Epilepsy Talk

How were YOU first diagnosed with epilepsy? | October 4, 2014

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 it.

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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41 Comments »

  1. I had two grand mal (as they were called then) seizures during the hot summer of 1974, then suffered ictal or seizural amnesia; anything before those 2 tonic clonics, end of sixth grade is a blur except 2 girls I had crushes on: Wendy, an emerald eyed redhead, and Sarah, a sapphire blue-eyed blond. I was formally diagnosed in an ER, although this is all second-hand from my brother, as my mother refuses to speak about the genesis of the lightning storm within my skull at all. I’m 51, the youngest of three, and she still thinks of me as ‘the baby of the family’ I’m not even sure where the GTCs occurred. I was put on Tegretol first, it didn’t work, put on Dilantin, it controlled the GTCs, and I was referred to my first neurologist: Noble Jameson (not his actual name), my seizures progressed to complex-partials, and then to a type that mimics an atonic seizure although it is entirely opposite in its effects on my muscles. I have come to call these: Superman seizures, as I fly through the air in them then land with a crash

    Like

    Comment by wordsmith1963 — October 4, 2014 @ 5:45 PM

    • Wordsmith, you’ve been through hell and not quite back.

      I presume Dr. Noble was anything but “noble”. And he certainly didn’t help the matter out.

      Did you ever get to a good neuro? Are you still on Dilantin? (I presume you know the side-effects.)

      And through all that haze, you remember your first crushes. Amazing how strong the heart can work, even if the head isn’t doing so well!

      Like

      Comment by Phylis Feiner Johnson — October 5, 2014 @ 12:43 PM

  2. Grand mal sez at work. Also found out I had a golfball size brain tumor. ! month Before my 2nd son was born. Given 5yrs. He 16 in Nov

    Like

    Comment by JD — October 4, 2014 @ 6:23 PM

    • HOORAY for you, JD! Don’t you love when they tell you you’re dead, before the fact?

      And sometimes when they don’t even KNOW?

      Did you have any surgery? And meds?

      Whatever, I applaud your stamina and assurance.

      And praise the fact that you “beat” them.

      Like

      Comment by Phylis Feiner Johnson — October 5, 2014 @ 12:46 PM

  3. I was 35 years old and had a “grand mal” after coming back from driving a van load of clients from an outing. That’s the only one of those I’ve had. The ER said Seizures and to see the Neurologist who also said Seizures after EEG and physical exam and lots of questions. Couldn’t remember very much. He related it to Febrile Seizures I had as a child. He said 90% of the children that have them have no further problem. But that it can leave a scar on the brain of 10% who will have seizures later in life! Bingo, that was me. I was in Zombie land for 2 weeks until they started me on Tegretol and got it regulated. I would run away from myself, forget how to read and have absence seizures. I’m now on Tegretol 200 mg three times daily and Keppra 1000 mg twice daily. I’m very regulated and haven’t had a seizure in quite awhile. I get an aura once in awhile. It’s kind of an out of body experience that I feel. I’ll be somewhere and think in my mind I can just leave what it is I’m doing and “they’ll” finish and I can go home. The “they” is my body! That only happens when I forget to take a dose of my Tegretol though. I’m now 53 and I’m learning the long term effects of Tegretol. It’s very hard on the memory. I’m blessed to have a job I’ve been at for 20 years now so it’s the same thing over and over. I feel I’m blessed to not have any worse problems than I do. Seriously have to watch medication interaction though! That can kill you!

    Like

    Comment by Dianne Garcia — October 6, 2014 @ 3:22 PM

  4. Do you think the running away from yourself was avoidance or a side-effect of the med?

    You know you can have auras without seizures.

    From “Auras Without Seizures”… https://epilepsytalk.com/2013/02/18/auras-without-seizures-2/

    There’s a foreboding or fear that something awful is about to happen. You feel like a mess emotionally.

