Type 1 Diabetes and Dead in Bed Syndrome

By now it is known that Eilish passed while she was sleeping, which is referred to as "dead in bed syndrome." Ann Bartlett wrote a very complete piece about this on HealthCentral:

"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."


I remember reading somewhere that in an autopsy it is very hard to see if the cause of death was hypo because everyone that dies including non diabetics have hypo blood during autopsy from natural changes to the blood after death.

Also am I the only one that is very nervous before going to sleep every night? I am always really scared I will go hypo in my sleep.

ok I have an agressive treatment plan and about to switch insulins but I am now worried. I have to say this if I were to go in my sleep may be eaiser on me and my family but I wish to stick around a little longer. I am grateful that so far my son is not a diabetic even with all the rish factors although I teach him all about it at 4 years old.

This makes me very sad, and officially scared shitless. This has to be the worst possible part of diabetes.

That is a very good plan to not eat or bolus before bed, but I still do it, but I do stay in normal range if I avoid food and bolusing before bed.

well, 4 out of 2 million? You figure the odds…
about the same as one winning the Lotto? or worse
I don’t know any Teen with T1 that has controlled BG’s, do you? probably about as rare as winning the lotto…

Got T1 some 15 yrs ago, went hypo alot also using NPH and Lantus… always woke me up…
You want to Really worry yourself ? We can give you stats on so many people dying of the strangest things? you’d be terrified leaving your Home…
You just do the best you can ( Strive for 6% A1c’s or Better, try your best to avoid going above 140’s and below 70’s and Hope for the best, be concerned,but not OCD about it…

I got a Few Vitrus Eye Hemmorages… All cameOver nite… woke up in the Morning and couldn’t even see any daylight comming into the eye and for weeks thereafter…
Eye Dr.'s? They don’t have the answer either …Just do some lasers and hope for the best…

after you have 1-2 of them and learn how to cope and deal with them? You prepare for the next one’s…I even was driving a few days later…! It’s legal to drive with 1 eye in my state…

I’d have even better BG’s if They’d make a Real Fast Acting Insulin, like works in 15 min and is in Full effect with in an hour or less, like real Insulin does… Then CB’s would come down alot faster than taking 2-3 hrs to get into 80-110 range… Damn Novlog takes 2-3 hrs at best…Apidra? Marginal…
And these so called “Long Lasting” Insulins of Lantus and Levimire? More Over Priced Baloney!
And CGM’s? Only accurate 30% of the time?And How do you like sticking that Harpoon Into yourself to make it work? And Doesthe Alarm wake you up at nite? For most it doesn’t… Another Overpriced thing to give us a false sense of Security… that doesn’t work…Just like our Meters, Nice an accurate aren’t they? and Nice how those Test strips cost “so Little”… aren’tthey? While in other countries they cost 25% as Much… We need to be able to afford to test EVERY HOUR…!

But, it’s what we got right now and we just do the best we can with it, until (hopefully) something better comes along… Like Going in for Islet Cell injections every 6 mos would be fine with me…
Keep the Faith! They’re working on it!

But, The Squeaky wheel Gets the oil… = Keep Bitchin and Never be satisfied, otherwise they will divert $ & reserach to some other Disease…and think WE’RE CURED! Ask the ave person about T1 and they think it’s all but cured…

And Now is the time to Complain the Most, why? Mid Term Elections…that’s why… Go to the rallies and ask them what they will do for T1 Diabetes? Send them Letters telling them your story…Every week!

I rarely sleep more then 4 hours at a time due to paranoia and 3rd shift with kids. So your not the only one who is scared to sleep.

My husband’s aunt died this way as a young adult. His grandmother told me that they never understood why and that her “medicine” was right on the nightstand. I don’t know whether she meant insulin or glucose or what. When my husband introduced me to his grandmother as a diabetic, I’ll never forget the look of heartbreak on her face. So it has been on my mind for years and this certainly stirs some deep fears for many of us.

