Auras: Living in a World of Our Own
Renneanna Dillen
Imagine this: you feel a slight sensation in your right foot. It is like this weird, tingly feeling. You feel a sense of dread and the world around you is spinning. You start seeing rainbow specks in your vision, with shades of green, yellow, pink, and red. You are feeling dizzy and you are having a hard time walking. You are panicking, your heart is beating faster. You feel a strong sense of urgency, hoping that this feeling will eventually dissipate. But it does not. You start having all of these random thoughts, racing one after another and coming at you all at once.
And then you wake up. You had a seizure. As someone with epilepsy, I have personally experienced this series of sensations before I succumb to a seizure. I have had many seizures that occurred without warning but I began to develop auras almost 2 years after my diagnosis. An aura is how your brain can send a warning signal to your body that you will have an epileptic seizure. These auras can last between a matter of seconds to an hour (Aura and Seizures | Michigan Medicine,” n.d.)! Auras can vary in many different forms. Some people have auditory or olfactory hallucinations such as ringing, buzzing sounds, or voices and peculiar smells. Others experience tingling sensations, nausea, bright lights, zigzag lines, slowly spreading spots, visual distortion or numbness (Aura and Seizures | Michigan Medicine,” n.d.). Many people who have auras certainly suffer from anxiety and fear for the majority of its duration. Auras save lives – even just having an aura a few seconds before will allow you to get to a safe place before you have a seizure. The last aura I had gave me time to lay in my bed, put a pillow on my side before time was up. I regained consciousness but I did not have any injuries that I would otherwise have if they happened without warning.
It is certainly valuable to gain some perspectives from individuals who have experienced these auras especially because they are all unique. This is evident in a series of interviews of young epileptics describing their sensations and experiences while having an aura. In one interview, a woman named Francesca, who was diagnosed at the age of 18 feels that “’…everything becomes really huge and I sort of feel really, really small, almost a sort of Alice in Wonderland type effect’” (HealthTalk). For Francesca, the aura lasts for approximately 30 seconds, and she goes through a few emotional stages during this time: first confusion, fear, a sense of calmness, and acceptance of what is to follow. Personally, I have similar emotional stages prior to having a seizure: I first feel confused, then I have the realization of what is going to happen, I panic, and eventually I accept my fate.
It is worth mentioning that these auras are something that can develop long after being diagnosed with epilepsy. Becky, who was diagnosed with epilepsy at 15 developed an aura about 2 to 3 years after she was diagnosed. In the interview, Becky claims that “…all of a sudden, just completely out of the blue, I just started to get warnings across the bridge of my nose”, describing it as “a real bad sort of ache” across the bridge of her nose!
It turns out that the aura itself is a seizure all on its own, in what is known as the simple partial seizures (HealthTalk). I learned from my neurologist at Tufts Medical Center (who specializes in seizures) that this aura can happen on all its own without progressing into a convulsive seizure. Archie, a man who was diagnosed at 10 years old had insistences where he would feel faint, lightheaded, or sick, describing it as an “unpleasant feeling” (healthtalk.org). Despite this aura, it did not lead to another seizure.
When people think of epilepsy, they usually assume that an epileptic would have what is known as tonic-clonic seizures. I have experienced them myself—it begins with a loss of consciousness, you stiffen up, and then you have convulsions. Charli was 18 when she was diagnosed with epilepsy and described what she experienced before losing consciousness: “All of a sudden my vision started to get blurry and I started to twitch. … I twitch and I sort of start turning round and I start spinning round and then I'll just fall to the floor, have a seizure, I think I start shaking and, and whatever happens next” (HealthTalk).
Although these interviews are just small anecdotes, it gives a broad scope of the specificity and peculiarity of the possibilities of what an epileptic can experience. According to the results in “Auras in Generalized Epilepsy”, a study that had almost 800 participants found that the most frequently reported auras included: head or eye deviation (which is the forced deviation of head/eye to the side), unilateral shaking or stiffening of the body, bilateral shaking or stiffening of the body or other motor phenomena, cephalic sensation including an ictal headache, fear, panic, anxiety and other unexplained changes in an emotional state, as well as receptive/expressive aphasia (Dugan et al., 2014). Here is another interesting finding: Two hundred six (60.4%) of those who reported auras in response to closed-ended questions reported more than one aura. Auras characterized by unusual tastes, visual or auditory phenomena, déjà vu, and jamais vu were also frequently reported. No subject reported olfactory auras (Dugan et al., 2014). It is important to note that the data this study provided were mostly the statistics they calculated based on the answers of their participants, with no real basis in neuronal activity.
Auras are still trying to be understood by scientists. There are so many complexities given that there are so many different types of seizures. Not only are auras an enigma on a neuronal level, but there are also many questions on whether certain kinds of auras correlate with specific seizure types or whether there is a correlation at all? How can people develop auras over time? How does this occur on a neuronal level? Do auras evolve into different types of auras over time? If so, why does that occur? For the time being, no one really knows exactly, so until then us epileptics are living in a world of our own.
About the Author
Renneanna Dillen is a sophomore at Harvard College concentrating in Neurobiology.
