Some would say I’m one of the lucky ones. I have an aura prior to my seizures.
An aura is described as ‘a distinctive feeling or some other warning sign when a seizure is coming’. For those of us who have auras, they can be so different, and that’s both good and bad. Bad because they are tough to study and localize, and good because doctors can firmly say that a seizure is on its way if you do have one. I’ve had people tell me they get the taste of metal in their mouth. Some people become incredibly irritable and downright cranky. For me, I begin to think everything and everyone is familiar. It’s that ‘been there, done that’ feeling, even though there’s nothing familiar about it. Technically, it’s a feeling of de’ja’ vu. I can be walking around our downtown area close to our home and every face looks like someone I knew from my past. I know then that I must either call my husband or my Mom, or at least sit down.
Researchers say as many as 65% of us who have Epilepsy have these ‘warning signs’. Neurologists might say this is good, but I’m beginning to question them. The last few ‘bad days’ I’ve experienced have been filled with auras, which of course has led to seizures. My question is…for those of us who experience auras, do they make us live in fear of having a seizure?
No matter how extensive or complex your aura is, it’s still a warning that a seizure is coming. And, I guess that’s not so bad.
Granted there’s nothing we can do to prevent the auras, sort of like there’s nothing we can do to prevent the seizures. But still, every strange feeling I get…every wave of de’ja’ vu, I begin to panic rather than prepare. I decided last night, I must try to accept my auras and take them for what they are, a warning or a signal. I should probably feel lucky I have them so I can prepare myself and those around me.
Like most everything involved with having Epilepsy, this takes some time to get used to.
Jeff Nelson
July 10th, 2010 at 12:37 pm
From Aura’s back to feeling Normal (or whatever you want to call normal brain activity), and how I found a way to prevent my seizures from time to time!
Ahhh…finally some talk about aura’s! Over the years of dealing with Epilepsy I’ve had various kinds of seizures; from Grand Mal, Complex Partial, to my daily staring ones. I guess the doctors would call me one of the lucky ones as well, since I have aura’s.
Like my seizures, I have had aura’s of various kinds as well. Only rather than the deja’ vu’, I have the jama’ vu’ or the (I’ve been here before, but nothing seems normal or everything seems strange kind). Also, I have the kind where words and numbers begin to make no sense at all or are seemingly impossible to read. The last, and most typical kind I get are the ones that are visual which begin with a bright white dot that flashes in the center of my vision, almost or maybe even exactly to the rate of my heart beat, and all that is in my visual sight seems to slightly twist as if being thrown into a tunnel.
The first two are the most rare, and I get them only once in a while, though the last one comes daily. If the bright dot flashing in front of me gets brighter and flashes faster, the tunnel vision more twisty, I know I’m just seconds away from a staring seizure!
You mentioned that when you get an aura that you know a seizure is coming. However, over the years of dealing with aura’s, I have tried experimenting with these signals and trying to get my seizures to stop. I have noticed that sometimes, my experiments have worked, and rather than going from aura to seizure, I am able to go from aura back to normal! This doesn’t always work, though sometimes it does, and I will always try.
The second I get that bright dot flashing in front of me, and things seem to flip in a twisty tunnel that directs my vision I immediately move my sight around and about from place to place, in depth and in reach. Along with moving my sight about, I try to calm the fear in my mentality and place my thoughts on ANYTHING other than that dot. Something maybe I have done, a place I have been, or something I would like to do. Doing these things together, on occasion, has stopped that dot from flashing, my vision from slight flip twisting, and prevented the hard core tunnel vision staring seizures to start up!
I’ve never actually mentioned this to anyone, so if anyone out there is someone who is having aura’s and seizures that meds or surgery can’t stop, I would recommend trying to practice various mental experiments while the aura’s are taking place. Even though I can’t always stop them, it has still worked for me so many times that I can’t but seem to think that there is actually something to this practice.
For instance, an example might be: If you are one who has daja’ vu’ aura’s, you might try consistently telling yourself, (while the aura is taking place) “I don’t know these people, or I don’t know where I am.” Regardless of how you may feel. It’s just a thought for ones like those, but it was doing things like this over the years, and doing them over and over again, that helped me find what has seemed to stop my seizures from happening from time to time. That is unless the kindling aura’s may just stop on their own account regardless. Though, it doesn’t hurt to try or ask a doctor about it.
mary
July 11th, 2010 at 8:53 am
thanks!

it’s so great to read ANYTHING about auras. i have them too, and no one ever knows what i’m talking about. so i’ve pretty much stopped. but your letter and the one you responded to are really refreshing.
i’ve also tried controlling them myself with some degree of success.