My CGM is accurate and has woken me many times, but nighttime lows have always plagued me. I don’t go to bed with IOB if I can help it and make sure I eat my dinner 4 hours before I go to sleep. I keep a basket of juice boxes, glucose, and other snacks next to my bed. I’ve woken from countless lows. I just hope we all do. My heart breaks for the families and the questions they will never have answered.

nph should not be banned! sure it is responsible for most hypos, but i think it works quite well, with a little caution.

This has to be my biggest fear with my newly dx’ed niece. she is only 2 and so I decided when we got her on the pump to go ahead and add the CGM it was A hard decision to do that I mean asking her to endure another stick but I feel confident we made the right decision to ensure her safety My sis and I both have CGM’s as well since I have no awareness and she was getting to that point,.it has woken us a many of times now and gives us that peace of mind. I just hate it for this family. It is sad that we all work so hard on our care sticking with the carb counting and dosing and testing and exercise but yet this is still possible. I do know that I refuse to live in fear because I know that I am trying my hardest to care for myself and that is all I can do. As for my niece yes I do fear the possibilties I mean she is only 2 why should this even be possible for kids you know?
13 is so young and to think your child was okay when you sent them to bed and then this? ugh My prayers are with them. As for us we tend to go to bed with a bg no less then 120 mg/dl and try to ensure it has been A couple of hrs prior to bed when the last dose was given. Even though we have pumps that give us more freedom we tend to keep on a schedule for this reason with our meals and doses

This is really scary. When I was on MDIs with Lantus and Humalog I’d go to sleep and just crash out and we couldn’t figure out why. So, the Endocrinologist set me up on a CGM for three days and found out I was dropping into 30 mg/dL because of the Lantus shot. Needless to say, I was put on the pump and a CGMS almost immediately afterwards and told to take the Lantus shot in the morning and take a large carb breakfast to counteract the Lantus until my pump showed up.

Now the CGM and pump have reduced my fears of going low, but I still have the alarms set to buzz loudly and be really annoying to get anyone around me to do something if I do happen to go low.

Is it par for the course to have nocturnal hypos if you’re T1?

There’s a good article in the March 2010 issue of Human Pathology about this. One of the hypotheses being investigated is whether a hypo episode triggers an underlying heart problem like a long QT interval, producing a fatal arrythmia.

I’d never heard of this- and having been T1 myself for 27 years and now with a 5-year-old with it… 20-60 people out of 1000- definitely need to get the FDA on board with CGM- and then get those insurance companies behind it.

No, it shouldn’t be. Now that I’ve been on the pump, I haven’t gone hypo at night once. While taking Lantus it was a daily occurrence.

I take Lantus, but have not had a severe episode. Does this depend on the person? The thing that kind of freaks me out is that you can have a severe one in your sleep and not realize it, right?

It depends on the person, but it happens that my reaction is going seriously hypo.

I sleep for 5-6 hours normally, but wake up 1/2 way through to test. Sometimes Im up for 1+ hours to make sure my BG is level before bed.

I still have decent hypo awareness, but the other night, I was super tired, went to sleep @ 2am and was woken by the Dexcom alarm at 5am did a test and was 43. I have the dex set to vibrate so it work wake the little one (still sleeps with us), but that didnt wake me. The ringing alarm did. First time thats ever happened.

When I was on Lantus I would drop between 2 and 4 am. Now that I’m on a pump, I find my night glucose level rises steadily during that period. I need to make an adjustment to my night basal I think. I’ve had several days where the Dex wakes me because I’m over 180. Lantus, even though it is supposed to have no peak, does have a bit of a peak 6-8 hours after injection. I’ve read that most diabetics require less insulin over night. My over night basal is actually increased from my day time.

I’ve never been happier that I tend to run high at night since I read about this child. It could have been any one of us. I can’t help but feel I’ve been taken down a peg. You may work for excellent control but sometimes the dragon wins.

That’s between 20 and 60 out of 100,000 people with diabetes who die before age 40.

Two orders of magnitude from what you wrote here

And that doesn’t take into account what percentage of PWD don’t die before age 40.