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Be Alert To Social Media Posts Of Epilepsy Patients: It May Contain Warning Of Impending Death

Be Alert To Social Media Posts Of Epilepsy Patients: It May Contain Warning Of Impending Death

A study has found that how people behave on their social media could be a warning sign for people at risk of dying due to an epileptic seizure.

Several studies have shown that at least one epileptic person dies for every thousand people suffering from epilepsy. But many deaths happen suddenly. Sudden Unexpected Death in Epilepsy or SUDEP happens when a person with epilepsy dies unexpectedly with no apparent cause. Even though the physiological mechanisms underlying SUDEP remain unknown, those who have frequent seizures are recognised to be at a higher risk. The best preventive method now is to keep seizures under control with medication but minimising stress and avoiding triggers is also important. Stress and other mood states, on the other hand, are difficult to quantify.

A recent study has found that it might be possible to detect behaviours preceding sudden unexpected death in epilepsy (SUDEP), the main cause of death in adults with uncontrolled epileptic seizures.

Social Media As A Detector Of Death Due To Epileptic Seizures

A study published in the journal Epilepsy and Behavior found that social media could be used to detect behaviours preceding sudden unexpected death in epilepsy (SUDEP), the main cause of death in adults with uncontrolled epileptic seizures. The findings show that epilepsy patients' social media usage increased before their deaths. These shifts in digital behaviour could be used as early warning signs to implement SUDEP prevention strategies.

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Co-author of the study, Rion Brattig Correia based the thoughts on the study on the fact that we get to know when our closed ones are not okay instantly. "They are mumbling, talking too much or perhaps too little, eye contact is different, their tone is off -- we just know it. Sometimes we know it over the phone, only after a few words. What if by detecting this sudden behavioural change, we could save a friend's life?"

Researchers from Binghamton University, Indiana University, and Portugal's Instituto Gulbenkian de Ci ncia (IGC) used several methods to analyse human emotion and any stress signs buried in the Facebook timelines of six epilepsy patients who died from SUDEP. In addition, in the weeks leading up to their deaths, the participants' vocabulary changed, and their sentiments also changed dramatically.

Behavioural Changes Could Serve As An Early Warning

Ian B. Wood, co-first author of the study from Indiana University said, "We discovered significant changes in the patient's digital behaviour that our algorithms might detect as a signal." These changes in the patient's social media participation, as well as the mindset that underpins their posts, could serve as early warning signals of SUDEP and aid in the development of preventive interventions.

The researchers plan to conduct clinical investigations involving more people to collect additional data in order to evaluate the prognostic value of these behavioural signals collected from social media. If patient digital behaviour is found to be effective in predicting SUDEP, the research might be broadened to include platforms other than Facebook, potentially saving lives.

Researchers from the study believe that any digital behaviour data, such as SMS or chat exchanges, phone calls, and other methods, could be used using the method taken by the researchers.

Other Possible Reasons

Despite so much research, the exact cause of SUDEP remains unknown, but some of the other reasons that it might happen include:

Respiration changes

During a seizure, a person's breathing may become paused. These pauses can deplete the oxygen in the blood to harmful levels if they remain too long. Suffocation can also occur if a person's airway becomes obstructed during a seizure.

Changes in heart rhythm

A seizure can occasionally result in a hazardous heart rhythm or cardiac arrest.

Other and combined causes

A combination of respiratory problems and an irregular cardiac rhythm can induce SUDEP.

Managing Seizures Might Help

Studies show that the best way to reduce the chances of sudden unexpected death in epilepsy is the management of seizures by taking prescribed medicines. Some steps that might reduce your chances of SUDEP include:

  • If you have seizures frequently at night, consider getting a seizure alert monitor
  • Identify the seizure triggers and try to avoid them as much as possible
  • Limit your alcohol intake
  • You can better control seizures and other symptoms by going for self-management programmes
  • Make sure you get enough rest
  • Make sure your family and friends are aware of how to deal with a seizure
  • Consult a doctor if you think taking medication is not helping you control seizures

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