… i guess.
although i have wondered how you would measure the success of trying to control these things on your own.
but does it really matter if you feel better?!
probably not.
i have mentioned this to my doctor and she looked at me like i was nuts, and shrugged it off.
i guess we’re all used to being looked at like that by now.
anyway,
thanks again!
Trevor Hilliar
July 11th, 2010 at 12:54 pm
Great comments from Jeff and Mary. I have a similar experience to Jeff’s, and have also found that I can avert a seizure despite having an aura.
From the begining of my adult onset seizures, my doctor asked if I had any auras. While not knowing what an aura felt like, I said “no.” Yet, all my seizures were grand mal,and all immediately upon waking in the morning, within a day of the full moon.
Only recently have I begun to have seizures during the day, and I have discovered they are preceded by a feiling of dizziness. Yet I have begun to have what I believe are auras. I experience the deja vu feeling, and also a warm feeling rising up from my gut. I feel everyday acts like washing my hands in cold water or shaving will begin these feelings, and I can avert them from continuing or becoming a seizure through sitting down and deep breathing.
For what it is worth, my doctor says this could help us to find a therapudic level of medication by using the presence, or lack there of, as an indicator of how effective the levels are.
Thanks for the comments.
Alysse
July 12th, 2010 at 12:31 pm
Jeff…this is VERY interesting!…the fact that you can actually move away from having a seizure by doing something during your aura! I’m amazed. I am going to have to try this–it’s almost like you are mentally sending the seizure away.
I do know that when I am having a seizure, I ‘test’ myself. Most times, I can’t remember my husband’s name, my daughter’s name, the dogs’ names…so I challenge myself and try to recall these until the seizure is finished. But, these are the smaller ones, the grand mal seizures just wrap me up and take me with them.
Thanks again for following the site–
Jeff Nelson
July 13th, 2010 at 12:29 pm
Alysse….Definitely keep testing! I have a feeling, as I always have since the first time it worked, that there was something to this practice I started years ago. As I mentioned, it doesn’t always work, though getting free from one from time to time is a blessing.
Trevor….by the way, after years of reading stuff about “E” on the net. and books about “E”, I’ve never heard anyone other than myself mention things about “E” related to the full moon. Over the years, I’ve noticed that my seizures tend to increase as the moon gets to full. Same thing with seasons. As time gets closer to a direct summer, or a direct winter, my seizures increase as well. I’ve always wondered if these things had anything to do with how much our bodies are filled with water, and react to moon or season changes? I know these things affect the ocean tides, so that’s what got me wondering about weather my “E” was possibly reacting in a similar form? I’m looking to see if I’m the only one besides Trevor who has noticed this?
Trevor Hilliar
July 16th, 2010 at 10:27 am
Jeff,
Thank you for the comment. From my first seizure (Jan 1, 1999, the day before the full moon) to my last seizure, the day before the most recent full moon, I have tracked the dates of my seizures and their relationship to the moon. I have used SeizureTracker.com A site recomended by Alysse, to keep track of them, and then looked back at the moon callendar and compared dates. While my doctor dismisses the connection, I know it exists, and I am going to begin adding another pill to my daily routine a few days before the full moon. Since I am not near the maximum dosage of the meds I take, I feel this is a safe, preventative course of action. I hope it will have the desired effect.
Thanks again for the comment.
Trevor
Phil Gattone
July 19th, 2010 at 9:45 pm
I have auras but don’t have seizures afterwards. I get the feeling of extreme anxiousness. They last about 30 seconds. It’s kind of like the feeling of going down a roller coaster or an elevator. I have found that if I take deep breaths and just repeat in my head that everything is ok that the aura goes away.
recgrl09
August 1st, 2010 at 4:36 am
I had auras. They were really helpful. I knew from descriptions what my seizures looked like and would not want people to see me(or hear me) so I would go hide. They weren’t grand mal seizures so I wasn’t in real danger. Plus if someone did see me, I would get sent home from work and school if I got caught. But I always made sure I was somewhere safe.
Of course then there’s the old, “Please describe what your aura feels like.” I hate that! Its so hard to describe. They can’t understand what I’m trying to tell them. Its not a taste or sound just some weird sensation I get.
Alysse
August 1st, 2010 at 7:49 am
Thank you for your comments!
With auras–I usually get that question, although these days, I’ve been with my epileptologist for long enough–he typically asks me if I’m having the same type of auras or if I’m experiencing ‘new’ ones. But, I’m with you…they are very strange sensations! All the very best…
Alysse M.