Epilepsy Talk

What is the worst accident that has happened to you because of a seizure? | June 22, 2012

My chief problem is falling down. Yes, I walk into walls, drop things, etc. But falling down has resulted in countless concussions and a broken foot. (Just got the cast removed. Hooray!)

What about YOU?


  1. Four years ago I broke my ribs by falling out of the bath as I stood up and crashing into the side of the toilet. This year I spent eight weeks laid up with a broken toe and two sprained ankles after suffering an abscence seizure whilst walking down the stairs.

    On Tuesday night I was hospitalised with Status Epilepticus and my sternum is badly bruised from constant attempts to keep me breathing, and my wrist is even worse thanks to an arterial blood draw!


    Comment by Missus Tribble — June 22, 2012 @ 5:18 PM

  2. I don’t know which is worse: falling backwards on a rock and hearing a loud cracking sound, although my skull wasn’t damaged and my brain was ok, OR having the tibia ( the larger bone below the kneecap) separate from the ankle bones, thus requiring three surgeries to correct.


    Comment by Lee Ann Batsel Steinmetz — June 22, 2012 @ 6:11 PM

  3. Wow!

    You know, my first seizure (of course, I didn’t know what a seizure was) I almost drowned in the shower.

    It was one of those old-fashioned showers with a heavy plate glass door, three water jets on the wall, and one on the ceiling and a circular handle that you had to turn counter clockways to get out.

    All of a sudden, it felt like all my blood was running out of my toes. (No auras then).

    So I threw myself against the door but, obviously that wasn’t enough. Then I thought, geeze, I’m going to drown.

    I started sinking to the floor and I thought, OMG, I going to die.

    Then with one last push, somehow I made it out. And when I regained conciousness, my head was on the bathroom rug and the rest of me was still in the shower.

    I crawled to the bathroom rug (not far away) and just lay there, curled up in the fetal position, too afraid to yell, scream or cry. I was too terrified.

    And that was the beginning…


    Comment by Phylis Feiner Johnson — June 22, 2012 @ 6:17 PM

  4. I am saddened to know how many people suffer such frightening seizure incidents. Its not usually anything one hears about unless its a close friend, family member or here on the message boards.

    My son Erik, 46 years old was killed in a head on collision when he had a seizure alone at the wheel of his car while driving to work early on the morning of Nov.15, 2010.

    The young man driving the truck he crashed into thankfully survived the accident. Erik was killed instantly after crossing a median strip on a major highway crashing into this truck.

    I shall never forget that horrible day and can only warn those who have seizure activity even while on medication to refrain from driving. You just never know when it will happen and it will kill you.

    My son was on the generic Keppra. Obviously it didn’t work!

    Bless you all and I wish you to be safe and well.


    Comment by Janice Robinson — June 22, 2012 @ 8:22 PM

    • My heart goes out to you, Janice

      Liked by 1 person

      Comment by Charlie — June 23, 2012 @ 6:27 AM

    • Condelnces & Prayers Janice,
      Thanks for caring to share your heart & experience with epilepsy.
      May the almight God, lift your grief & heal your heart.


      Comment by Gerrie — June 23, 2012 @ 7:17 PM

  5. I don’t remember much about the “worst” as I was only 17mths old, but I was playing @ my grandmother’s house and fell down 20 steps(her staircase going upstairs) then another time when I was about four I was standing up from playing on the floor and fell backwards into the old fashion I guess cast iron radiator…when I was an older “seem to be more clutsy” adult, I was @ school and fell down the main stairs to the lobby (concrete steps this time) and hit the front of my head—that would be the last seizure memory I have. 19mths or so later, I had the right temporal lobectomy.


    Comment by sunshinej716 — June 22, 2012 @ 9:14 PM

  6. Car accidents. In 2001 I totaled a pick-up. I got my first and hopefully last medical helicopter ride. I was a real mess but they stitched, operated, and casted a few of my limbs. That was the last time I drove until 2010. My 2009 brain surgery has kept me seizure free almost 3 years now and I’m on the road again. PTL!