    Maybe you feel an odd sensation, like a gentle breeze, buzzing or ringing sounds. Voices that aren’t really there, a nasty taste in your mouth, weird smells, visual distortions.

    Visual and spatial perceptions are off. (Sort of like “Alice in Wonderland” except this is NOT wonderful!)

    There’s a distortion of time. Maybe like an out-of-body experience.

    Déjà vu. You’ve been here before. You’re seeing people and places or experiencing events from the past.

    Yet, new places and things seem familiar – as if they’ve happened before.

    Or maybe it’s the other way around.

    You’re uncomfortable with your surroundings and things that are familiar to you.

    Well-known places may suddenly seem strange.

    It’s an aura, right?

    BUT WHERE’S THE SEIZURE?

    Are you going crazy? Are you imagining things?

    Nope. You’re probably having a Simple Partial Seizure. (I know, I was blown away, too!) The aura IS the seizure.

    An aura is actually a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and your ability to respond.

    You don’t lose consciousness.

    In other words, something is going on in your brain. But it isn’t spreading.”

    I’m not saying this is what happens to you. But it DOES happen.

    And maybe some of it sounds familiar.

    Happily, you’re medicated and stabilized. And yes, we don’t have cancer, MS, Alzheimer’s, Lou Gerig’s Disease, etc.

    As far as medication interactions, you couldn’t be more right. As you can see, I feel the same way…

    “Epilepsy Medication Conflicts…”
    https://epilepsytalk.com/2011/11/22/epilepsy-medication-conflicts/

    Dianne, I think you have a good head on your shoulders (literally) and you’re using it wisely.

    Bravo for you!

    Like

    Comment by Phylis Feiner Johnson — October 6, 2014 @ 5:26 PM

  5. Thank you for the information. As far as the running away from myself goes I don’t know. It was so long ago. I do remember the feeling of chasing myself. Before I knew it I was about a half a block away from where I previously was when I became aware again.
    Scary about what I thought was an aura being a seizure because it’s happened while driving! 3 Alarms on my watch help me to remember to take my meds now. Thank you again.

    Like

    Comment by Dianne Garcia — October 6, 2014 @ 6:49 PM

  6. Wow, three alarms! You’re way ahead ahead of me.

    I screwed up with my medicine so bad that my husband ended up filling my pill packs.

    Pathetic, I know. 🙂

    Hope I can help, at any way in the future!

    Oh BTW, the reason my husband ended up filling my pill packs was that I messed up on my meds so bad that I was at 1/2 my thereupuetuic level and drove into the garage wall!

    Like

    Comment by Phylis Feiner Johnson — October 6, 2014 @ 7:48 PM

  7. Wow, I can see how that would happen with the meds being too low. I had to search to find one but my watch has the 3 alarms. On my cell it didn’t work due to me stepping away from my desk and missing it.
    You know you’re right about what I thought was an aura as really being a type of seizure. I remember the last one I had was more intense than the others and I was driving! Almost home too! I Was going to stop at the little store but felt a strong sense to go home. When I got there it was over but I decided to work out in the yard and started talking to my dog. That’s when I noticed my speech was messed up. It lasted for over an hour. When I have a seizure I leave out words when I talk. It’s really weird. The first time I did that the ER did a full work up for a Stroke. Nah, just another weird seizure!
    You’re blessed to have your husband to help you. I’m single for 8 years now and hope I never have a bad one alone.

    Like

    Comment by Dianne Garcia — October 7, 2014 @ 10:59 AM

  8. Dianne, have you ever head about the “SmartWatch”?

    It’s a motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds!

    The device is a wristwatch which has a GPS module and a proprietary accelerometer/gyroscopic sensor inside to detect the excessive and repeated motions that happen during Generalized Tonic-Clonic seizures and some types of Myoclonic (grand mal) seizures.

    It then records the time, duration and location of the occurrences. Automatic text message and phone call alerts are sent via Bluetooth to an android cell phone (an iPhone version is in the works) of one or two designated family members or caregivers.

