Epilepsy Talk

How were YOU first diagnosed with epilepsy? | February 10, 2019

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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47 Comments »

  1. I WAS DIAGNOSED WHEN I KEPT SLEEPING ALL ALL TIME .AND WAKING UP NOT KNOWING WHO MY HUSBAND WAS ARE WHO MY DAUGHTER WAS.MY HUSBAND HEARD A LOUD NOISE COMMING FROM OUR BATHROOM AND FOUND ME HAVING CONVULSIONS ON THE TOILET BLUE AND A BIG HOLE WHERE I HAD HIT THE WALL.HE CALLED THE AMBULANCE AND AT THE HOSPITAL THEY DIAGNOSED ME WITH SEIZURES.HE GOT ME INTO A PRIMARY DOCTOR. AND SHE GOT ME IN WITH THE BEST NEUROLOGIST WHO DIAGNOSED ME WITH EPILEPSY.SHE IS A CARING SOUL NOT JUST A DOCTOR

    Liked by 2 people

    Comment by Angela carter — February 10, 2019 @ 4:44 PM

  2. I had to diagnose myself! I had simple partial seizures for years without knowing what they were. But in my early 60s (I’m now 68), they became more frequent and more intense, and I started having complex partial seizures, along with a lot of other strange symptoms, which turned out to be from central adrenal insufficiency! I googled my symptoms and took my discovery to my gp, who referred me to a neurologist. He confirmed the simple partial seizures, but told me my other symptoms were due to aging!! A new respirologist (I have asthma) tested my serum cortisol, and I had almost none! Turns out seizures can be a symptom of low cortisol!

    Liked by 2 people

    Comment by gailmcarthur — February 10, 2019 @ 4:55 PM

  3. Wow. I never knew that, Gail.

    Thanks for the education.

    But it’s sad that you had to look up your symptoms in Google.

    As for the aging part, (I’m 65). I was told that as you age, you lose gray matter around your brain.

    Maybe that’s what he was talking about?

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 10, 2019 @ 5:03 PM

    • The neuro told me that my seizures couldn’t be connected to my other (adrenal insufficiency) symptoms. But since I had “slowing” brain waves, likely due to aging, the other symptoms were also likely just aging. He was so wrong – AI can cause adrenal crisis, resulting in death, if not treated with steroids! When cortisol is low, blood glucose also drops, and this can cause seizures.
      I’ve become an activist for better diagnosis and support for AI patients!

      Liked by 2 people

      Comment by gailmcarthur — February 10, 2019 @ 10:10 PM

      • Goodevening Gail 😊. I was told I had seizures from the age of 2 years, but that it was improperly diagnosed until I was 8 years old. In a way I got lucky (unluckily) by a younger doctor who happened to have an older daughter than myself. Because of his own personal experience he knew right off the bat that I had a grandmal seizure and sent me to the “Children’s Hospital” in Calgary, AB. Where they were FINALLY ABLE TO DIAGNOSE ME PROPERLY!! Ironically the other family doctor I had in the same clinic had a daughter (who also was an epileptic) were my doctors for decades until they both retired 😢. I still live in that same town and I NEVER THOUGHT I WOULD EVER BEG HIM TO COME BACK TO PRACTICE!! I find even the nurses are MORE UNDERSTANDING AND EDUCATED than the doctors now.

        Liked by 2 people

        Comment by Kathy S.B — February 24, 2019 @ 12:40 AM

  4. What did I know at 7 months old having what they called petit mal seizure condition then. Now 58 years later I have the GRAND MALS which are the worst ever to live with. At age 4 I guess was when i was told the first time & I never understood what they MY MOM & DAD meant, as I asked again around 6 years old & tried to understand it more. I knew then foods were doing something to me, but THAT was never considered any problem because my sister, dad & mom had no problems then with foods they ate, & that was all they went by. NOW THEY LISTEN some 58 years later & for the past 20 years as I have proven to many what the chemicals in the food industries are doing to every persons brain whether they know it or not. EPILEPSY, PARKINSONS, MS, ALZHEIMERS / DEMENTIA.& many other brain conditions are triggered by the MSG’s NITRATES, & ASPARTAME’s that everyone is eating daily. the foods had those toxins in what was sold back in the 1960’s, but WHAT did I know then.

