Our data suggest that even a treatment that does not reduce the overall seizure frequency, but that prevents focal seizures from evolving to bilateral tonic-clonic seizures, may be beneficial. Sudden, unexpected death in epilepsy. Oryou may be at low risk but your treatment or lifestyle choices put you at greater risk, e.g. higgs-boson@gmail.com. Sudden unexpected death in epilepsy (SUDEP) is the most important epilepsy-related cause of death, ranking second only to stroke among neurologic diseases in terms of potential years of life lost.1 Several case-control studies have attempted to identify risk factors for SUDEP2,,5 to provide a basis for an individualized risk assessment. Online ISSN:1526-632X, The most widely read and highly cited peer-reviewed neurology journal. The impact of the epilepsy can be profound in terms of injury, hospitalization, reduction in social interactions and in an increased risk of SUDEP (Young et al., 2015). If epilepsy began at age 1, the risk of SUDEP did not increase much until about age 20 or 30, Dr. Camfield said. Seven of 12 (58.3%) of female patients with definite and probable SUDEP and 10 of 41 (24.4%) of controls matched on age and gender were on LTG (p = 0.038). Patients suffering from GTCS have been found to have increased risk of SUDEP 39 when compared to patients with complex partial seizures and absences. Devinsky O. Interaction analysis indicated that the combination of having at least one GTCS and not sharing a bedroom with someone conferred a 67-fold increased risk of SUDEP compared to not having GTCS and sharing a bedroom. SUDEP stands for Sudden Unexpected Death in Epilepsy. Characteristics of cases and controls are summarized in table 1. Since the 1990s sudden unexpected (or unexplained) death in epilepsy (SUDEP) has received increasing attention and been recognized as more widespread than previously believed. BackgroundSudden unexpected death in epilepsy (SUDEP) is rare in well-controlled epilepsy. Having active seizures puts a person at risk of SUDEP, and there are certain types of seizure which research has shown increase a person's risk level further, those being: Tonic-clonic seizures; Nocturnal seizures (seizures which happen during sleep), and; Some people advocate for the use of special pillows to allow better airflow around the face. For these controls, we requested patient records from caregivers across the country and attained records for 1,232 (97%) individuals. SUDEP is a research priority forEpilepsy Society, andresearchers have made an important breakthrough in discovering that an individuals genetic makeup may contribute to the risk of SUDEP. Reed recommended getting evaluated at a level 4 epilepsy center this is a medical center accredited by the National Association of Epilepsy Centers as providing the highest level of treatment. The major known risk factor established for SUDEP is the presence and frequency of generalized tonic clonic seizures. For the remaining cases, where SUDEP could potentially be the cause of death (n = 1,373), patient records from family physicians, hospital records, nursing homes or other institutions, police records, and autopsy records were reviewed (O.S.) It is also possible that failure to classify the type of epilepsy may be a reflection of suboptimal epilepsy management which in itself can contribute to an increased SUDEP risk. This may involve actions such as: Taking medication regularly and at the right dose. For example, a person could help provide first aid, keep the person on their side if they had a generalized seizure, and reposition them after the seizure so their breathing isnt blocked. Doctors claim 80% of them discuss this issue with patients. In a similar fashion, men with SUDEP had a slightly higher age at epilepsy onset and more often had focal and structural epilepsy. Only 4 (1.6%) SUDEP cases did not have a history of GTCS compared to 15.1% among the controls. Take good care of yourself or your loved one. First published inEpilepsy Review, Issue 10, Summer 2014. Dr Greg Rogers explains why talking about SUDEP withan epilepsy specialist can be reassuring and can help to minimise your own risks. Please note - we require a purchase order for bulk orders. 206186, Sudden Unexpected Death in Epilepsy (SUDEP), Her Majesty The Queen: 70 years of service, Queens Memorial Fund & book of condolences, SUDEP is a research priority forEpilepsy Society. You can find out more about what SUDEP Action is doing to support research into SUDEP & Epilepsy risks on our Research pages. Interestingly, we did not observe an increased risk of SUDEP in patients with only non-GTCS. SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. T. Tomson is an employee of Karolinska Institutet, is associate editor of Epileptic Disorders, has received speaker's honoraria to his institution from Eisai, Sanofi, Sun Pharma, UCB, and Sandoz, and received research support from Stockholm County Council, EU, CURE, GSK, UCB, Eisai, and Bial. Even though there are a few reports of witnessed SUDEP without a preceding seizure or following