A pause in breathing could reduce oxygen in the brain or blood in a life-threatening way. Other possibilities center around the heart. SUDEP also more commonly occurs with convulsive seizures called tonic-clonic seizures previously known as Grand Mal compared with other seizures. Specifically for SUDEP, the most important thing is to make sure to take prescribed seizure medication.
To help prevent injury or death for all seizures, consider making changes to increase the safety of the environment around someone with seizures. Practicing water safety is an important way to protect someone with seizures from death by drowning.
It is possible to drown in only a few inches of water. A person with seizures should give a doctor information about seizure timing, duration, and frequency, and after what events seizures occur. Some people keep a seizure journal to note information about what was happening at the time a seizure occurred, including time of day, alcohol or caffeine consumption, mood, sleep status, and other factors. If a person has a seizure for the first time, they should see a doctor immediately to receive a diagnosis.
Once a doctor has come up with a diagnosis and a treatment plan, the person should consistently check in. If seizures become more severe, more frequent, or change in any way, a person should talk to their doctor again. If a person wants to go off their seizure medication, they should also check in with their doctor to discuss the benefits and risks.
While there is not much a person can do to prevent SUDEP, except to continue their medication, there are ways of reducing the risk of accidental death during a seizure. Living with someone or using the buddy system during water activities are other ways to reduce risk when living with seizures.
Researchers suggest that glucosamine, a dietary supplement, may help to reduce brain cell excitability, bringing us closer to a new therapy for…. Please enable scripts and reload this page. Turn on more accessible mode.
Turn off more accessible mode. Skip Ribbon Commands. Skip to main content. Turn off Animations. Turn on Animations. Our Sponsors Log in Register. Log in Register. Ages and Stages. Healthy Living. Safety and Prevention. Family Life. Health Issues. Tips and Tools. Our Mission. Find a Pediatrician. Text Size. Page Content. The foundation tries to raise awareness of the risk factors, such as: Having convulsive seizures , also called tonic-clonic or grand mal seizures Seizures that happen during sleep , also called nocturnal seizures Missing seizure medications.
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Follow Us. Back to Top. For example, a year-old man with generalized seizures since age 12 died in his sleep, which is common with SUDEP.
The medical examiner found mild coronary artery thickening and used coronary disease as the cause of death. Epilepsy was not even mentioned on the death certificate. The same thing often happens when people develop pneumonia after involuntarily inhaling material in their mouths during a seizure and subsequently die. The epilepsy is rarely cited as even a contributing factor in death; pneumonia is cited instead.
Making all of this dramatically worse is the neurologists and epileptologists who — out of arrogance, ignorance, or fear — refuse to tell all of their patients about the risks of death in epilepsy.
For some reason, pediatric oncologists are able to talk about mortality even with little children, but epilepsy specialists do not even uniformly tell adults of the risk.
Just 26 percent tell the majority of their patients, 61 percent inform a few, and 7. And even with those pathetic results, the doctors who told their patients said that most of the time, it was only because the patients had asked about SUDEP.
While no studies have been conducted to determine how many neurologists tell those with epilepsy about all of the risks of death associated with the disease, the numbers are certainly smaller. Not only did I have no idea SUDEP existed until recently but doctors and officials at the Epilepsy Foundation have told me in recent weeks that I likely survived this potential killer. After experiencing a convulsion many years ago, I stopped breathing while still unconscious.
I made no sounds to suggest there was a problem, but someone noticed I was turning blue. After being alerted, another person shook me aggressively and then slapped me hard a couple of times.
I resumed breathing. Whether to tell a patient of this risk is literally a life-and-death choice made by the doctor, often with no input from the patient. If those of us with epilepsy know the risks, we can take precautions that we otherwise might not. Devices can alert family members and caregivers that a seizure is occurring so they may administer rescue medication, roll the person on his or her side, or stimulate the person to improve respiration and arousal after a seizure.
We must inform patients and families about the risk of death. Russell experienced eight seizures in seven years. Doctors considered him controlled. Then, as he was nearing graduation from college, he was found dead on his bedroom floor.
How are we to be okay with the idea that we may have failed to protect our son by every means possible? Had Russell understood what he was really up against, would he have been more diligent with his meals, medication, and sleep? Would it have made a difference?
But it hurts so very much to have to wonder. I do not know the answer to that question, but I know without a doubt in my heart, Evan would have wanted to know about his risks. Another young man, John Paul Popovich, also died at 19, when he was home on a visit from college.
A story I have heard frequently is about people who went off of their anticonvulsants at the suggestion of a neurologist without being told of the risk of SUDEP, and then died soon after.
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