Epilepsy Talk

Auras without Seizures | January 24, 2019

Do any of these sensations sound familiar to you?

Suddenly you’re sweating, flushed, become pale or have goosebumps.

Your stomach feels queasy, like you’re going to puke.

There’s a foreboding or fear that something awful is about to happen.

You feel like a mess emotionally.

Maybe you feel an odd sensation, like a gentle breeze, buzzing or ringing sounds.

Voices that aren’t really there, a nasty taste in your mouth, weird smells, visual distortions.

You feel like you have zoom eyeballs.

Visual and spatial perceptions are off. (Sort of like “Alice in Wonderland” except this is NOT wonderful!)

There’s a distortion of time.

Maybe like an out-of-body experience.

Déjà vu. You’ve been here before.

You’re seeing people and places or experiencing events from the past. Yet, new places and things seem familiar – as if they’ve happened before.

Or maybe it’s the other way around.

You’re uncomfortable with your surroundings and things that are familiar to you.

Well-known places may suddenly seem strange.

It’s an aura, right?

BUT WHERE’S THE SEIZURE?

Are you going crazy?

Are you imagining things?

Nope.

You’re probably having a Simple Partial Seizure.

(I know, I was blown away, too!)

The aura IS the seizure.

An aura is actually a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and your ability to respond. 

You don’t lose consciousness.

In other words, something is going on in your brain.

But it isn’t spreading.

Sometimes this abnormal electrical activity tapers off.

At other times, it spreads and leads to severe seizures.

Auras can occur as a warning that a bigger seizure is about to happen.

And sometimes they can occur just by themselves.

A way to distinguish between the two is if you have no movement at all, then it’s considered an aura.

If you have actual movement, then it’s considered a Simple Partial Seizure.

One person describing her auras said “The sensation is kind of like lighting a firework that turns out to be a dud. 

The fuse starts hissing, but then instead of the firework going off (i.e. having a full blow seizure) it just fades and stops after about 10-15 seconds.”

What are YOUR experiences?

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Resources:

http://emedicine.medscape.com/article/1184384-overview

http://www.mayoclinic.com/health/temporal-lobe-seizure/DS00266/DSECTION=symptoms

http://science.jrank.org/pages/cma5hkjdoz/Epilepsy-Seizures-Diagnosing-Epilepsy.html

http://ehealthmd.com/content/what-are-different-kinds-epilepsy

http://www.healthtalk.org/young-peoples-experiences/epilepsy/experiences-different-seizures-and-auras

https://www.webmd.com/epilepsy/seizure-with-aura

 

 

 

 


64 Comments »

  1. It is so hard to describe the feelings of an aura with words but you’ve done it so well. I recently compared it to living in a dream & having the aura before an aura (if there was such a thing) for hours on end.

    Liked by 1 person

    Comment by Elizabeth Blood — January 24, 2019 @ 12:03 PM

    • Well, you know. Sometimes auras end up in full-blown seizures. And sometimes they just fizzle out.

      (Although they can last for what seems like hours.)

      I guess yours was a “fizzle”?

      Like

      Comment by Phylis Feiner Johnson — January 24, 2019 @ 12:28 PM

  2. Oh boy! At one point I was wearing a heart monitor that indicated over 100 of the flushing, increased heart rate type aruas a day. This was before I was diagnosed. My auras kept changing the weird feeling in my belly, feeling like I was going to pass out, my vision getting weird, and on. Diagnosis, medications but… Then the absence seizures came, how the heck did I get here? And I started loosing control of my bladder. Mega doses of meds, weight gain, finger nails started to detach, hair has a cool new wave. Laser brain surgery. Now I can’t stand noise or light and you’d think I have PTSD the way I jump.
    I am worried the ringing in my ear is an aura, the twitching and occasional kick. Ehh. However mega dose of epilepsy med is decreased and my finger nails reattached and i’m Losing weight.