    Comment by Charlie — June 23, 2012 @ 6:20 AM

    • I also had quite a few run-ins. But fortunately they were all with NON-MOVING objects!

      When I got my driver’s licence, I hit 6 things in 10 days, which culminated with me wrapping the car around the cement pillar in the apartment parking garage.

      That was it. I hung up my keys for 10 years but keep my license for I.D.


      Comment by Phylis Feiner Johnson — June 23, 2012 @ 10:26 AM

      • My fab step daughter trounces you: a total non epileptic, but she got her license and destroyed 7 curbs, three sides of the car, and our garage door before WE hung up her keys FOR her. (mumble mumble-teenagers)


        Comment by meesher — June 28, 2012 @ 3:24 AM

  7. Just a month ago, I was holding onto the refrigerator door. I had a seizure and fell down backwards. I hit my head on our marble table. Blood was coming out of my head. Hubby, sat me in a chair and called 911.

    They put sutures in my head and an RN told me how to wash my hair. I was bleeding a little bit for at least a week.

    I am fine now.


    Comment by Ruth Brown — June 23, 2012 @ 1:44 PM

    • Mmmmm. Marble. Boy, it sure is hard. Six weeks ago I fell down the stairs (the boot for my broken foot lost traction with the steps) and I hit my head on the marble foyer floor and then kept going until the front door stopped me.

      Wonder where I would have ended up without the front door. On the flagstone steps.? Sigh.


      Comment by Phylis Feiner Johnson — June 23, 2012 @ 5:03 PM

  8. All of yours sound awful especially the one with the son that passed away.

    I love to hike, swim, horseback ride and do drama! One hiking trip was interesting was beautiful on the 2nd highest mt. in Colorado. Mt. Elbert. We were almost to the top and walking on shale and I started to have a seizure. I slowed down and apparently grabbed a large loose rock and it hit me . I was having a seizure at the time. When I was aware what happen I had a terrific headache, I did not know where I was, my left side of my body was sore. The group I was with contacted the rangers. The rangers were putting me into the jeep. They told me that I was lucky! I was confused for a day. Injured my shoulder and had a concussion!

    I have broken bones, missed airline flights, been asked to leave private schools because of seizures.


    Comment by Toni Robison — June 23, 2012 @ 3:30 PM

    • Yes, you’re fortunate, but being asked to leave private schools because of seizures. Isn’t that a tad ignorant?

      I mean they’re supposed to be in the business of EDUCATION. Doesn’t epilepsy count?


      Comment by Phylis Feiner Johnson — June 23, 2012 @ 5:23 PM

      • I’d say that’s “discrimination” at it’s finest…..and I’d be raisin’ “(H)” about it!


        Comment by mkfarnam — June 25, 2012 @ 9:44 AM

    • God Toni,
      After surviving mountain ordeals after ordeals, imagine the worst ordeal to survive, happens to be the human INDIFFERENCE,,,, Schools asking YOU to “leave private schools because of seizures”.

      Now imagine, these are the “schools” supposedly COMMITTED TO EDUCATE SOCIETY & create “Doctors, Nurses, health experts”,,, who are supposedly SCHOOLED & TRAINED to “CARE” for our seizures?

      IT’S JUST FASCINATING to imagine, SURVIVING MOUNTAINS but not the very institutions who claim to have COMMITTED for a very higher goal in society, EDUCATION.

      Human nature ?????????????????????????????