    And you can also summon help with a simple push of a “Help” button.

    In addition, if you feel an aura coming on, you can press an “emergency button” that transmits an alert.

    When an alert is sent, the SmartWatch also vibrates. If the alert was accidental, you can cancel it.

    The SmartWatch can even be put in the “snooze” mode!

    If you’re going to engage in anything, (such as climbing or running) that might inadvertently trigger the device, you can temporarily disabled it for 10 minutes.

    Then, when the “snooze” period is over, it automatically resumes functioning.

    Aside from the real-time safety net that comes with wearing the watch, it also provides a complete archived record of all your seizure activity — when and how often your seizures occur, their severity, and how long they last.

    All of which can supply valuable information to your caregivers, neurologist, physician, and most of all, YOU!

    And, by keeping track of seizure severity and duration, medications and other treatments can be changed, adjusted or fine tuned. The SmartWatch will do this automatically, and with more precision.

    There’s only glitch…

    Because the SmartWatch is a motion detection unit, it’s only for those with Generalized Tonic-Clonic seizures and some types of Myoclonic seizures. So it’s not a universal seizure detector.

    And even though it’s primarily worn on the wrist like a watch, you can wear the SmartWatch on your leg or ankle, if your abnormal movements are more pronounced there.

    It’s fully portable and you can wear it in and out of bed, during sleep or waking hours, while it continuously monitors you and issues alerts.

    While the SmartWatch isn’t about prediction — it is about detection. All of which can go a long way towards independence, security and gathering real time information.

    The SmartWatch — A New Type of Seizure Monitor!

    https://epilepsytalk.com/2013/11/10/the-smartwatch-a-new-type-of-seizure-monitor/

    Like

    Comment by Phylis Feiner Johnson — October 7, 2014 @ 12:16 PM

  9. Very interesting! I’ll check into it for sure. Thank you!

    Like

    Comment by Dianne Garcia — October 7, 2014 @ 12:46 PM

  10. It’s real cool. It’s been endorsed by Epilepsy.com and the International Epilepsy Union!!!

    Like

    Comment by Phylis Feiner Johnson — October 7, 2014 @ 12:54 PM

  11. While eating a strawberry at breakfast I had a tonic clonic seizure, while waking up I was trying to put my feet back into my sleeping bag on a sofa. As it turns out the sleeping bag wasn’t a sleeping bag, it was a small tea towel I’d gripped onto during the start of the TC. This in some weird way put me off eating strawberries for a while as I convinced my tonic clonic was an allergic reaction to eating the strawberry. In fact, my TC had occurred while increasing on a AED. Good post!, peace out NP

    Like

    Comment by neuropickings — October 8, 2014 @ 4:47 PM

  12. I had my first grand mal in my sleep at age 18. ER doctor was a colleague of my then primary physician and, because I was okay when I got to the ER, he told me that I should follow up with him that day. My parents accompanied me to his office and he said he didn’t want to run any tests because this was my first one. I was about to start college and he was hopeful this was an isolated thing. This doctor later retired. Meantime, I continued to have partial seizures, just didn’t know what they were. When I was in my early 20’s, I got sick at work one day. Because I was waiting on a customer, I couldn’t retreat to my desk or the bathroom. I lost my ability to understand and communicate with her but remained conscious. I couldn’t speak and when the words came they seemed foreign. I couldn’t understand myself. Co-workers were concerned about me and several lead me to a breakroom. Honestly, it was over before I got to the breakroom but they continued to make a big deal about it. I wonder what they saw that I didn’t? I felt like I missed something for them to be so concerned. Anyway, I went to a doctor the next day. I poured my heart and soul out and told him of the past convulsion and these “spells” I’d been having. He thought it was stress. I left crying and my mother and aunt, who were with me, talked me in to going to my aunt’s doctor who was treating her for seizures. She got me an appointment the next day and Dr. R listened to my concerns and said, “We need to find out what’s going on with you. I’d like to run some tests”. She was the reason I was diagnosed and I remain grateful to her. I am 47 now and the seizures are controlled. I do deal with depression but am okay. I see my neurologist every 3 to 6 months. I’ve worked 27 years with the same company and have 2 wonderful children and am happily married.

