Stigma in Epilepsy - Feature Article
Epilepsy: myths and truths
Epilepsy Myths in our History
The history of Epilepsy is long and varied. Epilepsy has stretched far back into history spanning many cultures- each with their own particular beliefs and procedures around it. In fact, epilepsy is sometimes referred to as “the illness with a thousand names,” or the “sacred disease.” Asia and China in the 8th century had a medical manuscript that referred to epilepsy as “Xian” the falling sickness. In India, which has one of the oldest medical systems ever recorded, epilepsy was referred to as “Apasmara;” who is a “dwarf who represents ignorance and epilepsy.” Different cultures came up with their own beliefs on what caused epilepsy and on how to heal it. One of the oddest and extreme myths that appeared in history came from the Roman Empire where it was believed that in order to cure epilepsy one should eat the blood or liver of the gladiators who were killed in the Roman games. Here is a list of some other common epilepsy myths started in earlier times:
- Babylonians, for example, held the belief that those who suffered from epilepsy were possessed by a demon. Other cultures also often regarded people with epilepsy as having been deserted or punished by God and referred to them as “morbus scelestis” (Latin for: the accursed disease, the wicked disease).
Some of the many “cures” included:
- If the person who sees the spasms first urinates in his shoe, tips it back and forth and then gives the patient the urine to drink, the seizure will stop immediately. – Antonius Guainerius 1440
- As the convulsions stem from the spinal cord, pour warm water, 28°C, over the patient's back. -Before 1920
- Cut a black pigeon or a black hen through the middle, put it onto the head of the child with epilepsy and then give it to a dog to eat. -Folk tradition, source unknown
- From the Ancient World to the Middle Ages, cauterizations were also used in the treatment of epilepsy (destroying abnormal tissues by burning, searing or scaring).
Modern Day Epilepsy Myths
Getting on the right track, Hippocrates recognized epilepsy as an organic process of the brain. J.H. Jackson 19th century, formulated the modern definition of epilepsy as “occasional excessive and disorderly discharge of nerve tissue.” Today in the medical field, SEIZURES are defined as “transient occurrence of signs and symptoms due to abnormal excessive neuronal activity in the brain.” And EPILEPSY is defined as “a disorder of the brain characterized by two or more unprovoked seizures.” Despite the scientific advances, there are still a number of problematic notions about epilepsy that persist even now. The following are some modern day myths around epilepsy:
- In Haiti, epilepsy is still considered to be the result of possession by “loas”.
- In Africa, some tribes believe that epilepsy is contagious.
- In 1999 in Hungary, out of 415 patients, 65% consulted with religious figures during the course of their disease rather than seeking treatment through a medical doctor.
- Alternative Medicines: at an AES meeting in New Orleans, University of California at San Francisco showed that out of 187 patients, 56 % used alternative medicines , 68% of those let their physicians know , 15 % took something that could make seizures worse, 15% took something that could interfere with AED’s. Important to note: the following supplements may make seizures worse: Ginseng, Gingko, evening primrose. And Gingko, St John’s Wort, Echinacea, Garlique can induce liver metabolism.
- The belief that if a person has a seizure they may swallow their tongue and that something must be placed in the mouth to avoid this. Note: this is physically impossible. However, because of this myth, people tend to do more harm than good by trying to force something in the mouth which can lead to broken teeth, choking or an injury to the person placing fingers in the mouth.
- Epilepsy and sports/recreational activities: Persons with epilepsy are often excluded or discouraged from participation is sports and recreational activities because of fear of what might occur during the activity. However, in reality this decision should be made on a case-by-case basis. Simply having a diagnosis of epilepsy should not automatically result in exclusion. If this comes up, it is important to talk to your neurologist and have an action plan in place.
Epilepsy and TV/Video Games
Another hot topic in epilepsy that is often questioned as fact or fiction has been whether photic stimulation in video games and television can cause seizures. Some people do indeed have “Photic Induced Seizures;” these are seizures provoked by visual stimulation. Note: Photoparoxysmal response, an abnormal EEG response to light or pattern, consisting of spikes, spike waves or slow waves (which should not be confined to the occipital region, should not be confused with photic driving).
