• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Dead in bed syndrome

My friends granddaughter died from this - she was only 19 and left a toddler- it's very sad and a terrible thing for a family to have to experience
 
Whilst it is a horrible thing to have happen, I suspect it's very hard to research, as there doesn't seem to be a lot of commonality between cases, other than age, and the frequency is very low. I guess it will remain a mystery unless someone can centrally gather the diabetic records of all those who have suffered it and start trying to see if there are any patterns. The way the health service works I suspect this is astoundingly difficult.
 
It's fortunately very rare and as Tim says hard to research as it could be caused by a variety of things
There has been one case where someone who was found dead in bed was confirmed to have hypoglycaemia at the time. He was wearing a CGM. (and he had the cgm because he had frequent, severe hypos) http://www.ncbi.nlm.nih.gov/pubmed/19833577
Diapedia suggests
"The proximate cause of death is likely to be a cardiac dysrhythmia, possibly triggered by hypoglycaemia against a background of autonomic dysfunction." (ie autonomic neuropathy playing at part)
http://www.diapedia.org/acute-and-chronic-complications-of-diabetes/dead-in-bed-syndrome

There are a couple of case studies though where the person was thought not to be hypo.
One where they examined the DNA and the young man was found to have a genetic mutation which could cause the heart to go into arrhythmia
And yet another one who probably had DKA.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3970469/
http://www.ncbi.nlm.nih.gov/pubmed/24641923
 
None of which show a pattern and all have different diabetic symptoms. Is it possible that all three had a genetic predisposition to a heart problem and various different things triggered it. It wouldn't necessarily have mattered whether they were diabetic (and actually although that is a common link between many of these things it is a correlation and not a cause)?
 
This is scary ..I was on insulin am and pm and twice was awoken form a deep sleep where it felt like some one was kneeded my scalp I felt myself coming up through a tunnel was the weirdest experience I have ever had... I awoke with a start wondering who was kneeding my head ....and thought straight away test sugar level ..it was 2.8 i was stuffing my face with food middle of the night ..made appointment at the docs who said cut out the Humilog at night ...... Very scary I must admit
 
I've only been a type 1 since a wk after my 40th birthday. I'm now 44. I've been reading stuff on this site over the last 6 months n find a lot of conflicting info. All about freaking out about having high blood glucose. Slightly high from Time to time isn't such a concern for the medics staff at my docs. They r more concerned about hypos. After reading this I feel sad for the families of the youngsters who died. I feel a great loss as well as I wanted children but have none. Its time to some agreed universal guidelines as there are none. No one seems to be able to agree. Diabetics are entitled to a good quality of life the same as everyone else. Also noone has mentions about stress. Yet we know that's a big silent killer! Young people are feeling stress too much these days n r not as chilled out as we think. Big love.
 

I was admitted to hospital at diagnosis having suffered an SVT (Supraventricular tachycardia) where basically the two halves of my heart were beating out of time with each other, I had a heart rate of 188 at rest and had to have my heart chemically stopped and restarted to get it back in rhythm.

My bg level was 19.something mmol/L and I had an HbA1c of 12.6%, a cardiologist was convinced that a mini stroke was to blame but various tests ruled that out and as my bg levels were so high a SDN was sent to see me to put me on MDI treatment, I was first put on an intravenous insulin drip to get my levels down, anyway she said immediately that it was my high blood glucose levels that had caused the SVT but my cardiologist still rejected this idea and carried out numerous other heart checks all turned out to be normal. Quite why two different specialists should not concur over a diagnosis frankly was worrying.

I write this to pose the question could DIB syndrome be due to high bg levels rather than hypos? I didn't know anything was wrong, it was only at a routine doctors visit that he sent me straight to A&E after failing to get a blood pressure reading!! I walked into A&E and was immediately told to lay on a stretcher and wheeled straight into the resuscitation unit when it all hit me high series it could have been, had they not been able to restart my heart on the second attempt they would have had to sedate me and use a defibrillator to stop and start my heart.

