Night time horror

[Blackcats]

My husband has been type 1 for about 30 years he was diagnosed when about 38. He has had hypos but normally could recognise when going low. He has recently had his night time insulin changed to Lantus in the words of the Diabetic Consultant (the first he has seen since diagnosis) he has been managing his condition 'in the dark ages'. NO further explanation of why but a referrral to the local diabetic team. That nurse has been really helpful and changed his night time insulin. We were in France last week and I awoke to a terrible sound. I put the light on and thought he was having a stroke. He was completely unresponsive and making the most horrendous sound. To be on the safe side, I put a little glucose gel onto his lip and tongue in case it was a hypo. and hoping it might do something whilst waiting for the ambulance. After about15 minutes he opened his eyes and although not knowing what was happening, he was compos mentis enough for me to give him a whole gel sachet. then the cavalry arrived and took him to hospital. By then he knew who he was and where he was but nothing abut what had happened. Fortunately no other medical problems were diagnosed but we were none the wiser about why it happened. If he has ever had a hypo in the night before now, he wanders about and I wake in a heartbeat. This time there was no warning at all.

Arriving back in Uk yesterday we find that the appointment he had with the consultant for July (should have been March) has now been cancelled till November. I now cannot leave him at night, if I had not been there he would not have regained consciousness. What do we do now? What if I couldn't have got some tiny bit of glucose into him? His GP hasn't got a clue and clearly he doesn't rate highly enough on the Consultant's list to be seen quickly. I am at my wits end. Someone mentioned a glucose pen but we have no idea what that is or where we would get one from.

Any advice would be greatly appreciated.

 

[evilclive]

It's happened to me far too many times - well into double figures. It's horrible for both parties - the anguish on one side, and the pain on the other.

You want to get hold of some Glucagon - get a couple of kits from your GP (so you have a spare should you use one), shouldn't need a consultant to prescribe that. (if the GP refuses to prescribe, call the diabetes clinic and ask them what to do). If he's unresponsive, put that in (injection into thigh), then start feeding him when he comes round - which should be quick. He'll be confused, possibly nauseous, possibly stroppy, but that will pass. We had the little green men out a couple of times, but they don't really add very much - hospital visits won't help if it's a hypo. If he doesn't respond to the glucagon, then call the ambulance.

https://www.diabetes.org.uk/guide-to-diabetes/complications/hypos/having-a-hypo

Some good news : I have had a hypo like that twice while on my own now. Both times I woke up with a sore head and very sore tongue, but alive.

The thing which has helped the most for me is getting an alarm - libre + miaomiao. I don't have problems with hypos like that any more.

 

[Juicyj]

Hello @Blackcats and welcome

Sorry to hear about this experience it sounds very scary.. Can I check if he dropped his basal dose after this experience ? Obviously it's really important to avoid night time hypos at all costs so my immediate plan would be to drop this dose as a precaution. Tomorrow call his team and see if you can get an emergency appointment to review this with them, November is out of the question, they may be able to provide some support over the phone with changing his doses.

Night time hypos requiring assistance is rare, I haven't had one myself in the 7 years I've been diagnosed, sometimes during a hypo the liver can deliver glucose into the blood stream enabling you to rcover but it's not a given that this will be the response so you definitely did the right thing rubbing glucogel into his gums. Ask your team about getting a glucagon pen to keep in the fridge for this type of incident as this too will help bring him round if this ever did happen again. They can send a prescription through to your pharmacy for you.

His goal should be to get in the DAFNE course, Dose Adjustment for Normal Eating, it's a useful course covering many t1 related subjects, his team can get him signed up for this, also get a copy of 'think like a pancreas' useful reading as it's written by a t1.

 

[evilclive]

Ask your team about getting a glucagon pen to keep in the fridge for this type of incident as this too will help bring him round if this ever did happen again.

The spare lives in the fridge, but the main one should be by the bedside - you don't want to be going to the fridge if one of these hypos happens. They're designed to last at room temperature.

 

[EllieM]

Can he contact his nurse? Does he know how to alter his night time dose? Lantus is renowned for having a peak at 3 hours so it's possible he would do better on a morning dose, but you need to talk to someone at his clinic urgently. Can you phone them?

I have had your husband's experience a couple of times, and it was extremely scary for my husband (not so much for me, as I was oblivious till it was all over). If it's any consolation it's likely that his liver would eventually pump out enough sugar to save him (beware of drinking alcohol if he's sleeping alone).

https://www.diabetes.co.uk/diabetes-medication/glucagon-injection-kit.html

Is he getting hypo warnings during the day time?

The thing which has helped the most for me is getting an alarm - libre + miaomiao. I don't have problems with hypos like that any more.

I agree that this could be the way to go, if your finances can afford it or you can get it prescribed. The libre doesn't work for everyone, so if you're rich you could consider a dexcom.

Good luck. Try not to panic. This will pass.

 

[Antje77]

Did this happen anywhere between 30 minutes and 2 hours after taking Lantus? "Lantus low" is the reason I changed to another long acting insulin (Tresiba), as the one time I had Lantus do this to me was very very scary. Other long acting insulins can't do this.

 

[Juicyj]

You could also look at the Dexcom G6, it's linked to your phone and an alarm goes off when you drop below a preset level, I've prevented quite a few night time hypos now because of this, the system costs £159 a month and it's incredibly useful for good glucose management.