    Like

    Comment by Terri — October 8, 2014 @ 4:59 PM

  13. Geeze Terri, in this case, ignorance was definitely not bliss.

    Happily, you had such wonderful co-workers.

    Stress can wear many masks. So can fatigue. And depression.

    But your aunt who knew you so well, (and most likely the foreign world of seizures) dug through that glop and sounds like a woman I’d like to meet!

    Kudos to you. And your aunt.

    You must be very proud. And you should be!

    Like

    Comment by Phylis Feiner Johnson — October 8, 2014 @ 6:00 PM

  14. I was 5 years old, My sister was about to head off to school that morning. Had a GM at home, followed by 2 others. I was rushed to the family doctor (about half hour away!) and he accompanied me to the hospital. This is when they discovered a brain tumor and started mentioning “neurofibromatosis” (the genetic condition I have that causes tumors) in passing around my folks.

    I do feel many others have no clue what we go through. I think “they don’t have seizures, they don’t need to take medications every day…how could they possibly understand?”.
    Just as **I** don’t understand what people with other genetic conditions such as MS, diabetes, ALS, or other conditions go through. I’ve never experienced those symptoms/conditions so I am uneducated on them.

    Like

    Comment by Travis — October 9, 2014 @ 12:08 AM

  15. Travis, I agree. Ours is an invisible condition with its own pains and problems.

    And when I think of that, I too am gateful that I don’t have MS, diabetes, ALS, or other conditions to go through.

    It’s not a bed of roses but it could be worse…

    Like

    Comment by Phylis Feiner Johnson — October 9, 2014 @ 9:26 AM

  16. Woke up in the ICU with a nurse stitching up my back. I had my very first seizure during my first year of college on Exam Week. My parents heard loud noises coming from my room, so my dad was sent to check on me. My poor father walked in to a crime scene, blood everywhere, glass broken on the floor & just everything thrown around. I ended up having my seizure in bed, falling off the bed & knocking down some glass temperature gauges I had & somehow rolling under my bed. So, I tore up my back under the bed where the metal bars are at, then rolling around & convulsion on the glass & everything else that was making me bleed. I lost so much blood that night, that I almost died. I went flat 2x… I was stuck in the hospital for 2wks because every person in that hospital KNEW it was drug or alcohol that caused it. I was interviewed by at least 20 different people asking the same damn question. It felt like I attempted to murder somebody else & not myself. After passing all drug & alcohol tests, they believed it was a 1x deal. 1 year later I had another seizure & it was epilepsy life from that day forward.

    Like

    Comment by Michael Trudel — October 25, 2014 @ 4:04 PM

  17. WOW! That’s some way to start.

    Did anyone in their infinite wisdom bother to give you blood tests in the beginning? (You know — blood/alcohol levels?) Or any other tests for that matter.

    It seems you were “guilty before proved innocent”.

    You’ve really been a victim all around — meeting cruelty everywhere in the system.

    I’m glad you’re still here to talk about it Michael.

    Like

    Comment by Phylis Feiner Johnson — October 25, 2014 @ 6:30 PM

    • They believed I took some drug of some sort that got out of my system before the blood test…

      Like

      Comment by Michael Trudel — October 25, 2014 @ 6:36 PM

  18. Oh pleeeeeze! And how would you do that?

    Like

    Comment by Phylis Feiner Johnson — October 26, 2014 @ 9:20 AM

  19. I was two when I had my first one, but wasn’t diagnosed until I was about six. I was getting ready for a wedding and had hair rollers in my hair (I mean the spied ones, not foam). I remember I couldn’t breathe and I was trying to tell my mom, and being deaf made it somewhat easy because I could sign but next thing I know, my mom is frantically trying to figure out what’s happening. She never saw me have seizures before. On top of that, my brother’s dad refused to call 9-1-1 when I turned blue.
    I remember my brother sitting by my side during this whole time.

