Epilepsy Talk
What kind of seizures do you have? | June 15, 2021
I’ve got to admit, my seizures were all over the place. Absence, drop, tonic-clonic…
I never knew whether I was coming or going.
Before I did a “face plant”, I would try to scramble to the floor on my own accord.
But, I wasn’t often successful.
Concussions are my middle name. Oh, if I had a dollar for each one!
But this really isn’t about me.
It’s about you. What kinds of seizures you have. And how you cope with them.
Tell us and share your experiences.
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Epilepsy Talk 
Mine are absense, and I have no idea why, but it seems like I have months in between attacks. When they’re happening, it feels like I have them for days.
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Comment by Gabriela B. — June 15, 2021 @ 10:22 AM
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — June 15, 2021 @ 11:18 AM
Fantastic is what I would call them if the danger wasn’t so real. Medication has reduced the symptoms in odd ways, but they are gaining on me and the drugs as I age. Last week I had a simple focal while driving that became a complex within 20 seconds or so. I pulled over immediately as I was cruising the rim of Tripp Canyon AZ. When the complex hit, hallucinations took over my vision and as most local sensations faded I heard the voices of the whatever denziens live in that part of my consciousness. They were teasing me with the asnwers to the universe again while kneading my endorphin glands with joyus frenzy – man that feels good. They said “These are the 2 words you need to remember if you want the answers” I rememeber staring at the dirt road ahead of me as they faded out – lips murmuring the words over and over, breathing returning to normal, left hand no longer picking at the webbing of my right hand.
I was back. I opened the car door to stretch and breath and well… you all know… return to being me.
After a few walks around the car I tried to remember the words…. they were gone. Like I never heard em. I remember all the event I think – but the valuable info is not there. It’s horribly frustrating.
Always, I get so close to the answer that would bring total enlightenment – total vision – then whammo – general seizure or fade away. I am not a religious man, but this sure makes me rethink that every time.
I don’t actually think there is an answer there hiding in my subconscious or that my inner voices know something my executive thoughts don’t. But it sure feels like it and it sure feels better than really great. If not for the brain damage I would be all in for more.
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Comment by Bill — June 15, 2021 @ 1:33 PM
Enlightenment on the rim of Tripp Canyon AZ?
I guess that makes you either a mystic or a miracle.
WOW!
If you find those two words, share them with us, PLEASE!
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Comment by Phylis Feiner Johnson — June 15, 2021 @ 1:47 PM
If not for the brain damage…. you wouldnt be who you are :D….. I know thats really difficult to vibe with…… I wonder about it all the time….. if I hadnt started having seizures, would I be who I am today??……… do I like who I am today?…. these are the questions that make me close the curtains and crawl back into bed LOL
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Comment by Aaron Holmes — June 16, 2021 @ 5:48 AM
Bill,
Beyond the geographic distance, I thought that you’re describing my conditions & hardships, I feel that I have been walking on your shoes from a 1000 miles away.
Thank you for describing all the stages & types of your epileptic seizures, I couldn’t have described my own seizures any better.
We got a lot in common
Best Wishes, Get Well.
Gerrie
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Comment by Gerrie — June 16, 2021 @ 6:34 AM
Good news and bad news in relation to this post.
1st… thanks for replying.. feels good.
2nd.. drove to Texas with my daughter for a softball tourney. while driving I got the “brain warp” (keeping that term).. I pulled over to let her drive. We drove through the Apache and Gila mountains and every time a big vista came up I would have a simple. 4 in all. Well I wanted those 2 words that were the big answer from the previous complex. Really wanted em, too much so, so on the last simple I focused on the taste and sensation and worked on driving it home. Well turns out that it’s pretty easy and in a few seconds I had lost vision and could hear, well, a lot. rushing water and voices mainly. So I tried to ask… for the 1st time… I tried to act instead of watch and discovered to my disappointment and a little fear that I was only a passenger. I could not act… like trying to talk in a dream but paralyzed. Effectively a prisoner… thank goodness 20 or 60 seconds… who knows… goes fast
so… that was foolish on my part. That’s my take away. And I might up the Keppa a bit.
so thats the bad.
the good? in the 3rd simple I had the deju vu feeling and since I dont think its real dejavu (seeing a future/past event location thing) it was probably just the right electrical connection; the perfect testbed. When it started I was texting my band mate Alex, so I texted “I’m having deja vu about texting you that I am having Deja vu. Lets call it the deja vu feedback loop”
that was fun for my silly nature.
thanks again guys, you all rock!