    Liked by 1 person

    Comment by Marie — January 24, 2019 @ 12:13 PM

    • WOW! What horrible symptoms. They must have been awful!

      As for the ringing in your ears, it might be tinnitus, which I know, can be painful.

      Noise and light sensitivities are both triggers.

      However, I’m glad your med load was decreased, but sorry it had to be something as drastic as laser surgery.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 24, 2019 @ 12:37 PM

  3. I experience nausea and sudden warmth all over my body.

    Liked by 1 person

    Comment by Wendy Cundiff — January 24, 2019 @ 12:49 PM

  4. Well I have figured out on my own how to keep from getting secior.i take keppra 1000 mg three times a day and I do not have any twitching in my face or anything so hope it stays that way.

    Liked by 1 person

    Comment by michael Hartman — January 24, 2019 @ 1:07 PM

  5. SUPER! I’m glad you’ve found a solution!

    Like

    Comment by Phylis Feiner Johnson — January 24, 2019 @ 1:14 PM

  6. WOW. I’ve been having a strange sensation in right my ear for the longest time. I’ve had it checked out and there is no problem with my ear. I must mention this at my next neuro appointment. Who knows? It could be an aura. I used to think I didn’t have auras before my focal unawares, except on occasion deja vu, but I’ll be tracking this strange ear thing to see if it corresponds to my seizures.

    Liked by 1 person

    Comment by Donna Jones — January 24, 2019 @ 2:01 PM

    • Donna, technically, epilepsy and tinnitus are both caused by overly excitable nerve cells. But in some people this braking system doesn’t work, and the nerves run amok, signaling so much that the brain gets overloaded and has a seizure (epilepsy) or hears phantom ringing (tinnitus).

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 24, 2019 @ 2:40 PM

  7. Some of this sounds like my experiences with low blood sugar. I eat and it goes away. When I was on a seizure med that wasn’t working I wouldn’t feel this, I’d just go right into tonic clonics. I do still have seconds of deja vu, no other symptoms, and they leave right away. They are different than when they would be a precursor to seizures. I’ve had these all my life. I think this type of experience is how they got their non-medical name

    Liked by 1 person

    Comment by Andrea — January 24, 2019 @ 2:27 PM

    • Well, I’m glad you’re controlling your blood sugar. It can be a culprit for so many nasty things.

      As for deja vu, I know from my personal experience that I experienced it only when I used to have my seizures.

      Once my seizures were controlled (10+ years), it seems to have gone away.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — January 24, 2019 @ 2:44 PM

  8. Wow so similar! There’s a foreboding fear that something awful is about to happen.

    Liked by 1 person

    Comment by paulw12e — January 24, 2019 @ 3:13 PM

  9. I usually get them in the mornings upon awakening, but I can get during the daytime too. I get the metallic smell and an out-of-body detachment from my head feeling. They usually don’t last very long and I try and get to someplace to sit or lay quiet if I can. Sometimes I will feel out of sorts the whole day. I can get confused and lost, and say or do things I would never normally do and can’t seem to control. Would you consider those Simple Partial Seizures?

    Liked by 1 person

    Comment by Regina Lovelace — January 24, 2019 @ 5:20 PM

  10. Yes, I would.

    An aura is actually a simple partial seizure that either morphs into a full seizure, in time. Or, sometimes, it just fizzles.

    For me, the metallic taste would signify an on-coming seizure, but no two people are alike.

    Like

    Comment by Phylis Feiner Johnson — January 24, 2019 @ 5:50 PM

  11. Reblogged this on catsissie.

    Like

    Comment by catsissie — January 24, 2019 @ 6:11 PM

  12. This feeling did happen to me from when I was born until I had a operation for epilepsy jan 2017.iwent from1966until 2003 without a real attack but I always had purées every day.

