner Johnson — June 8, 2014 @ 11:20 PM

    • P.S. Monday is my birthday Charlie. (61!) I’ll be thinking about you, your support group and how supportive you are to so many.

      Comment by Phylis Feiner Johnson — June 8, 2014 @ 11:22 PM

      • Happy Birthday, Champion !!!
        Thank you for all the years of love.

        Comment by Ghebre — June 8, 2014 @ 11:57 PM

      • MWAH Gerrie!

        Comment by Phylis Feiner Johnson — June 9, 2014 @ 2:21 PM

  7. I too very much enjoy your posts and what you write is so very valuable offering hope and support to all with a plethora of information both on a personal level as well as health. Perhaps one thing that I want to learn to understand more as I do my research and speak to different people is the use of ‘epileptic’ and ‘person with epilepsy’. I have always referred to myself as an epileptic and have never thought twice about it. The condition doesn’t define me it’s simply part of who I am and I continue to strive to have control of it rather than the other way around. I have a very positive attitude towards it and haven’t let it stop me doing anything but the issue of how to address someone with epilepsy as I say is something I want to understand more. I’d be grateful for opinions just to see what people think. Many thanks!

    Comment by Freya Symes — June 9, 2014 @ 12:00 AM

    • Frankly Freya, I think that epilepsy versus the epileptic thing is a matter of semantics and what’s “politically correct.”

      It doesn’t really matter, as long as you have the wonderful and positive attitude you have. That speaks for itself!

      Comment by Phylis Feiner Johnson — June 9, 2014 @ 2:19 PM

      • Thanks so much Phylis, I sometimes wonder if I should be calling myself that or not! Keep up the amazing writing, I love reading your posts

        Comment by Freya Symes — June 9, 2014 @ 3:29 PM

  8. I’d put money on my having not gotten jobs because of my epilepsy but I’ve never withheld it from any employer or potential employer. In the UK you can’t be discriminated against by an employer for having epilepsy but only as long as you disclose it before accepting the job. If you don’t and things go wrong you can be dismissed without a leg to stand on legally. Having had long periods out of work to sort out problems with my epilepsy, if I were asked why there were gaps in my employment and I didn’t want to disclose that I had epilepsy, that would mean telling an outright lie. It would put me in a terrible position trying to get employment in the future and I’ve never thought it was worth it in the long run. There are times when it has worked in my favour, in one interview I told them about the whole sorry saga, the seizures, the anxiety, the depression and they were really grateful that I’d been honest with them. I ended up getting the job :o) I have epilepsy, I’m not incompetent which is more than I can say for some of the people I’ve worked with! I’ve been fortunate in that I’ve only had a seizure at work once and only one on the bus home. I always thought I’d be mortified if either of those happened and didn’t know how I’d face people again but it turned out I wasn’t as bothered as I thought I’d be. Couple of days recuperation and it was back to business as usual.

    The biggest problem I’ve encountered in work situations is that people don’t understand enough about epilepsy. They think it’s just about falling unconscious and convulsing. Sometimes when you call in sick because you can feel something’s in the works or because partial seizures are giving you hassle, they just don’t get it. I’ve always found that getting a degree of control is as much about knowing when to take some time out as it is taking the tablets. Life would be a lot easier if there were a light bulb atop our heads that flashed red whenever there was something going wrong. People might actually believe you rather than thinking you were just trying to bag a day off. And all the complicated business with meds? They really don’t get that. Massively, massively frustrating.

    Comment by bardotbarbiturate — June 9, 2014 @ 12:00 PM

    • That seems like a very misguided (and ignorant) policy in the U.K. regarding the requirement to disclose one’s epilepsy before being hired. Anybody can have a seizure: you don’t have to have epilepsy to have one. Sleep deprivation, low blood sugar, withdrawal from medications, and many other factors can provoke a seizure that may look like epilepsy, but isn’t.

      My brother-in-law had a cavernous angioma — a tangle of nerves and blood vessels in his brain. A person can go his whole life with that and never know it. Or — one day, out of the blue, you can have a seizure. He was 60-ish when he had a major grand mal seizure (at home). He was put on Dilantin, and has been on it ever since. He is now 75, and still works part-time.

