Epilepsy Talk
What was your first seizure like? | April 4, 2020
I can remember being in the shower, washing my very long hair. It was one of those old-fashioned showers with a heavy plate-glass door and a stainless steel handle that you had to turn to get in and get out. There were 4 water jets…three coming from the side wall…and a shower head in the ceiling.
All of a sudden, it felt like my blood was rushing out of my toes. As all of my energy drained out of me, I thought: “I’m going to drown.” Then, as I fought with the locked door handle to get out, I realized: “I’m going to die.”
With one last push, I managed to turn the handle, before I went down. And thankfully, my head landed on the floor, outside of the shower.
I was terrified.
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I was in my middle 40s. I owned a very busy little hair salon. I remember finishing or beginning a little girls hair. (I’m fuzzy on this). Anyhow we kept the capes on the wall in the back hallway, and I remember either hanging one up or vice versa. All I remember is hearing yelling off in the distance, then coming to in an ambulance driving at rat portage hill. (A local nickname). Rat portage hill is halfway between the two towns where I live. The hospital is not where I live, it’s half an hour away. So I must have been unconscious for quite a while. I remember a woman looking over me, and I said “who the hell are you”?
The ambulance attendant said that I had just had a seizure and I said “what’s a seizure”?
That’s all I remember.
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Comment by Eve Quigley — April 4, 2020 @ 12:08 PM
How terrifying. What a way to learn the narrative of “a seizure”.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:26 PM
I may have had seizures earlier which I don’t recall. However, one I recall. I was sea kayaking in the Apostle Islands (Lake Superior) with my boyfriend. I felt weak and confused, couldn’t hold my paddle. Yelled I needed help, said I felt weird. Luckily he was near and grabbed onto my kayak. Also lucky we were near an island with beach. He pulled me out and I collapsed on shore. He just waited it out until I could recover.
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Comment by Kristi Russo — April 4, 2020 @ 12:13 PM
I had a seizure while trying to land a canoe. I went through the canoe. I still have the scars 50 years later. 😦
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:28 PM
I had just gotten in from riding my snowmobile and was in my shed with my cousin. Luckily I was sitting down in a soft chair and the next thing I know he was saying something had happened to me, telling me I had a seizure or stroke. At first I refused to go to the hospital but had another one shortly after. I was admitted to my local hospital but went into staus a couple of days later and had to be intubated and air lifted to our major trauma hospital in the province where I live where I woke up eight days later. Fun times…lol…I try and have a sense of humor thru it all!!
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Comment by Dennis — April 4, 2020 @ 12:14 PM
Somewhere there must be a page or book of epilepsy in-jokes that only we are allowed to tell, and that only we find funny.
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Comment by HoDo — April 4, 2020 @ 1:22 PM
This is all I could find, HoDo.
I Only Have Seizures When I Want To: Shake Things Up Epilepsy Awareness Ironically, it’s a ruled Notebook 6×9 Inches – 120 lined pages for notes, drawings, formulas | Organizer writing book planner diary, by Epilepsy Publishing
I guess the “joke” is on us!
Then there’s this one, but the jokes are kind of stupid (a lot of seizure salad jokes in there): https://upjoke.com/epilepsy-jokes
I stopped my “research” there.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:43 PM
OMG a status seizure! What an ominous beginning.
I’m glad you made it through and can still laugh at it, too.
Bless you.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:30 PM
Having a sense of humor is noble. Going into status is terrible. Especially if you know what’s going on.
I went into status and was taken to the ER, where they finally got things under control.
Unfortunately, it was a time-release drug and the whole thing started again, but more violently.
I had two heart attacks, before they put me into an induced coma. And like you, I work up eight days later.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:53 PM
My neurologists say that I’ve had seizures all my life, though there’s some argument about what in my case constitutes a seizure. (Put the neurologists in a boxing ring and let them duke it out, I say.)
Anyway, the first incident I recall happened when I was 2 going on 3, and it was one of the rare ecstatic ones. There have only been three or four of those. I reported it to my father, who said something like, “Don’t be silly,” because who knew? It would be twenty-some years until I was diagnosed.
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Comment by HoDo — April 4, 2020 @ 1:07 PM
I was told I was a clutz and to stop being so clumsy.
Walking into walls (and breaking my nose) was one of my favorite stunts.
Finally, three years later, my father (who was tired of me knocking his precious collectibles to the floor), took me to a neurologist.
My EEG told the tale.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 1:57 PM
I started when I was three so I don’t recall what happened too well. All I remember was I started getting scared for no reason and wanted mom or someone else to hold me until the “scared feeling” (seizure) went away.
On the lighter side, my brother was kidding me by showing me a scar he had on his leg and told me that was where I used to grab him and not let go until he picked me up.
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Comment by Ed Lugge — April 4, 2020 @ 2:22 PM
Good for brother. Bad for you! 🙂
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 3:47 PM
Another good Dad joke. I used to tell my daughter that she had to pay for anything she broke. Or, stop wrecking our house. Very exaggerated of course.