      Comment by Gerrie — June 25, 2012 @ 6:03 PM

  9. Hi all , im new to the forum thing but im not sure if im om the correct site. Just a brief re me. Im 34 and also diagnosed with epilepsy. , started meds around four years ago and still taking “big” and smaller ones daily, currently im on keppra 2000 day n night and vimpat going up to 150 day n night. I seem to take most kind of seizures going! Get almost all side affect from meds, im just wanting go hear from others who will understand my situ, its quite frustrating as im finding it hard to deal with it, I hope I havent depressed anyone tho would be good to see it from others views, many thanks


    Comment by ciara — June 23, 2012 @ 4:44 PM

    God Phyllis,,, Where should I start & where will I stop 🙂

    Your question reminds me of a quote,

    “If there is a possibility of several things going wrong, the one that will cause the most damage will be the one to go wrong.”

    Let me just say that,,, since Epilesy,,,, “the worst accident that has happened to ME because of a seizure” is EVERYTHING siezures can breed.

    Sorry,,, I don’t mean to let anyone down, but the ACCIDENTS have been so many & unbreable at times, it’s just hard to fathom to list them all & wonder which one is worst than the other.

    Intererstingly though, reading the RESPONCES to your question, one might tempt to say,,, WOW, thanks GOD I miss that one.

    The BEST ACCIDENT since my epilepsy has been, finding this WEBSITE, a place where I can SPILL MY HEART OUT sharing my DIFFICULTIES with the very people who live in my shoes & willing to SHARE their hearts & deep experinces of their circumstances & mine, after desperately trying to deny, cover-up the OBVIOUS & finally seek remedy from one Neurologist to the NEXT, from one hospital to the NEXT like a pingpong-ball.

    I learned here that, YEAH, life can breed misery, but life breeds remedy, too!

    THANKS EVERYONE for sharing your experience with epilepsy, It has been inspring, uplifting & empowering journey.



    Comment by Gerrie — June 23, 2012 @ 7:11 PM

  11. one of the worst that I can remember was, I was working in my garden, and fell against the garden border. When I came to, I had blood running from my head. I panict, afraid someone had tried tThat scared meo kill me. I ran into the house, grabed the kitchen towel and called 911. I needed to get 16 stitches. I have had many other seiz, but this one really scared me.


    Comment by jennifer — June 24, 2012 @ 3:48 PM

  12. Something happened to me last month, but it was not nearly as drastic as your accident.

    I was trying to transplant ONE salvia and I fell down FIVE times.

    The fifth time, I landed smack on the brick sidewalk (head first, of course) and just lay there howling.

    But here’s something cool. I’m now in physical therapy (because of all my falls) to learn balance and how to walk with “perspective.” (They think that because of my epilespy, my perception is off kilter, so the answer is balance, so I don’t have to rely on my eyes alone.)


    Comment by Phylis Feiner Johnson — June 24, 2012 @ 5:20 PM

    • Phylis, I’d like to hear more about physical therapy to balance “with perspective”. When I stand from a seated position, I have both arms to the sides, like flying, as if that makes a difference. My hub allows me to take his left arm, when walking, (just like in olden times) freeing his right arm up to punch anyone (now, I am only jesting with ya). Having his hulky self to “balance” me makes most guys feel manly, and even his pals offer their own arms out to me, making even THEM feel “manly.” I am SO NOT politically
      correct. When walking inside, I keep the back of my right hand on the wall, skimming it. If I used the front (inside of) my hands, they would leave prints. I’m re-teaching my hands to write in cursive. Leaving my hands all inky. Yes, I like bottled ink. Splash!


      Comment by meesher — June 25, 2012 @ 9:31 PM

      • Hi Meesher! How are you? Besides unbalanced? 😉

        Basically, I’ve just started therapy and the work is only with my legs…arms are ok.

        So far, we are doing such mundane things as standing with both feet togther. (Not an easy task, since I have no balance, I have to hold onto something.)

        Next is putting one foot in front of each other — as if you were striding or walking — and then rolling from toe to heel, one foot at a time, to simulate walking.

        So far I haven’t fallen (Hooray!), but there’s always either the PT lady or the table to grab onto if I tip over.