    Liked by 2 people

    Comment by James Davis — February 10, 2019 @ 5:26 PM

    • Unfortunately, as a child, you were at the “mercy” of those who diagnosed you and did the best they could.

      As you’ve grown, you developed your own knowledge and can live your life accordingly.

      For that, I say, “congratulations”.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 10, 2019 @ 8:59 PM

      • My son’s seizures are triggered by Red dye #3 in addition to the thing s you mention. We must be diligent reading labels!

        Liked by 1 person

        Comment by Heidi — February 11, 2019 @ 6:09 AM

      • Wow. I’ve heard of yellow dye as a trigger, but not red dye. But it makes lots of sense, since they’re in the same family.

        Thanks for the tip, Heidi.

        Like

        Comment by Phylis Feiner Johnson — February 11, 2019 @ 9:17 AM

  5. The neurologist “who” does the diagnosing might be more important than the “how.” My “who” was Dr Garvin.

    Liked by 1 person

    Comment by Susan — February 10, 2019 @ 6:15 PM

  6. I had a gran mal at summer camp when I was 10. One EEG and I was diagnosed.

    Liked by 1 person

    Comment by Michael Bowles — February 10, 2019 @ 7:26 PM

    • That must have been scary.

      I was about 10, too.

      Do you think emerging hormones could have had any influence on developing seizures?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 10, 2019 @ 9:04 PM

  7. I was diagnosed when I was 12 after being at a camp and got some kind of infection and later started blacking out like people do when they have seizures. I don’t remember any of it and they sent me back to the camp and thought I was okay and later had another one and took me back to the hospital for a few weeks and that’s when they found out I had grand mal ones back then. Years later had to get A VNS in me cause meds wouldn’t work and later had a few brain surgeries. now these days I might have a very small one but nothing like years ago.

    Liked by 1 person

    Comment by Corina — February 10, 2019 @ 9:36 PM

    • Do you think the infection was an autoimmune one?

      Autoimmune Epilepsy — Cause of Previously Unexplained Seizures?

      https://epilepsytalk.com/2018/11/07/autoimmune-epilepsy-cause-of-previously-unexplained-seizures/

      Whatever it was, I’m sorry you had such tough sledding, but glad you’re doing better now.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 10, 2019 @ 9:55 PM

      • Goodmorning Gail 😊. I also started to notice my seizures changing as well! They changed from seeing (black and white) to hearing a constant beating and as weird as it sounds they colour of the signs on the highway from an oranges to bright green. Then after my last major concussion my sodium, Sugar, electrolytes. We’re constantly low until now!! Oh how I wish even General practisers learnt of keep abreast of such things!! Instead of making me feel like a hypochondriac!! They (her and I THOUGHT my neurologist) wouldn’t give me the “Ativan I kept telling me I needed for emergencies”. I had new doctor now so I’ll bring that up with her on my next appointment. Makes me wonder if even our vision changes as well? Because I couldn’t have proper test done on my eyes because I couldn’t handle the blinking light part!! Maybe that should be something ALL DOCTORS KNOW OR AWARE ABOUT!!!!! Thank you and I will have a talk with my family doctor about it as well. If it happens to that that’s causing my problem (which leads to stomach aches and not eating) what exactly do I say to my doctor without sounds crazy or uptight? Lol which honestly by now I am. Thank you

        Liked by 1 person

        Comment by Kathy S.B — February 24, 2019 @ 11:47 AM

  8. I had a tonic clonic at a camp one morning when I was 14. Camp nurse didn’t do anything about it except give me a note to give my mom when I went home about a week later. I had never heard of epilepsy and had no idea what a seizure was. Had an EEG a couple of months later, turns out it showed epiform spike/wave patterns but we were never told this- found out a few years later. A few months later I had a 2nd TC, got taken to ER and was diagnosed there. Next day I think I was given a prescription for dilantin, told to take it, and that was it.

