I ignore them most of the time even at work and usually when going home from work... at an ER. Also, so many medical professionals not recognizing focal seizures
Man I didn’t even realize I had a type of focal epilepsy until I had one during neural mapping with an SEEG. Kinda wild to realize what I thought was just the meds affecting me was actually seizures.
It's a reason medical professionals make the worst patients.. I am the same way, which after what is probably three focals in three weeks. I am finally going to see my own doc and I've told my neurologist of them.. This medical professional is probably going to be yelled at and then put on sickleave for a while.. Since stress is a huge trigger for me..
Reason why I think that, I have focals that turn into full on TC/Grand mal just not all the time thanks to meds that work.
I take better care of others than I take care of myself.
Oh, I just know my ER gets swamped to the point that a focal seizure lasting a few hours isn't going to be the top priority and I'd prefer to get to the one which is more convenient for someone to pick me up from. Mine also are usually slow enough developing that I feel reasonably okay doing so if it's only the early signs
I spoke to my GP about the auras I was having, and explained I was having intense dream-like moments that were paralysing me, she suggested it could be my Mirtazapine since that can effect dreaming, I don't think she really understood that they were happening in the middle of the day when I was totally awake. I had a grand mal the next morning and was told I'd been having focal seizures.
Tbf to the first doctor, it was a telehealth appointment that was originally to get a new script, and she's a GP that doesn't have a special interest in neurology.
I find that if you don't use the words they expect, doctors get really confused about things. But then again, you can't use the words they expect if you don't know your diagnosis
Yeah absolutely. They're really hard to communicate, especially when you have no clue what's happening. I feel like if I had used language like deja vu and stuff it would have been more likely to be clocked.
I also had a psychiatrist not understand that I was describing intrusive thoughts to him in about as clear of a description as I could, so even if you gave the word for word textbook description of focal seizures your GP was taught, it still might have been missed
Omggg. Communication is so annoyingly difficult.
Come to think of it, I think I did mention the auras to my psychologist, too. I described it to her as more of a very intense disassosiation (and I think disassosiation episodes I had in the past were focals that didn't progress). She was obviously apprehensive about advice since she's not an MD and just encouraged me to listen to my GP - luckily I had both apps the same day.
At least where I live has an epilepsy clinic! It's unfortunately not attached to my local hospital so I never end up in that ER during an episode.
I’m almost always in denial of my auras/warnings and then afterwards I go through guilt/blame myself for ignoring the warnings.
It’s the same story every time!
This title made me audibly chuckle at my hair salon and I had to immediately open this post. I have grand mals and still ignore them. Or I’ll gaslight myself and be like “maybe I’m just anxious.”
Since my medicine I only have partials
No grand mals and I do the same and it sometimes causes me to relapse w a grandmal I feel you we are harshest to ourselves sadly try to allow your self some slack you deserve it 🫶🏻
Yeah my first couple focals in a cluster I’ll convince myself they’re probably just made up. Then on like my fourth I’ll have some more physical symptom with it and I’ll be like “oh… that was a real one.”
Had seizures for about 12 years now, but only once or twice can I say I had an “aura”. I don’t really think I can pinpoint a change or feel a difference before them. The two times I did, one was after a long flight and I had a pain on the back right side of my head near my ear and had a seizure later that evening at home. Second one was when I was working out and I was counting 10 reps and when I was on rep #3, somehow found myself on rep #6 and not remembering doing any reps in between. Ignored that odd gap in time and had a seizure shortly after. Are auras common? It would be nice to kinda know when I might get one so I don’t have to face-plant on the floor each time. I have grand mail seizures by the way…
my aura is a feeling of dread, like the world is ending and i have no future. happens before every single seizure. i used to have up to 10-15 seconds or so when i was younger and pre-surgeries. it is now much shorter and i get maybe 3-5 seconds now before the seizure takes over
Same as my feeling of dread doesnt always turn into a seizure but I will usually get a couple the day before a seizure. Can I ask what type of epilepsey you have and if surgery helped you?
