Epilepsy Talk

A Menu of Epilepsy Auras | April 14, 2020

One of the good thing about auras, is that if you’re aware of them, they’re effective (if unpleasant) warning signals of an oncoming seizure.

I didn’t learn to identify mine (mouth filling up with saliva and disgusting metallic taste) until I was well into my 20’s.

Then I added dark spots to my repertoire and I was having all three when I met my husband!

The good news is that once I recognized them, I would instinctively know to hit the floor (before the floor hit me) or find a safe place to weather out the storm.

The fact is: There are probably as many or more types of auras as there are types of epilepsy…

Auras can last from several seconds to more than an hour, and can sometimes end with feelings of extreme tiredness, weakness, heart palpitation, sweating and warmth throughout one’s body.

And some people can experience auras with no seizure(s).

Each and every person’s aura patterns are different.  They vary significantly between individuals.

Yours may happen right before a seizure or several minutes to hours earlier.

Common warning signs right before seizures are changes in bodily sensations, changes in your ability to interact with things happening outside you, and changes in how familiar the outside world seems to you.

Other warning signs that may happen hours before a seizure are depression, irritability, sleep disruption, nausea, and headache.

People with complex partial seizures are the most likely to experience warning signs.

Approximately 55% to 65% of people with these seizures experience some type of aura.

It’s unclear whether having seizures that arise from one particular side of the brain makes you more likely to have auras than people whose seizures arise on the other side.

For lots of people, auras occur in an ordered progression.

First you may feel fear…then déjà vu (the feeling that you’ve been there before)…then a strange taste in your mouth.

The part of your brain where your seizures originate (your seizure focal point) also may be linked to a specific type of aura because an aura represents the beginning of a seizure.

Since different parts of the brain are responsible for different things, the warning signs you experience will be related to the functions of the section of brain where the seizure is about to occur.

People whose seizures begin in the temporal lobe tend to have certain types of auras and those whose seizures begin somewhere else often will have different types.

Here are some types of auras that can happen alone or in combinations…

Visual changes

Kaleidoscope effects

Visual hallucinations

Shimmering sensations

Vibrating visual field

Distortions in size, shape or distance of objects

Bright lights or blobs

Zigzag lines

Tunnel vision

Blind or dark spots in the field of vision

Curtain-like effect over one eye

Blindness in one eye

Motionless stare

Dilated pupils

Auditory changes

Hallucinations — hearing voices or sounds that don’t exist

Being unable to understand spoken words

Muffled sounds

Buzzing noises

Loud or whispered volume

Temporary deafness

Physical changes

Weakness, unsteadiness

Changes in heart rate

Sweating

Nausea

Vertigo

Saliva collecting in mouth

Lip smacking

Chewing

Swallowing

Strange smells

Problems speaking

Repetitive movements

Limbs jerking involuntarily

Numbness or tingling on one side of face or body

Feeling of being separated from your body

Needing to urinate

Psychological changes

Confusion

Anxiety or fear

Physical detachment

Déjà vu or jamais vu, a sense of familiarity or unfamiliarity

Knowing that you have auras gives your doctor a better idea what type of epilepsy you might have.

He can help choose meds that work better for those specific seizures.

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Resources:

Steven C. Schachter, M.D.

https://www.epilepsysociety.org.uk/epilepsy-auras-0?gclid=EAIaIQobChMIzNeaxojo6AIVmojICh1LYwUmEAAYASAAEgLqmPD_BwE

https://www.uofmhealth.org/health-library/tm6354

https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure

http://www.webmd.com/epilepsy/tc/aura-and-seizures-topic-overview

https://www.verywell.com/what-is-an-aura-1204511

 

 


29 Comments »

  1. Thanks for the list, and thanks to Dr. Schachter. Many old friends, here. The auras changed significantly as I aged.

    There is a third vu, presque vu, where you feel on the brink of a marvelous revelation. An upper followed by a downer, when the heavens don’t open and no epiphany is forthcoming.

    The technical term for one of the visuals – a spot the blocks your vision – is scotoma, which comes with or without “fortifications,” a border of sparkling lights. The term itself cracks me up. Many of my scotomas are so beautiful that I sit down to watch the colors and shapes evolve. Also, since they’re blocking my vision, sitting is preferable to walking.

    Many of these auras also precede migraines, which are sort of seizure cousins, if I remember.