    Like

    Comment by Lance minnis — January 24, 2019 @ 6:39 PM

  13. Purees?

    Like

    Comment by Phylis Feiner Johnson — January 24, 2019 @ 6:42 PM

  14. Ohhh Auras,,, In many cases, I can almost predict the next forthcoming imminent grandmal seizure from the frequency of every occasional disorientation, confusion, stomach & nostril’s sensetional feelings, looming around for few days before the “main event”, another grandmal seizure.
    And then, going through laser test for eyeglasses in Optometrist’s office, feeling the whole world is turning upside down at the speed of a light in the middle of the eye exam, I was fortunate enough to have few seconds to utter a few words,,,”Oh no, I’m going to have a seizure”, warning the Optometrist & end up in a hospital emergency room.
    Thanks to the story recounted to me by my Optometrist few days later, I learned the hard way that sharp bright lights are additional cause to my grand mal seizures, triggering & expediting the auras of my seizures faster than ordinary day.
    Ever since, I take precautions & avoid bright lights & prevent another seizure from striking again.
    In the end, I may end up wearing dark glasses to avoid the bright lights that are triggering my auras & seizures.

    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — January 24, 2019 @ 11:32 PM

    • Bright lights are definitely a trigger. And a form of reflex photosensitive epilepsy.

      If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure.

      The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.

      And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.

      Like

      Comment by Phylis Feiner Johnson — January 25, 2019 @ 9:26 AM

      • My son’s auras were triggered by bright daylight. He works as a mechanic in a dark garage bay, and as soon as he’d open up his garage door to take a car out, he’d have an aura.

        Liked by 1 person

        Comment by Theresa — January 25, 2019 @ 10:00 AM

  15. My son has complex partial seizures that he can walk during. He told me that he feels like something is after him and he needs to get away from it. Which this cause a whole bunch of other problems. Like he will leave the house trying to get away from this, he will push us if we try to stop him before he gets to the convulsing part and some time he will randomly throw stuff as he is going into the seizure. Would there be any way possible to help the brain to relax during this time during an Aura? Is there anything that would help like maybe listening to relaxing music or something? We just have to stay out of his way until he drops in convulsions.

    Liked by 1 person

    Comment by Barbara — January 25, 2019 @ 12:04 AM

    • Is your son on Keppra? Because it sounds like classic Keppra rage.

      I think this aggressive behavior needs to be addressed by re-evaluating his meds with his neurologist.

      And perhaps, even therapy.

      An anxiety med may help, but I’m no doc.

      However, I do know they help me.

      Like

      Comment by Phylis Feiner Johnson — January 25, 2019 @ 9:16 AM

      • We took him off all meds. as nothing helped but made more side affects. On 12 pills a day he was still having a lot of seizures. He tried all kinds of meds. but I would not agree to kreppin as I heard of the rage with it. One time on transport they gave it to him just to make sure he didn’t have a seizure driving to another hospital.
        One treatment of that didn’t do anything to him. Normally when we have to call 911 they give him versed to get him out of the seizure otherwise it seemed he wouldn’t come out of it. The aura, and the seizure together seems to last a good hour.

        We put him on cbd oil only and low carb diet. He did very well for 6 months then recently. He felt like he could handle college but the first day right after just one class…with no pressure to do test or even home work…he was there just to listen and give it a try, he ended up in the ER for a very big seizure. He walked out side unresponsive to us in the very very cold no shirt no shoes ended up having an asthma attack during the seizure and then again later that day after getting home from the ER we had to go back. Due to another asthma attack. I never knew someone could have an asthma attack during a seizure. He hasn’t had asthma for years, since he was 8 he is now 20.

        But I have read that in the aura state throwing things is something people do. Also wondering off is something some people do. Feeling fear is something people feel. But like I said when I asked him about it he said it is not actually fear he feels he feels like something is after him and he needs to get away. I just wish we could find a way to stop that feeling/aura.
        My son wants to go to be a Pastor to help people but with this kinds of aura and seizures I don’t think that would work. But we will keep trying to find a way to help his aura so maybe want he does can be more controlled. Would you think since each person has different aura that maybe it is what they are putting in to their minds. Like my son likes watching wrestling and playing video games where he has to escape. My thought would be to at least try to put good things in his mind for the most part, like relaxing music, less violent games and shows. It would be nice if there was a study or research on this idea. Like why do some people get happy during the seizure/aura why some feel fear and so on.

