Type 1 Diabetes and Dead in Bed Syndrome

Patient Expert

This week has been a difficult week for the diabetes community, when it was revealed that young girl of 13 never woke up.    There have been 4 deaths of type 1 teens recently reported and many of us remember Cynthia Kahn who passed away earlier this year.    We have lost some great people simply "while they were sleeping", which is commonly referred to as "dead in bed syndrome".    It is always alarming, and probably more disappointing that we don't have an answer for how someone, in otherwise good health, could go to bed and never wake up.

Statistics show that per 100,000, 20-60 people with type 1 diabetes under the age of 40 will suffer dead in bed syndrome.    The reason is not clear because autopsies cannot reveal hypoglycemia, but it is thought that a low blood sugar occurs and followed by sudden death caused by cardiac arrhythmia.

An arrhythmia is a disturbance of the heart rhythm, sometimes it is detectable with a stethoscope and sometimes, especially in the young, it is not detectable until it is to late.  Every year there seems a story about a robust high school athlete who dropped dead with no apparent heart health history. These are the stories of missed heart arrhythmia.

For the diabetes community, this is a great reason to challenge the FDA to approve the integration of pump and continuous glucose monitor (CGM) technology that stops the flow of insulin when a low is detected.  The technology is out there, Canada just approved the  Veo, which has been available in Europe for over a year.    And all of this validates the need for the Artificial Pancreas

Another concern should be the lack of research on this phenomenon involving a heart arrhythmia.    Is there a link between type 1 diabetes, low blood sugar and increased risk for arrhythmia?

The best we can do is arm ourselves with the information and watch the basal rate at night to make sure we are not running low.    For families with teens, I think it best to watch for nighttime lows and investing in a cgm is not a bad idea. Awareness and action could make the difference!

Here is a list of sites that offer valuable information about heart arrhythmia and some info on "Dead in Bed Syndrome":

The Heart Rhythm Society- an international leader in science, education and advocacy for cardiac arrhythmia professionals and patients, and primary resource on heart rhythm disorders. (I have linked it to the patient page, but the information is deep on this site.  For those with familial heart health issues check out the difference between Electro Physiologist and cardiologist to make sure you are getting the proper tests.  EPs are the doctors who specialize in heart arrhythmia!)

Children with Diabetes  - older information about Dead in Bed Syndrome (dated 2001), but still interesting read!

Health Central's diabetes expert, Dr. Bill Quick's site  Diabetes Monitor  has a more recent post on Dead in Bed Syndrome (dated 2010)

EndoCrine Today  gave a review of facts and possible link to underlying cardiac pathology that offered insight to the possibility of mitral valve prolapse.