    Liked by 2 people

    Comment by HoDo — April 14, 2020 @ 10:58 AM

  2. I don’t know how you explain it, but i have a strange feeling in my head like a fullness of air pressure, as it my head is a balloon with pressure build up then it will at times ease up some before the GRAND MAL actions start up. It ca happen like that alone or with nervousness feeling in my stomach that can happen, 1st before the head starts feeling as it does.All of this has happened more so since my concussion back in 2012, when I was 10 days away from being seizure free for 2 years. All of this is why I have been hoping & praying for the RAPTURE to happen & if this coronavirus is another sign of the times, then lets see all the others happen too, that have not happened yet. Those will happen just like the rapture is going to happen.
    Just like seizures & auras, you know not when one is going to happen so I want the RAPTURE before my next seizure.

    Liked by 1 person

    Comment by James D — April 14, 2020 @ 11:20 AM

  3. For me, it was getting scared for no reason. Either nothing happened after this or it got stronger.

    Liked by 2 people

    Comment by Ed Lugge — April 14, 2020 @ 11:37 AM

    • Some people have (rightfully) said, “The fear is much worse than the seizure.”

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 14, 2020 @ 12:00 PM

      • Exactly, I noticed that everytime I feel my aura is coming on, my heart starts racing & ended feeling many of the symptoms you described on this list.
        But mostly I get more alarmed, concerned & scared about having another of my grand mal seizures, before the auras decipate like a mist.
        Fortunately, my auras does NOT last very long more than just few seconds or minutes.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — April 14, 2020 @ 2:32 PM

      • Well, I guess that’s the bad news and the good news.

        Physical alarm. Gone but not forgotten. 😦

        Weaker people might have a heart attack!

        Like

        Comment by Phylis Feiner Johnson — April 14, 2020 @ 2:39 PM

  4. One of the major benefits of this venue is that in sharing information, we can not only reassure ourselves, but we gain the language to talk with our medical providers.

    The first scotoma / aura I had lasted several days. Totally panicked because I was nearly blind. The ophthalmologist did all kinds of tests but found nothing amiss. I think it was in Oliver Sack’s book on hallucinations that the term ‘scotoma’ came up. The conversations with eye doctors then took a different turn, because what “seeing” meant to them was quite different from what “seeing” means to me.

    The last time I went in, the doctor summoned a much younger colleague and asked me to describe to her some of what I experienced “seeing.” I really appreciated the time they both took. It is web sites like this one that make such an exchange possible.

    And, of course, not all doctors are willing to learn from their patients.

    Liked by 2 people

    Comment by HoDo — April 14, 2020 @ 1:42 PM

    • Well, if the doctors won’t talk to us or listen, sometimes between ourselves, we can figure it out.

      After all, theoretically, this is supposed to be a website that shares learning and information. Along with support of one another.

      I think you’re the epitome of that and I thank you, HoDo.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 14, 2020 @ 1:58 PM

      • It IS a web site that shares information and provides support. No theoretically or supposed to be. All over the country and world, light bulbs go on, “Oh, is THAT what that was!” Exhales. Whew!

        Liked by 2 people

        Comment by HoDo — April 14, 2020 @ 2:23 PM

      • THANKS!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 14, 2020 @ 2:34 PM

  5. Very helpful information

    Liked by 2 people

    Comment by Lisà Way — April 15, 2020 @ 10:36 AM

  6. This may sound crazy but it does evolve over time!! And of course injury! Sometimes it’s a smell, taste, feeling in a certain part of the body or stomach or body parts, or even a touch or taste and thought. Yes it does change after concussions, but it’s remembering everything learnt prior that also helps in the here and now. Sometimes even our animals know before us (due to their smell sensations and our bodies scents). Or a ringing in the ear, numbness in a body part or colours (sequencing of colours) or stomachaches and fear or worry.Each one has a reason and a job even our eyes. I haven’t had an actual “grandmal seizure” since October 2018. I knew at some point it was going to happen!! I just didn’t know when. Mostly because of the situation and what happened prior (I lost my best childhood friend). It was in the middle of the night and I didn’t even know I had it until I went to stand up. I almost fell. But it’s changed over time and now I find it’s primarily or could happen when my neck hurts so bad it hurts my head or my stomach hurts so bad I can’t digest food (so I forget to eat or don’t want to). Other times it’s a smell or even a fear or worry for a friend or loved one and family member. The funny thing is “NOT ALL NEUROLOGISTS OR EPITOLOGISTS OR EVEN FAMILY DOCTORS” want to hear anything we “as epileptics” can tell or teach even them. There’s no “I” in team and that’s what we need to be with the medical professionals. I have been asked “if I was clairvoyant?” in the past because I learnt to listen to myself and those (lol OTHER HUMAN BEINGS LIKE ME “ALL OF YOU”) who speak from experience. I thank all of you and Phylis for that and even empowering me when nobody else (on earth) could 😊🦅😇💕. In our own ways we teach one another and help EACHOTHER become more aware of different things and means of handling different scenarios and even ourselves. Many different things have changed over time (with me), but it’s always learning and evolving (I.e. I can’t be around thunder and lightening storms because of the “electricity and energy from the lightening), lol yet I’m still ready to things I know are a challenge. We just CAN’T STOP!! That’s all. Please everyone be happy, safe and well 😊🙏🏼🦅😇💕

