My experience

[Nicola M]

On Monday 4th of March I was taken ill to the hospital with an extremely low blood sugar. Needless to say I didn’t get out till that Friday.

Ive heard a lot of people say severe hypos don’t last long until you treat them but this is where my story is different. An ambulance was called and they treated me and I shot back up to 9 something but still I didn’t wake up and I didn’t wake up until a full 2 and a half days later. I remember nothing from the original day even though I was only taken ill at 8pm that evening and my memories of the couple days before are foggy. I have no recollection of my coma state or anyone coming to visit even though plenty did. I wish I knew what happened that day but I can’t remember anything.

I’m extremely emotional over the past couple of weeks I think I feel guilt over the fact that this happened and my poor mother was alone to deal with it, I feel anxious/stressed going to bed at night thinking I’m not going to get up the next morning, my emotions are all over the place and I’m definitely more tired than usual.

This in part is just to also show that not every hypo attack ends with the same happy ending because mine certainly didn’t

 

[Jaylee]

Hi @Nicola M ,

There's no way on this planet I can understand your personal experience.
But I will say you're not to blame for what happened.
It also agree that hypos don't alway show up as a "minor inconvenience."

What were your BGs leading up to this event, were they stable but in the lower safe range? Could you have somehow lost hypo awairness?
I notice you use a Libre & a pump. Could the Libre have been scanning higher than you actually were?

I'll tag in pump users with regards to the experience on the tech. @Juicyj @helensaramay @Mel dCP

Best wishes.

 

[LooperCat]

Oh goodness, what a frightening experience for you and your poor mum! Has anything like this happened before? I’ve got no experience of this kind of hypo, all my diabetes related hospital stays have been when my levels were too high - although I did have paramedics out when I accidentally overdosed my Novorapid after confusing the raw and cooked weights on a pack of pasta.

Do you turn your pump off or down when you approach the lower end of your range? I knock mine down to 50% for half an hour if I’m under 4.5, and off altogether if I’m under 4, and chuck a couple of glucose tabs down my neck. But I have very small amounts of insulin on board, so it doesn’t take much to bring me up.

But you have absolutely nothing to feel guilty about, sometimes these things happen and it’s not your fault.

Do you have a MiaoMiao or similar on your Libre to give you alarms? You may sleep better knowing it’ll wake you if you drop below a level you’re comfortable with. It’s not a great idea to go to bed high because you’re scared of dropping in the night x

 

[DCUKMod]

@Nicola M - I'm not T1, so have never experienced a clinically concerning hypo, so can't comment on any of that for you. What I can comment upon is the loss of time, whilst you were so unwell.

Many moons ago, I was extremely unwell, then had a medical crisis which disturbed my electrolytes to a dangerous degree and sent me off into the spaces between conscious and unconscious for a number of days. The conscious times were blighted by vile and scary halucinations (due to the sever electrolyte imbalance), and all-in-all a bit of a nightmare.

Like you, I had a million questions about how, why and what went on during all that time I didn't and don't remember. Over time, some snippets came back or came out from my parents and staff, but not all of it, by quite a long way. Like you, I found this very disturbing indeed.

All I will say to you is, don't press too hard to try to work it all out. You probably never will. All that searching in your memory banks is exhausting at a time when your body needs to concentrate on healing, not on unpicking a nightmare.

I firmly believe that some of these coma or coma-like episodes where our brains and bodies lock down and lock us out is our brain and body's way of protecting us, and allows tem to utilise available resources to keep us alive and as well as possible, given what's causing it all.

Over time, I have accepted that I'll never know fully what went on in that time. I know right now, all that's very well, but, honestly, I do wish someone had told me not to try to unpick it. The exhaustion of recovery was hard enough to cope with.

Take it steady, Nicola, and I hope you feel better and can start getting your strength and confidence back.

 

[Juicyj]

Hi @Nicola M Sorry to hear about your experience, I think it's natural to want to fill the gaps I am sure I would react as you have however as @DCUKMod has said rather than trying to unpick this event please focus on your recovery.

It would beinteresting to learn what caused the event and in speaking to your team to see what measures can be put into place to help you recover, so they may want to think about keeping your levels running slightly higher for a while. Also seeing if they can provide you with either a Libre or CGM now to help ?

Best wishes J.

 

[Diakat]

@Nicola M so glad you are back with us. Can’t add much to the messages above. Just good to hear you are back.

 

[Deleted Account]

@Nicola M your diabetes has definitely dragged you through the ringer a few times. I am glad you are back with us and have a great mother to look after you.
As the others have said, don't beat yourself up - you have absolutely nothing to feel guilty about.
I agree with the advice to run your BG a bit higher (you should be able to change your target BG on your pump) and test more.
Whilst it would be useful to know how it happened, you may never know.

Take care and try not to worry.

 

[porl69]

@Nicola M. Oh my word what a terrible experience for both you and your mother. Nothing to add to whats been said already. Glad you are back with us

 

[Nicola M]

@Jaylee
I can't remember much but I know I'd had a late lunch that day and because I'm awake at the crack of dawn I came home to have a good ol' sleep before cooking something up for tea. From what I remember my BS were pretty "average" my hypo awareness is great awake but once I'm asleep I don't wake up which is strange!!

@Mel dCP
Honestly, haven't actually thought about lowering it when I'm on the low side I just tend to down some orange juice because I'm on the go an awful lot walking around.

@everyone else, thank you for your kind words and messages, they all mean very much to me x

 

[therower]

@Nicola M . What an awful experience. Many years back I suffered with going hypo whilst asleep.
Old insulin, no carb counting, no blood glucose monitors everything was guess work.
Needed assistance more than once. One thing I can fully relate to is the fear of going to bed.
It would take me too long to try and write down all the emotions and fears I had in those days, especially whilst laying in bed trying to get to sleep. I’m fairly sure I know exactly what is going on in your head.
If at any time you feel the need to talk about your feelings/ fears then feel free to chat. It’s one of the darkest, cruelest ways that diabetes finds to try and control us.
Take care.

 

[freyae32]

Hi @Nicola M
Although I've never experienced what I presume is diabetic coma I have had a seizure due to a hypo before I woke up. I similarly couldn't remember anything from that morning and caused my family a lot of distress when it happened. Luckily, I regained consciousness before I got into the ambulance and was discharged within a day.

I can't lie and say that anxiety before you go to sleep goes away. It's been a year and a half since my seizure and I still do multiple test before I go to sleep to ensure my BS is not dropping

You'll get used to it and you can only learn from this experience, it won't be a regular thing and you'll take even more precautions now to make sure it won't happen. Your mum will just be glad you are safe so there is no need to feel guilty about it.

Best of luck and take time for your recovery and getting back on track x