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

Dead in Bed Syndrome?

Diabetes8

Member
Messages
15
Type of diabetes
Type 1
Treatment type
Insulin
Hi

I've known about DIBS since I was first diagnosed with T1 but recently it has been giving me a lot of anxiety and fear before I go to bed at night. I'd just like to know how rare DIBS is and if there is anyway to prevent it. The thought that you could have great control of your diabetes and are really taking care of yourself, but then suddenly die in your sleep is saddening.
 
Hello @Diabetes8 My personal understanding is that this is a rare condition and often linked to another underlying medical condition such as a heart condition, it accounts for around 5% of type 1 deaths but as I understand it you are more risk in suffering from DKA. As type 1 yes I have thought about this, but as I keep myself within range as much as possible and try to stay as fit and healthy as I can do, it's not something I give much thought to. My advice in reducing the anxiety you are feeling about this is to ensure you are always above 6.5mmol/l before bed, if you are concerned further then you should speak to your diabetes team about your anxiety particularly if it's affecting your ability to sleep.
 
Hello @Diabetes8 it accounts for around 5% of type 1 deaths but as I understand it you are more risk in suffering from DKA.
Juicyj, please take a bit more care in citing statistics like this. It accounts for around 6% of type 1 deaths in people under 40.
http://www.diabetes.co.uk/diabetes-complications/dead-in-bed-syndrome.html

That's a much different statistic than what you cited, and it's extremely important to note the differences between the two.

This is a study that found only 2.1% of diabetes-related deaths to have DIB criteria: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045678/

Take into consideration that those deaths were recorded in the 60s and 70s...BEFORE THE DAYS OF TEST STRIP GLUCOMETERS.

1 in 20 type 1 diabetics aren't dying from DIB syndrome. In fact, the chances of you dying from DIB are astronomically low.
 
Juicyj, please take a bit more care in citing statistics like this. It accounts for around 6% of type 1 deaths in people under 40.
http://www.diabetes.co.uk/diabetes-complications/dead-in-bed-syndrome.html

That's a much different statistic than what you cited, and it's extremely important to note the differences between the two.

This is a study that found only 2.1% of diabetes-related deaths to have DIB criteria: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045678/

Take into consideration that those deaths were recorded in the 60s and 70s...BEFORE THE DAYS OF TEST STRIP GLUCOMETERS.

1 in 20 type 1 diabetics aren't dying from DIB syndrome. In fact, the chances of you dying from DIB are astronomically low.

Thank you , but would you be able to clarify what you mean by "1 in 20 type 1 diabetics aren't dying from DIBS". Does that mean 19/20 are? :/
 
Hello @Diabetes8 My personal understanding is that this is a rare condition and often linked to another underlying medical condition such as a heart condition, it accounts for around 5% of type 1 deaths but as I understand it you are more risk in suffering from DKA. As type 1 yes I have thought about this, but as I keep myself within range as much as possible and try to stay as fit and healthy as I can do, it's not something I give much thought to. My advice in reducing the anxiety you are feeling about this is to ensure you are always above 6.5mmol/l before bed, if you are concerned further then you should speak to your diabetes team about your anxiety particularly if it's affecting your ability to sleep.

Also, thank you Juicy J for the advice. It has put my mind at rest a little bit
 
Is there any reason you've become extra-anxious about this recently? Are you by yourself, for example, or have you had a nasty nocturnal hypo?

I think making sure you go to bed on a good number, setting an alarm to check your BS in the night if you think it's going to,drop, and keeping hypo treatments near can be reassuring. I find my pump reassures me too because the basal is more closely matched to my needs.
 
Just to add to the discussion relating to DIB, there are no studies that state that hypoglycaemia was the cause of DIB either. It is conjecture based on timing, as glucose levels on the subjects when tested did not show hypoglycaemia. So avoiding being relatively low before bed is precautionary at best.
 
Juicyj, please take a bit more care in citing statistics like this. It accounts for around 6% of type 1 deaths in people under 40.
http://www.diabetes.co.uk/diabetes-complications/dead-in-bed-syndrome.html

Thanks for pointing this out TQ, please note as stated in my post it was my 'personal understanding' and not a quote from a medical source. Obviously stating the 'correct facts' is important when discussing a matter as sensitive as this, so it was great you were about to put the record straight.
 
Is there any reason you've become extra-anxious about this recently? Are you by yourself, for example, or have you had a nasty nocturnal hypo?
I think when finding out about the different things that could happen to type 1's ( even though DIB is rare) can be scary and can make someone anxious.
 
I know I am T2 .. but I do have heart problems .. so can really understand how your feeling ,, but it helps to remember that tomorrow is not guaranteed .. for anyone .. yes do what we can to stay safe and healthy ,, but don't stress. Stress cannot change anything ..it just makes your time unhappy..
 
I don't have exact numbers and I don't care to do the math, but realistically the chances of this happening are a fraction of a percent. Again, the data out there is 50+ years old in some cases and technology has come a long way since then.

Can it happen? Yes
Is it a realistic fear? No
What are the chances of this happening? This probably affects fewer than 1 out of every 1000 people with type 1 diabetes and probably closer to 1 out of every 10,000 people with type 1 diabetes.
 
Never heard of this syndrome before! Dont intend to give it another thought. All we can do is look after ourselves as best we can and hope for the best. Life goes on and I intend to make the most of it....could b hit by a bus in the morning never mind diabetes!x
 
its possible you already died in your sleep and you are reliving your life as your memory was wiped of the experience from then and now
 
I remember a local high school girl dying in her sleep and a university softball player, but those were shown to be hypoglycemia, not just SCD (sudden cardiac death) events.
 
Is there any reason you've become extra-anxious about this recently? Are you by yourself, for example, or have you had a nasty nocturnal hypo?

I think making sure you go to bed on a good number, setting an alarm to check your BS in the night if you think it's going to,drop, and keeping hypo treatments near can be reassuring. I find my pump reassures me too because the basal is more closely matched to my needs.

No there's no particular reason why this is making me anxious, just the thought of it scares me. And thank you
 
@Diabetes8

When my BGs were uncontrolled just prior to diagnosis and at diagnosis DIBS was a very real fear for me (I was very very ill at the time, far worse than even I realised).

However as I brought my sugars down, the fear eased, and since getting my BGs under tight control, it remains a distant memory, though if you get poorly it sometimes comes back to the front of your thoughts.

The chances of it happening due to D are very slim while I maintain good control - far more likely something else would 'get me' on the path of life!

So, I would put it to the back of your mind and try not to worry about it; put your efforts into getting good control and maintaining that. Life is for living, not for worrying. NB stress can also raise your BGs as it did severely with me, though I have read on the forums that it lowers BGs for some - though not recommended for that purpose!

Good luck - keep smiling, it's free, healthy and infectious
 
Last edited by a moderator:
Back
Top