    Liked by 1 person

    Comment by Kathy S.B — April 18, 2020 @ 12:32 AM

    • Sometimes the concussions weigh on my memory. It depends upon how hard they are.

      Once I fell backwards, hitting my head and I was really out of it for five days.

      I had zoom eyeballs and couldn’t focus. I couldn’t even go on the computer. (You can realize how frustrating that was.)

      After five days in bed, I was back to the land of the living. My short term memory was shot. But just temporally.

      Loosing your best childhood friend is enough to send you into a tizzy. No concussions needed.

      But your present auras sound pretty miserable.

      Having doctors ignore you is even worse.

      That’s why we’re here. To share, listen, inform and console one another.

      Hopefully that helps you.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 18, 2020 @ 10:40 AM

      • Goodmorning Phylis 😊. I learned to watch T.V. By ear (lol I know that sounds crazy 😝), but I would turn the television on in my living room and listen from my dark bedroom and still bed with little noise!! It took months to start getting better. Between me, my pharmacist and family doctor we managed to figure out it came down to the sodium, sugar and blood pressure levels (mine were too low) and I couldn’t eat!! After years I finally (kind of like auras prior to a seizure) when I had to drink and make myself eat and keep an eye on my liquid intake. I drink Powerade if needed. Yes it’s frustrating but I know I have to keep moving and doing things to keep my body going! I did realize (over time) the concussions over my life time have had a negative impact on my body, but I just learned to listen to my body over time. Thank you for all being here and please know you and all of your group are greatly appreciated 🙏🏼🦅😇💕.

        Liked by 1 person

        Comment by Kathy S.B — April 18, 2020 @ 10:54 AM

      • I think that listening to your body is the best thing that you can do.

        Nobody knows you body better than you.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 18, 2020 @ 11:22 AM

      • Yes I completely agree with you.

        Liked by 1 person

        Comment by Kathy S.B — April 18, 2020 @ 11:30 AM

    • Wow! Thank you for this post. I thought you were talking about me at first due to i have the same feelings. I have not had anu seizures with these feelings but the last time i had one i got a call the next day that my dad was in the hospital over 300 miles away and might not make it. He was in the ICU with septsis and kidney failure. He pulled through but i just thought it was a coincidence. What scares me is my son is 25 today and since he was born I have had dreams and an over whelming fear of him drowning and me not being able to save him. Now i also have a 29 yr old dgt and never had that fear at all with her at any time nor any dreams about fearing for her. I probably sound crazy to you right now. That’s what everyone thinks when i tell them this. They have always thought Im over reacting as a mother. If that’s so then why do i not do that with both kids? I’m not saying i know the future or anything crazy like that but just thought i would share due to you said someone asked you if you were clairvoyant at one time. I promise I’m not crazy.

      Liked by 2 people

      Comment by Jayma Dulin — April 19, 2020 @ 4:24 PM

      • Well Jayma, you might be prescient.

        Those who experience prescience, feel they have the ability to see into the future in some way.

        A study concluded that prescience is an aura of temporal lobe epilepsy.

        The study is written up in PubMed and basically says: all of the patients tested had similar experiences.

        They described the phenomenon as “knowing” what was going to happen in the immediate future.

        The experience was distinct from déjà vu and other psychic experiences.

        And all of the patients “probably” had temporal lobe epilepsy.

        Only one other description of prescience as an ictal feature was found.

        The conclusion was: Prescience can occur as an ictal feature of temporal lobe epilepsy and represents a previously under-reported psychic phenomenon.

        Does any of this ring a bell?