    Seems to be a lot of us who had out first seizures at camp!

    Liked by 1 person

    Comment by Katie — February 10, 2019 @ 11:10 PM

    • Katie, I know this might sound crazy, but all of you might have had or been exposed to encephalitis.

      Viruses and bacteria carried by mosquitoes and sometimes ticks are some of the most common causes of encephalitis.

      And seizures are common during the initial stages of encephalitis.

      Because they occur as a symptom, they’re referred to as “acute symptomatic seizures.”

      That’s because the after-effects of encephalitis’ inflammation may leave brain cells liable to the long-term “electrical storm” we know as epilepsy.

      Those unlucky few who develop epilepsy after encephalitis will be plagued with what they call “unprovoked seizures”.

      And there are others who may not have had any seizures at all, or maybe just a few which seemed to have settled down.

      Suddenly they have the surprise of unwelcome unprovoked seizures, after the encephalitis seems to have exited.

      Epilepsy and Encephalitis

      https://epilepsytalk.com/2013/09/18/epilepsy-and-encephalitis/

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 11, 2019 @ 9:36 AM

      • Doesn’t sound crazy at all Phylis! Not something I’d ever considered. Although in my case, knowing what I now know, pretty sure it was a case of just the timing. Adolescent onset, and only had 3hrs sleep the night before, ie severe sleep deprivation as the trigger. I was going to get E sooner or later, camp or no camp.

        I know someone personally who developed E as a result of what they think was enecphilitis, but hers are secondary generalized and surgery was able to help reduce the severity. I was under the impression that TCs that are the result of brain injury/illess are usually secondary gen? (Please correct me if mistaken). Mine are definitely primary.

        Liked by 1 person

        Comment by Katie — February 14, 2019 @ 4:55 PM

      • Kate, Speaking of adolescence do you have Catamenial seizures — around your period — now?

        Catamenial Epilepsy – Do You Have It?

        https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

        TCs can happen any time to any one for any reasons.

        The onset of generalized tonic-clonic seizures could be caused by a variety of health conditions.

        Some of the more severe conditions include a brain tumor or a ruptured blood vessel in your brain, which can cause a stroke.

        A head injury could also trigger your brain to cause a seizure.

        Other potential triggers for a grand mal (TCs) seizure could include:

        Low levels of sodium, calcium, glucose, or magnesium in your body

        Drug or alcohol abuse or withdrawal

        Certain genetic conditions or neurological disorders

        Injury or infection.

        Sometimes, doctors aren’t able to determine what triggered the onset of seizures.

        You may be at a higher risk for having generalized tonic-clonic seizures if you have a family history of epilepsy.

        A brain injury related to a head trauma, infection, or stroke also puts you at higher risk.

        Other factors that could increase your chances of having a grand mal seizure include:

        Sleep deprivation

        An electrolyte imbalance due to other medical conditions

        Or the use of drugs or alcohol.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — February 14, 2019 @ 5:45 PM

  9. I was 9 or 10 years old when first diagnosed. I had been suffering from extreme migraines. The ones where the floor underneath you looks as if it is in 3D. My mother took me into see my primary. He saw something behind my left eye and sent me in for a CAT scan. They had found a cyst on the left side of my brain. The diagnosed me with epilepsy. A year later the cyst was gone. Supposedly they told my mother I would grow out of the epilepsy and took me off the meds. Fast forward. In 2015 I had started smelling things no one else could. I would lose my balance on while riding my motorcycle and fall. In 2017, after a MRI, and the. seeing an ENT, I asked to see a neurologist. After a week of 24hour EEG they found I was having seizures. I never knew I was having them. They cannot tell me if I actually grew out of it and it came back or if I’ve had it this whole time. I was rediagnoaed at the age of 46.

    Liked by 1 person

    Comment by Emily Lewis — February 11, 2019 @ 6:50 AM

    • Was the cyst benign? Because oftentimes that can provoke seizures.