        Liked by 1 person

        Comment by Barbara — January 25, 2019 @ 6:19 PM

    • Barbara,
      I’m NOT quite sure if the whole episode is related to the side effects of my medications but your son sounds like what I go through sometimes,,, hallucinating, suffocating, looming & walking aimlessly around, disorienting experience, before I end up going back to normal ordinary day like nothing ever happened or have another grandmal seizure.
      You would NOT believe me if I tell you, I got arrested & banned from visiting the County Public Library, during & because of these occasional epileptic episodes. You would NOT believe I got handcuffed to the ambulance & hospital bed during one of these episodes, until my friend walked into the Hospital & warned the ER doctor for Medical Malpractice.
      And going through these ordeals, I’ve no idea nor recollection of what’s going on, until being told by the people around me, during these episodes.
      The whole episode feels like a bad dream.
      Therefore, your son is not alone, I can understand your/his frustrating conditions.
      I learned INTERFERING in the middle of the whole episode, may end up being more agitating & counter productive.
      Best Wishes!
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — January 25, 2019 @ 11:52 AM

      • Thank goodness for your friend!

        Like

        Comment by Phylis Feiner Johnson — January 25, 2019 @ 12:59 PM

      • Sorry to hear what you are having to go through. I worry about things like that happening to my son. He is 20 now. We go everywhere with him so we can let people know he is having a seizure and not crazy, or mad. We also let people know not to touch him in this state as he will defend him self and run off. We try not to touch him until we see him start to stagger around then we help him to the ground and just gently push him back down if he tries to get up. He will try to get back up even if he is convulsing at the time and fall back down. We have a dog trained to lay across him to keep him down if we are not there by some chance.

        We have been in Dick sporting goods when he went into a seizure walked around in a confused unresponsive state. He was trying to figure out how to get out of the store but couldn’t. This was a store he goes to a lot. He did knock a Christmas tree over and the worker went to confront him. I informed him my son was in a seizure and not to touch him. He just said then get him out of here. I said I’m trying. Finally my son could recognize I was telling him to follow me and I showed him where the door was and we went to our car. He continued to convulse/shake there and then came out of it not as tired as normal.

        One time when we called 911 the emt said he wasn’t in a seizure but yet my son could not respond to him and was lightly shaking. You could tell he was confused and couldn’t respond. The emt said that isn’t a seizure I said then what is it then. He had no answers and refused to give my son versed to stop the seizure. Which seems like the only thing that will stop it. But once he touched my son and my son pushed him away he gave it to him. Then by time we got to the ER my son was coming out of the seizure and talking to us. Any way because of that I now have a letter from my son’s doctor saying if my son is in a confused, irritated and unresponsive state to treat his seizure. I have had to show it to them one time since.

        Also when my son walks off in a seizure I call for EMTs and police officers. The police have been very helpful and been there to back us up by letting us tell them what to do. And that is don’t touch him unless we have to prevent him from injuring him self like walking out in front of traffic. Then we would need help keeping him down until he starts to convulse. I just worry about what would happen if happens in a crowded place. Or not in his home town. Life is so risky for people who suffer with complex partial seizures and aura (simple seizures) that have the feeling of fear or being chased by something. Good luck to you. CBD oil has helped for 6 months on no meds we are hoping this seizure was a one time break through while on it.

        Liked by 1 person

        Comment by Barbara — January 25, 2019 @ 6:40 PM

      • I’m glad that you’ve found a (partial?) solution and hope CBD oil helps heal both you and your son.

        You’ve been through hell and certainly deserve some reprieve.

