By in Health & Fitness

Aura: The Worst Part of Epilepsy

While some folks think the worst part of having epilepsy is the actual seizures, that isn't necessarily the case. Don't get me wrong. A seizure, especially a grand mal seizure, is no picnic. It's frightening, it hurts, and it leaves you feeling as if you've run a marathon in a few seconds or minutes. But it is over quickly. And once over, often you can sleep.

No, by far the worst part of epilepsy is waiting for a seizure to happen. And hoping this time, maybe it won't. There is a phase of a seizure called the “aura” that is sometimes treated as a separate symptom. This phase can last a few seconds, or several hours. Auras can also occur before a person has a migraine.

If you have a mind to learn about the various ways aura can manifest, it's simple enough to find a rather extensive list of symptoms that mark the aura. There are probably as many auras as there are people who experience them. What I can tell you is that it's common to feel anxious or disoriented, or even as though you weren't in your body. Some people feel nauseous and overheated, some dizzy or weak. I also feel unable to accomplish simple tasks like food preparation or opening a medication bottle. I am liable to drop things or even to burn myself if I try to work around hot water or the stove.

Speech can be slurred, or for people like me what others say is harder to process. When Kim talked about a feeling of cognitive impairment, she was spot on. It's as though your whole being has been slowed down, but everything is coming at you at normal or even increased speeds. I could liken it to trying to cross a six-lane highway on foot in the dark.

Very frequently, the cognitive and perceptual alterations of an aura will lead to a seizure. And that's part of the rough stuff, too. Because most epileptics would rather skip the seizures altogether, thanks!

Regardless of whether there is a seizure, an aura can be mentally and physically draining. It is often in intensely negative emotional state of heightened sensitivity to stimuli. Every little thing that takes effort or causes anxiety, now feels larger than life.

People who experience an aura before seizures can develop coping mechanisms that help minimize both risks and discomfort. For example, I will avoid cooking or working around hazards. If I can have someone around me to keep an eye on things, I will.

An aura also acts as a warning signal that seizures are coming. It offers an epileptic the chance to get to safety, and sometimes even to change the course of the seizures ahead. I like to use sports drinks to replenish my electrolytes, which I have found reduces a lot of the symptoms. Sometimes, it can even arrest or lessen the severity of seizures that follow the aura.

While I am glad I do have an aura, it's not always easy to live with. What helps a person experiencing these or other symptoms of aura, is to be around sympathetic people who can help reduce the stress and anxiety that comes with it. Remaining calm, and just understanding that we don't have any control over this, goes a very long way to helping us relax and work through the worst of it.

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Image credit: Aura Storm ” by BWilde56/DeviantArt ( CC BY-ND 3.0 )

Note: This article was inspired by a piece on postdrome migraine symptoms by Kimagine and was originally published on another site.

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Linda-From-US wrote on October 16, 2014, 10:48 AM

Interesting. I have heard about auras with epilepsy. But I never heard or thought about it being related to migraines. I have migraines and have had them for years. I guess, I need to pay more attention to how I feel and see if I notice any of them before one of these comes on, especially the temperature changes. There may be a link there.

According2Beverly wrote on October 16, 2014, 12:56 PM

There really are no good parts, but you are right, waiting or anticipating a seizure is terrible. Thanks for sharing your story and giving us a health background to this condition. It is always great to learn new things and find out different ways a condition affects different people. Relax, feel happy and try not to worry about what might or might not happen in the future.

Platespinner wrote on October 16, 2014, 2:15 PM

My son has grand mal seizures that usually occur while he is asleep. It's not a big deal for him because he never actually remembers any of the seizure it is is scary for the rest of us. The last one he had he had just gotten out of bed and remembered feeling "off" before everything went bank.

I get migraines and often will have a stretch beforehand where I am tripping over my words. Once last year I was trying to read to my kids and was unable to get the words to connect into sentences.

AliCanary wrote on October 16, 2014, 4:14 PM

Oh my gosh, that sounds awful. I associated aura with migraines, but I didn't know the connection epilepsy. From the name, I assumed it was some sort of visual effect, like seeing haloes around things or the kind of "white-out" I get sometimes from standing up too fast (I have low blood pressure).

Feisty56 wrote on October 16, 2014, 5:31 PM

As a nurse, I've cared for many people who had epilepsy, although none of them had the cognition to be able to verbalize anything about an aura. I've never heard anyone describe it before. Sometimes the residents would have peculiar behavior that preceded a seizure, which is how I expect they experienced that pre-seizure period.