Probably unconnected but I have thought about this often at how normal I felt with a heart beat of 180 + and very high bg levels.....
 
wow what a terrible time you have been through, hope all is good now
 
Hi
This is the first time that I have been on the forums. I've been a Type 1 diabetic for 25 years I'm pretty well controlled. I feel very strongly about the dead in bed syndrome and how awful it is. It frightens me how in your every day routine of life you could just die when you are asleep. At least if you are crossing the road you can take avoiding action to miss a bus that could hit you. I've only had one serious hypo which resulted with me having a seizure during the night about 10 years ago where I woke up with an ambulance chap next to me, I was obviously very confused why he was there. Lucky my wife was there to call an ambulance. Following this episode I researched into different types of insulin's that gave you better warning signs and luckily my doctor was okay to switch me to a animal Porcine type. This was so much better and felt less aggressive that the quick acting Actrapid that I was on. Since then I have always been wary about making sure my sugar levels are okay before going to bed and that I have eaten enough as a snack.
About a year ago I had a very horrible low sugar waking up experience which really frightened me. I felt like I was trapped in a computer screen with no way of getting out, I think my mind was a wake but my body was still asleep. Luckily I managed to awake but my heart felt like it was beating slowly but very harshly like it doesn't normally beat. I had forgotten about how my heart felt until the link with the heart was mentioned in the forum.
I just wondered if anyone else had had a similar experience of having a bad hypo in the night with their heart pounding?
More research definetly needs to be done on the dead in bed syndrome! I I don't know if there is a device that can be easily worn and that can pick up if your heart is working at a different rhythm and then wake you up.
 
Thanks for the Link. It was interesting on the link that it says that rates of DIB syndrome went up with the introduction of human insulin. Does anyone know why it is more common with those under 40?
Yes very adorable, We have a couple of gerbils who are very cute when they are sleeping.
 
This scared me this morning when I read it. I'm a recently diagnosed type 1 at 24...
 

Yes, I've had the heart thing. I've had it a few times when I was on Humalog (on porcine now). Twice in the night and once during the day. It was absolutely terrifying as I felt like my heart was going to stop. It felt slow and like each beat was an effort. I'd taken some glucose tablets but was so terrified, I shouted for my daughter to get me some coke ( I find coke and Lucozade work quicker).

I've also woken in the night with my heart feeling like it was fluttering in my chest. I dreamt that I was dying. That was another horrible hypo. Still upsetting to think about now.

I do think human insulin is worse, and I find the analogues very fierce.
 
Last edited by a moderator:

I don't think we get to know why this DIB syndrome happens and obviously much more detailed research is needed, but it would appear to be more males.

http://journal.diabetes.org/diabetescare/FullText/Supplements/DiabetesCare/supplement299/B40.asp

Dizzy and Dory are dormice
 
The syndrome is poorly understood, with little information available on the prevalence, aetiology, triggers and overall pathogenesis.
Of the properly researched cases incl control group populations, a hi/normal carb diet, corresponding high insulin regime, BMI <28, age < 50 yo and male gender, appear to be the only common observations among those with diabetes having been declared dead with the Sudden Unexpected Death Syndrome (SUDS). Mind you, not all have been found dead in their beds... So not necessarily 'young' of age, and also not just the recently new diagnosed with diabetes either. As you mention in discussion above, the sample size is really small, reason why findings are not statistically significant either as far as I know. Also non-diabetics are found dead at times with no obvious reason found at autopsy.

With regards to the diabetics ending this way (and its still low on the frequency list compared to other causes of death), the following has been considered:
Acute hypoglycaemia may play a role. However, going hypo is a common occurrence among patients with type 1 diabetes, but it rarely results in sudden death. This implies that other mechanisms are likely to be involved. E.g. patients with long-standing type 1 diabetes may have reduced parasympathetic activity and increased sympathetic activity. These effects have been associated with lowered baroreceptor-cardiac reflex sensitivity in individuals with type 1 diabetes, which could result in increased susceptibility to ventricular arrhythmias. (which is actually attributed to presumed main cause of death for SUDS in non-diabetics population). Moreover, the risk of such ventricular arrhythmia is compounded by nocturnal episodes of hypoglycaemia. Research has demonstrated that patients with type 1 diabetes, with normal or abnormal cardiac autonomic function, have a prolonged QTc (corrected QT) interval during a hypo. Genetic predisposition to prolonged QTc interval prolongation is well recognised in the general community. Considering this, it is most probable that multiple factors in one person — T1, a genetic predisposition to QT interval prolongation, cardiac autonomic neuropathy and acute severe hypoglycaemia — collectively cause arrhythmia and lead to dead-in-bed syndrome.
 
So what you are saying @Celsus is that while diabetics have a higher likelihood than non-Ds of dead in bed syndrome, generically there are so many other conditions involved that the likelihood of a D dying from it is stil incredibly low, and you'd need to know about a significant number of other genetic defects to know whether it might happen.?
 
Correct Tim, several co-morbidities involved. T1 alone has so far not proven statistically significant in the sample sizes available. And mind you, as with all life science, just because you have them all is no 'guarantee' that you will die of it.
 
A point I fully agree with and have made in other topics on this syndrome. Glad to see others agree. I've even gone as far as to suggest it might not actually be a diabetic issue!
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…