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WEDNESDAY, June 19, 2019 (HealthDay News) – A sudden and unexpected death related to epilepsy is rare and seems to affect mainly people with convulsions difficult to treat, but a new study suggests that even people with epilepsy can not treat it. Well-controlled epilepsy may be at risk.
This was especially true if anyone had missed his last dose of medication or was deprived of sleep, the researchers discovered. Drinking too much alcohol has also been implicated in some of the unexpected Sudden Death Related Epilepsy (SUDEP) cases that they have studied.
"If you have high blood pressure or high cholesterol, you will probably be able to take your medicine in only 80% or 90% of cases, but if you have epilepsy and you miss a dose, can be deadly if the hormonal factors are present, "explained the main author of the study, Dr. Orrin Devinsky. He is Director of NYU Langone Health's Comprehensive Epilepsy Center in New York.
Devinsky said the researchers did not want to scare people with epilepsy and their loved ones. He added that sudden and unexpected death in epilepsy is indeed rare.
"For the average person with epilepsy, there is about 1% chance of dying from SUDEP over a year," he said.
However, the syndrome secondary to epilepsy can affect all people with epilepsy and Devinsky wants people to be aware of the risks and take action, especially to make sure to take the drugs for epilepsy according to the guidelines, to reduce the risk of sudden death.
Many people are unaware that sudden death is a risk of epilepsy. In fact, the current study found that only 16% of the immediate family members of SUDEP's deceased had been informed that this was a possibility.
Devinsky said that these conversations were uncomfortable and that many neurologists would only talk about SUDEP if someone had forgotten to take his medication. But he said it was similar to a cardiologist warning you that you have a risk of heart attack if you have high blood pressure and high cholesterol.
Previous studies have shown that people who had recently had a seizure or who had had difficult crises were more likely to die suddenly. It was also thought that people who had generalized tonic-clonic seizures were more likely to suffer from SUDEP. These are convulsive attacks to the whole body that cause convulsions and loss of consciousness.
This study examined cases submitted to the SUDEP North American Registry, created in 2011. There were 237 cases of probable or definitive SUDEPs. Researchers investigated these cases, gathering information from family members and medical records.
Deaths occurred at any age, from one to 70 years old. The study found that the average age of death was 26 years old.
Fifteen percent of the dead had no seizures for one year before their deaths. Four percent had never had a tonic-clonic crisis, according to the results. About one-third of those who died had fewer than 10 generalized tonic-clonic seizures during their lifetime.
In most cases – 93% – the PEDSU occurred while the person was alone. Seventy percent of the deaths occurred during sleep.
Only 37% had taken their last prescribed dose of drugs for epilepsy. According to their close relatives, about a third of them sometimes forget drugs, skip doses, stop taking their medications or take less of a medication to reduce their side effects.
Devinsky said that the reason for these deaths was still not clear. He added that after a seizure, the brain could remain in a stopping position for a short time and that the usual warning systems might not work properly. Thus, if an epileptic seizure prevents the patient from breathing, his brain may not send the typical excitation signals for him to move and make breathing possible.
The results of the study were published online on June 19 in Neurology.
Dr. Jorge Burneo wrote an editorial accompanying the study. He said that one of the key messages of the study is that SUDEP does not only affect people with epilepsy that is difficult to treat.
"Those who are fairly well controlled can die from an epileptic seizure. Epilepsy does not have to be serious for you to run the risk of PEDSU," he said. said Burneo. He is Professor of Neurology, Biostatistics and Epidemiology at Western University in London, Canada.
He added that families need to be aware that SEDEP is a possibility and that people with epilepsy must be "very loyal to taking their medications".
Devinsky said that people with epilepsy should create a system of taking their medications. "Create routines around taking your medicine, do not brush your teeth and do not go to bed before taking your medicine," he suggested. Be especially careful in times of stress and when your routine changes, he added.
Both experts said to talk to your doctor if you are having trouble taking your medication because of side effects or for financial reasons. There are a number of medications available to treat epilepsy. So there are usually options.
More information
Learn more about the Foundation's SUDEP for Epilepsy.
SOURCES: Orrin Devinsky, M.D., professor of neurology, neurosurgery and psychiatry, and director of the Comprehensive Epilepsy Center, NYU Langone Health in New York; Jorge G. Burneo, M.D., MSPH, Professor of Neurology, Biostatistics and Epidemiology, Western University and London Health Sciences Center, London, Canada; June 19, 2019, Neurologyonline
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