    When my mom took me to the doctor, I don’t remember my mom’s reaction, all I know is I was being attached to machines, stare at strobe lights and told I had to take medication for most likely for the rest of my life. The doctors said I would never outgrow them like some kids.

    I remember being in class and being abused for staring out into space and not responding, I never remember what they do during but always the result of it. Was glad my mom took me out of school and put me in a better class and became more educated about seizures.

    My mom has been my greatest advocate, but still those memories linger of seeing how ignorant people are and uneducated. I hope one day this is broken, especially for kids and people in the working world. No one should have to suffer.

    Like

    Comment by Liza — October 27, 2014 @ 4:14 PM

  20. Unfortunately, there were no advocates at my end.

    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.

    Epilepsy was my “dirty little secret.”

    I guess we all have to go through some sort of ignorance or stigma.

    That’s why my job is to educate and advocate, teach and help people understand that we’re smart, feeling, intuitive, people with with brains and brilliance…even if they don’t see it at first.

    Like

    Comment by Phylis Feiner Johnson — October 27, 2014 @ 6:07 PM

  21. I was 16 and had a grand mal. My brother found me. I was put on Dilantin but I was allergic to it. Tegretol was good for me! yea. I am allergic to a lot of the meds. It looks like my hormones cause part of the problems. I have seizures every 3 months. This has been happening since 1981.

    I was able to go to college and get a degree as a respiratory therapist. I was able to work for 18 years. I had a seizure in a patient’s room and lost my job.

    I am a caregiver now for my Dad and have a home based business.

    I have started a blog. having a blast doing this.

    Time for doctors to under the effect of hormones and epilepsy and not pretend it is fairy tail.

    Like

    Comment by veronique brito — November 9, 2014 @ 8:50 PM

  22. Hormones can be nasty things (For Women Only — Seizures and Hormone Imbalances https://epilepsytalk.com/2013/08/11/for-women-only-seizures-and-hormone-imbalances/ ) and Dilantin is even nastier! I know that full and well from personal experience.

    18 years and then poof? You lost your job? Didn’t you have any recourse?

    Anyway, it looks like you’ve turned lemons into lemonade! What’s your blog about?

    Like

    Comment by Phylis Feiner Johnson — November 10, 2014 @ 7:03 AM

    • Thanks for the nice reply. I didn’t have a recourse. I had a seizure on a patient that was a doctor mother and he was in the room. Oh no Mr Bill! lol.

      my blog is about epilepsy and about working at home and I think I am going to add caregiving on there too.
      I have been putting info that I have found everywhere and giving them credit.

      I am having a lot of fun learning about blogging and seeing all of the amazing blogs with information and the support that is out there.

      I am very happy to see that people are finally paying attention to the affects of hormones. I was not kidding when I said I had 2 or 3 doctors say phhh to my face about that problem. I ended up getting help from a gyn that specializes in hormones.

      I didn’t want to go to a lawyer because 1. it was a big hospital 2. didn’t think I would win against them 3. I was afraid of the stress

      I am happy I have been reading other people’s stories. I can see that I have actually done a lot.

      I am very lucky to get the memory back after the seizures. this past time has taken a long time. scary when you don’t remember your name! I am putting my passwords to the computer sites in a book cz I couldn’t remember how to get to the site to tell me the passwords. never thought that would happen!