      And migraines are closely aligned with seizures also.

      But the whole thing must have been frustrating going through periods in and out of seizures.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 11, 2019 @ 9:26 AM

      • Yes, the cyst was benign. It has been very frustrating.

        Liked by 1 person

        Comment by Emily Lewis — February 11, 2019 @ 6:53 PM

  10. I bet it was frustrating. But better that than the alternative.

    Like

    Comment by Phylis Feiner Johnson — February 11, 2019 @ 7:00 PM

  11. I’m so sorry to read your story. That is awful. 😔

    Liked by 1 person

    Comment by Jill sassone — February 11, 2019 @ 8:40 PM

    • I appreciate your sympathy, but other people have it way worse.

      Just read some people’s accounts.

      By that standard, I’m pretty lucky.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 11, 2019 @ 11:07 PM

  12. Twenty years ago in just another ordinary day, I got out of work & joined my friends for a coffee break & a nice evening as usually expected, to only end up waking in hospital emergency room bed surrounded by my family & friends for the ER Doctor on duty to tell me “Sir, You jut had grand mal seizure”.
    It was an embarrassment to find out the people around me knew about my seizure before me.
    Refusing to believe the Doctor’s diagnosis, I ended having few more seizures, before my odyssey to find out “what is a seizure” began.
    Thanks to Stanford University Epilepsy Center, I’ve to see myself having seizures on recorded video, before I learned to accept that I’ve become Epileptic.
    Ever since, I learned to live with seizures.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — February 11, 2019 @ 9:47 PM

    • Wow, what a way to end the day. And to discover the world of seizures.

      But I guess, in its way, it was a road to the enlightened individual you are today.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 11, 2019 @ 11:11 PM

  13. Wow. I’m glad my started off as simple seizures but we’re diagnosed early. Got worse over the years. The seizures began different and more often. Ineffective meds after 40 yrs led to brain surgery. Successful 500plus days seizure free. Fell several times in my life but never broke a bone. God was watching over me. Carry two pregnancies full term healthy boys perfect thx god. 🙏💕

    Liked by 2 people

    Comment by Janet deardorff — February 14, 2019 @ 1:40 PM

  14. Fabulous, good for you!

    I haven’t had too much luck in the falling department.

    Just call me “Lady Concussion”.

    But, I’ve survived it all, so life is good.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 14, 2019 @ 2:13 PM

  15. I was 13 years old,came back from a band concert that evening,went to bed as normal but when I woke I was in the ER. My parents found me having a grandma seizure,which after that I was diagnosed with Petit mal seizures. My dad’s side of family his mom had few growing up,his brother had them till was 20 then passed away so dad kinda knew wat was wrong before the doctors did!!

    Liked by 1 person

    Comment by Jeanette fry — February 15, 2019 @ 6:33 AM

    • I’m so sorry to hear that.

      You know there’s a form of epilepsy called Musicogenic Epilepsy.

      I’s a form of reflexive epilepsy in which a seizure is triggered by music or specific frequencies.

      Sensitivity to music varies from person to person.

      Some people are sensitive to a particular tone from a voice or instrument.

      Others are sensitive to a particular musical style or rhythm.

      Still others are sensitive to a range of noises.

      That could have set you off as a trigger.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 15, 2019 @ 9:55 AM

      • There is a SPECIALIST ON YOUTUBE YOU HAVE TO WATCH!!!!!!! I came across it as a FLUKE one day and SERIOUSLY STARTED JUMPING FOR JOY!!!!! I told my husband I GOT IT!! I HAVE A WAY TO SHOW YOU HOW IT FEELS TO HAVE A SEIZURE IN A WAY YOU CAN UNDERSTAND!!!!!!! I’ll look it up and post it once I can find it!! But I sat there in a daze because I NEVER THOUGHT I WOULD EVER BE ABLE TO EXPLAIN A SEIZURE IN SIMPLE TERMS UNTIL THEN!!!!!!! I swear it almost made me cry!! I’ll look it up for you. ❤️