        Liked by 2 people

        Comment by Phylis Feiner Johnson — April 19, 2020 @ 4:44 PM

      • Yes it does. However (being from the culture to which I’m from and being raised by my great grandparents and great aunties and great uncles and grandma) I was taught kind of differently to help me learn my strengths and how to listen to myself and help myself when needed. My children, husband and those I’m closest to (or to whom I’ve disclosed myself SINCERELY TOO) swear “I WATCH THEM LIKE A HAWK!!”. I do have “right temporal lobe epilepsy” , but because I was raised NOT TO RECORD ANYTHING (in anyway, shape or form) I only let those CLOSEST TO ME KNOW ANYTHING!!!!! However I will admit even though my husband, children and certain family members (KIND OF KNOW A LITTLE) my only response is just to be plain old honest with me and I will with them as well. Sometimes painfully honest!! But I was taught “honesty’s the best policy”. Besides that I have to be content with myself knowing I am honest as best as could be. Lol but I do admit when asked I don’t always tell IMMEDIATELY!! Or until I’m given a reason why I’m even asked in the first place. I do find though I had to teach myself NOT TO CHASE ANYONE AND WAIT UNTIL THEY COME TO ME!! Even though sometimes not chasing them makes things hard of me!! If it’s any consolation I TRY REALLY HARD TO keep my VERY CLOSE CIRCLE OF LOVE SMALL!!!!!!! Lol that way I know who to call and check on when I feel that way. Or I’ve been told it can also be the other way around as well!!!!!!! In that case the same thing applies (with me) as well. That way we all at least feel safe 💗. I just don’t tell anyone unless I’m asked that’s all. Lol 😂 because even I feel like MAYBE I AM CRAZY TOO!! Thank you SO MUCH FOR YOUR HONESTY!! And YES!! It do GREATLY APPRECIATE you. Please be well, safe and take care of yourself and loved ones!! 😊🙏🏼🦅😇💕

        Liked by 1 person

        Comment by Kathy S.B — April 19, 2020 @ 5:17 PM

      • Yes. I even feel the emotion associated with them. The last time I actually started hysterically crying and did not know why I had such a feeling of dread. I thought maybe I was about to have a seizure but i didn’t. My husband came home and thought something had happened to me. When i told him he just thought i was crazy.

        Liked by 2 people

        Comment by jay00053 — April 19, 2020 @ 5:23 PM

      • I imagine it is very scary! A good reason to cry.

        No one relishes being hit with a seizure. No matter how big or small.

        It’s like a dark cloud hanging over your head. And you’re just waiting for the thunder and lightening to start.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 19, 2020 @ 5:51 PM

      • I have temporal lobe, and when I was younger, prescience was a very real & frightening (and sometimes faintly amusing) experience; but, like the auras, it evolved with age. Now caller ID has to tell me who’s on the phone.

        Liked by 2 people

        Comment by HoDo — April 19, 2020 @ 6:11 PM

      • I found that as I got older and as my seizures started to lessen, so did my prescience.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 19, 2020 @ 6:46 PM

      • Yes, the prescience lessened, but the worry about it remained. There was a time when the idea of making a living as a fortune teller seemed quite do-able. Not, of course, very practical.

        Liked by 2 people

        Comment by HoDo — April 19, 2020 @ 7:05 PM

      • Lol Jayma I actually nursed my son when he was born (he was the only child I nursed) and as far as my daughters, husband and my close family and friends would say “him and I are inseparable”!!!!! Yet he’s in Northern Alberta (on an oil rig) and I’m in Southern Alberta in a tiny town (19 hours away from him)!! YES HIM AND I ARE VERY VERY CLOSE! But I can still feel or even hear or feel when it’s one of my 2 daughters, husband, best friend or close family. The problem is I just can’t quite tell which one!!!!! So I ended up kind of doing a bit or a “ROLL CALL OR TEXT” just to see how everyone is doing and worked my way down the list from there. OR THEY ALL CALL OR TEXT ME!!!!! Lol One time my doctor asked me “how I know I’m going to have a seizure?”. I looked at him (laughed) and finally told him “my bleep cheeks tingle and I get a stomachache and scared”!! My best friend said “she wakes up or can’t stop thinking about me”!! Same with my children and aunties. So they (like me) do a “ROLL CALL OR TEXT” just to check on me or I them. Of course over time little things change here and there, but a lot of times it’s a “GUT FEELING, SMELL, TASTE, TINGLY OR MY HEART BEAT (heat). I know after getting REALLY SICK LAST MONTH it somehow (I don’t quite have words to describe it) shifted too!! The FEAR!! Maybe of getting THAT AWFULLY SICK AGAIN!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — April 19, 2020 @ 10:03 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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