Sleeping

[Kelsmam]

This is such a long shot buy I have to ask! My 47 year old daughter is type 1 she sleeps for up to 18 hours through the night into the next afternoon and it is extremely hard to wake her even after that length of time. Does anyone know if this could be diabetes related or has anyone had the same problem. Thanks for reading, Gayle

 

[Rokaab]

This is such a long shot buy I have to ask! My 47 year old daughter is type 1 she sleeps for up to 18 hours through the night into the next afternoon and it is extremely hard to wake her even after that length of time. Does anyone know if this could be diabetes related or has anyone had the same problem. Thanks for reading, Gayle

I've had T1 for 40+ years now (and I'm just older than your daughter) and I've never had that issue of sleeping for 18 hours.

The only time people have had issues waking me is when my sugar levels has dropped way too low, even then its not taken that long to awaken - think about 11-12 hours is the most I've got to and my gawd I felt groggy when I finally did wake up due to the fact it was because my sugar level had dropped way too low

Does your daughter have a CGM? if not it'd be worth seeing if her docs can prescribe them so see if her extended sleeping is blood sugar related (if not you can buy them - though they're not cheap if you're on a budget)

 

[Kelsmam]

Hi, thanks for you reply. My daughter uses the Dexcom G6. Her blood glucose has never been stable but she gets on quite well with this. We worry that because she sleeps so long, and it's an extremely deep sleep where an alarm clock, phone calls as well as someone calling her name doesn't work, she will eventually go into a hypoglycemic coma. It's so scary but we don't know where or who to turn to.

 

[EllieM]

Hi, thanks for you reply. My daughter uses the Dexcom G6. Her blood glucose has never been stable but she gets on quite well with this. We worry that because she sleeps so long, and it's an extremely deep sleep where an alarm clock, phone calls as well as someone calling her name doesn't work, she will eventually go into a hypoglycemic coma. It's so scary but we don't know where or who to turn to.

Sleeping 18 hours a day doesn't seem normal to me, but that doesn't necessarily mean it's diabetes related. Has she spoken to a doctor about this?

You can get glucagon sprays and injections to treat hypoglycemia if you can't wake the sufferer, so if she's living with you then this might be a possibility?
The liver pumps out glucose when you get hypo so many nocturnal hypos get recovered from without additional treatment.

Edited to add, and welcome to the forums.

 

[Kelsmam]

Hello EllieM. Unfortunately she doesn't live with me but we keep in daily contact and she has family members living closer to her than I do which makes it so much harder! I was running the problem through on this forum because I just didn't know what could possibly be wrong with her and was wondering if anyone had any ideas. It's been going on for a long time but I think we've talked her into contacting her gp to hopefully take things further. Thank you for your reply, Gayle.

 

[Hopeful34]

Welcome to the forum @Kelsmam

Would your daughter be willing for someone to be a 'follower' on their phone of her Dexcom readings, so that they could be alerted if she's hypo?

 

[hellobear007]

Hi

When I was your daughter's age I went through a similar thing. I still struggle with it now, although I'm much more in control ( I'm 38 )

Had a rough ride leaving home at 16 and I just didn't really care about my diabetes. ( I always took my insulin but I went days without checking my glucose or paying any heed to symptoms of being high etc )

I spent many many years sleeping for long periods. Often I would only really get up to use the bathroom, get some water and take some insulin.

For me I believe it was a mix of running very high all the time and depression. I have also now been diagnosed with chronic fatigue syndrome but I feel that the depression played the biggest part.

Complications starter to appear in my 20s which just made me more depressed.

I hit my 30s and realised something had to change. It wasn't an easy path. At the time I was in a bad relationship but I slowly managed to take control and start caring about my diabetes more. Went on the carb counting course, built better relationships with my diabetes clinic... And got therapy!

Last year I moved into a bungalow in a lovely quiet area ( there was a lot of drug use and violence where I lived before and my ex was still hanging around. For the first time in over 20 years I open my curtains!

Yes, I still have times when I struggle. The complications play havoc with most things ( hindsight hey) but I feel so much.... Lighter?

