Epilepsy Talk

Confessions of 30 years with epilepsy… | April 24, 2010

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. 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.

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

And my beautiful, long hair was falling out.

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 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 amazed and said to myself: “He’s a keeper!” And he has been for 33 years.

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

But I still couldn’t button a shirt or tie my shoes, no less find the key board. 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. And I was better off than a lot of other people who had Cancer, Alzheimer’s, Cerebral Palsy, and Parkinson’s, to name a few.

So I decided to turn lemons into lemonade. I ditched my day job (I had my own freelance writing business for 25 years) and I became a full-time epilepsy advocate…helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.


34 Comments »

  1. Thank you for giving me your story.. I feel priviledged to have contact w/ you. My seizures are very mild at this time and life.
    I used have status attacks when I was in my 20’s. I am so much better! I remember being on ventilators and taking time to get back to my normal self. My memory was shot during that time period.

    You had a lot of therapy in re-learning things to go back to work and realizing a new field to start. You are a good inspiration for many.

    I changed my work from law enforcement to working in the medical field. Now I am a mother raising youth.

    Like

    Comment by Tonialpha — April 24, 2010 @ 5:52 AM

  2. Wow! You went through major changes too! From law enforcement to medical field to mom. How many children do you have? What are their ages? (I never had the courage to have kids. It’s the hardest job in the world!)

    Like

    Comment by Phylis Feiner Johnson — April 24, 2010 @ 6:11 AM

  3. Law enforcement was great. I lost my license while I was in college, I had a tonic/clonic in my statistics class.

    I did ID work, when I lost my license. I had to book, fingerprint and take pictures in the station and assist out in the field. I had one in the station and they suggested to go in another field.

    My Neurologist suggested working in the field of Neurology. I did and I worked from ’80 to ’92.
    I have 2 children, now teenagers and I had help from babysitters and nurses-aids at times. My husband is wonderful.

    Like

    Comment by Tonialpha — April 24, 2010 @ 6:20 AM

    • A statistics class alone is enough to send ANYBODY into a seizure! I remember going to my statistics final. The girl on one side of me started to cry and the one on the other side started to puke. I only passed because of the blessed “bell curve!” 🙂

      What did you do in neurology? It sounds as if you liked it since you worked there for 12 years. Did you leave to have your children? Would you want to go back to it?

      Like

      Comment by Phylis Feiner Johnson — April 24, 2010 @ 8:47 PM

      • Statistics was not my bag. I understand where you are coming from only to well!

        My Neurologist told me do a less stressful situation. He was like a brother. He was great most of the time! He was part of our wedding. He also had to talk to me like a doc. He said to go Orange Coast College and learn to be a great EEG Technician. I worked several great hospitals in Los Angeles Medical Centers.
        WE thought not to have children. I ad my second surgery. I suddenly wanted children. I had my first and had a neighbor help. I had a wonderful surprise w/ the second one. The first pregnancy I was on less medication and I had a status attack, but the baby was fine! The second one, I was taking 2 meds and had no problems, but we needed someone here. Once in a while I wonder what it would be like.

        Like

        Comment by Tonialpha — April 24, 2010 @ 10:12 PM

      • Hi Phylis,

        “A statistics class alone is enough to send ANYBODY into a seizure!”

        LOL!

        Oh dear, I can so relate. I just sat for my stats final about 3 weeks ago, and I slept through quite a bit of it because of the Keppra that the docs put me on just the week before my exam.

        Needless to say, I had the worse grade in that final exam than I’ve ever had in my stats course (we had 4 tests in total).

        But I would say, in the grand-sceme of things, I’ve had better control with Keppra! And I did pretty well in the course in general considering the circumstances!

        Like

        Comment by snowwoman — May 2, 2010 @ 9:52 PM

  4. My husband is great, he was from the first about my epilepsy.

    I never could get a job, my seizures were that obvious. I could not hide them.

    Like

    Comment by Ruth Brown — April 24, 2010 @ 4:06 PM

    • Tonialpha, Seems like you had the best of all possible worlds…an ace doc and a supportive husband. Are you sorry that you weren’t able to stay home with the children? What were you working at when they were little? Still the EEG job or something else?