      Comment by Martha — June 9, 2014 @ 2:27 PM

      • You’re not required to disclose it, it is still a matter of choice. Plenty of people choose not to, it’s just that if you don’t you won’t be covered by the Equality Act should your employer decide to be an ass about it. Nondisclosure is only a relevant issue if you didn’t mention a pre-existing condition before taking the job. Conditions presenting themselves in a current employment are subject to different rules. If you are diagnosed when already employed then your employer is legally required to make reasonable adjustments. The Equality Act covers all seizures regardless of their cause.

        Comment by bardotbarbiturate — June 9, 2014 @ 3:35 PM

  9. Bardotbarbiturate,

    In the US, it’s quite the opposite about epilepsy disclosure and employment.

    Disclosing Epilepsy with a Potential Employer

    It’s not always necessary to discuss epilepsy with a potential employer. Whether you do or not is up to you.

    If you have excellent seizure control and the employer does not ask any health-related questions, there’s no reason to start talking about epilepsy unless you want to.

    Under the Americans with Disabilities Act (ADA), employers may not ask any health-related questions until after they have offered you the job.

    The important thing is whether you are able to do the job as described. Employers are also required to make reasonable accommodation for a disability.

    If you decide to talk about your epilepsy, or if you have to because of a legal question from the employer (after a job has been offered), remember that the more confident, well-informed, and relaxed you can be, the more reassured your employer is likely to be.

    Epilepsy and Employment

    http://epilepsytalk.com/2012/11/13/epilepsy-and-employment/

    Comment by Phylis Feiner Johnson — June 9, 2014 @ 2:12 PM

    • To be honest I don’t know what I get right now! For the last three years it’s been chopping and changing all over the place. It always used to be with an aura but by last year it had switched to no warning at all. The last one I had in February my head started feeling peculiar and as I had started to feel hot I went upstairs, stripped off to cool down quickly and laid on the bed. Next thing I know is the post seizure wake up. It could be absolutely anything now, until I’ve had a couple more I won’t know what the new pattern is likely to be. I shall worry about it if and when it happens. I would just like to make it clear to my brain, that was not an invitation.

      I know a number of people here in the UK don’t disclose their condition by choice which is fair enough, but having spent most of my working life in insurance claims I never like to take anything for granted.

      One good thing we have here in the UK is the Two Ticks scheme. If an employer is part of the scheme then provided you have the minimum requirements for the job, you get a guaranteed interview. With the job market as it is at the moment, interviews are gold dust for everyone.

      Comment by bardotbarbiturate — June 9, 2014 @ 3:00 PM

  10. Bardotbarbiturate, do you think the heat is an aura? That sudden body temperature change which seems strange and tells you something’s going to change?

    As for the Two Ticks system, it sounds great IF you get the job!!!

    Comment by Phylis Feiner Johnson — June 9, 2014 @ 7:25 PM

    • I think heat being an aura is a possibility but with that being the first time it’s happened it’s too early to tell whether it’s a new feature. If I overheat it can trigger a seizure which makes summer tricky and in winter if I’m wearing clothing that’s too thick for the activity I’m carrying out it’ll set it off.

      First step to getting a job is getting an interview! I would say that 99% of the interviews I had last time I was unemployed were Two Ticks ones. I want to get a job on merit not because I have epilepsy which is why a lot of people have chosen not to take advantage of it. Since the recession and rising unemployment, they have changed their minds because getting an interview these days is so very hard. I don’t like getting interviews because of my epilepsy but needs must when the devil drives. Pride is a luxury that doesn’t pay the bills. I’ve started to look for work again but jobs I have experience in are scarce and jobs in the career path I want to change to are even scarcer. I should probably sign up with Remploy again. They’re a company who help people with disabilities and medical conditions find jobs and they have access to vacancies which aren’t advertised with anyone other than Remploy. Yeah, I really need to get my butt down there this week.

      Comment by bardotbarbiturate — June 10, 2014 @ 5:37 AM

      • I really respect you for your honesty and your integrity. And hopefully, soon, your perseverance, too! :-)

        Comment by Phylis Feiner Johnson — June 10, 2014 @ 11:31 AM

  11. Freya, It doesn’t matter what you call yourself. It’s WHO you are that really is important.

    And you sound like a very enlightened, intelligent, empathic individual.