      I was thinking of talking to Toteman the man that write comics about epilepsy to make a comic to give to young women to help them when they are diagonsed when they are in their teens. It is hard because I don’t think they get life advice. I didnt. It is amazing what is on the internet now but if you don’t know or can’t think to go there doesn’t work. doctors are not always the warmest of folks. someone needs to be a life coach

      Like

      Comment by veronique brito — November 10, 2014 @ 8:32 AM

  23. #1. The more you talk to people, the more you’ll learn. I guess you’ve already figured that out.
    #2. You MUST keep your passwords in a SAFE place. I use Last Pass which remembers your passwords automatically. https://lastpass.com/
    #3. When you decide to build a blog, Word Press https://wordpress.com/website/?source=googleUpgrade&campaign=hsb&gclid=CjwKEAiA4YGjBRDOxa3XvfTnvSASJACC3bLBv8etvlhZH-Tpz-v8x70yG-ZwbCUii_-totN9a8e4gRoCL0vw_wcB is an easy way to go. They have 100’s of already designed templates, good security and lots of widgets (additions to your page) that you can incorporate into your content.
    #4. If you look under epilepsy comics, you’ll find an amazing treasure trove. A place to start is “New Epilepsy Comic Book Series for Children” https://epilepsytalk.com/2014/08/24/new-epilepsy-comic-book-series-for-children/ and also “Expanded Guide to Epilepsy Books for People of All Ages” https://epilepsytalk.com/2014/08/31/expanded-guide-to-epilepsy-books-for-people-of-all-ages/

    GOOD LUCK!!!

    Like

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

  24. I was diagnosed at 2 years old my dad noticed that I was walking very well and then out of the blue fell down. I was diagnosed with epilepsy at two years old but in my 30’s I had flash backs seeing a woman shaking a baby and the baby was crying. A man walked in the room and the baby went to the man. This was my dad and the baby was me. It was my mother shaking me. God spoke to me about this and helped me solve the puzzle of my epilepsy. I wonder how much of the problem of epilepsy is done by abuse.

    Like

    Comment by jillwhiting — November 19, 2014 @ 3:57 PM

  25. As recently as the 1980s, many doctors and scientists thought that by the time babies were born, the structure of their brains was already genetically determined.

    However, new research shows evidence of altered brain functioning as a result of early abuse and neglect. These changes are associated with adult anxiety, depression and personality disorders.

    Experiments at McLean Hospital, for example, show that patients with a history of abuse are twice as likely to show abnormal electrical activity as non abused people. And this abnormal electrical brain activity, in turn, resembles a seizure state.

    Basically, abuse releases a cascade of stress hormones which produces a lasting effect on brain signals.

    P.S. Jill, I sorry for the belated reply. I answered previously but noticed my reply had “disappeared”. Hooray for cyber space! 🙂

    Like

    Comment by Phylis Feiner Johnson — November 20, 2014 @ 1:45 PM

  26. Back when I was three (1961), I was getting scared for no reason. No one in my family knew anything about epilepsy so they sent me to the family doctor who eventually said it was epilepsy but just a minor form. It started out minor but the seizures got stronger and longer and I was finally sent to a neurologist at St. Louis Children’s Hospital.

    Eventually, I had control as I went all four years of high school seizure-free but as I watched my sister and mother pass away in my junior and senior year and I let stress, depression and anger get the best of me, the seizures came back.

    By then, I needed to find another doctor becuase I was too old for the Children’s Hospital. After a couple of mistakes in my choice of neurologist, I found one who would increase my confidence and eventually work with me for surgery. The surgery has controlled my seizures and given me the chance to find out what caused my epilepsy and that was a 105 fever. What I’ve seen and what I’ve learned I thank surgery for.

    Like

    Comment by Ed — November 28, 2014 @ 12:37 PM

  27. Thank you Ed for your story and all we can learn from you.

    Sounds like a long haul you’ve been through — between your losses, dud docs, and finally the brave move to surgery.

    Yours is a story of courage and redemption and we can all take inspiration from your experiences.