      Like

      Comment by Phylis Feiner Johnson — April 25, 2010 @ 12:16 AM

      • I have been always home. I need to have someone watch me and the kids. My seizure activity would have me in the hospital at times. I would try to work thinking I was fine and I would be out like a light. They would ask me to leave for the protection of me and others. It was 95% of the time. I embarrased my kids a few times while volunteering at school. THe Neurologist, I worked for understood my seizure activity and felt it would be a benefit to work in his office. WHen I would drop things and run, plus I babble, he felt I should stay at home. He will ask me questions and I will give him an opinion. We were friends too. I would see the different medications of other people would get, Parkinson’s, MS, CVA and other Neurologic disorder were interesting to learn from. A lot of people love having someone to listen to their situation.

        Like

        Comment by Tonialpha — April 25, 2010 @ 12:59 AM

  5. And aren’t we grateful we don’t have any of those other diseases!

    Like

    Comment by Phylis Feiner Johnson — April 25, 2010 @ 3:14 AM

  6. I went to a boarding school. A friend read a short story that we may have heard. This person was a joy and inspiration who you could talk to on the phone. When you were introduced, you saw a person w/ no arms and legs, but a very supporting person to talk to.

    I was asked to leave the boarding school my parents went to but the story always was in the back of my head! He puts us where we are needed!

    Like

    Comment by Tonialpha — April 25, 2010 @ 4:12 AM

  7. I met somebody on the Internet yesterday. He had 2 fingers missing from birth. His mother took Thalidomide. It was considered a miracle drug for pregnant women in the early ’70’s.

    Children were born without arms and legs. Some had more than two legs, all deformities that you can and cannot imagine.

    Would you believe it, Thalidomide is still on the market? They are testing it for something else now. Look it up on the internet!!

    Like

    Comment by Ruth Brown — April 25, 2010 @ 9:54 PM

    • I also know a Thalidomide “baby.” He was born with an arm which stops at his elbow, attached to a misshapen hand with litle balloon fingers. 😦 But he’s learned to cope and make the best of it.

      Like

      Comment by Phylis Feiner Johnson — May 2, 2010 @ 10:02 PM

      • yes Thalidomide is still on market , this time for cancer ,& Leprosy treatment ,{ didnt know they had Leprosy , still around, unless its in the middle east ].. they gave it to my mom , back in the 50’s , thats when , my mom , found out on certain studies , that missing limbs , deformed , threw the bottle away .. one of my friends , mention it , because her son had Autism , told her no way would they give that meds for a pregnant woman today , many OB/ GYN drs , will , tell you soda crackers are the best ..

        Like

        Comment by cathy — August 9, 2014 @ 4:08 AM

  8. It is sad and wrong that they did not make sure Thalidomide was safe.

    Like

    Comment by Ruth Brown — May 3, 2010 @ 6:23 AM

  9. Criminal. Thank you once again, FDA. 😦

    Like

    Comment by Phylis Feiner Johnson — May 3, 2010 @ 9:57 PM

  10. I also had an experience with Depakote in 1979. I told my neurologist that I was pregnant. He told me that I cannot get pregnant with the med. He had not told me before, when he put me on the med.

    I saw on an ad on TV that Depakote causes deformities and health problems in children. I cannot think of the other word. They are a law firm that is suing for damages. I might just sue!!

    My last child was born that year and he does have health problems that I do not think he would have had otherwise. This is my son who is living with us. He is a great son!!

    Like

    Comment by Ruth Brown — May 3, 2010 @ 10:26 PM

    • Go for it! I’m sure it’s a class action suit, so you probably won’t get much…but at least it would be a moral victory!

      Like

      Comment by Phylis Feiner Johnson — May 4, 2010 @ 2:14 AM

  11. have 21yr old daughter,has epilepsy for 18 yrs.she has not responded well to anti convulsant drugs.was last on topamax,broke out with cold like sores on lips and private area with rash on hands also with sswollen areas on throat taken off topamax now on vimpat but symtoms keep occuring , has been taken anti-viral medication off and on since december although been told yo stay on vimpat although last blood tests were giving cause for concern…… can you help

    Like

    Comment by william havlin — May 26, 2010 @ 4:59 AM

  12. According to drugs.com “Vimpate side effects do include severe allergic reactions (rash; hives and itching…”

    That being said,accoding to the Vimpat website: “Seizures were reduced by 50% or more in many people who added Vimpat to their current medication.People who had taken several other epilepsy medicines in the past had improved seizure control after adding Vimpat.”

    My suspicion is the anti-viral drug is inhibiting the effectiveness of the anti-epilepsy med. What is your daughter taking it for?

    Do both her GP and neurologist know all of the drugs she is taking? Because one drug can definitely affect another in its interaction. Even over-the-counter meds, like antihistamines!

    Finding the right med mix is a crap shoot, I know. But when you add another type of drug (the anti-viral) the issue becomes increasingly cloudy.