        It’s LITERALLY a mater of “baby steps.” Like learning to walk all over again…


        Comment by Phylis Feiner Johnson — June 26, 2012 @ 10:33 AM

  13. my worst was when i black out sometimes and i am at the train station. I came to this one day to find this man with his hand under my right buttocks fondling my cheek and the $80 cash I had in my bag was gone. I was on the train bench at the station waiting for the train and noone seemed to think it was strange that he sat beside me and just did what he did.
    Needless to say I no longer catch the train as this is the third time that it has happened to me.
    You feel very violated and the sad thing is it happened at the busiest train station in Brisbane, Roma Street, Australia. So not happy.
    I not only have to deal with the constant bruises from falling over all the time due to having no balance but also the inconsiderations of others.


    Comment by Lea — June 24, 2012 @ 11:45 PM

  14. I got fondled and flashed when I was 14 years old in the SAME day! By the time I got to my father’s, I was hysterical.

    Needless to say, when I go to NYC now, I take a cab, even though it’s a luxury!

    Ironically, one day Charlie and I were going from 1st Ave — where NYU labs are — to Penn Station on 7th Ave. I tried zillions of times — in vain — to hail a cab, but with no success.

    Charlie was almost bent over with laughter. He said: “If we had taken the bus, we’d be there by now!”


    Comment by Phylis Feiner Johnson — June 25, 2012 @ 10:35 AM

    • I did have the metro pass in hand for the bus, but ‘someone’ insisted on a cab. haha The long walk did me good anyhow.


      Comment by Charlie — June 26, 2012 @ 10:14 PM

  15. I have been asked to leave jobs, volunteeer places, dance and hope to god, not the hospital. They have not asked me to leave yet. Im going to pissed if they will also leave. I volunteer there.


    Comment by jennifer — June 25, 2012 @ 7:53 PM

  16. My 24 yr old son has seized causing him to fall on his face on multiple occasions. He didn’t have insurance until last year. Every single tooth in his mouth has been broken or lost. The dentist said his teeth can’t be repaired. He needs to have them replaced with dental implants, which is very expensive. A less expensive alternative would be doing some implants and using them to attach bridgework. His dental insurance says this is a medical claim so they won’t cover it. Medical insurance says it’s partially dental, partially cosmetic, and they won’t cover any of it. Does anyone else have experience with anything like this? His confidence has been destroyed because he hates how he looks. He had planned on going to college, but now he works as a cook so he can be in the kitchen away from people. I’d love to hear from anyone who can tell us how to get help paying for the work he needs. Also, we are having a difficult time finding a dentist, oral surgeon, and neurologist that will coordinate his care. He will most likely need some surgery on facial bones, and needs to get back on seizure meds. We have called all around the Cincinnati area, even The University of Cincinnati, and we can’t find doctors who will work together to determine his treatment. Please help. I lost a son 4 years ago unexpectedly. Now I feel like I’m watching my other son die a long slow painful death as he gives up on his hopes and dreams and hides from the world.
    Thank you


    Comment by Cathy — June 25, 2012 @ 10:04 PM

    • I don’t have answers to your questions (WHO does?) but I have research on resources that may help you.

      Let’s start with Neurologists…

      Here’s a list of the best neurologists (in Ohio), based upon eforum members positive personal experiences:

      Dr. William Carroll, Grant Medical Center, Columbus, OH

      Dr. Jean Cibula, Mt. Carmel Healthcare, Columbus, OH

      Dr. David Ficker, University of Cincinnati, Cincinnati, OH

      Dr. Iam Najm, Cleveland Clinic Epilepsy Center, Cleveland, OH

      Dr. Privitera, University of Cincinnati Medical Center, Cincinnati, OH

      Dr. Basel Schneeker, Ohio State Neurological/Epilepsey Center, Columbus, OH

      Dr. Robert Simkins, Wallace Kettering Neuro-Science Center, Kettering, OH

      Dr. Norman So, Cleveland Clinic Epilepsy Center, Cleveland, OH

      Now for the Dentistry…

      What you’re actually looking for is a prosthodontist — a dentist who specializes in the restoration and replacement of teeth.