    Comment by Phylis Feiner Johnson — June 9, 2014 @ 7:30 PM

  12. I have always worked until recently. Great post.

    Comment by thegamesmybrainplays — June 9, 2014 @ 7:50 PM

  13. Excellent Forum,,, Sharing a whole lot more than just Epileptic seizures.
    Ironic,,, My 20 years employer calling ambulance when I started having seizures at work knew more about my own seizures, before I knew anything about Epilepsy.
    Refusing to accept the employers “COMPLAINTS”,,, I agreed for medical evaluation from Stanford University Hospital, taking a week off employment.
    Watching myself having TWO GRANDMAL SEIZURE ON VIDEO recorded by the University Hospital was just a shock of a lifetime, accepting a whole new reality to compromise with my employer for scheduling my employment around my seizures.

    I’ve come to understand that I was uninformed about Epilepsy, just like my employer & the people I’ve come to know for most of my life.

    Comment by Ghebre — June 9, 2014 @ 9:23 PM

  14. Oh Gerrie, I never knew.

    What a horrid way to discover that you had epilepsy.
    What was the outcome, with your employer?
    “Reasonable accommodation” or into the slag heap?

    Comment by Phylis Feiner Johnson — June 9, 2014 @ 11:57 PM

    • OH Yeah Phyllis,
      While the “discovery” was tormenting, embarrassing, infuriating,,,, the managment was either wise enough to avoid litigation for miscalculated decisions or very considerate, understanding & sympathetic to the “old Gerrie with new medical ordeals”.
      After all, after two decades of employment, helping build start up company set foot & successfully expand to solid mid-size company, solid employment history & records has been established already, until Epilepsy came around to shake the ground.
      Therefore, amicable compromises was made, to keep working in the same company, while scheduling could vary around seizures.
      In fact, the company has been supportive beyond expectations, winning one battle against Epilepsy.

      Comment by Ghebre — June 10, 2014 @ 5:24 AM

      • Gee Gerrie, that’s a no-brainer. They company is smart enough to know when they have gold!!!!

        One more attribute I didn’t know about you.

        What other gems come next? :-)

        Comment by Phylis Feiner Johnson — June 10, 2014 @ 11:23 AM

  15. My experiences have been much the same over the past 40+ years. When I was first diagnosed as a teen I can remember praying that the problem was diabetes and not epilepsy. Ignorance and fear combined. But it was epilepsy and I hid it from employers and friends. I once had a drop attack in front of a co-worker, but I caught myself on the copy machine. In the split second that it took to regain my composure I claimed that I had tripped on the carpet. I don’t know if he bought it, and I continued to have mycolonics throughout the day. I still work, but now days I have a different philosophy…tell ‘em.

    As for be a person with epilepsy vs. being an epileptic, I totally agree (having epilepsy doesn’t reduce any of us to the status of being a verb). BTW, my wife has MS. I often call her a “scleritic” with much affection (and for humor).

    Comment by Tom — June 13, 2014 @ 2:20 PM

  16. Tom, it was NOT ignorant for you to think you had diabetes.

    According to recent research, epilepsy and diabetes have more in common than we thought.

    The key commonality is fluctuating blood sugar. People with hyperglycemia tend to have focal or local seizures. And those who are hypoglycemic, tend to have tonic-clonic seizures…

    http://epilepsytalk.com/2010/05/10/epilepsy-and-diabetes-%E2%80%93-confusion-or-common-%E2%80%9Ccure%E2%80%9D/

    Catching yourself on the copy machine is sort if ironic.

    In my “don’t ask, don’t tell” days, the copy machine next to my office caught fire. Everyone was evacuated, except me. On the other side of the door I was out cold from a seizure.

    Imagine my secretary’s surprise when I came out a few hours later and asked: “Where’s the copy machine?” She looked at me as if I had just come from Mars!

    And yes, like you, now “I tell ‘em.” Part of it is because I’ve become more comfortable in my own skin. Part of it is maturity (I started having seizures at 12. I’m now 61.)
    And part of me is the unwillingness to put up with the discrimination and ignorance.