    Like

    Comment by Phylis Feiner Johnson — November 28, 2014 @ 8:41 PM

  28. I remember in high school I used to get staring spells. One teacher even threw me out of his class because he thought I wasn’t paying attention (I hated him anyway, and I would LOVE to go back and educate him on what was REALLY going on). Then they turned into migraines where I would black out and lose time. I would probably have seizures, but of course, I don’t know because I was always alone and luckily, I was always on my bed.

    My first “real” seizure was a grand mal during lunch, in a restaurant with my dad and brother the week after I turned 21, in 2004. I was sitting on a stool and remember saying to my dad, “I think I’m getting a migraine.” The next thing I remember is collapsing. My dad told me I started shaking and fell off the stool – he had to catch me and lay me on the floor or I would have split my head open. My family started crying and yelling out to call 911. I remember waking up in the ambulance with my dad holding my hand. My brother came to the hospital later with a friend, my other brother and my mom. They found nothing during testing, so I got sent home. A week later, it happened again, so they kept me in the hospital for a week, and that’s when they diagnosed my epilepsy. It’s intractable, and I am on three different meds. Mostly, I have absences, partials, nocturnals and myoclonic jerks, but I have the rare breakthrough grand mal. I don’t work (currently looking for at-home jobs) or drive.

    When I was diagnosed, I had JUST turned 21 – to hear that I couldn’t drink or drive was earth-shattering. I thought my life was over, but I decided to take control. I do a lot of volunteer work for epilepsy and this makes me feel better, especially since my family is so supportive.

    I love your posts! They put me in a good place!

    Like

    Comment by Lana — January 22, 2015 @ 4:26 PM

  29. Dear Lana, Oh yeah, I know. “Johnny isn’t paying attention.” Thick heads. They deserve a LARGE dose of education. Sic the EFA on him.

    Do you know how intimately migraines and epilepsy are related?

    A strong relationship between migraines and epilepsy has long been suspected.

    But now it is fact, according to extensive research cited by Steven Karceski, MD in Practical Neurology Magazine.

    People with epilepsy are more than twice as likely to develop migraine headaches as those without the disorder.

    Research showed that more than 20 percent of people with epilepsy have migraines, compared to 11 percent of the general population.

    Research has also showed that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy.

    And each has FDA approval for treating them together.

    Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide).

    However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    Epilepsy & Migraines — Kissing Cousins

    https://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    Meanwhile, back to your intractable seizures.

    Have you ever 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/

    Or any of the other options?

    Hats off to you for turning lemons into lemonade! I bet you feel good. And you SHOULD!

    Like

    Comment by Phylis Feiner Johnson — January 22, 2015 @ 6:13 PM

  30. What do u do when u just found out I had ell seizures, and was in the hospital for seven days, and at this time my seizure were going on the hole time, tell my angle walk in my room, did test after test, and found out I was having epl seizures.Finally got meds to try and control it.But what I was trying to say I’m 56 years old, told my mother what was going on, and she said I was lining… Yes my mother was abusive, never change.It just hurts me, she is so unaware and needs to get education about this..Just had a seizures yesterday.Hate it cause I can’t talk, to make people know what’s wrong with me..Thanks for letting me vent

    Like

    Comment by sindey — November 22, 2015 @ 2:01 PM

  31. Sindey, getting seizures at 56 is a real shock. (To say it mildly.)

    And it may be a shock to your parents who are probably in denial (mine were) and therefore abusive (same deal with me).

    Politely put, they’re ignorant.

    You can always talk. To us, friends and anyone you’re close with.

    People by nature want to help, they just don’t know how to — and they’re scared.

    Do you know seizure first aid? If not read this

    Epilepsy First Aid

    https://epilepsytalk.com/2009/09/08/epilepsy-first-aid/

    and show your friends how easy it is to help you.

    You’re not a pariah. You’re simply a person who has a seizure disorder.

