problems after severe nocturnal hypo

[sheshops]

Hi there everyone

I'm new to this forum, I have been type 1 diabetic for 25 years and have sadly experienced severe nocturnal hypos quite a few times before. I had one on Sunday night / early hours Monday morning - luckily my boyfriend was staying with me and found me collapsed downstairs. The experience this time has left me feeling really depressed and almost suffering anxiety/flashbacks and a fear of the dark / being alone. This is very unusual for me as Im normally a very upbeat happy person. I believe I was out for a few mins before he found me. I just would like to know if anyone else has suffered like this after a similar experience and if its normal. Im sure that the pandemic and the current situation in the world at the moment are not helping me. Any advice from anyone is most welcome.

 

[Inka]

You poor thing @sheshops Nocturnal hypos like that are awful. It’s not surprising you’re anxious.

I had severe nocturnal hypos many years ago. They’re the reason I was given a pump. My pump completely stopped them. Are you on injections? What insulins do you take and when? Can you pin down any possible cause for this hypo?

One thing you could do to help temporarily is set an alarm for an hour before you had the hypo so you can get up, test and eat if necessary. Also, keep easily accessible hypo stuff by your bed eg a can or bottle of regular sugar Coke, Dextro tabs, top up carbs like digestives and flapjacks, etc.You might also want to have a larger bedtime snack and run slightly higher than usual for a couple of weeks during the night.

 

[Amity Island]

Hi there everyone

I'm new to this forum, I have been type 1 diabetic for 25 years and have sadly experienced severe nocturnal hypos quite a few times before. I had one on Sunday night / early hours Monday morning - luckily my boyfriend was staying with me and found me collapsed downstairs. The experience this time has left me feeling really depressed and almost suffering anxiety/flashbacks and a fear of the dark / being alone. This is very unusual for me as Im normally a very upbeat happy person. I believe I was out for a few mins before he found me. I just would like to know if anyone else has suffered like this after a similar experience and if its normal. Im sure that the pandemic and the current situation in the world at the moment are not helping me. Any advice from anyone is most welcome.

Hi Sheshops,

Sounds like an awful experience. I had a nighttime hypo and I felt surreal the whole of the next day. I just didn't feel myself. It's bound to affect your mood, emotions, mental capacity etc

It sounds like you would really benefit from the new Freestyle Libre 2 which has alarms for hypos, to help prevent these things ever happening. Do you have a libre? Can you speak to your diabetes team and ask them to email your g.p to prescribe a libre 2 for you? you can set it to a lower limit of say 5.5mmol so it triggers an alarm to wake you.

 

[nonethewiser]

I just would like to know if anyone else has suffered like this after a similar experience and if its normal. Im sure that the pandemic and the current situation in the world at the moment are not helping me. Any advice from anyone is most welcome.

Totally can relate it. Never lost consciousness ever with hypo's but came close 5 years ago, was during day out & about with wife, started to feel faint had flashing lights in vision, sat down in field then guzzled full tub of glucotabs, sweat starting pouring out & felt awful, wife got fright & nearly called ambulance.

After sitting for 10 started to come round, must have scared me stupid as lost confidence for while after, felt vulnerable going out alone & started testing more on walks, in time feeling went & confidence returned. So very normal to suffer anxiety after event, wouldn't be human if we didn't.

 

[Amity Island]

Totally can relate it. Never lost consciousness ever with hypo's but came close 5 years ago, was during day out & about with wife, started to feel faint had flashing lights in vision, sat down in field then guzzled full tub of glucotabs, sweat starting pouring out & felt awful, wife got fright & nearly called ambulance.

After sitting for 10 started to come round, must have scared me stupid as lost confidence for while after, felt vulnerable going out alone & started testing more on walks, in time feeling went & confidence returned. So very normal to suffer anxiety after event, wouldn't be human if we didn't.

Nonethewiser,

Only a fellow diabetic could have any understanding of what you describe. Brings it home...how scary it can be sometimes to be diabetic....even if you are well controlled.

