Epilepsy Talk

The First Time… | May 30, 2017

I remember five jets of water, pummeling from the shower walls and ceiling.

All of a sudden, a metallic taste in my mouth.

Strange and disgusting.

I continued to wash my hair, which was long and took forever.

Suddenly my mouth filled with saliva.

“Oh, it’s just the water,” I thought. (How dumb was I?)

Then I started to drool.

My blood felt like it was whooshing out of my body, through my toes.

Time to get out of the shower.

But I couldn’t.

“Oh no. I’m going to drown.”

A heavy wheel-like handle prevented my exit.

I pushed it, turned it. I threw myself against the door.

I was going down for the count.

And as I did, I screamed. I thought it was all over.

Then nothing.

I awoke — to more screaming.

Body half in and half out of the shower.

I knew something was desperately wrong.

But I didn’t know what.

Just that I was still alive.


  1. Oh wow, sorry to hear that. I was totallyt out for 45 minutes (Walmart). Oh the shame. Not them, but me. I looked around. Just me and what looked like stretch wrap 360 degrees. Must of been awake some. I was combative, crying and who knows what else. I was put down on a stretcher, face down, in cuffs.


    Comment by Foghorn The IKonoclast — May 30, 2017 @ 3:43 PM

  2. Peed too. lol


    Comment by Foghorn The IKonoclast — May 30, 2017 @ 3:43 PM

  3. never ever let anything ever get to you and if anyone ever says anything to you about what happened just remember it is not your folt your friend susan


    Comment by pooterbear — May 30, 2017 @ 5:23 PM

    • No, that was the direct opposite of how my husband reacted. No wonder we’ve been together for 37 years! 🙂


      Comment by Phylis Feiner Johnson — May 30, 2017 @ 5:30 PM

      • Susan, I’m glad you were ok. I cry after my seizures. Not screaming, more like weeping for about 10 minutes. I’m also happy you have a supportive husband. Mine left me, because he couldn’t be so bothered.


        Comment by Lee — June 3, 2017 @ 8:09 PM

  4. Was this your experience, Phylis?


    Comment by john lyden — May 30, 2017 @ 5:25 PM

  5. It was interesting hearing these experiences. After a
    major seizure my son would cry for thirty minutes. I asked the neurologist and was told it was part of the post ictal period but was never explained why. Why crying? I wish I knew more about that.


    Comment by Ann — May 30, 2017 @ 10:34 PM

    • There’s a lot of confusion, anxiety, exhaustion, fear and all kinds of emotions, swirling around.

      Maybe relief also, that you’re still here.


      Comment by Phylis Feiner Johnson — May 31, 2017 @ 7:42 AM

  6. I always cry as I am coming out of a seizure. I’m always gasping for air and it’s a frightening feeling. I don’t cry for that long though. My first seizure, I was visiting my father in the hospital. He had just had bypass surgery and we were called back to the hospital because he suffered a stroke while still in recovery and was in a coma, so I was very distressed. I remember smelling a strong chemical smell and was wondering why no one else was commenting on that smell. My vision began to look like I was looking through moving water. I later learned that when my vision did that, that my eyes were moving back and forth rapidly from side to side. I felt dizzy and fell. I awakened with nurses all around and I couldn’t talk immediately. When my speech started to return, it was slurred. It felt like my mouth was paralyzed. After an EEG, I was told I would need to take seizure drugs for the rest of my life. I was asked if I ever had had a serious head injury. Yes, 30 years ago! The brain MRI showed that was the cause. Now my seizures are more violent and I have had 3 episodes of status epilepticus this past year.


    Comment by Terri — May 30, 2017 @ 11:45 PM

    • Oh Terri, how awful!

      Traumatic brain injury can shows up years after the fact. (As you know.)

      And studies suggest that approximately 6% of patients with epilepsy have TBI as the cause. It generally depends upon how severe the head trauma was.

      I think the smell was your trigger. It could have been an actual sanitizer smell from the hospital that set you off that time.

      What are your triggers now?

      As for the meds, have you ever considered a Vagus Nerve Stimulator? (VNS)

      Vagus Nerve Stimulation…Is it for YOU?



      Comment by Phylis Feiner Johnson — May 31, 2017 @ 7:52 AM

      • I have read about VNS but my neuro has never suggested it. My seizures start in my frontal lobe. I don’t know if that makes a difference. I was put on Onfi a few months ago and so far it is working very well. But in my history it seems that many drugs stop working after some time, so I guess we will see.


        Comment by Terri — May 31, 2017 @ 1:39 PM

      • As far as triggers, stress is my number one trigger. I have 2 types of seizures, tonic-clonic and myoclonic. Certain fluorescent lights, but not all trigger the myoclonic as well as driving past sunlight flickering through trees.
        I also have hyperinsulinism which causes hypoglycemia and I often have tonic-clonics when my blood sugar goes low. Being overheated and overexercising seems to bring them on also. I still sometimes smell odd smells beforehand that no one else smells.