a non-GTCS, this seems to be rare.19,20 In the MORTEMUS study of SUDEP during video-EEG monitoring, all cases followed in the aftermath of a GTCS.21. Copyright 2019 The Author(s). If you are responding to a comment that was written about an article you originally authored: SUDEP = sudden unexpected death in epilepsy. Demographic and clinical characteristics of cases and controls. SUDEP is defined as sudden, unexpected, witnessed or unwitnessed, nontraumatic, and nondrowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom postmortem examination does not reveal a structural or toxicologic cause for death.9 In the present study, we classified SUDEP cases according to Anneger10 criteria. P. Mattsson received research support from the Uppsala County Council, Epilepsifonden, and Selander Foundation. Among the weaknesses are that patient records have their inherent limitations, which can have an effect on, e.g., the possibility to classify epilepsy syndromes, even though we had extensive records for most cases and controls. NOTE: The first author must also be the corresponding author of the comment. Sudden unexpected death in epilepsy in relation to comorbidity (yes/no). Cookies used to enable you to share pages and content that you find interesting on CDC.gov through third party social networking and other websites. Interaction between GTCS during last year of observation (yes/no) and sharing a bedroom (yes/no), defined as departure from additivity of effects, was assessed with the proportion attributable to interaction (AP).18 The formula for AP is (OR11 OR10 OR01 + 1)/OR11, where OR11 indicates doubly exposed (having GTCS and sleeping alone) and OR01 or OR10 indicate either exposure (sleeping alone or having GTCS). 1, 2 3 The majority of SUDEP cases therefore occur in chronic refractory epilepsy present in approximately 30% of epilepsy patients, but a substantial proportion also occurs in the larger population of seemingly well-controlled patients. If you do not allow these cookies we will not know when you have visited our site, and will not be able to monitor its performance. Irregularities in heart rhythm, breathing dysfunction, disturbance in brain circulation, and seizure-induced hormone and metabolic changes have all been suggested as potential causes of SUDEP (Surges, et al 2009). But counting SUDEP cases is hard because SUDEP is not always included on death certificates.5. While a seizure is not a requirement for SUDEP to be diagnosed, recent studies suggest most SUDEP are likely seizure-related. If your seizures are controlled by treatment, your safety may not be affected. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable. Linking to a non-federal website does not constitute an endorsement by CDC or any of its employees of the sponsors or the information and products presented on the website. Together, in some instances, this. This should be considered when counseling individual patients. This constituted our study population. The events leading to SUDEP are thought to be caused by a destabilization of autonomic cardiorespiratory compensatory processes. deciding to stop medication against advice, or drinking alcohol to excess. SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures. Combining high frequency of GTCS and living alone is associated with a dramatically increased SUDEP risk, suggesting that unattended GTCS play a major role. For printed copies, please call our Helpline on 01494 601 400. A review of SUDEP risk factors that included data from four case-control studies identified statistically significant risk factors across all or some of the studies. SUDEP is generally defined as the sudden, unexpected, witnessed or unwitnessed, nontraumatic, and nondrowning death in patients with epilepsy with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a structural or toxicologic cause for death ( Nashef, 1997 ). These cookies perform functions like remembering presentation options or choices and, in some cases, delivery of web content that based on self-identified area of interests. Go to Neurology.org/N for full disclosures. The answer depends on how severe the epilepsy is and the type of seizures she is having. In the general population of people living with epilepsy the risk of SUDEP is 1:1000 (similar to smoking 10 cigarettes a day). This left 1,148 individuals, who served as controls in the present study (figure 1). The study was approved by the Ethics Committee of Karolinska Institutet, which granted that individual informed consent was not needed. Sudden Unexpected Death in Epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. However, the use of special pillows has not been proven to prevent death from suffocation or SUDEP. The more frequent the tonic clonic seizures, the higher the risk. SUDEP occurs more often in people 21 to 40 compared to other age groups.5 Because SUDEP can happen unexpectedly to people who are so young, it can be very shocking for families and loved ones. Submissions should not have more than 5 authors. and classification of the cases was made