These so called jokes seemed to work to lighten the load for her a bit.
Fortunately we are seizure free after brain surgery now.
But we never forget our comrades who still battle with seizures.
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Comment by A Dad — April 5, 2020 @ 7:27 PM
Well, my outcome as “crash” wasn’t awfully happy.
But, I’m ecstatic to hear of your daughter’s surgery and success.
What a joy! What a blessing!
I thank you for keeping us in your thoughts.
I’m sure your story is a comfort and an inspiration to many.
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Comment by Phylis Feiner Johnson — April 6, 2020 @ 10:04 AM
I just got out of work, drove my car about 5 miles to same coffee shop I hang out with my friends everyday after work, parked my car & ordered the same strong Latte I always drink, took my seat & started chatting with my friends, expecting nothing out of the ordinary.
With no previous symptoms nor obvious experience, the next thing I remember is waking up confused, disoriented, wondering & asking WHY I’m in bed, surrounded by a doctor, nurses, my brother & my friends from the coffee shop?
“Sir, you just had a seizure”. said the Doctor.
And I said “What in the hell is a seizure”?
Thus began the 20yrs of medical adventure.
Gerrie
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Comment by BahreNegash Eritrea — April 4, 2020 @ 2:33 PM
Quite the adventure for an innocent.
Good things your friends were there (as they’ve always been since then) to help you to safety.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 3:49 PM
Scary
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Comment by lakefreak — April 4, 2020 @ 2:38 PM
Having never personally experienced medical scenery firsthand before, waking up half naked surrounded by friends & strangers staring at me in bed that I don’t recognize, desperately trying to figure out what’s going on & trying to gain complete awareness & consciousness dressed in hospital pajama was far more humiliating & embarrassing than scary.
Ten years later, fortunately, the same friends stucked out with me being very understanding, supportive, actively engaged advocating & rescued me from another tormenting experience, when I ended up handcuffed to hospital bed by the “ambulance & ER crew” for just another grand mal seizure, proving that the precious bond of loyalty in friendship is far more powerful than the combined crippling fear & deficiency in epilepsy & hospital industry.
And after 20yrs of seizures, it feels like I’ve been there before, Deja Vu!
Gerrie
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Comment by BahreNegash Eritrea — April 6, 2020 @ 1:07 PM
Oh Gerrie, it’s obvious that you have very loyal, dedicated, kind and caring friends.
But my guess (or my “bet”) is that you are the same kind of friend in return.
“To have a friend, you have to be a friend.”
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Comment by Phylis Feiner Johnson — April 6, 2020 @ 1:16 PM
When I was younger I always knew if I was going to get sick (once I was officially diagnosed) and I just made it my job to GET AWAY FROM ANYONE!! Until I got older and my “childhood friends” were then (or are now) nurses!!!!! Maybe it’s because their my friends and I grew up with them, but I seem to hear them and I trust them. They know how I am prior, during and after a seizure. However they all say “I seem to listen to my husband’s instructions best during a seizure opposed to them. And have all told me “my husband and I NEVER SEIZE TO AMAZE THEM ALL!! Because we’re proof an epileptic can hear and respond during a seizure!!!!!!!”. I’ve been asked why? And my response was and still is “because he’s calm, speaks gently to me and ALWAYS HUGS ME AND TELLS ME HOW TO BREATH AND LET’S ME KNOW I WILL NEVER BE ALONE!!!!! 🙏🏼🦅😘”
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Comment by Kathy S.B — April 17, 2020 @ 11:52 PM
Sometimes Arthur was there to comfort and cuddle me, but almost all of the time, I was alone.
And when I was out, I was out. The lights were out but nobody was home.
I think it’s wonderful that you can have this silent communication with your husband.
Just further proof of your deep, deep bond.
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Comment by Phylis Feiner Johnson — April 18, 2020 @ 10:27 AM
I found what is called a “weighted blanket” really helpful when my husband wasn’t available. I swear it’s a “MAGIC BLANKET”, but it can get heavy after awhile too lol 😂. For some reason apparently I always try to get away from everyone when I feel a seizure coming on as well. Lol 😂 I swear my new watch CATCHES EVERYTHING!!!!! Even my blood pressure and movements. I’ll admit I do take it off and leave off for hours sometimes so it’s not always telling me to “BREATH”!!!!! Lol 😂
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Comment by Kathy S.B — April 18, 2020 @ 11:00 AM
Do you have an Apple watch? I hear there’re terrific.
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Comment by Phylis Feiner Johnson — April 18, 2020 @ 11:24 AM
Yes I had an Apple Watch donated to me by the “DannyDid Foundation”. There was paperwork involved and a phone meeting as well. I was able to have one donated to me. They are ABSOLUTELY TERRIFIC!! But I do find if I’m actually doing physical work or excessive/aggressive work it does trigger often!! It messages 3 people to notify them and actually calls one person. So to prevent it from triggering I do take it off therefore it doesn’t scare my husband or children and best friend. It monitors my movements, blood pressure, and quite honestly I’m still learning how to properly work it myself. Lol I’m not very TECH SAVVY!! Lol 😂
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Comment by Kathy S.B — April 18, 2020 @ 11:37 AM
I’m not tech savvy, at all. But, it really does sound like a fantastic device.