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Comment by Bill — June 20, 2021 @ 10:15 PM
First of all, I can’t keep up with the name changes so if I’m using old terms, bear with me.
I always had an aura. I would start getting scared for no reason and that would warn me that I needed to work on it. I would start singing or talking to myself to try to keep the aura from going anywhere else. I felt the brain couldn’t go blank on me if I’m using it and about 90% of the time, I didn’t black out. The other 10% of the time I had either a simple partial or complex partial.
I remember two spots in the walls of my old house where my head won the battle and I had to patch the hole.
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Comment by Ed Lugge — June 15, 2021 @ 4:53 PM
That would scare my pants off….. holy crap!….. I have an aura that feels like De Ja Vu…… the neurologist says its because Im percieving my environment through my memory centers before my processing centers……… I just get the feeling and then its over 😦
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Comment by Aaron Holmes — June 16, 2021 @ 5:41 AM
that is a great answer worth reseaeching. That never occured to me, I got a mission, thanks!
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Comment by Bill — June 20, 2021 @ 10:20 PM
Déjà Vu or Prescience? https://epilepsytalk.com/2020/04/25/deja-vu-or-prescience/
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Comment by Phylis Feiner Johnson — June 21, 2021 @ 9:04 AM
But hey, you won the battle 90% of the time. And let’s face it Ed, you’re a WINNER!
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Comment by Phylis Feiner Johnson — June 15, 2021 @ 4:56 PM
SINCE THEY HAVE CHANGED THE NAMES ”of what they are OVER THE PAST 30 YEARS, it’s hard for me to understand just what they are, 1st I remember being told I had petit mals, which always can be a GRAND MAL later of they persist. Well before the name changes that happened 3 times to me in over 30 years, In the past 30 years that has happened more than 100 times which I know some people have more than 100 GRAND MALS in a day, so I shouldn’t complain or worry I guess. In 2 weeks I’ll be 61, and as I get older & have more of these seizures, I am always wondering if my seizure condition is changing with every FOCAL to GENERALIZED or TONIC CLONIC , or whatever else the names they are called, when I was told 8 years ago I had status epileptus, which I never have had 1 right after another in my life as far as GRAND MALS happening, but years ago as a kid & teenager It was nothing to have 5 to 10 petit mals a day when the months had NO R’s in the spellings of those HOT & HUMID days in those months of MAY, JUNE, JULY & AUGUST, and when half of SeptembeR was over, then I started having LESS & FEWER SEIZURES when OctobeR all through ApRil days were around, & then MAY started with more seizures, That happened that way for about 23 years, and everything was at a stand still until I went off the drugs in 1991 when my 3rd GRAND MAL happened, then my 4th one happened in 1994, 5th one happened in 1996, then I quit counting when I started having more than 1 GRAND MAL a year after 1998. So far 3 this year, and yet in the past 3 years, I believe my SLEEP PATTERN has more than a little bit as to WHY I have the seizures as I do, but the doctor I have been seeing now since 2006 says NO, that my sleep pattern isn’t of any effect as to why seizures happen. YET after I have a seizure for at least 3 weeks, my sleep pattern is more sound & I sleep better. Then when the 4th week has come after that seizure, the sleep pattern gets less hours per night for a while, before another seizure may occur.
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Comment by James D — June 15, 2021 @ 10:06 PM
James…. the first thing my mind/body wants me to do is go to bed…. even if Im covered in $hit….. I know you know, it sucks :(……. it makes me not want to have a relationship, it makes me not want anyone near me…… all of mine are grand mals….. I go “out” for days….. I mean, even if Im “coherant”….. Im still “weird”….. dont remember things…..etc…… thanks for sharing….. I get it for sure! We all do!
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Comment by Aaron Holmes — June 16, 2021 @ 5:25 AM
Wow!!….. I think whats amazing is that everyones “episodes” are so different…… you know I love you Phylis…… and at the same time, is there even a “kind”?….. there are so many different “kinds”…… are we all trying to fit into those kinds?…. or do we have our own?……. Ive had 1 therapist say, “wow that sounds alot like Disassociative Identity Dissorder… when I explained what happened during a specific seizure….. then (literally) 20 mins later I went into session with the “next” therapist and she was like, “hahaha, I dont think you have DID!”….. these were 2 therapists working together in the same facility……
I studied magick and spirituality for 10 years before all this started happening to me…… and she wanted me to understand that I was preparing for all of this….. or did I create it?……
I think the hardest part is about trying to incorporate it into my life…… one of the greatest things Ive learned about being a video gamer….. is that due to RNG…. “random number generators”…… (that which dictates everything we as gamers do)…….. we play with what we have…. not hope to play with what we wish we had!!…… and that has literally, been one of the greatest lessons Ive learned from playing “video games”…
Just sharing…. LOL….. sorry, guess I got kinda fun 😛
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Comment by Aaron Holmes — June 16, 2021 @ 5:14 AM
Great stuff Aaron. I’m not really interested in leaving the loop either… the big wheel turning lowered a lot of barriers for me.
so… prepared for or created… humm.. yes maybe.