 

[Lucy Honeychurch]

I'm sorry you experienced this. Very frightening for you, I've not experienced this yet, but can relate to how you must be feeling. Hopefully @everydayupsanddowns will come along with some advice.
Take care x

 

[Inamuddle]

Hi @sheshops sorry to hear that you are feeling like this. I can understand completly what you are saying. I had a similar experience a long time ago and it left me feeling terrified of hypos. And as you say the current situation is anxiety inducing for a lot of us.
So my advice would be multi. Speak to your diabetes team and if you don't have a libre maybe its worth thinking about. If you don't get warning of hypos then it is also worth speaking to a professional. And i don't know if the hypos are due to too much insulin. There are several factors at play.
The anxiety is a normal reaction to what happened and you can rebuild your confidece just be kind to yourself..

 

[Amity Island]

Hi there everyone

I'm new to this forum, I have been type 1 diabetic for 25 years and have sadly experienced severe nocturnal hypos quite a few times before. I had one on Sunday night / early hours Monday morning - luckily my boyfriend was staying with me and found me collapsed downstairs. The experience this time has left me feeling really depressed and almost suffering anxiety/flashbacks and a fear of the dark / being alone. This is very unusual for me as Im normally a very upbeat happy person. I believe I was out for a few mins before he found me. I just would like to know if anyone else has suffered like this after a similar experience and if its normal. Im sure that the pandemic and the current situation in the world at the moment are not helping me. Any advice from anyone is most welcome.

Hi sheshops,

Just thought i'd mention, that one thing that can catch a diabetic out, is unplanned excercise. Excercise can have a profound affect on insulin sensitivity. It doesn't take much. One can be on an established basal and bolus dose, do a bit of excercise and not realise it can cause a fall in blood sugars for a day or more. This could certainly be a cause of nighttime hypos for many on insulin. There's also lots of other reasons for hypos, but I thought it worth mentioning just in case you are wondering why you had the hypo during the night. As I said, a libre 2 would be useful too, if you are not waking.

 

[Leadinglights]

I had a work colleague who had frequent hypos and as a first aider was often called so I used to carry fruit pastilles and a carton of pineapple juice but it was often quite alarming as an onlooker as they exhibited jerky movements almost like a fit. Once we recognised the early symptoms often a sweet coffee and a biscuit was sufficient. I worried as they were alone in an office some of the time so people would make an excuse to periodically check. He himself seemed totally unconcerned.

 

[mikeyB]

I use the Libre 2, and don’t get any nocturnal hypos now - I keep the reader in the top pocket of my PJs, and when my BG goes below 3.9 it insistently beeps an alarm and vibrates. That wakes me up before I drop into the dangerous waters of the 2’s.

 

[everydayupsanddowns]

Welcome to the forum and so sorry to hear about your nasty overnight hypo @sheshops

I think anyone who has had a nasty low will recognise that feeling of being really shaken by the experience, like the world isn’t the same, and that the rug has been pulled out from under you. Then the circle of doubts and worries and what-ifs about what happened and whether it might happen again.

Over time with T1 your warning signs can take a bit of a dent (depending on your experience of hypoglycaemia). And the body’s own ‘emergency response’ of dumping glucose from the liver can fail to fire - particularly overnight. Personally I think I normalised my experience of low level dips into the 3s for many years, and gradually would only feel lows when they were lower and nearer the edge.

In fact it was a nasty low - the only time I had felt the need to attend A&E because of my T1 that made me start looking around on the internet for others’ experiences - and ultimately led to me being here! I wrote this at the time

Uncertain beginnings

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

That was 10 years ago. I was probably having an overnight hypo every few weeks at the time. And quite a few of them I needed help with. I really didn’t realise how not-normal that was. How dangerous, how much impact it was having on the people in ky family, and actually how fixable.

Over the next couple of years of comparing notes with others I think I learned more about managing my diabetes than I had in the previous 15 years!