      The American College of Prosthodontists has a referral system you might go to for guidance. (There’s even a category for treatment planning — where I think you might get a sense of who would pay for what and exactly which procedures are necessary.)

      Here’s the link for licenced approved members of The American College of Prosthodontists:


      And here’s a beginning link, explaining the whole process, which should answer some questions.


      Finally, as a last ditch effort, you can click on


      for FREE Medical/Dental “Camps” in Cincinnati, and the resources available.

      Good luck to both of you. I hope some of these resources help.


      Comment by Phylis Feiner Johnson — June 26, 2012 @ 11:14 AM

      • That’s a lot of wonderful information! Thank you so very much!


        Comment by Cathy — June 27, 2012 @ 8:02 AM

  17. I had a tonic clonic during my 13th week of pregnancy at the top of 13 metal edged stairs. Went head first knocked unconscious onto the tiled floor at the bottom. I had concussion for 4 weeks, don’t remember a lot of it but remember feeling like I was on holiday when I was at home and not recognising people. Errrgh it was horrid!!


    Comment by Sophie.t — June 26, 2012 @ 5:36 AM

    • Baby boy was fine tho! Praise the lord!


      Comment by Sophie.t — June 26, 2012 @ 5:38 AM

  18. I probably just had one of my worst ever. I had a bad headache, was light-headed and dizzy. My parents sent me to my grandmother’s for the day and the headache became insanely sharp that I couldn’t walk. Grandma called an ambulance and thats the last thing I remember…..I woke up 5 days later in ICU. They tell me I grand-maled several times & that they had to intubate me to get it to stop. I don’t remember a damn thing.

    I’m covered in bruises, my lower lip is bit open, and my throat hurts from the dang tube. I was just discharged yesterday, but we still don’t have a plan of action beyond scheduling an appointment for next week. Its the worst things have been in awhile. I’m frustrated and scared.


    Comment by pghkatrina — June 27, 2012 @ 2:32 AM

  19. What did they do while you were in ICU (except for the obvious, keeping you alive!)

    What meds did they give in the hospital? What tests did they do? Who was your attendion neuro? Was it the hospital’s or your own?

    I was in a coma for five days, but it was induced to stop cascading seizures that stopped my heart.

    I was put on Pheno and Dilantin just to put me “on hold” when I left the hospital.

    Based on the zillions of tests taken while I was out cold, drug combos were tried and I must admit, I was lucky. I found my combination on the second try.

    I know it’s scary. I’ve been there. But there IS light at the end of the tunnel. (And it’s not just an oncoming train!)


    Comment by Phylis Feiner Johnson — June 27, 2012 @ 8:51 AM

    • They used Dilatin as an add on to my Zonegran and Vimpat to stabilize me, but took me back off the D before I was discharged. So my family is worried about being on the same meds.

      An EEG and MRI were both taken while I was knocked out. Now I’m scheduling a follow-up appointment for the beginning of next week.

      Unfortunately I’ve been on most of the available meds at one point or another that now its do I go back and try again? or do I look at surgery?


      Comment by pghkatrina — June 27, 2012 @ 2:46 PM

      • Just don’t close the door on anything. they never could find the right combo for me for 50 years. maybe they can for you like they have for so many others. My solution to multiple daily seizures was surgery and I’ve been seizure free almost 3 years. My advice: Never give up!


        Comment by Charlie — June 27, 2012 @ 8:31 PM

      • Thanks Charlie. I told my family – I’m not giving in this time. Things have been really rocky lately and its been grabbing hold of my life. (I was supposed to graduate college before the end of the yr, thats unfortunately been put on hold) I’m tired of having another go around every few months. I’m ready to jump in with both feet this time and explore all my options. I want to learn more about my own case and see what possibilities I have.