Some of the earlier documented cases around this issue are:
- In 1885, Gowers described Abnormal EEG in a girl who had seizures going into bright sunshine.
- Seizures due to TV content are documented in the 1980’s when Captain Powers induced a seizure in a young man and another occurred in1993.
- An advertisement for “Golden Wonder, Pot Noodle” in UK induced 3 seizures in the first showing.
Then there came the “Pokemon Incident.” This was an unplanned experiment that occurred in Japan, and the most dramatic incident of its kind recorded. On December 16, 1997 a rocket launch sequence of flashing red and blue lights changing at 12.5 sec for 4 sec. was shown on Tokyo TV. It resulted in 685 children going to the hospital: 560 of these children had seizures and the rest had migraines, nausea and motion sickness.
Of note, 75 % of these children did not have a diagnosis of epilepsy. Therefore, given that 7 million children were watching the program, this suggests that 1 in 10,000 had a seizure in response to photic stimulation. Only 24% who had a seizure during the cartoon had previously experienced a seizure.
A literature review by Fisher et al (2005) found that “Photic or pattern stimulation can provoke seizures in predisposed individuals, but such stimulation is not known to increase the chance of subsequent epilepsy. Intensities of 0.2–1.5 million candlepower are in the range to trigger seizures. Frequencies of 15–25 Hz are most provocative, but the range is 1–65 Hz. Light–dark borders can induce pattern-sensitive seizures, and red color can also be a factor. Seizures can be provoked by certain TV shows, movie screen images, video games, natural stimuli (e.g, sunlight reflecting off water), public displays, and many other sources” (Photic- and Pattern-induced Seizures: A Review for the Epilepsy Foundation of America Working Group)
So should we be concerned about this?
It is important to note that there are big differences when it comes to television in the US and the UK which may play an important role:
- USA and Japan (NTSC) TV screens scan at 60HZ
- Europe (PAL standard, phase alternating line) TV screens scan at 50 HZ
- Stimulation at 50Hz produces PPR in 49% of photosensitive patients
- Stimulation at 60Hz produces PPR in 15% of them.
Other factors that may affect seizures are: visual acuity, ambient light, and content and brightness of the screen among others. Video display units should be less likely than TV to provoke seizures as they tend to be smaller, less bright and refresh at 70Hz.
However, video games have not come without controversy. The following are some of the documented cases of problems that occurred with certain videogames:
- 1981 The Lancet “space invader epilepsy”
- 1981 Jeavons (UK) Seizure by a hand held video game.
- 1983 Dahlquist (USA) first US video game seizure report
- 1991 Nintendo starts putting warning on games.
- 1992 UK a child died following a seizure induced by video game.
- 1994 Ferrie, 35 cases, coined the term video game epilepsy
It’s important to note that some patients with a predisposition towards epilepsy might have their first seizure while playing a video game, but this does not necessarily mean that the video game caused epilepsy. However, video games pose a minor risk for patients with no known photosensitivity.
So can individuals with epilepsy and with no known seizures induced by pthotic stimulation safely play a video game? A study by Millet and colleagues in 1999 found that patients with epilepsy with no know photoparoxysmal sensitivity may indeed play video games.
What are some steps one can take to decrease the chance of having Photic Induced Seizures? The following are some recommendations:
TV Recommendations:
- View TV from > 8 feet
- View in a well-lit room, with a small lamp on top of the TV set.
- Do Not approach the TV to switch channels.
- Cover one eye if it is necessary to go near the TV
- Wear polarized glasses on sunny days to reduce flickering reflection from water.
Video Game Recommendations:
- While playing video games the screen should be less than 12 inches or the patient should sit more than 4 times the diagonal diameter from the screen.
- Playing for more than 1 hour should be avoided, and sleep should be maintained.
- People with a personal or family history of photosensitivity should have an EEG examination with photic stimulation before playing video games.
As we have seen, myths about epilepsy have had a long history which has carried over into our modern times. Some of these myths are harmful while others carry a grain of truth in them. What is most important to keep in mind is that we need to keep debunking harmful myths and educating the public and ourselves. Feel free to share this article in an effort to spread education on epilepsy.