through consensus. See our Childhood, Adolescence and Risk section for specific information and advice. Together, in some instances, this can prove deadly, causing Sudden Unexpected Death in Epilepsy, or SUDEP. Seizures. Objective We conducted a nationwide case-control study in Sweden to test the hypothesis that specific clinical characteristics are associated with increased risk of sudden unexpected death in epilepsy (SUDEP). If you need to go back and make any changes, you can always do so by going to our Privacy Policy page. These cookies may also be used for advertising purposes by these third parties. As SUDEP is thought to be linked to seizures happening, getting the best seizure control possible is a positive way to reduce risks, including the risk of accident, injury and SUDEP. Conclusions Individuals with GTCS who sleep alone have a dramatically increased SUDEP risk. Characteristics were expressed as mean (range) or proportion. Here are some suggestions to help you think about your safety at home. Learn how to find specialty careexternal icon from the Epilepsy Foundation. AP was estimated at 0.69 (0.530.85) (figure 2). This type of change is unprecedented in SUDEP. 5 Drinking alcohol. Andrew Schomer, MD If you have epilepsy, the most important way to do this is to take your seizure medicine as prescribed.1. successful epilepsy surgery. However, Epilepsy Society is unable to provide a medical opinion on specific cases. Among comorbid diseases, a previous diagnosis of substance abuse or alcohol dependence was associated with excess risk of SUDEP. Find in-depth information on anti-seizure medications so you know what to ask your doctor. Sudden Unexpected Death in Epilepsy (SUDEP) refers to the death of a person with epilepsy, without warning and where no cause of death could be found. From this, it seems reasonable to infer that improved control of an . Results: The total score on the revised SUDEP-7 ranged from 1 to 7, mean = 3.4 (SD 1.8). Decedents with SUDEP lived alone to a larger extent than controls, 68.2% vs 26.5%, and even if they shared their household, they were less likely than controls to share a bedroom. If medicines do not work, consider other treatment options such as. 1 2. Order this leaflet from our onlineshopas part of our 'first five free' offer, or download the pdf using the link below. What is known about the mechanisms underlying SUDEP? Although SUDEP is more common in people with frequent seizures it has also occurred in people who have had very few seizures. There are a number of devices for night-time seizure monitoring that are now available for use in the home. Background: Sudden unexpected death in epilepsy (SUDEP) is the most important epilepsy-related cause of death, occurring in at least 1:1000 people with epilepsy each year.The risk of SUDEP increases dramatically in uncontrolled epilepsy. There are positive steps you can take to help reduce your risks; Check out our Taking Action Against Riskpages for top tips and free resources to help. Our observations are in line with a previous report of a protective effect of nighttime supervision, regular checks throughout the night, or use of listening devices to detect seizures.5 Furthermore, a recent study from 2 epilepsy residential care homes reported that SUDEP was more common in the center with less supervision at night.23 The greatest novelty in our findings, shown with interaction analysis, is the supra-additive increase in SUDEP risk for individuals having at least one GTCS during the last year of observation and sleeping alone. The rate of SUDEP is estimated to be around 1 in 1,000 people with epilepsy a year, typically a young person 20 to 40 years old with poorly controlled tonic-clonic seizures. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you, and how to reduce them so you can feel more in control. As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk. Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable. But what is SUDEP? Much is already being done to try to understand what causes SUDEP, but more research is needed. If seizures continue, consider seeing an epilepsy specialist. Emphasis was on attaining the doctor's or police report regarding circumstances surrounding the death, including documented interviews with eyewitnesses, caregivers, and relatives. A number of previously proposed risks were not associated with SUDEP, once we adjusted for GTCS frequency. and apply to letter. Saving Lives, Protecting People, National Center for Chronic Disease Prevention and Health Promotion, Sudden Unexpected Death in Epilepsy (SUDEP), Epilepsy Can Follow Traumatic Brain Injury, U.S. Department of Health & Human Services. Sainju is a 2016 CURE Epilepsy Award grantee, whose research found that respiratory response to high carbon dioxide levels in the blood may be weakened in some people with drug-resistant epilepsy, which puts them at an increased risk for severe breathing abnormalities and SUDEP following a generalized convulsive seizure. A possible protective effect of VNS has been discussed before,29 but