References
Dugan, P., Carlson, C., Bluvstein, J., Chong, D. J., Friedman, D., & Kirsch, H. E. (2014). Auras in generalized epilepsy. Neurology, 83(16), 1444–1449. https://doi.org/10.1212/wnl.0000000000000877
Epilepsy in Young People - Experiences of different seizures and auras. (n.d.). Healthtalk.org. Retrieved April 4, 2021, from https://healthtalk.org/epilepsy-in-young-people/experiences-of-different-seizures-and auras#:~:text=Epilepsy%20in%20Young%20People%20Experiences%20of%20different%20seizures
Aura and Seizures | Michigan Medicine. (n.d.). Retrieved from www.uofmhealth.org website: https://www.uofmhealth.org/health-library/tm6354
And then you wake up. You had a seizure. As someone with epilepsy, I have personally experienced this series of sensations before I succumb to a seizure. I have had many seizures that occurred without warning but I began to develop auras almost 2 years after my diagnosis. An aura is how your brain can send a warning signal to your body that you will have an epileptic seizure. These auras can last between a matter of seconds to an hour (Aura and Seizures | Michigan Medicine,” n.d.)! Auras can vary in many different forms. Some people have auditory or olfactory hallucinations such as ringing, buzzing sounds, or voices and peculiar smells. Others experience tingling sensations, nausea, bright lights, zigzag lines, slowly spreading spots, visual distortion or numbness (Aura and Seizures | Michigan Medicine,” n.d.). Many people who have auras certainly suffer from anxiety and fear for the majority of its duration. Auras save lives – even just having an aura a few seconds before will allow you to get to a safe place before you have a seizure. The last aura I had gave me time to lay in my bed, put a pillow on my side before time was up. I regained consciousness but I did not have any injuries that I would otherwise have if they happened without warning.
It is certainly valuable to gain some perspectives from individuals who have experienced these auras especially because they are all unique. This is evident in a series of interviews of young epileptics describing their sensations and experiences while having an aura. In one interview, a woman named Francesca, who was diagnosed at the age of 18 feels that “’…everything becomes really huge and I sort of feel really, really small, almost a sort of Alice in Wonderland type effect’” (HealthTalk). For Francesca, the aura lasts for approximately 30 seconds, and she goes through a few emotional stages during this time: first confusion, fear, a sense of calmness, and acceptance of what is to follow. Personally, I have similar emotional stages prior to having a seizure: I first feel confused, then I have the realization of what is going to happen, I panic, and eventually I accept my fate.
It is worth mentioning that these auras are something that can develop long after being diagnosed with epilepsy. Becky, who was diagnosed with epilepsy at 15 developed an aura about 2 to 3 years after she was diagnosed. In the interview, Becky claims that “…all of a sudden, just completely out of the blue, I just started to get warnings across the bridge of my nose”, describing it as “a real bad sort of ache” across the bridge of her nose!
It turns out that the aura itself is a seizure all on its own, in what is known as the simple partial seizures (HealthTalk). I learned from my neurologist at Tufts Medical Center (who specializes in seizures) that this aura can happen on all its own without progressing into a convulsive seizure. Archie, a man who was diagnosed at 10 years old had insistences where he would feel faint, lightheaded, or sick, describing it as an “unpleasant feeling” (healthtalk.org). Despite this aura, it did not lead to another seizure.
When people think of epilepsy, they usually assume that an epileptic would have what is known as tonic-clonic seizures. I have experienced them myself—it begins with a loss of consciousness, you stiffen up, and then you have convulsions. Charli was 18 when she was diagnosed with epilepsy and described what she experienced before losing consciousness: “All of a sudden my vision started to get blurry and I started to twitch. … I twitch and I sort of start turning round and I start spinning round and then I'll just fall to the floor, have a seizure, I think I start shaking and, and whatever happens next” (HealthTalk).
Although these interviews are just small anecdotes, it gives a broad scope of the specificity and peculiarity of the possibilities of what an epileptic can experience. According to the results in “Auras in Generalized Epilepsy”, a study that had almost 800 participants found that the most frequently reported auras included: head or eye deviation (which is the forced deviation of head/eye to the side), unilateral shaking or stiffening of the body, bilateral shaking or stiffening of the body or other motor phenomena, cephalic sensation including an ictal headache, fear, panic, anxiety and other unexplained changes in an emotional state, as well as receptive/expressive aphasia (Dugan et al., 2014). Here is another interesting finding: Two hundred six (60.4%) of those who reported auras in response to closed-ended questions reported more than one aura. Auras characterized by unusual tastes, visual or auditory phenomena, déjà vu, and jamais vu were also frequently reported. No subject reported olfactory auras (Dugan et al., 2014). It is important to note that the data this study provided were mostly the statistics they calculated based on the answers of their participants, with no real basis in neuronal activity.
Auras are still trying to be understood by scientists. There are so many complexities given that there are so many different types of seizures. Not only are auras an enigma on a neuronal level, but there are also many questions on whether certain kinds of auras correlate with specific seizure types or whether there is a correlation at all? How can people develop auras over time? How does this occur on a neuronal level? Do auras evolve into different types of auras over time? If so, why does that occur? For the time being, no one really knows exactly, so until then us epileptics are living in a world of our own.
About the Author
Renneanna Dillen is a sophomore at Harvard College concentrating in Neurobiology.
References
Dugan, P., Carlson, C., Bluvstein, J., Chong, D. J., Friedman, D., & Kirsch, H. E. (2014). Auras in generalized epilepsy. Neurology, 83(16), 1444–1449. https://doi.org/10.1212/wnl.0000000000000877
Epilepsy in Young People - Experiences of different seizures and auras. (n.d.). Healthtalk.org. Retrieved April 4, 2021, from https://healthtalk.org/epilepsy-in-young-people/experiences-of-different-seizures-and auras#:~:text=Epilepsy%20in%20Young%20People%20Experiences%20of%20different%20seizures
Aura and Seizures | Michigan Medicine. (n.d.). Retrieved from www.uofmhealth.org website: https://www.uofmhealth.org/health-library/tm6354