        Comment by pghkatrina — June 28, 2012 @ 2:20 AM

  20. I’m no neurologist, but here are some available options…


    There are six new drugs coming down the line. Some have already been approved, some are still in Phase III trials.



    The Ketogenic Diet — one of the oldest treatments for epilepsy…The Atkins Diet — may reduce seizures in children with epilepsy…MAD — Modified Atkins Diet — more user-friendly…or G.A.R.D –The Glutamate-Aspartate Restricted Diet – a life-long elimination diet.


    The Vagus Nerve Stimulator

    There have been varying reports on the success of people with the VNS. From what I’ve heard, it only has a 50% success rate. Nonetheless, here’s some excellent, unbiased information from Epilepsy.com



    There are several tests you would take before being considered a candidate for surgery…

    PET (Positron Emission Tomography) – The information provided by the PET scan is valuable in both the diagnosis of seizure type and the evaluation of a potential candidate for surgery. PET images are capable of detecting pathological changes long before they would be made evident by other scanning techniques.

    SPECT (Single Photon Emission Computed Tomography) – which is useful for presurgical evaluation of medically uncontrolled seizures.

    The Wada Test (Intracateroid Sodium Ambobarbital Test) – helps to identify the areas of a person’s brain that control speech and memory functions. From this test, the neurosurgical team can determine where the areas of the brain that control speech and memory are located, and avoid those areas during surgery.


    And finally, if you are considered a candidate for surgery, here are some questions you might want to ask…



    Comment by Phylis Feiner Johnson — June 27, 2012 @ 3:50 PM

    • Thanks Phylis. I know I’m just getting into this, and its likely still going to be awhile, but I’m ready to try this time. A follow up with my neuro Monday…and the exploration begins.


      Comment by pghkatrina — June 28, 2012 @ 2:24 AM

  21. I had no knowledge of this. I was an adult living on my own, but luckily I had plans with my Mom that day. She found me when I didn’t answer the phone. Apparently I fell out of the shower and landed on the bathroom floor. I still have a scar on my forehead and broke my front tooth.


    Comment by Heather — June 27, 2012 @ 7:34 PM

    • I’ve had so many seizures and busted my head open so many times the worst seizure lets see.
      MY husband found me on the kitchen I had a seizure and had chix grease all over and I was burnt 2nd degree burns.
      or the worst was when I had a seizure in the shower took the shower curtain down and I fell out of the shower on my head and busted my head open got about 13 staples.


      Comment by Belinda S Brown (@Georgiaalways) — June 30, 2012 @ 10:21 PM

      • I’m a member of the fall-in-the-shower club too. My first seizure. I thought I was going to drown.

        Then when I couldn’t get the door open, I thought I was going to DIE.

        Luckily, with one last push, I was out and my head had landed on the shower ledge before I went down.


        Comment by Phylis Feiner Johnson — July 1, 2012 @ 10:18 AM

  22. I’ve been comparatively lucky, my tonic clonics have only ever been on waking, or- for the last 10yrs- nocturnal. Nocturnals are definately safer in regards to injuries! Somehow I’ve avoided anything really serious, but have been burnt going down in the shower, a few major concussions, cracked cheekbone, and loose teeth from hitting the kitchen floor at high speed. Multiple whiplashes, chronic nerve pain and tendon damage from posturing during szs. So it’s possible to do a lot of damage even when in bed!
    This really is a dangerous occupation.


    Comment by katie — July 1, 2012 @ 1:51 AM

  23. My worst one was a car accident on a busy freeway in the SF bay area. Hit one car then hit the sound wall. Came to with the big fire trucks and police cars all over. I was fine other then a bit tongue. 5pm it happened, middle of traffic time. The other driver of course claim neck ack. The heavenly angels were looking out for me that evening. For some reason, i swerved to the right, rather then left and into traffic.

    Here would be an interesting topic, how do people better fortify there homes to stop major injuries when they fall?