our data should be interpreted with caution given the small numbers. This is a rapidly developing area of research. During follow-up from July 1, 2006, to December 31, 2011, 9,605 deaths were identified by linkage to the National Cause of Death Registry (ICD-10 classified since 1994).12 Eligible SUDEP cases were all deaths with epilepsy mentioned on the death certificate (n = 1,276), together will all individuals who died during 2008 (n = 1,890) (figure 1). Interestingly, the unknown type of epilepsy remained a risk factor in all models. Submitted comments are subject to editing and editor review prior to posting. Research indicates that around 42% of epilepsy deaths may be avoidable. The risk of SUDEP for children with epilepsy is lower than adults (approximately 1 in every 4,500 children with epilepsy), but it is something to be aware of and to discuss with your childs clinician. Read any comments already posted on the article prior to submission. 'Orthopedic Surgeon'. Centers for Disease Control and Prevention. The other variables were not significant predicators of SUDEP. SUDEP can be a difficult subject to talk about. Although most people with epilepsy live long and healthy lives, their increased risk of death compared to the general population is a serious concern. CDC supports research to help us understand SUDEP better. Missing medications or not taking seizure medicines as prescribed, because it can lead to more seizures, may also put people at higher risk for SUDEP. The Epilepsy Foundation and partners also support other SUDEP researchexternal icon. Learn more about the role of seizure alerts. 3 Many years of living with epilepsy. This includes driving, sleep, work and travel. More guidelines and information on Disputes & Debates, Patient-Centered Treatment of Chronic Migraine With Medication Overuse: A Prospective, Randomized, Pragmatic Clinical Trial, Neurology | Print ISSN:0028-3878 3,4 Drinking alcohol. Information on psychiatric comorbidity, pulmonary disease, and cardiovascular disease was obtained from ICD codes in the national patient registry (from 1997 to death or index date). More . The presence of nocturnal GTCS during the last year of observation was associated with a 15-fold risk (OR 15.31, 95% CI 9.5724.47). We detected no increased risk associated with a medical history of ischemic heart disease, heart failure, myocarditis, cardiomyopathy, or arrhythmias. SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland). Is my child at risk for SUDEP? Keeping a diary of when your seizures happen. (1, 2) Another important cause is termed 'sudden unexpected death in epilepsy' or 'SUDEP'. Further information was collected on epilepsy onset, duration of epilepsy, type of epilepsy, etiology,15 history of tonic-clonic seizures (in this context including both generalized tonic-clonic seizures and focal to bilateral tonic-clonic seizures in accordance with most previous case-control studies of SUDEP),14 presence and frequency of tonic-clonic nocturnal seizures during the last year of observation, presence of other seizures during the last year of observation, history of nocturnal seizures, history of tonic-clonic nocturnal seizures, presence of tonic-clonic nocturnal seizures during the last year of observation, intellectual disability, antiepileptic drug (AED) treatment, and whether the patient had undergone epilepsy surgery or had ongoing treatment with vagus nerve stimulation (VNS). The Importance of National Epilepsy Awareness Month, 3540 Crain Highway, Suite 675,Bowie, MD 20716, 2022 Epilepsy Foundation, is a non-profit organization with a 501(c)(3) tax-exempt status. The risk of sudden unexpected death in epilepsy patients (SUDEP) persists with no identifiable cause, and families are often unaware of this risk. This is especially important if the diagnosis of epilepsy is not certain or the seizures are not controlled. 2. The reasons for SUDEP are not clearly understood. DOI: https://doi.org/10.1212/WNL.0000000000008741, Flow chart describing the selection process, Odds ratio (OR) (95% confidence interval [CI]) of sudden unexpected death in epilepsy by combinations of generalized tonic-clonic seizures (GTCS) and living conditions, Sudden unexpected death in epilepsy: assessing the public health burden, Incidence and risk factors in sudden unexpected death in epilepsy: a prospective cohort study, Sudden unexpected death in epilepsy: a search for risk factors, Risk factors for sudden unexpected death in epilepsy: a casecontrol study, Combined analysis of risk factors for SUDEP, Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors: report of the guideline development, dissemination, and implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society, Who to target in sudden unexpected death in epilepsy prevention and how? What risks do I or my family member have for SUDEP? Investigation into the development and the benefit of such monitors is ongoing and at this time there is. While some studies found that rates of SUDEP are lower in children, others found rates similar to those seen