If I’m honest I had always preferred to run on the low side, and I think I had accepted far too many low BGs as part of that. I have a very low percentage of time below 4.0 any more and can go days or weeks without dipping close to a hypo at all.

One of the big changes for me was learning how to properly check my basal insulin was working as well as it could. I ended up taking it in the mornings. There’s a very helpful writeup about that here

Basal Testing in Diabetes - Diabetes Support

Managing diabetes effectively requires constant monitoring and adjustments to ensure blood sugar levels remain stable. One key aspect of this management process is basal testing, which focuses on evaluating the effectiveness of basal insulin in the body. In this blog article, we’ll explore the...

www.diabetes-support.org.uk

Do you carb count? Or have you ever been on a structured education course for diabetes management? These can give you loads of extra tools, tips and strategies for managing your BG levels in a more hands-on way.

Some of these courses are available online (they won’t be running face to face at the moment!)

DAFNE - now available in an online version (dose adjustment for normal eating) is proven to reduce hypoglycaemia
https://dafne.nhs.uk

BERTIE Online carb-counting course:
www.bertieonline.org.uk

If you was a simpler overview you can try this from Diabetes UK

The nuts and bolts of carb counting​

I hope you can manage to identify what caused your nasty hypo, and take some steps to reduce your exposure to hypoglycaemia. There is tech that can really help, but there are also practical diabetes management steps that can help stop you getting severe lows.

Good luck and let us know how you are getting on

 

[Amity Island]

I use the Libre 2, and don’t get any nocturnal hypos now - I keep the reader in the top pocket of my PJs, and when my BG goes below 3.9 it insistently beeps an alarm and vibrates. That wakes me up before I drop into the dangerous waters of the 2’s.

MikeyB,

Could I ask, what is your alarm (mmol) set to? Is the 3.9 you mentioned just the libres automatic alarm? when I get my libre 2 up and running I'd be setting my min to 5.5 overnight to give sufficient time to try and avoid going low (because of libres lag).

 

[grovesy]

You can change the alarm settings.

 

[Amity Island]

You can change the alarm settings.

Thanks.

So if alarms are on, what is the default factory setting? is it 3.9? Given the lag, I'd of thought a 5.5 would be more useful? What do you think?

 

[trophywench]

Personally when my Libre says I'm under 4 I test my BG and can be as high as 5 - it just ain't that accurate. If the L2 is more accurate then surely each user needs to find out how close it is to actual BG, and set the thing to whatever level they are personally comfortable with? The only similarities my diabetes has to yours or MikeyB's or EDAUAD's is that we are all labelled Type 1.

 

[KARNAK]

Hello @sheshops welcome to the forum.

I`ve had several episodes like you describe and so sorry you have gone through it.

My worse episode was at home when I went to bed at 23:00 and the paramedics
where treating me at 13:10 the next day on the bedroom floor only because my
neighbours called them as the bedroom window was open and they where worried
they hadn`t seen me and could see my head resting on the bed. Paramedics arrived
very quickly and my records showed I am T1D although the neighbours all know and
began treating me, (still alive just) but managed to bring me around with Glucagon
injection and glucose Gel forced down my throat.

They stayed with me for two hours checking and in contact with the hospital telling me how
lucky I was but felt ok and BGL`s were up to 6.8, Consultant was on my phone asking
questions and asked the Paramedics to give another injection to bring my levels further up
into double figures, didn`t go to hospital but had to sign to say I wasn`t willing. Several other
events have occurred but outside there`s normally help.

Not wishing to frighten you just letting you know the reality's of the hypo you had, wouldn`t
hurt to increase your levels up into double figures for a while maybe 10 or 12 give you back
hypo awareness maybe for a month. I suffer with Anaemia and low Testosterone levels which
doesn`t help be thankful your boyfriend was there and I hope you never go through it again,
you have a lot of experience put it down to an unexpected blip.

Take care stay safe and thankyou for joining our wonderful forum. x

 

[grovesy]

Thanks.

So if alarms are on, what is the default factory setting? is it 3.9? Given the lag, I'd of thought a 5.5 would be more useful? What do you think?

