In an interview with South First, this neurologist explains the types of reflex epilepsies and the triggers, as well as what to do if someone is having a seizure.
Published Nov 10, 2023 | 8:30 AM ⚊ Updated Nov 10, 2023 | 10:53 AM
Dr Kalyani Dilip Karkare, Consultant Neurologist and Epileptologist · Manipal Hospitals. (Supplied)
Imagine having a seizure every time you hear a particular song! Or when you’re engrossed in a book! Or while brushing your teeth, having a hot bath, thinking deeply! All this might sound exaggerated — but for some, this is a daily reality.
These striking scenarios are real-life triggers for reflex epilepsy, a rare type of epilepsy brought on by specific and often ordinary stimuli.
With November being Epilepsy Awareness Month, Dr Kalyani Dilip Karkare, a distinguished neurologist and an esteemed authority on reflex epilepsy at Manipal Hospital on Millers Road in Bengaluru, speaks at length to South First about reflex epilepsy and some of its unique triggers.
She also lists important “Dos” and “Don’ts” for caregivers and the public on what to do if they see someone having an epileptic attack. Excerpts for the conversation:
Q. Who is considered an epilepsy patient?
A. It is important to remember that one episode of seizure is not considered as epilepsy.
If you experience two or more seizures within a minimum of 24 hours, or if after a single seizure you have a 60 percent higher risk than the general population of having another episode, then you are diagnosed with epilepsy.
Q. What is reflex epilepsy, and how does it differs from other types of epilepsy?
A. Reflex epilepsy is an intriguing condition that illuminates the brain’s response networks to internal and external stimuli. It is characterised by seizures frequently triggered by specific stimuli.
However, these seizures can also occur spontaneously in patients, indicating that reflex epilepsy doesn’t solely depend on external triggers. Sometimes, it’s part of a wider epileptic disorder, with some seizures being induced by triggers and others occurring spontaneously.
Seizures that are time-locked or have a direct link to a particular stimulus, whether external or internal, are considered reflex epilepsy.
Q. Is reflex epilepsy associated with stress?
A. No. There is a common misconception that extreme stress is the direct cause of reflex epilepsy. People might mistakenly believe that stress from reading, for example, should be avoided to prevent triggering seizures in their child. However, that’s not how it works.
The act of reading triggers a very specific response in a certain part of the brain and this response isn’t related to stress. So, it’s not like if I’m stressed while reading and I experience a seizure, I should stop reading altogether.
What’s crucial to understand about reflex epilepsy is that there needs to be a consistent trigger — a specific stimulus that repeatedly causes seizures.
Q. Which are some of the common reflex epilepsies you have seen?
A. The most common and well-known type of epilepsy is photosensitive epilepsy. These individuals are sensitive to light. Flickering lights, especially at high frequencies, can trigger seizures. This is common in places like video game arcades or clubs with disco lights.
The contrasting light patterns can provoke seizures, particularly in those who also have generalised epilepsy. Additionally, watching television in a dark room with a bright screen can trigger seizures due to the sharp contrast. Sometimes, certain patterns, like checkerboards or vertical stripes, can also induce seizures.
Types of reflex epilepsies. (South First)
Following photosensitive epilepsy, the second-most common type I’ve seen is hot water reflex epilepsy. Most Indians are used to having hot water bath and they first pour hot water on their head. Some may suddenly fall unconscious or they may speak something irrelevant, or look like they are hallucinating.
It is more common in South India because of the propensity for consanguineous marriages. The gene gets shared and this kind of epilepsy is seen more.
For this type of epilepsy, what is first suggested is use lukewarm water for the head; while hot water can be used for the body. In some cases, they may need to take a certain medication about two hours before a bath.
The other common type I have seen is eating epilepsy. Like even the thought of food or a particular type of food can trigger a seizure.
Then there is cognitive epilepsy. That means that thinking of a concept like a complex calculation can cause seizures. Interestingly, orgasms can cause epileptic seizures, and there is also toothbrush epilepsy! There is also startle seizures, which can be triggered by a sudden loud noise, causing the person to suddenly collapse.
Q. Is it always the case that a seizure requires a trigger, such as an emotional experience?
A. Emotions play a large part in triggering seizures, with emotionally-charged songs often causing more seizures than neutral ones. That’s why it’s essential not to hastily attribute seizures to trivial matters without certainty.
