Epilepsy Talk

How were YOU first diagnosed with epilepsy? | December 17, 2020

I almost drowned in the shower.

It had three round shower heads on the wall with one more huge one overhead. And a heavy plate-glass door that was like trying to get out of a vault!

All of a sudden, I felt the blood rush through my toes (that’s what it felt like) and I knew I had to get out. Or drown.

It looked like it was going to be option #2. I couldn’t turn the handle. I kept trying, but I was on my way to never-never land.

With one last push, the door miraculously opened and I landed with my head right over the door sill. Body still in shower.

Pretty dramatic.

But, it wasn’t the first or the last time I passed out.

I fell all the time. Up the stairs, down the stairs, standing still.

I  walked into walls (and broke my nose), doors, poles, anything upright.

But everyone thought I was just clumsy. Which I was.

But with a surgeon for a step-father and a psychologist for a step-mother, you thought they’d be a bit clued in.

Maybe they were. Maybe they weren’t.

But when I was diagnosed — at the insistence of my father (at least HE was paying attention), I was told by one and all in my family that I had “crooked brain waves”.

They never mentioned the “E” word. And I never knew any better.

Isn’t denial a wonderful thing?

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44 Comments »

  1. i first found out that i have epilepsy in the year 2000

    Liked by 1 person

    Comment by Sue Easton — December 17, 2020 @ 10:05 AM

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  2. Still do not know what I have, but oh they want to throw drugs at you. If you have two or more nose bleeds you aren’t diagnosed with nose cancer – shouldn’t be told you have epilepsy if you have 2 seizures especially when 7 people tell you you have have a different kind

    Liked by 1 person

    Comment by Angie Log — December 17, 2020 @ 10:10 AM

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  3. From 18 yrs old the doctors gave all kinds of ideas/excuses. Finally my daughter and I started doing research and stumbled across the Epilepsy site due to my symptoms. We printed it out and I took it to the doctor. Prior to that I had a different doctor and had blackout while driving. She gave me meds I was allergic to which led to my see this other doctor who got the ball rolling.

    Liked by 1 person

    Comment by Laura Cernick — December 17, 2020 @ 10:28 AM

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    • Sad when you have to research your own diagnosis. On the other hand, bravo to you Laura for being so proactive.

      Meanwhile, for all your research, the first doctor sounds like a disaster. But your perseverance finally paid off with a living, breathing doctor who was willing to take charge.

      Good for you!

      Like

      Comment by Phylis Feiner Johnson — December 17, 2020 @ 11:36 AM

      Reply

  4. Interesting Read! You ask How were YOU first diagnosed with epilepsy?. All I can tell you is by a neurologist as my seizures either happened when I was going to sleep or coming out. They started at the age of 11/12yrs and as I shared the bedroom with my brother he was able to alert my parents when Grand Mals took place.

    Liked by 1 person

    Comment by Kenneth — December 17, 2020 @ 11:38 AM

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    • Kenneth, Without your brother, you could have been having nocturnal seizures for a very long time, since they’re so hard to diagnose.

      My first seizures were nocturnal, when I was a little kid. I’d wake up tearing at my hair, to stop the spinning inside of my head. It felt like my brain was going 100 mph. Unfortunately, nobody took notice so it was years (many) before I was diagnosed. (They just chalked up the spinning head and ripping hair to nightmares!)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 17, 2020 @ 12:13 PM

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      • I was born with Cerebral Palsy in right side of body and as you probably know left side of bain controls right side of body an visus versus, so my epilepsy is on right side of brain. In recent years neurologist thought it possible the two could be link but he couldn’t prove it.

        Some day i’ll get round to telling my story as you did today lol!

        Liked by 1 person

        Comment by Kenneth — December 17, 2020 @ 12:45 PM

      • I’m sure it’s interesting — and complicated.

        Like

        Comment by Phylis Feiner Johnson — December 17, 2020 @ 1:48 PM

  5. Reblogged this on Disablities & all sorts of Mental Health Issues.

    Like

    Comment by Kenneth — December 17, 2020 @ 11:39 AM

    Reply

  6. I was in a special Hospital for my other two issues (ADD & ADHD). While growing up my mother just thought they were Febrile Seizures. But why’ll at this hospital a neurologist got curious & asked my mother if he could perform an EEG on me, it was then that I was diagnosed. I was 11 at the time.