I can't remember what the reader came set at , sorry.

 

[sheshops]

Hi everyone thank you so much for all of your replies I really appreciate them. I am currently wearing a libra 2 which was fitted 2 days after the hypo on Tuesday - its set to alarm at 4 but Im finding the results not that accurate and higher than what I am so I may need to lower it. In reply to a few of your suggestions, I actually take my long acting insulin on a morning which I have done for years now - but it still doesn't seem to be working - what's even more strange is I take less basal now than I have ever done Im on 14 units.

I have tonnes to eat before bed and wouldn't dare go to sleep with my BG less than 12 I have a decent supper and have lucozade etc just before I go to sleep. Im literally terrified of going to sleep for fear of having one. I have had approx 7 in the last 5 years 2 in the last 3 months and thank god each time someone has been there to help me, apparently I make this eerie scream in my sleep and bite my tongue it must be really awful for them to see me foaming at the mouth like something from a horror film. I have woken up many time to paramedics standing over me.

Like I said in my previous post its left me with this horrendous fear of the dark and being on my own, I feel really low in mood and Im just wondering if its doing something to my brain - removing seratonin or something like that?

I was due to start a Dafne course end of last year that was cancelled due to covid but I have been told that Im on the next available course. Does anyone know anything about the watches you can wear on your wrist that alarm if you perspire in the night with hypos? Im desperate to have as many things as I can around me to give me some peace of mind and some of my confidence and independence back. I definitely think the current situation with the pandemic has not helped with the way this has left me feeling. So sorry to drone on but I think the only people who really can appreciate this are fellow diabetics

many thanks again
Michelle

 

[sheshops]

Hello @sheshops welcome to the forum.

I`ve had several episodes like you describe and so sorry you have gone through it.

My worse episode was at home when I went to bed at 23:00 and the paramedics
where treating me at 13:10 the next day on the bedroom floor only because my
neighbours called them as the bedroom window was open and they where worried
they hadn`t seen me and could see my head resting on the bed. Paramedics arrived
very quickly and my records showed I am T1D although the neighbours all know and
began treating me, (still alive just) but managed to bring me around with Glucagon
injection and glucose Gel forced down my throat.

They stayed with me for two hours checking and in contact with the hospital telling me how
lucky I was but felt ok and BGL`s were up to 6.8, Consultant was on my phone asking
questions and asked the Paramedics to give another injection to bring my levels further up
into double figures, didn`t go to hospital but had to sign to say I wasn`t willing. Several other
events have occurred but outside there`s normally help.

Not wishing to frighten you just letting you know the reality's of the hypo you had, wouldn`t
hurt to increase your levels up into double figures for a while maybe 10 or 12 give you back
hypo awareness maybe for a month. I suffer with Anaemia and low Testosterone levels which
doesn`t help be thankful your boyfriend was there and I hope you never go through it again,
you have a lot of experience put it down to an unexpected blip.

Take care stay safe and thankyou for joining our wonderful forum. x

Im so glad that you are OK after that awful episode, you poor thing thank god for your neighbours did you get a depressed feeling after or did you bounce back OK? I think everything feels so strange at the moment anyway that this is just adding to things for me x

 

[Inka]

In reply to a few of your suggestions, I actually take my long acting insulin on a morning which I have done for years now - but it still doesn't seem to be working - what's even more strange is I take less basal now than I have ever done Im on 14 units.

Hi again @sheshops What basal insulin are you taking? Is it Lantus? When you say it’s not working, what do you mean? Would you consider trying a different basal? For me, my nocturnal hypos were caused by my basal insulin and no basal insulin worked because none could match my needs during the night (very, very low need early on then rising as dawn approaches).

Have you considered a pump? With a pump your basal needs can be matched exactly and you won’t have a ‘lump’ of basal insulin sitting there releasing itself when you don’t need it. Pumps use bolus/fast insulin and can allow you to have tiny amounts. My pump changed my life. That’s not an exaggeration.