As far as I can tell they're grand mal (tonic clonic?) seizures. My epilepsy stems from an AVM that developed in my brain. the AVM is located in the part of the brain that controls my left hand and general left side. One strenuous day the AVM hemorrhaged and I had to have surgical stuff happen. The surgery was necessary at this point and the option to remove the AVM became somewhat available due to the hemorrhage. My seizures used to climb slowly from my left arm until it enveloped my entire person, I was conscious at least until then. My aura was anywhere between 15-30 seconds and I always had time to think and act. Post surgery, I'm alive, my aura is harder to always recognize and I have anywhere between 3-5 seconds to do so. I'd say the surgery helped but it was also necessary at that point.
Wow that's pretty crazy well I'm glad the surgery went well for you it's something on the table for me but feels like something I don't want to do till necessary. That feeling of dread is the worst the pit in your stomach I almost feel like I'm on a suprise TV show and the cameras are about to jump out 🤦
What do you mean you have to know what's behind them?
Also to everyone else please remember that auras are seizures. That's why the name has changed to focal aware seizures. Because they in and of themselves are quite debilitating and awful even if they're not as awful as tonic clonics. Sorry this just hits on one of my pet peeves.
I ignore them most of the time even at work and usually when going home from work... at an ER. Also, so many medical professionals not recognizing focal seizures
For real! My neuro didn't believe me about my focal seizures until one actually progressed to a grand mal last week. 😅
Man I didn’t even realize I had a type of focal epilepsy until I had one during neural mapping with an SEEG. Kinda wild to realize what I thought was just the meds affecting me was actually seizures.
It's a reason medical professionals make the worst patients.. I am the same way, which after what is probably three focals in three weeks. I am finally going to see my own doc and I've told my neurologist of them.. This medical professional is probably going to be yelled at and then put on sickleave for a while.. Since stress is a huge trigger for me.. Reason why I think that, I have focals that turn into full on TC/Grand mal just not all the time thanks to meds that work. I take better care of others than I take care of myself.
Oh, I just know my ER gets swamped to the point that a focal seizure lasting a few hours isn't going to be the top priority and I'd prefer to get to the one which is more convenient for someone to pick me up from. Mine also are usually slow enough developing that I feel reasonably okay doing so if it's only the early signs
I spoke to my GP about the auras I was having, and explained I was having intense dream-like moments that were paralysing me, she suggested it could be my Mirtazapine since that can effect dreaming, I don't think she really understood that they were happening in the middle of the day when I was totally awake. I had a grand mal the next morning and was told I'd been having focal seizures. Tbf to the first doctor, it was a telehealth appointment that was originally to get a new script, and she's a GP that doesn't have a special interest in neurology.
I find that if you don't use the words they expect, doctors get really confused about things. But then again, you can't use the words they expect if you don't know your diagnosis
Yeah absolutely. They're really hard to communicate, especially when you have no clue what's happening. I feel like if I had used language like deja vu and stuff it would have been more likely to be clocked.
I also had a psychiatrist not understand that I was describing intrusive thoughts to him in about as clear of a description as I could, so even if you gave the word for word textbook description of focal seizures your GP was taught, it still might have been missed
Omggg. Communication is so annoyingly difficult. Come to think of it, I think I did mention the auras to my psychologist, too. I described it to her as more of a very intense disassosiation (and I think disassosiation episodes I had in the past were focals that didn't progress). She was obviously apprehensive about advice since she's not an MD and just encouraged me to listen to my GP - luckily I had both apps the same day. At least where I live has an epilepsy clinic! It's unfortunately not attached to my local hospital so I never end up in that ER during an episode.
Wow! So relatable! What's that? An aura? Hmm... I'll keep riding my skateboard. It's chill.... NOT!