    Like

    Comment by Phylis Feiner Johnson — November 22, 2015 @ 5:46 PM

  32. I was an energetic 15mth old and then I was shaking, frothing at the mouth, fever of 105. My parents took me to Jewish Memorial in NY and they did a spinal tap, then they wanted to do another one but said it was Rosiola. I had two grand mal seizures in the hospital and they told my parents I was having seizures. They put me on some liquid epileptic medication and my mom said it changed my mood, I was withdrawn but it didn’t help the seizures. Her happy go lucky little girl would never be the same, then again I guess neither was she. I had hundreds of MRIs, EEG’s and according to my parents about 13 different meds throughout the yyears, The Ketogenic Diet, they tried but they said I gained too much weight(not much changes in that dpt). Kids were so cruel in elementary school, making fun of not only the seizures but anything else about me that wasn’t “like them”. My grades were A’s and then D’s and F’s. I was always worried about when the next seizure would come. I played basketball and softball until the seizures interrupted that as well. My parents signed me up for swimming I was taking one of the diving tests, jumped off the board and never came, I was having a seizure. The coach had to come into the water and help me out. I was taking 4-10pills a day at some points but by the time I meant the best neurologist in the world, I was having 7-9 seizures a day.

    Like

    Comment by Jeannie Mckiernan-Clarke — May 11, 2016 @ 11:41 AM

  33. OMG Jeannie! Yet you were brave enough to participate in everything!

    I remember being stuck on the parallel bars (compulsory gymnastics, not a pretty sight!) and almost drowning in the pool, etc. etc. etc.

    But you had the courage to continue and persevere.

    And then the embarrassment of your grades! Me too. 😦

    Bullying, getting punched in the face, being treated like a pariah, those were all my glorious teenage years.

    But, back to you…

    What happened after you met your “dream” neurologist?

    Like

    Comment by Phylis Feiner Johnson — May 11, 2016 @ 2:58 PM

  34. I started only that i can remember having seizure that began with the same things: stress, hyperventilating then next thing i know its on-crying, pacing and then shaking/convulsing. I reported this to a psychiatrist i began seeing due to my concern over this repeated frightening interruption into my life. She was convinced they were Panic Attacks and prescribed me Xanax. I was on that for a while and then one day they started happening without the hyperventilating and new things began happening. my face started making these strange contortions. i had no control over it anymore or my mouth. i was convulsing more than before and it seemed that it came with less warning and left me feeling like i had been hit by a bus. Around this time which was many months after my panic attack diagnoses i switched insurances and my psych then passed me off to a colleague. The very first visit with my new psychiatrist that i mentioned these symptoms she immediately decided i needed to go to a neurologist and referred me that day. She was positive these could be seizures and she would need to take me off xanax asap because that drug is know to induce and make seizures worse. Thank god for her after seeing a neuro and doing EEG and MRI testing i was switched to an everyday Anticonvulsant med and a new rescue dissolvable med that is an anti anxiety as well as anticonvulsant. I have improved a lot and gone through ups and downs since my epilepsy diagnoses about a year ago now but knowing the right diagnoses is so important! there are many conditions that mock this condition. And my seizure memory is terrible. Without someone there im lost most times I’m sure there were times i was having them before and didn’t even know or remember it!

    Like

    Comment by Krystin — May 11, 2016 @ 3:17 PM

  35. All I can say is thank goodness for the 2nd psychiatrist. And the neuro.

    I’ve had positive experience with xanax but only as an occasional add-on…like times of panicked stress.

    IT IS NOT AN AED.

    I’ve found that Lamictal can act as an anti-convulsant and anti-depressant, but again, not as a mono-therapy.

    You know Krystin, it’s all such a crap shoot…

    The diagnoses, the meds, mono-thereapy or add-on drugs, it can be certainly confusing, if not alarming.

    As for memory, I’m not trying to be sassy, but welcome to the club!

    Like

    Comment by Phylis Feiner Johnson — May 11, 2016 @ 4:05 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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