    Liked by 1 person

    Comment by Justin Shaffer — December 17, 2020 @ 12:05 PM

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  7. YAY Doc. Someone who was curious enough to see beyond the obvious. Justin, you were one of the lucky ones!

    Like

    Comment by Phylis Feiner Johnson — December 17, 2020 @ 12:15 PM

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  8. Never had any problems growing up, good athlete, definitely hyper active and couldnt sit still or concentrate in class, or long enough to do homework, etc…… but never any serious injuries or hints of seizures! Then 6weeks after my 30th birthday….. WHAM!…… rolled outta bed at 5:30am having a Grand Mal, and seized for 13hrs, which they call “Status-Epilepticus”…..

    Oh the changes life can force upon us…… Doctors still havent been able to find anything other than my brain spikes higher in Alpha, they pretty much only occur in the early mornings just as I am waking up so it caused alot of fear early on, a ton of fear regarding going to sleep because I was so afraid of having another one, Ive basically learn to wrap myself in metaphorical bubble wrap as to keep myself from dealing with excessive fear, stress, or anxiety!

    You are all very brave!! Keep up the patience and the faith that tomorrow can always get better 😀

    Happy Holidays everyone, stay happy and healthy as best as possible!

    Liked by 1 person

    Comment by Aaron Holmes — December 17, 2020 @ 12:51 PM

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    • Aaron, sometimes a bubble is what you need. The fear and anticipation are so intense. I wish I had one, but I was so busy ripping my hair out.

      Have you had any extensive testing, (Video EEG, etc.) or have you considered a VNS?

      Vagus Nerve Stimulation…Is it for YOU? https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%e2%80%a6is-it-for-you/

      Like

      Comment by Phylis Feiner Johnson — December 17, 2020 @ 1:53 PM

      Reply

      • Not sure what all “extensive testing” would involve, but I have had EEGs and “sleep deprivation” tests….. never heard of the VNS, Ill have to check out your link, thank you 😀

        And yeah, I feel like the bubble is a good thing for me, but it drives some friends nuts….. things have to be just right, they wish Id go hiking and camping more, etc….. but those are some of the decisions we have to make to keep ourselves happy and healthy!

        Thanks again for everything you do Phylis 😀

        Liked by 1 person

        Comment by Aaron Holmes — December 17, 2020 @ 2:03 PM

  9. Better you should look after yourself than to have others in the sticky position of looking after you. Then you become a burden. And you know what that means… 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 17, 2020 @ 2:09 PM

    Reply

  10. I was three years old. I would get scared for no reason at all. I looked for the first parent , brother or sister and ask them to hold me or else I grabbed their leg and wouldn’t let go. It would last a minute or two and I’d run off and play again.

    At the time, my parents took me to the family physician and he said, “It could be epilepsy but it’s just a minor form.” I don’t remember the drug they had me take but it definitely didn’t help. The seizures got stronger and longer.

    They finally took me to St. Louis Children’s Hospital to see neurologists. That’s when they were told it’s not a minor form. They set up an eeg (they used needles way back then) to confirm it and I was prescribed Phenobarbital and Dilantin.

    My mom wouldn’t accept it and continued to say it was just a minor form. I finally developed a “wooden ear” when she talked and would tell the same people it’s nowhere close to minor. If I have a handicap and need help, why deny it?

    I never knew what caused my epilepsy until I had my surgery. Then from the scar tissue, they were able to say it was from the 105 fever I had when I was three.

    Liked by 1 person

    Comment by Ed Lugge — December 17, 2020 @ 2:20 PM

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    • Well Ed, speaking of denial: I used to walk into walls, fall down the stairs, broke my nose two times, and still they ignored the signs. I was just a clutz.

      My step-mother who was a psychologist, just dismissed it out of hand. My step-father, who was a surgeon just said I had something wrong with my brain waves.

      Finally my father took the big step and took me to a fancy neurologist.

      I remember being in my father’s office when he got the call. All I could hear was him shouting “Oh no! Not epilepsy!” Like I had just been diagnosed a leper. (Which in a way, I was.)

      That was the first and last time I ever heard the “E” word. Even at 67, with one parent still alive, she just won’t say it.

      And yeah, the Dilantin was awful. I went toxic. Lights out. Nighty night for 3 days. All in all, it was a lovely (NOT) experience.

      Like

      Comment by Phylis Feiner Johnson — December 17, 2020 @ 2:52 PM

      Reply

  11. Sad Phylis, that both a Psychologist and a Surgeon were in such denial of your symptoms and Epilepsy. Fear, confusion, but I think maybe some narcissism, led them to stigmatize someone who really needed help. Narcissists don’t want to be associated with people who will cut into their power. You moved on. They didn’t, however.