But also hearing about everyone elses experiences has me feeling a little guilty of callousness. Clearly I have one of the easier seats… If anyone ever needs a ear, I have it to lend.
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Comment by Bill — June 20, 2021 @ 10:52 PM
“We play with what we have…not hope to play with what we wish we had!!”
Aaron, those are some of the wisest words I’ve ever heard.
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Comment by Phylis Feiner Johnson — June 16, 2021 @ 9:17 AM
I was told I get sensory seizures. They feel like living nightmares to me. They feel worse than the worst acid trip. For me, they can be as short and quick as smelling burning wires, burning bread or hearing what sounds like my husband calling out for me or my children crying out for me. Sometimes they last much longer and things will have rainbow auras around them. Patterns, lines and things move or distort to a point of making vision vertigo inducing. Size and distance change and I will seem to shrink or everything around me will shrink or be far away. Sometimes it feels like something is crawling and biting me or it feels like I am urinating myself when nothing of the sort is going on. This is all different than what happens to me before and during a migraine headache. During a migraine it feels like my senses are so sensitive that everything is painful (painfully loud, painfully bright, painfully itchy, etc.). Before, after, or during a seizure I feel like my senses are going nuts and I can’t trust what I am hearing, seeing, smelling or feeling. Sometimes there is pain. Excruciating pain. Sometimes it feels like one side of my body is having pain like “labor contractions” to the point of not being able to move, breathe, think or cry out. This is usually when speaking becomes a huge task. At this point I slur my words and what is grammar? I speak “funny,” repeat things and stutter. I also forget things and speak in a kind of code. My husband and children can decode stuff but my doctors and others can’t as they don’t know me well enough that when I say ” think ow, hmm puke, aya me (ayudame: help.me in Spanish) p!” roughly means it hurts to think and I’ll vomit if I speak so help me please. I also forget things and will answer a question I was asked a while ago when I’m being asked something else. No matter the type of experience or how long, I always feel very emotionally vulnerable afterwards and my whole body is sore but the back of my head and my back feel like someone took a baseball bat and just practiced for a piñata party on me. My doctors also believe I suffer from pnes. I haven’t seen a specialist for that yet but my neurologist, epileptologist, and therapist all agree given my history with multiple traumas that not all my “events” are epileptic. I do not know when I am having an epileptic event or a psychiatric issue. All I know is that I hate seizures, they terrify me, and I wish there was more to help people (from better diagnostic tools, to better medicines, and more education about seizures for the general public, but more importantly for every field of medicine and health care — apparently my seizures do not look like seizures and I appear to act drunk/under the influence, confused, aggressive, etc. I had nurses in an ER once treating me as under the influence until the neurologist that diagnosed me with seizures saw me and began treating me. That was very scary, frustrating and degrading). Sometimes I hate the doctors, nurses, EMTs, and hospitals more than the damn seizures and if it wasn’t for the damn seizures I wouldn’t need all those folks and all the hospitals – yet if it wasn’t for sick individuals like me…
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Comment by Stephanie Bernstein — June 16, 2021 @ 11:07 AM
Stephanie, your experiences sound like an unfathomable nightmare. The seizures, the pain, the abuse.
As for pnes, usually a therapist steps in….
Here’s an interesting article I found in ScienceDaily about a clinical trial. https://www.sciencedaily.com/releases/2014/07/140702170034.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+%28Epilepsy+Research+News+–+ScienceDaily%29
They used a combination of Zoloft (Sertaline) and cognitive behavioral therapy informed psychotherapy (CBT-ip) to help reduce pnes seizures (including depression and anxiety).
There’s a lot (of positive things) to be said about CBT.
These links may be of help, if you feel this is something relevant to you…
https://beckinstitute.org/get-informed/what-is-cognitive-therapy/
https://www.medicalnewstoday.com/articles/296579
https://www.apa.org/ptsd-guideline/treatments/cognitive-behavioral-therapy
I hope this helps in some small way…
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Comment by Phylis Feiner Johnson — June 16, 2021 @ 11:40 AM
“Size and distance change and I will seem to shrink or everything around me will shrink or be far away.”