    I wouldn’t give up on the Vimpat just yet. Especially since she’s had the same reaction to the Topomax.

    I would try to find the source of her swelling, have a complete bloowork run and take it from there.

    If she is one of the 30% of people who are drug resistant to Anti-Epilepsy Drugs (AEDs), which you don’t know yet, I would suggest one of the anti-epilepsy diets.

    Let me know how you make out and we’ll try to take it from there.

    Best of luck to you and your daughter!

    Like

    Comment by Phylis Feiner Johnson — May 26, 2010 @ 8:29 PM

  13. My infections take longer to heal the longer I have been on medications. That may be coincedental.

    I am off Vimpat as of today. I am back on Tegretol. I was allergic to Tegretol before and right now, I am not having effects. We are watching the effects.

    I did have allergies to Dilantin and other sz drugs.

    I would address it w/ the doctor if you have question on allergic reaction.

    Like

    Comment by Tonialpha — May 27, 2010 @ 4:40 AM

  14. Yup, Its taken me 30 odd years and writing off 5 or so cars to realise that I need to live with it and not against it. At least on the bright side, Epilepsy keeps me looking young as the medication causes the skin of a teenager!!

    Like

    Comment by Craig — February 29, 2012 @ 2:38 PM

  15. LOL! I lied about having epilepsy when I went into Driver’s Ed. I was in the instruction car with three guy friends of mine.

    I passed the Driver’s License Test (probably because I was a girl and a year older than them). It was the the first and last time I did a perfect parallel park.

    My mother had a beat up Plymouth which she gave me to drive.

    I had six accidents with NON-MOVING objects in 10 days.

    The final coup de gras was when I wrapped the car around a cement pillar in the parking garage.

    I went to the body shop, got an estimate and gave my mother the keys and a check.

    I didn’t start driving again until 10 years later, when my epilepsy was “on holiday”!

    Like

    Comment by Phylis Feiner Johnson — February 29, 2012 @ 3:26 PM

  16. I live with my sister an her family this last december she was diagnosed with epilepsy. Since the first of march she is lucky to go 5 days without one. She’s had up top 8 a day. She’s miserable. She’s on there different medications an there not working. Anyone with any ideas?

    Like

    Comment by Terri — April 8, 2012 @ 2:16 AM

  17. Well, at the start, diagnosis is the most important thing, Terri. Try reading…

    Beyond EEGs…Diagnostic Tools for Epilepsy
    https://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    It will at least educate you about the different forms of testing and what they do. THAT can have a major affect on what kinds of meds that are diagnosed.

    Second. How did you find out about your doc? You might want to seek a second opion.

    2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
    https://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

    This is a compilation of docs by website forum members who have had positive, personal experiences with these docs over the years.

    Third, seek information, so you can get a better idea of what your sister is going through. My favorite (other) information site is http://www.epilepsy.com.

    I would suggest going to http://my.epilepsy.com/forum?CMP=ILC-SHRT. At the top are blue tabs that are drop-down menus. Go to the second one named “About Epilepsy” and it will give you a short “course” of education about epilepsy, written in real, human talk. No mumbo jumbo.

    They also have forums there that you might be interested in joining. Look around and see if they fit your needs.

    And most of all Terri, please realize you are not alone and there are many smart, caring, compassionate people out there willing to help you. All you have to do is ask.