 

[EllieM]

You could also look at the Dexcom G6, it's linked to your phone and an alarm goes off when you drop below a preset level, I've prevented quite a few night time hypos now because of this, the system costs £159 a month and it's incredibly useful for good glucose management.

Does G5 do this as well? (G6 isn't available in NZ yet.)

 

[Jaylee]

Hi @Blackcats ,

Welcome to the forum.

You did the right thing treating your husband.

What insulin was your husband using prior to the change to Lantus?

 

[Juicyj]

Does G5 do this as well? (G6 isn't available in NZ yet.)

Yes the G5 also alerts to highs and lows via the app.

 

[therower]

Does G5 do this as well? (G6 isn't available in NZ yet.)

All Dexcom systems will provide alerts. I use G4 and this has its own receiver. Brilliant pieces of kit.

 

[therower]

@Blackcats . Welcome to the forum.
Years back when I had my insulin regime changed from pork mixtard to basal bolus regime ( Novorapid and Lantus) I endured about 6 maybe 9 months of horrendous hypos. Some night time but most day time. It was a fairly traumatic time and the hypos were like nothing I had in the past.
Strange thing was as time passed so did the severity of the hypos, still had occasional hypos but they were far more manageable.
It was if it took time for my body/ system to adjust to the new insulin.
I appreciate this doesn’t help you and your husband at this point in time but hopefully going forward things will become easier and less severe.

 

[Deleted Account]

@Blackcats that sounds horrible. Well done on remaining calm enough to treat the hypo.
You say you treated it “in case it was a hypo”. Was the hypo confirmed?
I find it natural to blame everything on diabetes but diabetes does not stop other things happening.

Regarding your consultant, even though he has postponed the next appointment until July, he should be able to arrange an extra appointment at short notice if you call the hospital and demand it. I would not passively accept a delay after an event like you had in France and a consultant should insist upon it too.

 

[Notorious]

Previous posters have mentioned low blood sugars caused by Lantus, I would look into this a bit more. 2 of the worst hypos I have ever had have been from Lantus - if you accidentally hit muscle or a blood vessel when injecting, it acts like fast-acting insulin and can drop blood glucose very quickly. If you can get hold of a Libre sensor and a Maio Maio or Nightrider, that will do CGM relatively cheaply.

 

[Fairygodmother]

See he can get an urgent referral to the Consultant. There are too many of us who’ve suffered from the Lantus drop to let this one go.
Yes, glucagon’s a good thing to have, yes, injecting Lantus in the morning is a good idea, and some people split their Lantus doses: half am, half pm. But there are other insulins to choose.
I breathed a huge sigh of relief when I changed from Lantus to Levemir.

 

[Emck]

If it helps, when I was first put on to Lantus (many years ago) my doctor got the dosage totally wrong . I don't know what type of calculation was used but I ended up on about 80u of Lantus per night (as a average weight teenage girl)... queue major nighttime (and daytime) hypos. I followed the doctors instructions, but ended up having to take very small amounts of humalog, whilst I slowly whittled the dosage down to a reasonable level.

It would be worth checking whether the dosage is correct as a first step.

Additionally, I remember that hypos hit me much harder once I moved on to Lantus, the symptoms take longer to subside and physically feel much worse.

 

[evilclive]

If it helps, when I was first put on to Lantus (many years ago) my doctor got the dosage totally wrong . I don't know what type of calculation was used but I ended up on about 80u of Lantus per night (as a average weight teenage girl)... queue major nighttime (and daytime) hypos. I followed the doctors instructions, but ended up having to take very small amounts of humalog, whilst I slowly whittled the dosage down to a reasonable level.

How much did you whittle it down to? If I took 80u, I'd be in proper trouble! (I'm on 21u levemir/day). But I know people's requirements vary dramatically.

 

[JMK1954]

Well done for rescuing your husband. Has your husband reduced the number of units of Lantus he takes ? My husband had to inject glucagon into me several times during the night when I was pregnant. That was 26 years ago, but I have never forgotten the relief on his face when I recovered consciousness again. You need to get some urgent action from the hospital clinic/ consultant over this. Don't let them tell you it won't happen again. They can't possibly know what will happen and are seriously deluded if they think otherwise. An overnight hypo should be avoided at all costs. Cut the number of units and test in the middle of the night . It's a real nuisance but will give you / your husband a better idea of what's going on. Contact a DSN at the hospital to get an urgent prescription for glucagon. My sister died in an overnight hypo.

 

[Emck]

How much did you whittle it down to? If I took 80u, I'd be in proper trouble! (I'm on 21u levemir/day). But I know people's requirements vary dramatically.

I'm on about 40u at the moment, but my insulin needs are huge for some reason.

I'm talking to my drs about changing the insulin that I'm on as lantus/humalog just doesn't seem to work for my needs anymore.

 

[Fairygodmother]

I'm on about 40u at the moment, but my insulin needs are huge for some reason.

I'm talking to my drs about changing the insulin that I'm on as lantus/humalog just doesn't seem to work for my needs anymore.

Yes, I think that after a long time on Lantus I built up a resistance to it. The nighttime hypos were still a problem even when it was failing to tackle daytime super-highs. Levemir’s much better for me. And Fiasp instead of novoslow.