It's interesting that sports drinks reduce your symptoms or prevent a seizure. That would suggest that an electrolyte imbalance, however slight, might be correlated to the seizure activity.

I just hope you stay as safe as possible. Thank you for these insights. : )

JanetJenson wrote on October 16, 2014, 7:34 PM

As uncomfortable as that must be, I think it is better to have some kind of warning! Thanks for sharing with us.

paigea wrote on October 16, 2014, 10:52 PM

Thanks for sharing. I didn't know there was an aura associated with seizures. I get migraines but I don't get an aura

BarbRad wrote on October 18, 2014, 2:04 PM

I have heard about auras with migraines, but not with seizures. I have also heard that epilepsy seizures can be pretty well controlled with medication. Is that not true?

somedsatisfied wrote on October 20, 2014, 4:15 AM

My son describes the same thing with his seizures. He often feels sick with the aura, too.

Ruby3881 wrote on October 20, 2014, 12:30 PM

Not everyone who has either condition will experience an aura. But sometimes keeping a diary will help to track triggers and identify what your aura is.

Ruby3881 wrote on October 20, 2014, 12:45 PM

I wish it were as simple as "feeling happy" or "not worrying!" It helps an onlooker to understand that aura is the first of four phases for the person who has tonic-clonic (grand mal) seizures. So once the aura sets in the seizure is technically already happening, and any anxiety the individual is feeling results from actual physical and neurological changes.

A person who is in an aura state can't just talk themselves out of it, any more than a person having a heat attack can. The goal isn't to convince ourselves to ignore the symptoms or to try to just have a rosier attitude about them. It's to prevent things getting worse.

Ruby3881 wrote on October 20, 2014, 12:52 PM

My seizures are also nocturnal. Does he wake before the seizure, as I do? If he does, let me tell you he's probably quite frightened during the tonic phase. It hurts - a lot. And if he stops breathing the way I do, it's extra scary. It's a blessing that he doesn't remember afterwards (I do!) He probably still feels better if someone can talk to him until he loses consciousness.

I've always thought that watching a child have a seizure would be worse than actually having them myself. We kept an eagle eye on all our kids for years, especially the Bug because epilepsy often goes hand in hand with autism. I am very relieved that none of the kids has seizures.

Ruby3881 wrote on October 20, 2014, 12:54 PM

Some people do see halos, Ali. Or hear things. Or smell burned toast. Every person's aura is different, but I think usually the symptoms are fairly consistent for a person from one seizure to another.

Ruby3881 wrote on October 20, 2014, 12:58 PM

Since seizure activity is electrical, it just always made sense to me that the sports drinks were correcting the electrolytes. I don't know if it's a chronic imbalance, or if it's just that when the seizure happens the electrolyte levels get out of whack. But yes, they really do help.

Not to worry about my safety! I don't have grand mal seizures any more, and almost all my seizures are nocturnal. I also don't drive - for health reasons. So as long as I stay away from knives and stoves when I'm feeling shaky, I'm never in any danger. The worst of my seizures happened in my 20s, and there were only a handful of tonic-clonic seizures, even then.

Ruby3881 wrote on October 20, 2014, 1:00 PM

I agree! For a person who might have as grand mal during their waking hours, an aura can warn them to get to safety so they won't be driving or crossing the street when the seizure occurs.

Ruby3881 wrote on October 20, 2014, 1:35 PM

Not everyone who has a seizure disorder will have an aura, either. My neurologist seemed almost surprised when I spoke of the aura state years ago. I suspect even those who have an aura, sometimes don't recognize it as such.

Ruby3881 wrote on October 20, 2014, 1:38 PM

It is easy to control for some folks, and really difficult for others. Some folks can have multiple grand mal seizures every day, despite being on medication. And there's always a trade-off. The medications for seizures tend to have a lot of really negative side effects, and they can be very dangerous to a fetus if taken while a woman is pregnant.

Ruby3881 wrote on October 20, 2014, 1:46 PM

Are his seizure fairly well controlled, Lisa? It's got to be especially frustrating as a parent, to know something's wrong and not be able to fix it...

Platespinner wrote on October 20, 2014, 7:58 PM

He doesn't wake up before the seizures start and never has any memory of anything afterwards. He is back on medication again now after being off for about 5 years.