    Comment by Zolt — July 6, 2012 @ 12:44 PM

  24. Glad no one was seriously hurt, but that must have been mighty scary.

    Great idea for an article. Seizure-proofing your house.

    THANKS Zolt!!!


    Comment by Phylis Feiner Johnson — July 6, 2012 @ 2:30 PM

  25. When I was about 19, I started getting these weird “jolts” in the mornings. Didn’t pay too much attention to them; they just seemed odd, that’s all. I just felt like I was clumsy. They usually happened within an hour or so of waking up, generally if I was tired and hadn’t gotten enough sleep. I’d drop a cup of OJ, maybe my toothbrush, but nothing major.

    Then one day, I fell in the shower. Freaky, but again, nothing major. Had some blood work done, saw a neurologist. Had an MRI, even an EEG. Nothing conclusive. The doctors collectively scratched their heads and said essentially, “Eh, just keep an eye on it.”

    Fast forward nearly 20 years. Married, house, two cars, job, thinking about kids. I still get these “jolts” under the same conditions, but they’re never major.

    Until one day, when I have one while I’m walking, and fall. And land on my knee. And break it into twelve pieces.

    Surgery, out of work 8 weeks, all that.

    Wife says, “NOW will you consider seeing a doctor about those jolts?”

    “I’m fine,” I said.

    But I wasn’t.

    Six months later, guess what? We’re pregnant! Yay! My wife says, “Now honey, seriously – you know you have to be careful and get your rest once the baby comes; you know how you get if you don’t get a full night’s sleep – you know, with those jolts.”

    So I talk to my (new) doctor. He says, “Well, the condition hasn’t worsened in nearly 20 years, right? Might as well leave it be; if it were serious, it would have manifested itself by now, and if you see a neurologist they like to classify anything they don’t quite understand as ‘seizures’ and they’re required to report those to the state, and will take away your license.”

    So what do you think I did? That’s right, nothing.

    My son is born! Yay! I’m a daddy! Yay!

    At age 7 weeks, I got up one morning to feed him. Yay!

    I had a jolt.

    I dropped him.

    From five feet.

    Onto the kitchen floor.


    He’s fine, but he suffered two skull fractures and spent two nights in the hospital as a result.

    This was several months ago. I’m happy to report he’s fully recovered; the fractures have completely healed, and the pediatric neurologists say he escaped any lasting effects since his skull hadn’t fully formed at the time of the accident.

    Since then, I’ve aggressively seen NEWER new doctor, a neurologist of my own, had an MRI, a sleep-deprived EEG, and the EEG revealed abnormal electrical activity that is triggering my myoclonic jerks. I’m currently on 100MG of Topamax 2X daily but I’m evaluating other medications, as this stuff makes me incredibly foggy throughout the day.

    Regardless, I’ll be taking some form of medication – Topamax, Lamictal, or Keppra – for life. I’ll never go back to my jolts again. EVER.


    Comment by RB — July 20, 2012 @ 7:01 AM

  26. Geeze RB, how horrible for your baby…and you. Sad that it took that mishap to get you to the right neuro and get conclusive testing. But good that you’re finally medicated and no longer in denial.

    It might take a while for you to find your “magic med mix”. I kssed a lot of frogs before I found mine.

    The good news is that there are lots of meds available now. (When I was first diagnosed it was Phenobarbital and Dilantin.) The bad news is the same.

    With so many meds available, sometimes it’s a crap shoot. But hang in there. It’s happened to ALL of us and we’re still standing. 😉

    Best of luck to all of you. Let us know what meds you finally end up on and how you’re doing…


    Comment by Phylis Feiner Johnson — July 20, 2012 @ 9:23 AM

  27. Hi Zolt,

    I saw your accident on the news. You had a complex partial seizure they said on the news. Someone was taking a video of you as it was happening. You hit another car going the wrong way.

    Was anyone hurt in the other car?

    I live in CA, too.

    Does anyone know anybody who was in the theater watching Batman in CO last night? That was horrible!!