    Liked by 1 person

    Comment by skolly9 — December 17, 2020 @ 6:47 PM

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  12. All these stories are amazing… Phylis Thank You for your insight to start this blog. You are very fortunate to be alive.

    Liked by 1 person

    Comment by Doreen Mack — December 17, 2020 @ 7:34 PM

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  13. I was 8 months old when I was diagnosed, so don’t really know much about my diagnosis. I do know though that it happened soonafter I got my DTAP/TDP vaccine, my mother told me they postponed it until then, and a year after my surgeries I was given my DTaP/TDP again. Plus, the doctors told me about the biopsy of the part of my brain they removed from my right Frontal Resection and biopsied. They said there were what were supposed to be kidney cells in my brain.

    Liked by 1 person

    Comment by trekkie80sgirl — December 17, 2020 @ 8:58 PM

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  14. At 7 months old I was DX as i was told later as having petit mal seizures, and of course they did not know the cause, so THEY said. I had all those SHOTS before 5 months old. And at 7 months old I was put on the LIQUID drugs then for seizures. My 1st ever seizure happened on NOV 24 1960 on Thanksgiving Day. Guess it was a petit mal, I don’t really know, But my last GRAND MAL I had recently was not Thanksgiving Day, but 60 years later on NOV 24, 2020. Kids & infants today are getting MORE SHOTS than what I had in 1960, and more kids & infants today are getting neurological conditions & especially Epilepsy than ever before, but like me in 1960, innocent infants, all teens & younger are CDC & FDA TARGETS to practice on or else parents may have their children taken away, & Epilepsy & other brain condition become the future of having more than 6 shots before a teen graduates from high school today. AED’s are not staying in any drug store today. THAT was not the hope that I had in the past 50 years, thinking as a 10 year old with seizures, that b the time I would had been 40, the seizure life would had been gone by 30 years old. Sure, we have so many loving neurologists today that understands that. At 60 years old I AM STILL A TARGET as I was at 60 DAYS OLD. Ready for the RAPTURE of Jesus Christ for sure. God IS in control.

    Liked by 1 person

    Comment by James D — December 18, 2020 @ 7:22 AM

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  15. I went stiff when I was 7yr old had come out of classroom into dinnerroom at school (don’t remember any of it). The caretaker was putting chairs and tables away he’d asked me if I could move when I didn’t reply he tapped me and I was stiff

    Liked by 1 person

    Comment by Clare Armstrong — December 18, 2020 @ 11:30 AM

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  16. “The world is made of stories, not atoms.” Muriel Rukeyser

    Liked by 1 person

    Comment by HoDo — December 18, 2020 @ 1:41 PM

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  17. After having grand mal’s at work, went to neurologist who did MRI. Scar tissue left after TBI as child. Found out all 30 years of those de ja vu experiences were simple seizures. That’s when my journey began.

    Liked by 1 person

    Comment by Charleene Gorski — December 18, 2020 @ 4:54 PM

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  18. I probably started having seizures when I was 2 years old (after falling down the cellar stairs & had a fx’d skull), but was not diagnosed until 8/5/1970. I had been having “blackouts” after gym classes in 9th & 10th grade, but didn’t know what was happening. I was probably having nocturnal seizures (in the interim years) where I would so frequently lost bladder control while sleeping. It’s so odd that my Mom only asked me, “Don’t you go to the bathroom before going to bed at night?” I developed more frequent Partial Complex symptoms following further head injuries (2* to seizures). Recovery after the 2 brain surgeries was hard, but I’m thankful that when do still have seizures, they are not as strong.

    Liked by 1 person

    Comment by Maire Archbold — December 19, 2020 @ 8:12 PM

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  19. Oh Marie! What a tough time you must have had along your looooong journey.

    And the denial couldn’t have helped you either. (My step-mother used to ask me why I was such a clutz — as I bashed into walls. (And broke my nose.)

    Then you had even more head injuries. I guess it must have made the brain surgery recovery seem like “business as usual”.

    I’m happy to hear that, at least, the seizures are not as strong, now. Hoping things can get even better for you.