For instance, there was a case in Hyderabad where a man lost his wife, who loved Kishore Kumar songs, which were significant to both of them as they were singers too. He experienced musicogenic seizures every time he sang a Kishore Kumar song.
Particular tunes at certain frequencies can affect the auditory cortex and potentially cause seizures, especially if the music is emotionally-charged.
Q. What are some of the unusual triggers for reflex epilepsy?
A. There are different and unique forms of reflex epilepsies. Some epileptic seizures can be caused by normally harmless actions like listening to a type of music or a particular song — called musicogenic epilepsy.
Reading Epilepsy
Some individuals experience reading epilepsy. It is part of language-related epilepsy, which involves processing language, including reading, speaking, writing, and gestures.
People with reading epilepsy may experience seizures when they read, often starting with jerks near the mouth or jaw, which can escalate into a full seizure. This type of epilepsy is cognitive, meaning the process of understanding what is being read triggers specific neurons and causes seizures.
Pokémon Epilepsy
“Pokémon epilepsy” is a unique type of epilepsy. It led to an outbreak of seizures among hundreds of children in Japan triggered by a Pokémon cartoon episode with high-contrast images. Since that incident, there have been stricter regulations for TV screens. Modern screens like LEDs or plasma TVs tend to cause fewer issues compared to older models. LED TVs are considered better than plasma TVs in this regard.
Space Invader Epilepsy
There was also “Space Invader epilepsy” induced by a video game; a group of young males experienced seizures. These instances suggest that a normally-functioning cortex can become hyper-excitable in response to certain stimuli. For example, the occipital cortex at the back of the head, which processes visual information, can overreact to stimuli like high contrast or certain patterns.
Q. What are the management options other than medication?
A. In terms of lifestyle modification, the first step is to identify and, if possible, eliminate triggers.
In managing epilepsy, it’s important to identify modifiable factors, such as dietary habits in “eating epilepsy” or the use of protective glasses in photosensitive epilepsy.
For those with photosensitive epilepsy, it’s important to avoid flickering lights and certain visual patterns that could induce seizures. First, one needs to identify if there is “Sunflower Syndrome’ attached to the seizures.
Sunflower Syndrome is a phenomenon where individuals may seek the stimulus that triggers their seizures. Some patients experience an aura or warning before a seizure, which can be a pleasant sensation for them.
Q. How do you diagnose reflex epilepsy?
A. Diagnosis typically involves a case history and may include scans or other tests.
While epilepsy is mainly based on clinical diagnosis, which is largely dependent on patient history, further investigation can include home videos of seizures, EEG, or MRI scans.
Q. Is there any specific diet that helps epileptic patients?
A. There are no specific restrictions for epilepsy patients. Some believe that eating banana is bad for epilepsy but there is no such thing. Having said that, a ketogenic or modified Atkins diet may be beneficial for certain severe cases.
Q. Do you have any tips to offer for those with epilepsy?
A. Patients with epilepsy who experience seizures should carry identification with their emergency contact information and medical details.
Patients usually get few seconds time when they know they are having an attack. It is good to inform a person who is around them that they are about to have an epileptic seizure.
Q. What should the public do if they see someone having an epileptic attack?
Public awareness of first aid for seizures is important. There is a lot of stigma attached to epilepsy. People tend to hide it from their own family members. This should stop. It is not like they have done anything wrong to have this condition.
Here is what you should do if you see someone having an epileptic seizure:
People should not overcrowd (even out of curiosity or intention to help).
Epilepsy first aid. (South First)
If they are wearing tight clothes, loosen them.
Turn the patient on to the right lateral position. They may choke on their saliva if lying flat on their back.
Do not put anything inside their mouth. Sometimes, they will bite their tongue, or may have frothing or bleeding.
Do not try to open their mouth or jaw.
Time the seizure. That means actually watch the clock and see how long those jerking movements last. Generally, seizures last only for about two minutes. After that, the patient usually remains unconscious for 15 to 20 minutes. That’s normal.
However, if the initial jerking movements exceeds five minutes, then take the person to a hospital. They will need intravenous medication to stop the ongoing seizure.