        Like

        Comment by Phylis Feiner Johnson — January 25, 2019 @ 10:31 PM

      • Ever since I’ve learned to wear a MEDICAL ALERT CARD like a chain/necklace to avoid any unwanted wrong attention & unnecessary misunderstanding, when I have auras or petite mal seizures, I felt more confident to overcome the next episode with less dramatic trouble than the few I had been through before.
        Therefore, I suggest your son wear MEDICAL ALERT CARD on him, defining his medical condition (Epilepsy/Seizure) & Emergency contact number, to make him feel more safe & independent to carry on with his life, without demanding & consuming your constant supervision.
        While your concerns for the wellbeing of your son is understandable, your son may want to fly with his own wings some day.
        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — January 26, 2019 @ 6:43 AM

      • Re: Medical Alert Cards: Here’s some important information about 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/text-id.aspx a powerful Medical ID in case of emergency. It assigns a unique personal identification number (PIN) that is displayed on a wallet card, key chain, sticker or snap-on device that can be worn on clothing. 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.

        A new and clever entry is SquID Squares. SquIDs connect to to your online medical profile and optionally alert emergency contacts by text and/or by email. An EMT or medical care provider can access your medical profile by scanning the QR on the front of the SquID with one of the thousands of FREE apps or by going to the URL found on the back of the SquID. The subscription to the online medical profile is FREE for life. No monthly or yearly fees, ever! Myidsquare.com/products/squid-squares

        Like

        Comment by Phylis Feiner Johnson — January 26, 2019 @ 9:38 AM

  16. Yes- a beautiful description! Had this only been presented years ago, I could have shared the facts with the neurologist, but was too young to really understand it all. I do recall (slightly) when I was little, I’d be talking to my mother, (then have a ‘spell’) and she asked me if I had a tummy ache- so I’d always be saying, “Mommy, I got gas…………………..”.

    Well, regardless, it is refractory- but is still a good description of the spells I have. Thank you!

    Liked by 1 person

    Comment by Karen — January 25, 2019 @ 12:24 AM

  17. I only had two auras in my life, the second one led to a tonic/clonic. I was put immediately on Keppra and have been fine since. My auras start with me feeling tipsy, even though I’ve had nothing to drink. Then it turns visual, where things seem to be speeding past me like in the movies, they blur as they go by. Then I start seeing a ton of images flash into my mind, and I’m seeing everything except what I know I’m supposed to be seeing. It’s like a kaleidoscope of images.

    My son’s are different. He has the foreboding/doomed feeling. He get emotional. Sounds are different to him… like a fan that he hears every day suddenly sounds like it slows down and gets louder. His vision gets a little impaired… he described looking at his paved driveway and it looked like it was wavy like a magic carpet.

    I used to experience deja vu a LOT as a child, but never had seizures. And he and I both experience “Alice in Wonderland” type episodes as children, way before the auras or seizures began. So I think there may be signs for some people in our childhood that we’re prone to epilepsy, we just haven’t hit our threshold yet?

    Liked by 1 person

    Comment by Theresa — January 25, 2019 @ 10:06 AM

    • 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…

      Children are the most affected by Alice in Wonderland Syndrome.

      Most of the effects occur in the dark, where they feel the most scared.

      Oddly enough, some cough syrup ingredients might cause AIWS.

      Other causes for AIWS in children are Epstein-Barr Virus and Mononucleosis (or Mono for short).

      Most times, the symptom will last for only one month.

      And although it’s unlikely, adults are able to get Alice in Wonderland Syndrome as well.