I still take a nap most days but I allow myself only a couple of hours at most, unless I'm poorly.

As someone said above. Could you view your daughter's Dexcom via the follow app if she would be open to it.

Keep talking to her. Be there for her, even if she thinks she does not need it. My parents did take a step back and let me ' get on with it ' , because I had no interest in good advice back then but they were always ' there ' .

Wishing your daughter and yourself all the best.

 

[hellobear007]

Ps. I'm please to hear she is open to seeing her GP. That is a great start.

Small steps. You will get there

 

[hellobear007]

Also to add I would get the GP to run a full set of bloods. If she is anaemic or deficient in other areas ( iron, folate etc ) this can also have a bit effect on energy levels.

I would ask for at the least... Full kidney panel, full liver panel, full blood count, vitamin panel, thyroid panel.

At least then you can either include or rule other things out.

I also just realised you put your daughter's age as 47... I first replied thinking she was 18 ( one or those mornings! )

 

[wozey]

If you google it then you will get everything from a brain tumour to cancer and everything in between, only person that should advise on this is a doctor. With her being in her 40s why hasn’t she made any attempt to resolve this herself? I mean it’s impossible for any adult to sleep 18 hours a day and keep a job or even run a family

 

[Kelsmam]

This is why I'm asking the question! She has other medical problems and has been diagnosed with gastroparesis, "watermelon stomach", neuropathy, and other Type 1 diabetes related illnesses. She is classed disabled and has a 17 year old son who does his best to help her. It seems as if you doubt me but I promise its so worrying that I felt I have to ask wherever I can for help/advice.

 

[Rokaab]

Afaik its not diabetes related, I have heard of one or two others sleeping excessively though - those without diabetes (on PC related discord rather than any medical forums/discord) - though didn't have anymore details than thw fact they slept for a long time.

It should be looked into however, but I wouldn't blame the T1 diabetes for it

 

[Kelsmam]

Rokaab, I'm not blaming it on T1 but as I've said the situation is getting desperate now and I'm just knocking on any door I can find just to ask if anyone has heard or had experience of excessive sleeping! Thanks for your reply

 

[Hopeful34]

Apart from the neuropathy, does your daughter have pain anywhere else @Kelsmam ?

 

[wozey]

This is why I'm asking the question! She has other medical problems and has been diagnosed with gastroparesis, "watermelon stomach", neuropathy, and other Type 1 diabetes related illnesses. She is classed disabled and has a 17 year old son who does his best to help her. It seems as if you doubt me but I promise its so worrying that I felt I have to ask wherever I can for help/advice.

I wasn’t having a go at you, my point was let’s get her to a doctor and let them do what they do. We can’t diagnose anything, I mean we can guess but that’s not what you need.

 

[Kelsmam]

Sorry! Its just such a wotmrrying thing and trying to get a doctors appt is so hard. I do appreciate your time in answering!

 

[Kelsmam]

Apart from the neuropathy, does your daughter have pain anywhere else @Kelsmam ?

Hi, her stomach mostly because of the gastroparesis.

 

[Nicola M]

I can sleep upwards of 15-18 hours a day most days if I am able to (with work I can't do that in the week) but on the weekend I sleep in "batches" where I can be asleep for 12 hours in the night and then nap for a further 3-4 hours in the day and it still feels like I've had not near enough sleep and I find it hard to get up even after all the sleep I get. Mine is down to having depression though. I can see from your previous comments she is willing to go to the GP which is a good first step and I'm sure they'll be able to get to the bottom of whatever is causing it.

 

[Kelsmam]

I can sleep upwards of 15-18 hours a day most days if I am able to (with work I can't do that in the week) but on the weekend I sleep in "batches" where I can be asleep for 12 hours in the night and then nap for a further 3-4 hours in the day and it still feels like I've had not near enough sleep and I find it hard to get up even after all the sleep I get. Mine is down to having depression though. I can see from your previous comments she is willing to go to the GP which is a good first step and I'm sure they'll be able to get to the bottom of whatever is causing it.

She suffers from depression and extreme anxiety. Hoping something will get done soon for her! Thank you for getting in touch it's appreciated.