    Comment by Phylis Feiner Johnson — June 13, 2014 @ 4:24 PM

  17. Can taking 1000 of Keppra & blood pressure medicine & 81 mg. Asprin together trigger a seizure ? Thanks for your wonderful site :)

    Comment by Judith — June 16, 2014 @ 9:41 AM

    • Excellent question,,, Every time I get headache & WANTED to take ASPRIN, I always get worried,,, If it’s any good idea,,, MIXING DILATIN WITH Asprin???
      It’s probably NOT.

      Comment by Gerrie — June 18, 2014 @ 7:33 AM

      • For aches and pains, acetaminophen (such as Tylenol, Panadol, Excedrin Aspirin Free) is probably the safest medication. And Aspirin also appears safe — but it should not be given to children.

        But I would stay away from Bayer and Anacin.

        Comment by Phylis Feiner Johnson — June 18, 2014 @ 10:22 AM

  18. Blood problems: Levetiracetam can cause low red and white blood cell levels.

    http://chealth.canoe.ca/drug_info_details.asp?brand_name_id=1826&page_no=2#Warnings

    So, I guess blood pressure medicine would be a plus.

    For aches and pains, acetaminophen (such as Tylenol, Panadol, Excedrin Aspirin Free) is probably the safest medication. And Aspirin also appears safe — but it should not be given to children.

    So, although this is pure conjecture, I would say “no”.

    Comment by Phylis Feiner Johnson — June 16, 2014 @ 10:00 AM

    • Thank you. I’ll probably take your advice. Do you promote natural help? I’m a great believer in that. But have found nothing in search in to help.

      Comment by Libby — June 16, 2014 @ 12:05 PM

    • Thank you. I’ll take your advice. Using pain killers don’t help anyway. So I can’t see the point.x :0)

      Comment by Libby — June 16, 2014 @ 12:08 PM

      • Well Libby, I actually believe in Complementary Medicine…which is just as it sounds. Traditional Medicine, plus Alternatives.

        We both teleconference with Dr. Mark Stengler, who unfortunately is on the west coast. (We’re in PA.)

        Arthur goes to a pain specialist who believes in non-intervention and he is an MD.

        I go to PT for my balance and falling from seizures. (I wish I had a dollar for every concussion I’ve had.)

        Here are some articles that may interest you:

        Brain Food for Your Health…

        http://epilepsytalk.com/2011/06/21/brain-food-for-

        your-health%E2%80%A6/

        Fighting Seizures Nutritionally

        http://epilepsytalk.com/2009/11/26/fighting-seizures-nutritionally/

        Epilepsy: Meditation vs. Medication

        http://epilepsytalk.com/2013/12/21/epilepsy-meditation-vs-medication/

        My husband writes for a health and wellness company (mostly supplements and doctor’s newsletters.)

        I was in the same field for 10 years.

        And yes, we believe in what we write.

        (Please don’t ask me to name our supplements, because it would take all day. But Fish Oil and CoQ10 — Co-enzyme 10 — are two top ones on the list.)

        Comment by Phylis Feiner Johnson — June 16, 2014 @ 3:21 PM

  19. I used to keep my epilepsy a secret. I’d do the same things others a do. There was a time when I almost fell in front of a coworker. I quickly regained my composure and claimed I tripped on the carpet. Then my life changed when the seizures got more serious and I had to accept the facts. I had my first TC seizure in public while shopping alone at the Home Depot in Jantzen Beach (Portland, Oregon). When I came to, I found myself on my back, confused and unaware of what happened. But I was blessed that day by a store clerk who did exactly what I would have asked. EMTs arrived to make sure I was okay. They all stayed with me until my wife arrived. They allowed me to decide if I needed an ambulance; there was no crowd of onlookers; I felt their compassion and respect. I later called the store and expressed my appreciation to the fellow who helped me. I was told that he is to be given an award for his actions. So, while it was a situation that I feared the most, I was being looked after and it turned out alright.

    Comment by Tom Waltz — September 25, 2014 @ 2:08 AM

  20. Well Tom, you’re a bit luckier than me. I had tons of seizures in high school.

    There were times when 1,1200 kids were changing classes all at once.

    One time, I had a seizure right smack in the middle of the hall and the kids just walked over me and my book bag, splayed on the floor.

    Nice, huh?

    (I don’t think anyone got any awards!!!)

    Comment by Phylis Feiner Johnson — September 25, 2014 @ 12:02 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've 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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