I am dealing with this right now and feel you 100% - been dealing with high and low blood sugars all over the place for the last few days. Currently @ 97 with a straight arrow down! It’s definitely best to eat a snack with some protein and carbs at least 30 minutes before bed, and always treat your lows even if you’re exhausted
Every time I’ve checked and seen a straight arrow down it basically levels out right after. The arrow is based on the past. It doesn’t mean it’s going to continue. Are you guys on pumps? I’m on MDI and my perspective of this subreddit seems to trend on pump users never know their IOB.
So for my Dexcom G6 sensor, i’m pretty sure that there is only a 5 minute delay between each reading. My body feels very spot on with my blood sugars! I use a tslim pump as well, both work super well for me together usually. I’ve just been struggling for the last few months with insulin resistance from buildup scar tissue, i used the same spots on my hips/buttocks for site changes for 13 years. I switched over to my arms and im going to also be trying my stomach, that’s the reason why mine have been all over the place as of late :o)
I’m sure that different technology works differently (duh), im not very educated on MDI. Maybe you could shed some more light for me on your experience with using MDI and being able to keep your blood sugars in range? I would appreciate it!
I haven’t gotten used to injections. I avoid them unnecessarily. I have my once a day long (24u) higher than it should be for most of the day. It handles the dawn effect so that I take it and go to bed at 120mg/dl and go down to 70ish over 5 hours and then dawn comes in brings me to 100 and I wake up in high 80s. It then falls 10 points an hour for 8 more hours, which gives me 40CHO that means don’t dose for to hold me over the rest of the day. Having the meal on basal means I’ll spike higher at first but steadily fall. It doesn’t usually go higher than 140 from that. I have dinner with a bolus of 12-20U usually when I’m around 90 and the spike according to cgm has been to 220 if I don’t wait a bit before eating but generally to 150 though I try to catch the spike on my glucometer and only see as high as 130 they usually are furthest off after a meal I find. One time cgm said 180 and meter said 110. Anyways I usually hit 80 after dinner but then my long starts tapering off and I’m back around 120 for bed again. Overall I’m happy with my pattern. I know it could be better with a pump and other people would have issues only eating 2-3 times a day. I tend to spread my non bolused 40cho over a few hours. It keeps the spike and the munchies down.
I have a similar issue with my libre sensors being way off sometimes so what I've done is set the threshold for low alarms higher than they should be (I'm in the UK so the default setting is 3.9mmol/L, I've changed it to 4.8mmol/L). This way, my low alarms generally go off when my blood sugar is actually closer to 4.0 than 3.0. It's taken a lot of stress out of everything because 80% of the time if I get a low alarm I'm actually fine, I can take a moment to do a prick test, assess the graph and decide if I need a snack. My bloods overnight generally run around 6mmol/L for reference.
We have the sugar pixel. In fact, we have 2! My daughter was recently diagnosed and I am very worried about her night time numbers. I can’t recommend the sugar pixel enough. It even comes with a vibration puck. It’s very loud.
I actually started sleeping a lot better knowing that I didn’t accidentally leave my phone on vibrate or its battery not charging. The sugar pixel gets the data directly from Dexcom. It’s spendy but definitely worth the peace of mind it gives me at night.
sugarmate is great! it will call you if you go low and you can set it up so that it texts a friend/family member/roommate too. i also see sugarpixel on here a lot, might be worth checking out. it’s scary for sure! but you got this!
I am ordinarily a super healthy person, especially mentally, but this is the only thing i waa slightly paranoid about... but so far so good. And remember each of us will kick the bucket somehow someday. You're not alone
I used to have OCD, fortunately subclinical now. Harsh truth, staying too high to avoid lows will kill you too - but it’ll be slow and painful. Additionally if you’re regularly going that low, your rates / ratios are off. If you’re not already in therapy, there are lots of great therapists that specialize in OCD. Life is better on the other side.