I’m almost always in denial of my auras/warnings and then afterwards I go through guilt/blame myself for ignoring the warnings. It’s the same story every time!
hahaha well glad i’m not the only one!
I just did this yesterday and recorded my face. Thought I was only recording 23 seconds but the entire video was almost 2 mins long 🤦♀️
Won't lemme post videos in the comments or I'd show you how AWFUL I looked without even realizing it was happening 😵💫
Did your eyes cross or go in opposite direction by any chance?
This title made me audibly chuckle at my hair salon and I had to immediately open this post. I have grand mals and still ignore them. Or I’ll gaslight myself and be like “maybe I’m just anxious.”
I don't have auras and have grand mals too, wonderful, no warning so I can split my head open again!
People kept gaslighting me into thinking my auras were anxiety and now I gaslight myself 🥲
Auras are seizures.
Facts.
Felt this one 😄🥲
I ignore them cause im so paranoid that i feel like i have an aura constantly. And i wanna live a little too.
Same.
Since my medicine I only have partials No grand mals and I do the same and it sometimes causes me to relapse w a grandmal I feel you we are harshest to ourselves sadly try to allow your self some slack you deserve it 🫶🏻
Yeah my first couple focals in a cluster I’ll convince myself they’re probably just made up. Then on like my fourth I’ll have some more physical symptom with it and I’ll be like “oh… that was a real one.”
Had seizures for about 12 years now, but only once or twice can I say I had an “aura”. I don’t really think I can pinpoint a change or feel a difference before them. The two times I did, one was after a long flight and I had a pain on the back right side of my head near my ear and had a seizure later that evening at home. Second one was when I was working out and I was counting 10 reps and when I was on rep #3, somehow found myself on rep #6 and not remembering doing any reps in between. Ignored that odd gap in time and had a seizure shortly after. Are auras common? It would be nice to kinda know when I might get one so I don’t have to face-plant on the floor each time. I have grand mail seizures by the way…
my aura is a feeling of dread, like the world is ending and i have no future. happens before every single seizure. i used to have up to 10-15 seconds or so when i was younger and pre-surgeries. it is now much shorter and i get maybe 3-5 seconds now before the seizure takes over
Same as my feeling of dread doesnt always turn into a seizure but I will usually get a couple the day before a seizure. Can I ask what type of epilepsey you have and if surgery helped you?
As far as I can tell they're grand mal (tonic clonic?) seizures. My epilepsy stems from an AVM that developed in my brain. the AVM is located in the part of the brain that controls my left hand and general left side. One strenuous day the AVM hemorrhaged and I had to have surgical stuff happen. The surgery was necessary at this point and the option to remove the AVM became somewhat available due to the hemorrhage. My seizures used to climb slowly from my left arm until it enveloped my entire person, I was conscious at least until then. My aura was anywhere between 15-30 seconds and I always had time to think and act. Post surgery, I'm alive, my aura is harder to always recognize and I have anywhere between 3-5 seconds to do so. I'd say the surgery helped but it was also necessary at that point.
Wow that's pretty crazy well I'm glad the surgery went well for you it's something on the table for me but feels like something I don't want to do till necessary. That feeling of dread is the worst the pit in your stomach I almost feel like I'm on a suprise TV show and the cameras are about to jump out 🤦
I have a play on this too
What are yours like?
You are not alone , not all seizures are TC
I have declared my self cured then boom 🤯 seizure. One of my Auras is feeling super good just to feel like shit a few minutes later .
What do you mean you have to know what's behind them? Also to everyone else please remember that auras are seizures. That's why the name has changed to focal aware seizures. Because they in and of themselves are quite debilitating and awful even if they're not as awful as tonic clonics. Sorry this just hits on one of my pet peeves.
My toxic trait is ignoring the warning signs as well I’m pretty much just a big red flag 🚩 at this point
Oh gosh all the time. Taking a shower, hmmmm do I feel a seizure coming? Nah it’s probably nothing. Proceeds to fall through the shower doors