      Like

      Comment by Phylis Feiner Johnson — January 25, 2019 @ 10:25 AM

      • Mine were never associated with a headache or cough medicine, and lasted into my early 20s. I’ve done lots of reading on this and there are several studies linking epilepsy to AIWS. “AiWS can be caused by abnormal amounts of electrical activity causing abnormal blood flow in the parts of the brain that process visual perception and texture. Nuclear medical techniques using technetium, performed on patients during episodes of Alice in Wonderland syndrome, have demonstrated that AiWS is associated with reduced cerebral perfusion in various cortical regions (frontal, parietal, temporal and occipital), both in combination and in isolation. It has been hypothesized that any condition resulting in a decrease in perfusion of the visual pathways or visual control centers of the brain may be responsible for the syndrome. For example, one study used single photon emission computed tomography to demonstrate reduced cerebral perfusion in the temporal lobe in patients with AiWS.[25] Other theories exist that suggest the syndrome is a result of unspecific cortical dysfunction (e.g. from encephalitis, epilepsy, decreased cerebral perfusion), or reduced blood flow to other areas of the brain.”

        I always experienced it trying to fall asleep… I felt as though when I was lying in my bed, that my bed was huge and I was super tiny and sort of sinking into my bed. My son said his felt like he was Popeye, and that just his forearms were huge. Strange feelings indeed, just as most auras are.

        Liked by 1 person

        Comment by Theresa — January 25, 2019 @ 11:44 AM

  18. Wow, Theresa! You really know your stuff!

    And yes, I don’t think I would trade one aura for another.

    Like

    Comment by Phylis Feiner Johnson — January 25, 2019 @ 1:19 PM

  19. I have had auras for nearly 30 years only rarely leading to complex partial seizures. An aura for me would come in the form of a flashing light or distorted vision. I just know something is up. Luckily they are well controlled so I don’t get many.

    Liked by 1 person

    Comment by clearskiescamino — January 25, 2019 @ 6:29 PM

    • Photosenitivity is a reflex action and can be a trigger for any type of seizure.

      If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure.

      The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.

      And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.

      Like

      Comment by Phylis Feiner Johnson — January 25, 2019 @ 10:36 PM

  20. My neuro told me in 2009 that my auras were seizures in their own right, yet nobody else EVER believed me.

    Come to think of it, when I was first diagnosed I had 3 auras. I kept telling the technicians “no, wait, that’s not what happens to me.”

    I never put it all together before.

    Liked by 1 person

    Comment by xlsmft — January 25, 2019 @ 10:10 PM

  21. Sound o to familiar i have these,i am 38 years old and still age 14 I was diagnosed with petit mal seizures that were hereditary…these auras come n go sometimes several a week & other times once twice a month..hate the feeling they give me hard to describe but they arent fun at all!! 😔

    Liked by 1 person

    Comment by Jeanette Fry — January 25, 2019 @ 10:30 PM

    • Some say they feel, the aura is worse than the seizures themselves! 😦

      Like

      Comment by Phylis Feiner Johnson — January 25, 2019 @ 10:38 PM

      • In my opinion the auras are actually worse…since I was taking off meds over 10 years ago my anger rages have gotten worse my auras make me wanna get away from everyone and noises etc and seems like if I am around someone when one comes on it seems to make my auras worse or stronger shall I say…I get emotional,quesy and very tired and drowsy….

        Liked by 1 person

        Comment by Jeanette Fry — January 26, 2019 @ 12:34 PM

      • I think that there are many who would agree that the auras are worse than seizures.

        Nonetheless, I’m sorry you have to go through all those horrible conflicting feelings. 😦

        Like

        Comment by Phylis Feiner Johnson — January 26, 2019 @ 3:54 PM

  22. Hi I have just had what I know to be some kind of seizure but felt that what I was experiencing would not be thought of by the hospital doctor to be one. As well as twitches and jerks (diagnosed J Myoclonic in 1982) I had a high pitched noise in my ear, the stomach ache and a strong sense that it was a seizure – small one – which would lead to a Tonic Clonic. I now have a name for it and proof. Anyone else experienced something like this Squirrel 37

    Liked by 1 person

    Comment by squirrel37 — January 26, 2019 @ 6:14 AM

    • I used to get a strong metallic taste in my mouth, signifying that a seizure was coming.

      I’ve heard about people having ringing in their ears.