    Comment by Ruth Brown — July 20, 2012 @ 4:07 PM

  28. The worst was when I was working in the yard, as I love to garden. I had a seiz and my head hit the .garden border and cut my head badly. I was bleeding teribbly, I freaked ouhinking that someone had gone after me. I ended up in the ER, needing 14 stitches.


    Comment by jennifer — July 23, 2012 @ 12:30 PM

  29. I fell in the garden 5 TIMES trying to transplant ONE salvia. After I smacked my head on the walkway (another concussion to add to the count), I just gave up.

    But it wasn’t nearly as bad as you, Jennifer. No stitches.

    But why did you think someone was after you?

    I’ve lost my appetite for gardening. And as a result, everything is looking kind of bleak. 😦


    Comment by Phylis Feiner Johnson — July 23, 2012 @ 1:55 PM

  30. Because, I was bleeding terribly, and in pain.

    It took me a while to reallize that it was because of a seiz.


    Comment by jennifer — July 23, 2012 @ 3:03 PM

  31. Well my worst injury was a combo of the medication and seizure. 2 years ago this month I had a seizure and fractured T12 vertebrae that left me with nerve damage. I had 5 more fractures that year, bad enough to lose 2 inches in height. The great news is getting a new Dr. that did my 1st ever T3 MRI, and they found scar tissue in my right temporal lobe. I go in Aug. to have a video EEG to see if they can confirm my seizures are starting in the temporal lobe, whereas they assumed for the past 25 years that I had Primary Generalized Epilepsy. So even though bad things happen always stay positive and fight for what you think is best for yourself.


    Comment by John — July 23, 2012 @ 9:10 PM

  32. Dear John, Do you have neuropathy? (That’s what my husband has.) Have you had any Physical Therapy or Accupuncture for your back?

    It took a T3 MRI to finally get to doing a Video EEG? That’s pretty outrageous.

    Here are some diagnostic testing options:

    Beyond EEGs…Diagnostic Tools for Epilepsy


    Your attitude is admirable, considering all you’ve been through. Keep fighting!


    Comment by Phylis Feiner Johnson — July 24, 2012 @ 8:49 AM

  33. My son is 16. He is on Depakote and Keppra. He has Complex Partial Seizures. They are still not controlled. He suffers from depression. He cant attend public school and can’t have a driver’s license. The other day while waiting for the transit bus he has a seizure and ran out in front of traffic and almost got hit by a car and fell to the ground and got all scraped up. As a Mom to see him struggle with this is heart wrenching. We are going to see a specialist in U.C. Davis on December 1st. Hopefully they can help him.


    Comment by April Vierra — October 13, 2015 @ 12:48 PM

    • I also have a daughter 16, who suffers from epilepsy. She is on Trileptal and Keppra and her condition is also not controlled. She tried homeschooling last year but it has been difficult being alone all the time so we are contemplating sending her back to public school this fall. Few days ago she had a terrible fall when she had a seizure while walking to the vending machine at the ice rink. Bystanders came and got me. We had to call the ambulance as she was coughing up blood and she was in extreme pain and had a terrible headache. I am really afraid to send her back to school in case she has a bad fall going down the staircase. I always have this vision that she might have a terrible fall where she could become disabled or paralyzed. She really wants to go to school and meet people but I am so torn and I don’t know what to do.


      Comment by Mia Yoo — July 12, 2017 @ 11:12 PM

      • Idea: I had a tremendous problem with falling. MANY concussions.

        What I ended up doing was going to Physical Therapy. (Insurance paid the bill.) After 1 1/2 years, I graduated and I’m proud to say, I haven’t fallen (anywhere, not even the stairs) for 9 months. 🙂


        Comment by Phylis Feiner Johnson — July 13, 2017 @ 9:15 AM

  34. Oh April, how awful for you and him.

    What do you expect the new specialist to do?


    Comment by Phylis Feiner Johnson — October 13, 2015 @ 2:30 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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