    Like

    Comment by Phylis Feiner Johnson — April 8, 2012 @ 11:11 PM

  18. sounds like myself Phylis , was working at this one job as a security , for a bank , { my mom would tell me “NEVER put down i had seizures , cause no one will hire you “, so i did what she told me .. { dont get me wrong } , did many jobs prior to security , had no issues either .. but this day , was on my Dilantin too , & another meditation ,was a rover , giving breaks , lunches , the company used these boxes like a VHS box , as bombs , i spotted one called it in , on my radio , but forgot , the code, i was suppose to use .. what happen it went over as i found a bomb .. had a seizure right there in the parking lot .. sure , they did a blood test , i had a high toxic levels , liver was inflamed , on the meds i was taking ..brought the the clinic in SF, dept of public health , wrote a note , for me to go back to work , even though my bosses never knew , i made sure my co workers knew , few weeks prior , the owners husband , had a heart attack , fell down stairs injuring himself , they kept me on the job for 2 weeks , then the boss wanted to see me , asked me a simple question , Why didnt i tell her ? , i told her if i did , would i be hired for the job ? i love to work , just want to work . she came out ,” no i wouldnt ” i came out well your husband , had a heart attack is he still on the job ? she told me “yes he is ..& doing fine , we have to cut back , on what he does though “, she did , tell me , this type of work isnt for those with E, but you guys should be , in a field , where others could watch you, such as banking .. i will set you up, she did too ….after working at the bank ,{ Month later , ]…. picked up my last check , found out another person had seizures , & was scared he’d be fired too .. { top this off couldnt rec’vd any UNEMPLOYMENT benefits , because i have hidden the fact of the seizures ..went to “FAIR EMPLOYMENT & HOUSING to file , was let go due to my seizures , won that case , this was before ADA got involved , but there is certain jobs we can do , , but i always make sure my employers know i have seizures ,{ to be on safe side} , because i have no warnings ,, heck , i could be walking to a store , bus stop { yes even on a bus was with my sons which , was 3& 5 yrs old } & have one .. now , been seizure free for 10 yrs now , but in back of my mind , wonder if today , if i will have one ? , guess live day to day , just as long as i take my meds , & vitamins , i will do find

    Like

    Comment by cathy — August 9, 2014 @ 4:00 AM

  19. Cathy, you did the right thing all around.

    Just to prove it, take a look at: Epilepsy and Employment

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

    And I think your actions were admirable, considering the adversity and stress you experienced.

    You’ll probably relate to this article I wrote:

    Damaged Goods

    There’s something liberating in being expected to fail. No expectations, no explanations.

    After all, “you’ll never amount to anything,” you’re damaged goods.

    So you’re free to fall on your face. Or reach for the stars. I did both.

    When I didn’t make friends, it was expected. “Who would want to hang out with me?”

    I flunked out of Science and French. No big deal.

    I was awarded first place in a writing competition. And I had to read my essay in front of the governor! Everyone was stunned.

    Boys headed for the hills after just one date. “Well what did you expect?”

    I jumped off the roof at college. “Poor thing. You’re a sick girl.”

    Then I graduated from college Magna Cum Laude. They couldn’t believe it.

    I keeled over at work. “See? We told you that you couldn’t hold a job.”

    Then I got the job of my dreams. “It must be because you were lying to them.”

    Promotions came easily. They didn’t know what to say.

    I met the man of my dreams. My father had a stroke.

    I was the only one in two generations not to get divorced. I rejoiced.

    Like

    Comment by Phylis Feiner Johnson — August 9, 2014 @ 10:03 AM

  20. Thank you Phylis for your story you have helped me with my daughter siezures and support me through this! Being new to having a teenage daughter with epilepsy you have mad me into a momma warrior to get her well and on the right meds ! So again thank you from the bottom of my heart !

    Like

    Comment by Mona Rowe — February 8, 2015 @ 10:49 AM

  21. Good you are educating people on epilepsy

    Like

    Comment by Kathleen colanton — February 16, 2015 @ 5:50 PM

  22. Thank you Kathleen!

    Like

    Comment by Phylis Feiner Johnson — February 16, 2015 @ 6:04 PM

  23. Phylis,, Have you ever done the real research about the herb LOBELIA ? I have used it now for 30 years, and I know it is a better choice / option to use over any AED which none of them have ever helped me in 55 years. I do know the brain can heal itself, as this herb LOBELIA can make you smarter, and more aware of some things that happens, as you are more sensitive to chemical changes, and too that may the case anyway as one gets older, as at age 21 & younger I was not as sensitive to the many food chemicals as I am today from the GRAND MALS I can have, as I had petit mals then as since 1995 it’s been all GRAND MALS NOW that I have. So maybe my brain has been fully developed after 35 years, that my petit mals were just a sign as having a brain that was not 100% developed. Please find more research about this LOBELIA as I am sure it can help anyone with any brain condition for any type of seizure & etc.. The Amish in Lancaster county PA taught me about LOBELIA, and I have used it ever since 1985, but I don’t take it like it’s a PHARMA DRUG.

    Like

    Comment by James — September 10, 2015 @ 9:24 AM

  24. Lobelia is an effective herb that was historically used in the treatment of epilepsy. It has anti-spasmotic action that helps in abating seizures.

    If you want more info on herbal treatments, go to:

    “Natural Herbal Remedies for Epilepsy”

    https://epilepsytalk.com/2015/01/16/natural-herbal-remedies-for-epilepsy/

    There are all kinds of goodies there, but I’m thrilled the Lobella worked for you.

    Like

    Comment by Phylis Feiner Johnson — September 10, 2015 @ 9:57 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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