in adults. No one can say exactly who will be affected by SUDEP, but research has shown there are some things that can put you at increased risk: Tonic-clonic seizures The biggest risk factor for SUDEP is having uncontrolled tonic-clonic seizures. Check out our country specific SUDEP statistics via the buttons below: We dont know what causes SUDEP to happen, or who will be affected.But researchers have identified key risk factors that can increase risk of SUDEP and in some cases, there are positive things that can be done to reduce risks. We send monthly e-newsletters to keep you informed with tips for managing epilepsy, the latest news, inspirational stories, fundraising opportunities and further information from Epilepsy Society. Be aware of and avoid any potential seizure triggers whenever possible. However this is often not practical or desired, and more scientific evidence is needed to prove that it is effective in preventing SUDEP. The information was collected identically using a standardized protocol for both cases and controls. No association between level of education and SUDEP was seen after adjustment for GTCS frequency. Living alone was associated with a 5-fold increased risk of SUDEP (OR 5.01, 95% CI 2.938.57) and interaction analysis showed that the combination of not sharing a bedroom and having GTCS conferred an OR of 67.10 (95% CI 29.66151.88), with AP estimated at 0.69 (CI 0.530.85). Many Epilepsy risks can be reduced - the most important step you can take to avoid SUDEP is to minimise the number of seizures you have. T. Andersson and S. Carlsson report no disclosures relevant to the manuscript. Reference 1 must be the article on which you are commenting. Methods The study included 255 SUDEP cases (definite and probable) and 1,148 matched controls. There are known risk factors which increase the chance of death in people with epilepsy. Because many epilepsy-related deaths occur overnight with people found lying face down there is speculation that this position may interfere with breathing and contribute to the deaths. Our results indicate that 69% of SUDEP cases in patients who have GTCS and live alone could be prevented if the patients were not unattended at night or were free from GTCS. Seizure control strongly influenced SUDEP risk. The main reasons why people with epilepsy die are accidents, drowning, Status Epilepticus, suicide or Sudden Unexpected Death in Epilepsy (SUDEP). Compared with sharing a bedroom, sharing household but not bedroom was associated with a twofold increased risk and living alone was associated with a fivefold increased risk of SUDEP (OR 5.01, 95% CI 2.938.57), even after adjustment for GTCS frequency and other covariates (table 2). Many of these risk factors can change over time, or can be changed to improve seizure control and reduce risks. It refers to deaths in people with epilepsy that are not from injury, drowning, or other known causes.1 Most, but not all, cases of SUDEP happen during or right after a seizure.1. However, some families have found monitors useful as part of a risk reduction plan. Comparing cases and controls indicated small differences in the type and causes of epilepsy, but low education was slightly more common among cases (table 1). Sudden unexpected death in epilepsy in relation to the combination of generalized tonic-clonic seizures (GTCS) and living conditions. They help us to know which pages are the most and least popular and see how visitors move around the site. The best way to prevent SUDEP is to have as few seizures as possible. In addition, the authors extracting information were not blinded to the outcome, and were aware of previous reports on SUDEP risk factors, which may introduce bias. Epilepsy Society, UCL and Congenica collaborate in genomic study to identify causes of SUDEP, Epilepsy Society is a registered Charity No. The large SUDEP risk increase from GTCS, coupled with epilepsy monitoring unit evidence 39 demonstrating that a GTCS was always the precipitating event of SUDEP, strongly suggests that GTCS are not just associated with SUDEP but, rather, are in the causal path to SUDEP. 1 Top of Page Read more about, Learn how to better control seizures and other symptoms with. The group focal and generalized epilepsy was a risk factor before adjusting for GTCS, likely reflecting the severity of the epilepsy in this group. Nocturnal GTCS were associated with an increased risk of SUDEP. Speak to your clinician about whether a device is something that you might choose to use. In those experiencing GTCS during the last year of observation, the risk was increased 27-fold (OR 26.81, 95% CI 14.8648.38). As a general group, people living with epilepsy are at a 1 in a 1000 risk of SUDEP per year. T.T.) "By the time you're 70, you would have an 8% chance of dying from SUDEP," he said. Cookies used to track the effectiveness of CDC public health campaigns through clickthrough data. As a general group, people living with epilepsy are at a 1 in a 1000 risk of SUDEP per year.
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