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Comment by Phylis Feiner Johnson — April 18, 2020 @ 1:58 PM
You just have to make sure to purchase to right “weighted blanket” that suits your height and weight and NOT SLEEP WITH IT ALL NIGHT or you won’t be able to stand the following morning!! Lol 😂 I found that out the hard way, but it appears to be QUITE THE HIT IN MY HOUSE and has CAUSED WARS!! Lol mind you I think that has to do with what feels like “HOUSE ARREST” on everyone in my home lately!!!!!!😂😂😂😂😂. I MUST ADMIT even for me and my husband and we’ve been known for locking ourselves in our bedroom for sanity sake!! 😂. But for the first time this year I did actually ask “if we could PRETTY PLEASE HAVE “barbque steaks”?🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼
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Comment by Kathy S.B — April 18, 2020 @ 11:46 AM
🙂 🙂 🙂
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Comment by Phylis Feiner Johnson — April 18, 2020 @ 4:07 PM
I don’t want to remember what my last one was like. which was 2 weeks ago, & unexpected, as I did a lot of outside work that day, That has happened in the past which during the day when I was working what i was doing, I felt fine. But my 1st ever seizure I knew nothing about at 5 months old,1960 Thanksgiving Day. << That is my worst holiday for me,
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Comment by James D — April 4, 2020 @ 2:53 PM
Oh James, what a way to “celebrate” Thanksgiving. Not much to give thanks for that year!
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 3:51 PM
I don’t even remember my first Seizure. I usually workout early in the morning. Apparently one morning I was lying down on the floor and having a Seizure. My wife called 911 and they took me to Kaiser …and then later on to Stanford. I was in a medically induced coma for a over 3 months since I was having a lot of Seizures. I don’t remember anything as to what happened before I woke up from my coma. I thought my wife was a friend and apparently kept calling her using my sister’s name. Took me a long time before I came to me senses. I have grand mals sometimes and am really confused afterwards. My wife told me that a couple of times after the grand mal I was taking off my clothes and walking into the garage. Not sure if it’s funny or weird.
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Comment by prasadmok — April 4, 2020 @ 3:52 PM
OMG. There’s nothing in your experiences that’s funny, in my humble opinion.
How you must have suffered. (Even if “the lights were out”.)
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 3:59 PM
I was around 9 and I was in bed at the time I think and the room felt like it was spinning so I held on to my bed posts. I don’t know how long it lasted but at that age I wasn’t sure what happened so I didn’t tell anyone about it.
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Comment by Robert Nichols — April 4, 2020 @ 3:58 PM
When I had seizures as a young kid, it used to feel like the world was spinning at 100 miles an hour inside my head.
I would try to rip my hair out to stop it.
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Comment by Phylis Feiner Johnson — April 4, 2020 @ 4:01 PM
I remember my first seizure in grade 11 in front of math class at the blackboard. It was also my first Grand Mal. I don’t know whether I was scared or embarrassed, but my mother made me go back and stand tall, even though I was afraid of what people would think. But, I went back and was glad I did, through it all I made friends with a girl who, I had no idea, was also burdened with Epilepsy. We are still friends to this day.
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Comment by Donna Jones — April 5, 2020 @ 9:25 PM
What bravery! What courage! And what a smart mom you had.
Be proud, stand tall, you managed it all.
And what a gift you got in return.
A forever friend.
How many of us can boast of that?
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Comment by Phylis Feiner Johnson — April 6, 2020 @ 10:07 AM
I now realise I had been having partial seizures for quite sometime, deja vu, jamais vu etc. Probably since childhood.
But the first Grand Mal that I’m aware of, happened just upon waking one morning, two paramedics and my Husband in the bedroom was quite the early morning wake up call! I simply couldn’t believe it, so thought there must be some mistake and it was just a one off. I felt like I’d run a marathon the next day, every muscle in my body ached.
The second Grand Mal I was in the shower, I remember turning round to get the water on my back and the next thing I woke up in bed. I had gone down with such a crash, hitting my head on the metal soap dish, once again I was lucky that my Husband was on hand to get me out of the shower. I had a lump like a golf ball on my head and some very bad bruising. I wonder what would have happened if I’d been on my own both times.
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Comment by Shelly — April 6, 2020 @ 4:42 AM
As you probably remember, my first seizure was in the shower. And I thought I was going to drown.
However mine was just an absence seizure, so I crawled to the shower transom alone.
But how horrible for you to have such a drastic seizure. And how scary.
Aren’t we all happy that your husband was there to save you.
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Comment by Phylis Feiner Johnson — April 6, 2020 @ 10:12 AM