        Comment by Terri — May 31, 2017 @ 1:50 PM

    • My seizures were a result of an injury when I was Two. Tests confirmed i would function well with that part of the brain removed… no more seizures. Discontinued medication 4 months ago.
      If interested in testing, I’ll send you information


      Comment by Laura — May 31, 2017 @ 7:54 AM

      • THANK YOU so much Laura for the generous offer!


        Comment by Phylis Feiner Johnson — May 31, 2017 @ 8:13 AM

      • Yes, I am interested in more information. Thank you, Laura.


        Comment by Terri — May 31, 2017 @ 1:37 PM

    • I always cry, too….


      Comment by Stacy — June 2, 2017 @ 11:56 AM

  7. I remember the first time I had a seizure. I was 18, and it was the summer before I started attending Boston University. I was sitting at the kitchen table with my mom. All of a sudden, I got incredibly tired and felt a dull pain in my right temple,almost like a mini-concussion. Before I could speak, everything went blank. My mom said my head bobbed up and down. I started shrieking, “F you!!” I would never say that to my mom consciously, because she was my world. Then I burst into tears. I repeated this cycle several times over the course of a few minutes before my head hit the table. When I finally came out of the trance, I raised my head. My mom’s face was beet red, and she was covered in tears.

    “Why do you hate me so much?,” she exclaimed.

    I had no idea what transpired.

    The next time it transpired, she put two and two together. I thanked God that she had been a nurse and was currently a pharmacy technician. She recognized that these episodes were seizures. She brought me to an epileptologist, who would eventually save my life from a status epilepticus seizure in 1995. We are friends to this day, and she works with my current epileptologist at BWH in Boston.


    Comment by megambon2164 — May 31, 2017 @ 9:49 AM

    • Thank God for your mom AND for the fact that you’re still with us!


      Comment by Phylis Feiner Johnson — May 31, 2017 @ 9:52 AM

      • Thanks, Phylis. I enjoyed our conversation Sunday. Glad I lived to share – and write about – my story and and converse with others who have had similar experiences. I don’t feel so alone. It gives me so much hope!


        Comment by megambon2164 — June 1, 2017 @ 3:18 PM

    • Wow! I find it interesting how many differences there can be in seizures. I have come across some in the medical field that believe only the typical grand mal seizures you see on TV are true seizures. I have been told after a seizure that “it didn’t look like a seizure” because only my upper body convulses. It’s surprising how many drs and nurses are not well informed at all on how many different types of seizures there are. It’s a blessing your mom picked up on it. Glad you’re feeling better.

      Liked by 1 person

      Comment by Terri — May 31, 2017 @ 1:57 PM

  8. Love your discription! I have one riding on a bus hot and sweaty from a wonderful experience from camp! Walking into Denver airport going home not able to make 10 steps things went blurry and black! Woke up in an ambulance blaring a musical chime! I blanked out again! I was in a green room in University of Colorado Emergency room, asked if I could go home, had no Idea what happened asked for some bandaids and something for my terrific headache but I just wanted to go home! They said no! A social worker contacted my parents and told the ER physicians that I was safe for me to fly back to Los Angeles. The social worker stayed with me at the airport till I took off and I flew First Class. I was truly Blessed!

    Liked by 1 person

    Comment by red2robi — May 31, 2017 @ 9:51 AM

  9. Wow. I’m so glad you got such good care all the way.

    As you know, it could have been a disaster. 😦


    Comment by Phylis Feiner Johnson — May 31, 2017 @ 9:54 AM

  10. I love your discriptions that those of us understand so well! Thank you! I have been blessed! I have had sz’s while rock climbing, horseback riding, driving, going to school but parents always told me to pray never went to a physician until I was 18. Had sz’s when I was young, but more evident puberty! I ended up on the Medical field but being pregnant thru my system out and now seizures are out of control. Had 2 surgeries, VNS 2001. I wish the best for everyone!


    Comment by red2robi — May 31, 2017 @ 12:47 PM

    • So sorry to hear your seizures are out of control. Mine were too all last year mainly due to severe stress…domestic violence. I have tried every med out there. My neuro put me on Onfi, a fairly new med. It is VERY expensive. I’m on Medicare and my co-pay was over $1K! I couldn’t afford it on disability as my sole source of income. My neuro found an organization called NORD…National Organization for Rare Diseases, who are paying my entire co-pay by means of a grant. That’s roughly $5K per year. It was a true blessing. I have had only one mild seizure since starting it. It is in the benzo family which seems to work well for me. I also use Klonopin for my myoclonic seizures which is the only med that helped them. Onfi helped reduce them even more. Just a thought I am throwing out there for those who are having uncontrolled seizures. I lnow not everything works for everyone, but it’s worth a try. Be well.


      Comment by Terri — May 31, 2017 @ 1:32 PM

  11. Thank you ALL for sharing your stories and what works for you.

    We can all learn lots from each other.


    Comment by Phylis Feiner Johnson — May 31, 2017 @ 4:46 PM

  12. Not nice, I have gone through a lot of stupid things myself. When seizures first started. Because I did not want to believe I was epileptic. Hope you find a way to control the seizures.