    Like

    Comment by Phylis Feiner Johnson — December 19, 2020 @ 8:51 PM

    Reply

    • Phylis, the recovery from the brain surgeries was equally as rough. Just prior to surgery #2 (in 8/2010), my Neuro* told me that I was not allowed to ask him about “Pain,” he would only address the seizure medication that I was to take. (Don’t you know that Pain has 4 letters in it? Those are Bad Words you know!). I had to relearn to read & write clearly, and my speech did not make any sense. I’m so grateful that I did have a Speech therapy evaluation done before & after that surgery so that definable goals could be determined (so that I could return to working as an Occupational Therapist in order to continue to help others). I dealt with such confusion… even related to the neighborhood where I have lived since 1991. I found myself so confused about where I was when I went out to walk. I haven’t driven since 1984 when I had blacked out while driving upstate N.Y. (secondary to my electrolytes being too low). I truly thank God for the gift of life every day! I do still have short term memory deficits, especially with the names of people & things (especially when I am tired). As a therapist I was able to learn some therapeutic exercises to do in order to improve the communication between the R & L sides of my brain. (It’s called Sensory Integration Therapeutic Exercises if anyone else may need some information). Doing this really helped to improve my short term & long term memory skills.

      *I am currently seeing another Neuro, but he doesn’t appear to believe that I am still having seizures. My last EEG report stated that “abnormalities noted, but they were probably not seizures.” The new Neuro told me that he is only addressing the Narcolepsy meds (that have also been horrible!). I think what hit me the most this past August… is that I have already been on medications for 50 years. Yes, 50! I so appreciated your comment about the “false diagnoses” that the MD’s use. It has been such a battle. I am going to compose a letter of complaint against the last Neuro I had been seeing. What I find so exasperating is that he is now teaching new MD’s neurology, and doesn’t even know how to LISTEN to what I shared. (I have a friend who is also having similar problems with him).

      Yes, we do need to vent sometimes! Thank you for listening! Maire’

      Liked by 1 person

      Comment by Maire Archbold — December 20, 2020 @ 6:14 PM

      Reply

      • Pain is just a 4-letter word. Hmf. So are a lot of other things.

        Did they nick the executive functions when you had your surgery and/or surgeries? Because that’s what happened to a friend who ended up spending two years (and her life savings) in totally unsuccessful therapy.

        At the end of the stint, she was able to toilet herself and say “dog”. But with grit and determination, I saw her rise from the ashes, learning to walk, talk, read, sing, cook…all of the things she loved most to do before her surgery. (By the way, the surgery was a “success”.)

        So, I sort of understand the pain and determination that had you reaching out for the long, hard pull towards “normalcy”. My friend was a therapist and engaged in Cognitive Behavior Therapy. She said sometimes her brain hurt so much, she would just cry.

        I doubt you had it any better.

        Your doubt, coupled with your doctor doubting YOU sounds like a very bad comedy. Hello? This is YOUR body speaking. Don’t gaslight me with your voodoo and jumped up jargon. Just talk and act like a respectful human being. I am your patient. Not your problem.

        Like

        Comment by Phylis Feiner Johnson — December 20, 2020 @ 7:57 PM

      • Phylis, thank you for being there to listen… and truly understand!! I really appreciate your taking the time. I am still facing the battles related to the side effects of the seizure & narcolepsy meds, and I WILL continue to be a “squeaky wheel” until I get the needed grease! May the Lord continue to minister to you in your life as well. Shalom. Peace! Maire’

        Liked by 1 person

        Comment by Maire Archbold — December 22, 2020 @ 8:26 AM

      • Marie, blessings to you. Don’t forget that I’m here for YOU. (Here’s hoping your squeaky wheel gets greased!)

        Like

        Comment by Phylis Feiner Johnson — December 22, 2020 @ 9:55 AM

  20. I was 5 years old, my sister was getting ready for school that morning, and all of a sudden I have a grand mal. My first. Only Mom was home, so she calls the doctor, then rushes us to his clinic about 30 minutes away! Calls family so my sister can still try and have a normal day.

    The doc administered a drug by injection, but I have another GM. He rode with me to the hospital about 15 minutes away. By the time I had gotten there they had given me the drug three times and I had a slow breathing rate. One of my memories from that day was I came to and my arm is pinned down and I had no clue where I was.

    This starts the investigation into what caused the seizures. They find out I had a brain tumor and start mentioning something my folks had never heard. A genetic condition called Neurofibromatosis. They found a sizeable tumor in the left hemisphere that was pushing against the skull. Mind you this was in 1981, so the MRI was a new and uncommon scan at the time; they did a CT.