      But, just as there are all types of seizures, there are also many different types of auras.

      Like

      Comment by Phylis Feiner Johnson — January 26, 2019 @ 9:35 AM

      • Hi Phyllis Thanks I wasn’t too sure about telling my GP as I felt kind of stupid Thanks for telling me that you’ve heard about the ringing in my ears. Actually I do have ringing in my ears from time to time but I thought it was something to do with Tinititus even though I have not worked in a noisy environment. I am going to tell my GP as I am sick of hospital doctors telling me how I feel.
        Anyone had a hospital doctor tell you there is nothing wrong with you just because you do not have loads of seizures? I have lost all respect of the medical profession I can only trust my GP.
        Can I also ask anyone about their experiences while taking sodium valproate. I’m from the UK so I don’t know the company who manufactures it. Thanks Debbie

        Liked by 1 person

        Comment by squirrel37 — January 26, 2019 @ 8:59 PM

      • Apparently, Sodium Valproate is manufactured all over the world, because it is generic. I even found a listing for India!

        Best known as Convulex, Depakote, Epilim, and Stavzor, it was initially produced by AHFS/Drugs.com

        The most common side effects of Sodium Valproate include feeling sick or shaky, an upset stomach, feeling sleepy and weight gain.

        If you develop a severe stomach ache, sickness and vomiting, yellowing of the skin or whites of the eyes (jaundice), or unusual bruising or bleeding see your doctor straight away.

        As far as hospital doctors not believing anything is wrong with you, remember, they’re strangers.

        They have no history with you and know zero about your body.

        So the very best they can do is guess and hope they get it right!

        Like

        Comment by Phylis Feiner Johnson — January 26, 2019 @ 10:24 PM

  23. I get super nauseous before a seizure. Sometimes just by itself. This post has been very helpful. I thought I was going crazy. I taste blood too if it’s going to be a bad seizure

    Liked by 1 person

    Comment by Jennifer — January 28, 2019 @ 9:55 PM

    • I think the feeling of feeling nauseous before having a seizure is pretty common.

      But tasting blood, I’ve never heard of. That must be awful. 😦

      Like

      Comment by Phylis Feiner Johnson — January 29, 2019 @ 9:59 AM

      • Hi I’ve heard of tasting blood in your mouth
        or it could be described as a metallic taste

        Squirrel

        Liked by 1 person

        Comment by squirrel37 — January 29, 2019 @ 10:05 AM

      • I used to get that metallic taste also and drool a little. Kind of embarrassing.

        Like

        Comment by Phylis Feiner Johnson — January 29, 2019 @ 10:10 AM

  24. FYI, Depakote was one of the most horrible medications I’ve ever been on, and I’ve tried very many.

    Like

    Comment by skolly9 — January 29, 2019 @ 8:52 PM

    • I can believe it. 😦

      Like

      Comment by Phylis Feiner Johnson — January 29, 2019 @ 8:56 PM

    • Hi FYI What was Depakote (sodium valproate to me- I’m from UK) like for you? Did you come off it straightaway or wouldn’t your neuro let you.

      I eventually took this med for 30 years as I was seizure free Or the medical hospital doctors thought so as they did not ask me what side effects I was getting after the increase to 800mg. I would really like to know how long you took it for.

      Hospital doctors just see that the person is seizure free and think that you should stay on it. These medical practitioners did not ask me how I felt just wrote down those side effects you get that is common to all AEDs. Never asked me how my life has been like. These neuros are so arrogant.

      Debbie

      Liked by 1 person

      Comment by squirrel37 — January 31, 2019 @ 1:00 PM

      • You may think that 800mg is not a lot but it is how the drug reacts to the individual. The level of the AED must be ignored as written in many reports seen on the internet. Very easily found on the web.