Wow…. . I used to have this happen to me all the time when I was a kid….. Id be watching TV and the room would start to go away from me….. Ive heard it referenced to “AIWS”…. ie Alice in Wonderland Syndrome……
Im sooooo happy that you have folks around you that love and take care of you! These experiences seem incredibly difficult!
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Comment by Aaron Holmes — June 16, 2021 @ 2:13 PM
You got it Aaron. It is called Alice in Wonderland Syndrome (Micropsia)
Children with Alice in Wonderland Syndrome (or AIWS) feel that their body is changing, because of migraines and headaches. They don’t just see themselves changing in size, though, but they also see other people, animals and objects look larger or smaller than they actually are. They can also feel that their hearing and sense of touch have changed. Like what happens to Alice in the beginning of the book, some people with epilepsy who also have AIWS can feel like they are falling down a hole…
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Comment by Phylis Feiner Johnson — June 16, 2021 @ 5:37 PM
Stephanie,,, Imagine being handcuffed to ambulance & hospital bed for hours for having grand mal seizures, because the EMT & Nurses considered I was acting like “drunk/under influence, aggressive, confused,,,” until my friend came to my rescue & accused the hospital nurses & ER doctors of medical malpractice?
Therefore, I understand your deep seated resentment to the hospital industry more than to your seizures, just like I do.
Lately, I discovered A&E videos posted on YouTube, where I learned how the Ambulance & EMT crew encounter/respond to emergency calls to people suffering from seizures in their homes, restaurants & public streets.
Watching the videos of the disoriented victims of Epilepsy in “pustical conditions” made me to realize that there’s a lot room for misdiagnosing the patient in the first encounter, without knowing the full history of patient.
Therefore having a bracelet around your neck or hand carrying medical card describing your medical conditions may help eliminate any unwanted hardships between the EMT & the seizure victims.
Check for “Seizure Rescue” on YouTube to see the unpleasant encounter of disoriented seizure victims & EMT crew to better understand why some of us are being unnecessarily misdiagnosed & mistreated by the rescue crew & hospital nurses.
I hope you realize that the aftermath of our seizures are NOT easily understood by the people around us nor by the rescue crew.
Gerrie
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Comment by Gerrie — June 16, 2021 @ 3:25 PM
Thanks for mentioning the alert jewelry, Gerrie.
(Jewelry is always a better bet than carrying a card, because technically, the EMTs are not supposed to “disturb your body” or go into your purse.)
For those that don’t have anything, consider the Medical Alert Foundation. http://www.medicalert.org/
Medics recognize it and you can change your information, when needed. (Like if your meds change.) They also know whom to contact, especially if you end up in the hospital. The price for membership is just $30 a year. And if you have an “Advance Directive,” they will include it with your information — FREE.
Another life-saving option is the Medical Text ID https://www.hopepaige.com/ — a powerful Medical ID in case of emergency. It assigns a unique personal identification number (PIN) that is displayed on a bracelet, neck tag, key chain, etc. The PIN is linked to an online account that you can set up on your secure iB Web site. Your online account has information about who you are, what medications and allergies you have and up to ten emergency contacts.
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Comment by Phylis Feiner Johnson — June 16, 2021 @ 5:55 PM
hi, Great imfo as always, Interesting in just a few people how wide it varies. and in a rather short time how much the imfo. on types of szs. has changed & is why I have always found comments in a question like this can be more valuable than a c/p diagnoses even from certain medical doctors. I was diagnosed but went untreated for over 16 yrs.I don’t regret that but I do regret not having any knowledge about sz. disorders in general 😦
Talking with others online reversed this btw . I can check yes for everything that I just read. Including the AIWS which is a term I had not seen in a long time and something I have never discussed with a neurologist but have “felt” since I was a child. those feelings is why I now say I have epilepsy my whole life but not diagnosed until I had t.c. szs. 27 yrs ago. my “label” is generalized sz. disorder ,but have just been treated for t.c. type szs. I was also mislabeled many many times as being drunk or on drugs before I got sober,drug free 26 yrs ago
In ways I feel blessed and somehow have never feared this ? I do constantly have to find new ways to find balance . thanks again great imfo. “Peace Takes Practice” Rick
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Comment by WichitaRick — June 30, 2021 @ 3:32 AM
It must have been frustrating — and scary — not knowing what was going on with you.
And then being accused of being drunk or on drugs. You certainly haven’t had an easy time of it Rick.
But I admire your positive attitude and bravery. I don’t know how I would have done in the face of all that you’ve been through.
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Comment by Phylis Feiner Johnson — June 30, 2021 @ 8:15 AM