    Surgery was done to remove the majority of the tumor. As I like to say it they sort of “cored out” the tumor leaving the smaller strands to try and not cause possible damage by removing all of it. Those strands did die off thankfully. However the pressure the tumor exerted on the brain left me with seizures.

    I was started out on an oldie but goodie Phenobarbital. About a year later they added a “new” drug at the time, Tegretol. I was on that combo for about 13 years.

    Liked by 1 person

    Comment by Travis — December 20, 2020 @ 1:32 AM

    Reply

    • Wow what a scary story. However those who are “lucky” enough to have seizures as a brain tumor warning, have the opportunity to get it right.

      Good thing the MRI had been invented and it sounds like you had a pro-active doctor who was up on his game.

      You know, sometimes all of those strands don’t die off and it leads not only to continued seizures, but cognitive problems as well. A friend of mine suffers from that and literally spent years in rehab.

      Are you still on Phenobarbital and Tegretol? Are your seizures now controlled?

      Like

      Comment by Phylis Feiner Johnson — December 20, 2020 @ 9:41 AM

      Reply

  21. I believe they began in 2008, soon after giving birth to my third child. I was 33 years old, at the time, and had my “tubes tied” during the c-section. This was my 3rd c-section and 6th abdominal surgery. I started having the complex partial aka petit-mal, which we didn’t know were seizures at the time. I live by the shore and would meet with a group of women each week by the beach to connect with our souls and thank GOD for all of our gifts. This is where my seizures received their nickname of “cameo’s”, due to their spontaneous appearances. I would wake up with my mouth all chewed up, a migraine, and some body aches for the next couple of days, around the same time every month, more on odd months than even. My husband swore that I was having a grand-mal aka tonic-clonic seizure, soon after falling asleep. He was familiar with recognizing them since my brother-in-law grew up with cerebral palsy and had seizures, frequently. Also, my mother is a paramedic and I was an EMT with the VA Beach Rescue System, at the time. I had to go to the ER as well as many different doctors appoints over a period of six years with the diagnosis of anxiety and panic attacks. Per my grandmother I began keeping a journal of each occurrence including time, food that I had eaten, my sleep pattern, and so on. I would and still do have who ever witnesses one to record it so I’m able to keep good records and show the medical world what I’ve experienced. While driving home from work on one of our southern VA back roads, a John Deere Tractor with Christmas lights wrapped around her triggered me to have a tonic-clonic, with my two daughters in the the car. By the grace of GOD we all made it out alive, and sadly, this was the last time I’ve driven. My husband, being an Eagle Scout, happed to have a conversation with our children on how to “be prepared” if someone passed out behind the wheel while driving? I don’t recall what happened but I know my eldest was able to somehow get us off of the road, safely, while my youngest got 911 in route. Those two won a safety award via the City of VA Beach for their quick and brave actions. I woke up in the back of an ambulance dazed and confused, oddly enough with one of my rescue partners as my care giver. Once in the hospital and being examined by the doctors I had four more seizures. This is when they explained that I had epilepsy, about time! After another couple of years without success in treatment we came to the conclusion that I have the catamenial version (https://www.webmd.com/epilepsy/guide/your-changing-hormones#1) and that the medications they had been giving me were only causing my seizures to show up more often. It’s been a hell of a journey with a lot of humbling lessons learned. Prayers of calm for us all having to go through this adventure. I was feeling sorry for myself when I decided to make my new years resolution to “see life from a different perspective”. It’s hard to stay positive sometimes but it’s worth my battle. XoXoX *PFF-5R’s

    Liked by 1 person

    Comment by Nicole Roper — December 20, 2020 @ 9:05 AM

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  22. Great blog I enjoyyed reading

    Liked by 1 person

    Comment by Wayne Stanton — June 11, 2022 @ 10:32 AM

    Reply

  23. I was 13 & very stressed, mind acting weird and my arms jerking Periodically.
    My family was having a dinner party with some friends and I had a seizure my first one at the dinner table. I woke up in my bed. As my father worked for the Mayo clinic I then began testing and was given a medication. It was so weird that I never mentioned to my parents what I was going through.

    Like

    Comment by Sharon — November 19, 2023 @ 4:33 PM

    Reply

    • But, since your dad worked at Mayo Clinic, didn’t he know and understand what was going on? Or was he (or were you) in denial?

      Like

      Comment by Phylis Feiner Johnson — November 19, 2023 @ 6:54 PM

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    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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