        Like

        Comment by squirrel37 — January 31, 2019 @ 1:04 PM

  25. As you say they do not know of a person’s health but hospital doctors have access to a person’s medical records so they know of the person’s medical history. AND consultants who are actually specialists in Epilepsy know of the side effects of these medications so are supposed to know what these side effects have on a person’s body otherwise what are the exams for that they have taken to be a neurologist?

    Liked by 1 person

    Comment by squirrel37 — January 30, 2019 @ 12:23 PM

  26. I don’t think they necessarily have access to your records. Especially in an emergency situation.

    I know that when I went to the ER in status, they just did what they could until my neuro came the next day.

    Like

    Comment by Phylis Feiner Johnson — January 30, 2019 @ 12:34 PM

    • Phylis,
      I bet it’s a very controversial issue & I’m sure many patients would probably think about violation of their privacy but I think to prevent & avoid any misdiagnosing, guessing, confusion, misunderstanding, delay & risk in emergency treatment of the unconscious patients knocked out due to seizures, I think ALL neurologists should be legally required to provide MEDICAL ALTER CARDS for their patients to wear like a badge or carry on in their wallets, consisting of the patients name, address, medical record number, prescription list, emergency contact number,,,.
      I think, simplifying the access to the patients information, identification, medical records & immediate condition of the patient in need of emergency medical treatment may help to expedite the cure of the patient, with out potentially misdiagnosing the patient’s condition & delaying the cure for patients.
      What do you think of the idea that the Neurologists should be legally required to provide MEDICAL ALERT CARD for the patients to wear, when the Neurologists are prescribing the patients medications?
      It would be great to read your opinion.
      Thank you.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — January 31, 2019 @ 11:11 PM

      • Brilliant!

        That’s actually what the Medical Alert Foundation does. 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.

        There’s a hitch here, though.

        The price for membership is $30 a year.

        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 wallet card, key chain, sticker or snap-on device that can be worn on clothing.

        The PIN is linked to an online account that you can set up on your secure website.

        Your online account has information about who you are, what medications and allergies you have and up to ten emergency contacts.

        But, like the Medical Alert Foundation ID, it too costs a fee.

        Imagine having such information for free?

        I vote you, Gerry, for President! 🙂

        Like

        Comment by Phylis Feiner Johnson — February 1, 2019 @ 12:48 AM

      • Phylis,
        Thank you for your inspiring vote, endorsing me for president but I’m not sure Donald Trump is going to evacuate & leave the Presidential Office for me, anytime soon.
        Thereforefor I’ll just have to wait for a phone call from Donald Trump to see if he likes your idea. 😄😄😄

        In any case what comes to my mind is, if Banks have easy access to public records & the patients credit history, why shouldn’t the hospitals have easy access to the medical history/records of the patients in desperate need of emergency medical treatment?

        I would think, there has to be a way for the Ambulance emergency technicians & hospital Doctors to have easy access to the unconscious seizing Patients medical records to avoid any misdiagnosis & delay providing competent medical treatment.

        In an information age, where infinite documents, files & records are available at your finger tips & can easily be found by searching in the Interenet, the medical records & background of unconscious patients desperately needing emergency medical treatment should NOT be made difficult to the medical personnel curing the unconscious patients.

        Let’s hope, the hospital industry & healthcare establishments take the responsibility of curing the patients
        an ultimate devine obligation, heed the plight of the patients & maintain a national database where all the emergency personnel “trearting & curing unconscious patients”, can easily have access to the medical records of the patients in their emergency rooms.
        Gerrie

        Like

        Comment by BahreNegash Eritrea — February 1, 2019 @ 4:22 PM

  27. Yes. Isn’t it strange.

    Even Goggle and Facebook (and whoever else) knows all about you.

    But medical personnel don’t know a blessed thing.

    Perhaps if you Twittered to Mr. Trump, you might get a reply! 🙂

    Like

    Comment by Phylis Feiner Johnson — February 1, 2019 @ 4:58 PM

  28. 😄😄😄!

    Like

    Comment by BahreNegash Eritrea — February 1, 2019 @ 10:05 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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