    Comment by Steven Saunders — May 31, 2017 @ 11:05 PM

  13. It broke my heart to read all the comments above. My sweet daughter died six years ago from SUDEP, My husband and I witnessed all the above with her, the stigma, the prejudice and all her pain. May God bless all those who are suffering as she did for 50 years. She had epilepsy from the day she was born.
    Like Philis we have devoted our lives to bring awareness and help to all those afflicted.
    Please go to Nina’s website:


    Comment by Thomas and Nadia Davies — June 1, 2017 @ 1:51 PM

    • For those of you that don’t know Thomas and Nadia Davies, they are not only ardent advocates, but also the authors and founders of “Nina’s Courage”.

      The URL for the website is http://www.ninascourage.org

      I encourage you to take a look.


      Comment by Phylis Feiner Johnson — June 1, 2017 @ 6:24 PM

  14. “Megambon”, It was wonderful speaking to you and hearing your story (even though it’s not a happy one). Merely proof that with grit and a positive attitude, one can survive and live to write (a book?) another day!


    Comment by Phylis Feiner Johnson — June 1, 2017 @ 6:20 PM

  15. Followup on comment by Thomas and Nadia Davies, June 1, 2017

    The URL for the website is http://www.ninascourage.org.

    info@ninascourage.org is the email address.


    Comment by Thomas and Nadia Davies — June 2, 2017 @ 1:57 PM

  16. For two years before my one and only tonic clonic seizure I would experience a tightening in my throat then light headedness and finally tingling from the top of my head to the tips of my fingers. I called them “episodes” but never knew they were partial or focal seizures. My GP thought they were due to my allergies and possible fluid in my ears. He never suggested any further testing. Finally, on 01/14/15 I was so tired I slept most of the day and went to sleep early in spite of all the sleep I already had gotten. At 3:00 AM the following morning, my husband said I moaned and then started shaking. When he flipped on the light, there was blood coming from my mouth and I had stopped trembling but was unresponsive with my eyes opened.

    My husband yelling my name woke my 17 year old son who was told to call 911. He then ran to a neighbor who was a fireman. The good news was I had a pulse and was breathing. After a 15 minute postictal period, I awoke to the EMT putting me on a stretcher. I asked what was going on and was told I had a seizure. Me? I don’t have seizures! Being in my 60’s, I assumed they were wrong and that it must have been a stroke. In the ambulance, I flexed my hands and toes….no paralysis, but why was my speech slurred? It was because I had bitten my tongue during the seizure, thus the blood from my mouth.

    I have been on Levitericetam (generic Keppra) for two years and have not had any other seizures, big or little. My neurologist at Weill Cornell gave me the option of trying to come off the meds but advised I had a 35% chance of another one. He then suggested a 24 hour EEG before he would stop the meds. That showed left temporal lobe activity which gave me a 65% chance of seizing, so he told me I was on the meds for life.

    I started reading your website in 2015 and learned so much. Today, I learned from these other posts how lucky I was. My full blown seizure was nocturnal and in bed. It is scary knowing that the focal seizures happened in many places, in bed waking me, the shower, and even driving. The thought of what might have happened is frightening. Thanks for sharing your knowledge and giving us a place to share our stories.


    Comment by Helen — June 10, 2017 @ 9:22 PM

  17. hi phylis if you ever come to las vegas I would like to see you if there is anything I can do let me know


    Comment by pooterbear — June 11, 2017 @ 2:53 PM

    • I used to go to Las Vegas three times a year to visit my Dad. But since he’s died, I haven’t been there once.

      So the chances of meeting you are slim. I wish I knew you back then. 😦


      Comment by Phylis Feiner Johnson — June 11, 2017 @ 2:57 PM

      • me to but if there is anything I can do for you let me know your friend susan


        Comment by pooterbear — June 11, 2017 @ 3:17 PM

  18. Thanks Susan, you’re the BEST!


    Comment by Phylis Feiner Johnson — June 11, 2017 @ 3:32 PM

  19. Phylis,

    Thank you for your reply.

    I would never go off my meds. The only reason my neurologist suggested trying to go off the meds was because they could not find any reason why I had the seizure. He felt that since I could not drive for one year anyway, that was the time to test it. It was not worth it to me to put my family through that nightmare again.

    During that year when I could not drive, I had a wonderful support system in family and friends. Once a week, my sister took me to food shop, do banking and get other assorted necessities done. Once a month, a friend drove 50 miles to help me shop for my son’s dorm items and to just get me out of the house to take time to “smell the roses”. Other friends would take me to breakfast or lunch for a change of scenery from my house. My husband and son filled in on weekends and for doctor appointments. Without these people, I don’t know what I would have done. I am a lucky person to have had so many people who understood my dilemma.


    Comment by Helen — June 11, 2017 @ 5:59 PM

    • My “no-drive” period was not so pleasant, so I’m glad you were surrounded by such generous, caring, loving people.

      It must be a reflection of your personality and generosity.


      Comment by Phylis Feiner Johnson — June 12, 2017 @ 8:20 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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