Blog #74: New Studies Reveal High SUDEP Risk of Death in Poorly Controlled Epilepsy

 

     SUDEP (Sudden Unexplained Death in Epilepsy) is not rare. These individuals with epilepsy are found dead without evidence of having had an associated convulsion, i.e., there is no sign of incontinence or tongue biting or thrashing.

    New studies reveal sudden death is more common, dangerously more common, than previously thought. One-third of people with epilepsy continue to have some seizures despite adequate treatment with antiseizure medications. These individuals’ epilepsy is referred to as “poorly controlled” or “uncontrolled” epilepsy. Their risk each year of SUDEP is 1/150. The risk is particularly high in those whose uncontrolled seizures are the tonic-clonic type. Among epilepsy patients whose seizures are well-controlled, i.e., no seizures while on treatment have a risk of SUDEP incidence of 1/1000. ¹             

      What should you do to lessen your risk of SUDEP? Take your medications as prescribed to hopefully decrease the likelihood of having a seizure as it’s more common among those with poorly controlled tonic-clinicepilepsy. Discuss SUDEP with your doctor. You may have to bring up the subject as many physicians are hesitant to discuss possible “bad” news.

      For more information about SUDEP I invite you to read my blogs at LanceFogan.com, titled:  #13: Sudden Unexpected Death During Seizures; #30: Should Doctors Discuss SUDEP with Epilepsy Patients? #57: Sleeping on Your Stomach Increases Risk of SUDEP; and #68: Epilepsy, Risks to a Long Life and Mortality.

1) LJ Hirsch, EJ Donner, EL So, et. al. Abbreviated report of the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011: 76 1932-1938

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #4: An Epileptic Driver Is Jailed In England for Causing A Death Crash

(This blog was originally posted on June 29, 2011)

                      

On June 23, 2011, the BBC News reported that a 33-year-old man had caused the death of a young woman in England. The perpetrator had suffered several epileptic episodes every month, and he had failed to tell the authorities about his condition. The victim was in the front passenger seat when her car was struck by the one driven by the person with epilepsy. It was criminal negligence.

            It is difficult to give up one’s driving privilege, but anyone who has uncontrolled seizures must admit he places himself and everyone else with whom he shares the road in danger.

            All but six states in the United States of America require anyone who experiences blank outs to report themselves to their Department of Motor Vehicles (DMV). These blank outs can be caused by epilepsy, poorly controlled diabetes, heart, blood pressure and other abnormalities. Please visit my website: LanceFogan.com, for further discussion of this in the “Epilepsy Information” tab.

            California is one of the six states where it is mandatory for physicians to report to the Health Department anyone aged fourteen years or over, who has suffered an episode of loss of conscious control on one or more occasions within the previous three years. The Health Department then notifies the DMV that this person may be in danger of harming himself and others while operating a motor vehicle. The DMV sends a questionnaire to be completed by the person and his physician. It is the DMV’s decision, not the physician’s decision, to allow, or to revoke, the driving privilege. The duration required for absence of any loss of conscious control for the revocation to be reversed, varies. It is usually six months to two years. Physicians in California and in the other five mandatory-reporting states who disregard reporting such a patient risk severe liability.

            In my experience, the DMV sometimes doesn’t restrict driving after one or more episodes of loss of conscious control. If the patient is just starting anticonvulsant medications—although this is no guarantee of seizure control—or if the seizures occur only during sleep, or if the patient lapsed in his medication intake and had a “breakthrough” seizure, then the DMV may not revoke the  license. But, usually it is revoked for a period of observation to gauge success or failure of treatment.

            Mandatory reporting by the physician can interfere with the patient-physician trust relationship. Patients who have finally regained their drivers’ licenses from the DMV will return to follow-up clinic. Some of these patients can be seizure-free for years; but then some have a recurrence. The scenarios I’ve been involved in went like this. Physician: “So, how are you? Have you had any seizures or spells?” Patient: “Doc, will you have to report anything to the DMV?” Physician: “Well, yes, if you had a seizure again.” Patient: “No, doc. I’m fine.” The consequence of this exchange is that I was hampered from adjusting the anticonvulsant medication regime. Adults with epilepsy usually require anticonvulsant medications for the rest of their lives. Even if the patient is hiding that he was having more seizures, the doctor’s hands are tied from trying to improve seizure control with the same or with different medications. Physicians can only abide by the patient’s own story and would record in the patient’s chart: “Mr. X reports no seizures.”

 

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. Conner’s Little “Dings” is his first novel.