MedicAlert – Protecting the Narcolepsy and OSA patient when they are unable to speak for themselves

By Dr. James C. O’Brien and Tracy Nasca

Talk About Sleep, Inc. is committed to providing sleep information, education and support for all sleep patients and their families. We support MedicAlert’s efforts to provide emergency responders with valuable clinic information regarding the presence of a sleep disorder which can have a tremendous impact in the emergent care of their patients.

“Patient support is one of my areas of expertise within the Talk About Sleep platform”, says Tracy. “I am in a unique position to be able to correspond with thousands of sleep disorder patients through email and phone calls.  Time and time again, I hear of situations where a sleep apnea patient died or life was otherwise compromised by a trip to the emergency room where medical teams were not aware that the patient had sleep apnea and therefore CPAP was not used.  Untold numbers of narcolepsy patients are needlessly taken by ambulance to the ER due to a cataplexy episode or found asleep in a public setting which might result in them being robbed or assaulted.  We are so pleased to work with the Medic alert Foundation to include sleep awareness in their education process.”

For the patient who has Obstructive Sleep Apnea

Dr. O’Brien reports that sleep apnea patients who require treatment with CPAP therapy are required to wear their interface (mask) connected to their CPAP device whenever they are unconscious from illness, sleep, sedatives, anesthesia, hypnotics, other depressant medications or illicit drugs, and alcohol.  Without the use of CPAP, dangerous cardiovascular conditions can emerge including angina, heart attack, heart failure and arthymias, as well as neurological conditions including stroke and seizure disorders, which may not be initially apparent when one is unconscious and unable to complain of potential symptoms.

Untreated Obstructive Sleep Apnea or OSA, is associated with an increased incidence of hypertension, heart attacks, congestive heart failure, atrial fibrillation and stroke disease.  Additionally, the severity of OSA can potentially be aggravated by laying flat on your back (supine) whether asleep or unconscious.

I believe there needs to be increased recognition of the impact that such positioning can have for the OSA patient.  Any patient with OSA, who sustains a loss of consciousness or an inability to communicate, as a result of a medical emergency should never be positioned flat on their back unless maintenance of the upper airway patency can be assured and continuously monitored.

Additionally, the use of parenteral benzodiazepines or narcotics, can adversely effect respiration and can have negative consequences on upper airway patency and ventilator drive, respectively.  Managing patients suspected of having OSA, who are unconscious or less than alert, should favor the lateral or seated position during transport, depending on the clinical condition of the patient.  In doing so, the patency of the upper airway can be maximized as much as possible during transport.

The MedicAlert® emblem will be a life saver for all those with OSA, who may be challenged in maintaining upper airway patency in times of medical emergency.  Remember, OSA is as common as diabetes, but only 20% are currently diagnosed.

We have a lot of work to do in increasing OSA awareness and improving the management of OSA patients. The MedicAlert emblem is an extremely important way to protect OSA patients when they are unable to speak for themselves. 

For the patient who has Narcolepsy and Cataplexy

Narcolepsy afflicts an estimated 150,000 people with fewer than 50,000 diagnosed.  Patients may require frequent naps as part of their treatment and condition. If sufficient and frequents naps are not achieved on a 24 hour basis, then falling asleep at socially inappropriate times can occur and may can be confused with boredom, lack of interest, disrespect, or socially rebellious behavior. However, none of these behaviors are an accurate explanation for their need to nap frequently through the day and night!  Over a 24 hour period, patients with narcolepsy tend to sleep as much or more than people without narcolepsy, except they sleep in small fragmented time periods rather than one continuous length of time during the night as is considered "normal".

Cataplexy, a sudden loss of muscle control, is an additional condition that affects a great number of persons with narcolepsy. It represents the sudden onset of REM stage sleep or dream sleep, during which the body is generally completely paralyzed, except for the heart, diaphragm and muscles which control eye movements. When one experiences someone during a cataplexy episode, they may have quite suddenly been observed to collapse, without warning or apparent movement on the ground subsequently.  Cataplexy can be triggered by emotions, sudden noises, or certain lighting conditions.  Hearing a joke, laughing or being surprised can create such a total body collapse.

During a cataplexy episode, a person is conscious, despite their inability to be able to move or converse. They are not in any distress unless they were injured from the collapse where they fell. Often these collapses last only a few minutes followed by return of normal motor function and mental alertness.  When a cataplexy episode occurs and passes, it does not require a person with a diagnosis of narcolepsy with cataplexy to have to go the emergency room or receive acute medical treatment unless there was an acute injury related to the collapse itself.  The wearing of a MedicAlert band will help maintain as normal a lifestyle as possibility for the already challenged person with cataplexy and enable them to live as uncompromised in society as is possible.

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