        Liked by 1 person

        Comment by Kathy S.B — February 24, 2019 @ 12:00 PM

      • I have it!! It’s a TEDx Talk with (Jokubas Ziburkus). “TEDxVILNIUS)
        It’s called “There’s something you should know about Epilepsy and Cannabis”. I have NEVER TRIED CANNIBIS myself and I was in the process of looking into it and that caught my eye. I watched and almost started to cry because I thought “OH WOW!!!!!!! I CAN NOW DESCRIBE A SEIZURE TO OTHERS WHO MAY NOT UNDERSTAND THEIR WAY!!!!!!! I’m curious to know what you thoughts maybe? It interesting I promise!!!!!!! 💕

        Liked by 1 person

        Comment by Kathy S.B — February 24, 2019 @ 12:14 PM

  16. After having within one week two episodes of convulsions while sleeping, a visit to a neurologist and an EEG confirmed I had epilepsy. The CAT scan was negative so mine was called “idiopathic epilepsy” . I was 34 at the time. the 90 mg of phenobarbitol a day all but put an end to my career . The fact that I had been in a car accident 2 years earlier, where the impact going rear end against a cement wall after being hit by a passing drunk driver on a freeway caused my passenger headrest to break, did not seem of importance to this neurologist…. All subsequent neurologists( I am now 70) have attributed the E problem to that accident. After many “experiments” with other meds, I was finally able to get off the barbiturates after 20 years; and by avoiding the bad food additives and addressing food allergies as well as replacing lacking nutrients because of the meds, using homeopathic remedies whenever possible and continually educating myself online (thanks also to this blog!), I have been seizure free for a number of years.

    Liked by 1 person

    Comment by Andy — February 15, 2019 @ 11:46 AM

  17. Long ago and far away.

    I’ve been married longer than that!

    Like

    Comment by Phylis Feiner Johnson — February 15, 2019 @ 4:09 PM

  18. Kathy, “seeing (black and white) to hearing a constant beating and as weird as it sounds they colour of the signs on the highway from an oranges to bright green,”
    sounds like it could be a form of synesthesia.

    Sight, sound, touch, taste (and, much less often, your sense of smell) sensations can occur simultaneously and also involve involuntary movement.

    An example is the sensation of flashing lights, a taste, a feeling of heat rising, and a high-pitched whine.

    Hearing the word “five,” you might see the number “5” projected on a gray background. Letters turn into colors…colors turn into light.

    Of course, photosensitivity is a reflex action. And it’s a trigger, which doesn’t help much.

    As for TEDx Talk with (Jokubas Ziburkus). “TEDxVILNIUS) on UTube, what a revelation!

    I wish more people knew about that!

    Maybe you should post about it on Facebook and share the news.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 24, 2019 @ 2:08 PM

    • Goodafternoon Phyllis 😊. I TOTALLY AGREE!! I was SO EXCITED I actually contacted (thanks to a SMALL TOWN” a couple of my friends who are nurses and sent that to them. One actually witnessed me (when I used to coach hockey lol a LONG TIME AGO) trying to get off the ice during a practice and didn’t quite make it!! She came down to me and apparently I wouldn’t listen or settle down until my husband came and instructed and stayed with me until I finished my seizure. We then left the ice. Later on I returned back to the ice and she said “there was always an argument amongst professionals as wether or not Epileptics hear during a seizure? And my husband and I proved epileptics DO HEAR AND LISTEN!! Even though way may not remember. ❤️“. I told it’s all in the other person’s voice and touch 😘. It the drum beat!! Our bodies move, feel, heat and almost see that drum beat until it’s too fast, redundant or our baddies can’t take it anymore!!!!!!! All at once. Lol I still refuse (based on a promise to my grandma and old people) to use cannabis, but IT SURE WAS A SENSE OF RELIEF TO FIND!! That way it’s easier to explain to others who care and want to learn more!!

      Liked by 1 person

      Comment by Kathy S.B — February 24, 2019 @ 2:40 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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