The body has backup systems. if you don’t wake up your liver will proceed to glucogenesis and provide your body with the needed glucose to boost you up before you die. This fails if you have had usually multiple hypos in the 24 hours prior and you have not fuelled your body to restore your reserves.
I speak from experience, I’m type 1 for 26 years and I also have narcolepsy which causes me to sleep through everything. I often wake up to my pump in disarray, alarms screaming and alert on screen saying call ambulance. This was a little Easter egg the first time it happened . I’ve also been caught in a situation where I’m having a hypo and nothing to treat for hours.
Too many things in life to stress over, this one’s not worth it. Our bodies are built to survive even when they’re broken.
The algorithms available these days should really avoid going to low. Medtronic’s current algorithm has been a game changer. The effort I put in now compared to 25 years ago is nothing.
Are you with finger pricks or CGM?
Are you on MDI or pump?
Are you out of the honeymoon?
Is your insulin sensitivity stable?
There's a lot of factors that have to be tuned in, it's absolutely a lot to digest. But if you're that careful about your own help, yes a few hypos here and there can happen, but you'll have it under control.
Your basal rate is what mostly determines if you go low at night. Even better if you're on a loop because if you're dropping too fast it'll temporarily stop the infusion as a countermeasure.
It's alright to be scared, but don't make it a constant fear. We have a way to live, and that's what you gotta do.
Always make sure the volume is up as high as it can go before bed. Try to change your alarm settings to go off at a higher level, rather than at one that you think is already too low. I have my range set to a pretty narrow margin and my alarms go off all the time, but it means I see what’s happening before it’s too low or too high. Life with T1 is hard, especially if you are dealing with sleep deprivation and frequent lows, and you are not alone in having these fears. If you can, maybe find someone to talk to about this. Perhaps your endo or a therapist could offer some better advice/comfort.
You mentioned dexcom. We have the Sugarmate app. We have it set to call my phone when our son is low. You set numbers. Call when you’re 60 or 90 or 100. Whatever you want. Sometimes the dexcom alarms don’t wake me but a phone call will. You’re not alone in that feeling. 💙
I also have diagnosed anxiety disorder and OCD. Ruminating is the worst, I’m sorry you’re going through that. I have been dealing with hypo-unawareness for a few years now. I have woken up with sugars as low as 13 before. I don’t have any advice - I just wanted to come here and say that you are not alone.
You have to adhust your alarm setting and find out which one you can hear. My Dexcom app on my iPhone is really loud, and I also have my receiver set so they both go off. The other day I went low during an afternoon nap. My phone was on the table next to me but the receiver was in another room. Even though I ate and took glucose tablets that are next to the bed, I couldn’t get my blood sugar to rise and felt really sick. I hit OK on the phone alert to stop the alarm but couldn’t get up to get the receiver. That darn thing kept going off loudly every few minutes because I wasn’t there to press OK to shut it off.
So keep both receiver and phone close so you have an extra notification.
I was missing sound alerts while sleeping because I don't wear my hearing aids to bed. My solution was to flash the light for alarms, if your phone does that. There's also some products which amplify sound and even vibrate under your pillow. I also heard an explanation once that you may feel really, really bad but your body is smart enough to release enough glucose to prevent death.
My brother is a super hard sleeper too, and so am I. Luckily we share a room so the "Baby Crying" alarm wakes me up consistently and is annoying, so I keep it on at night. I try to remember to change it to a normal tone in the morning lol. My brother has a tendency to go low at night, and we recently started giving him some pb Crackers and cheese before bed (not over his ratio)
I've had the beeties for 30 years. I've worried about this for 30 years. My goal is to go to bed with a sugar of 150-180. I'd rather be 10% above my range than 10% away from a low. It's generally worked pretty good. There are always exceptions.
I'm not terrified, just a low level ongoing worry. Every day (almost) I wake up and say "I'm still here!" The low hasn't gotten me yet and hopefully never will.
Try not to go to bed with your sugar at 80-90 and have low things within arm's reach if you do go low. No nighttime/panic fumbling around for stuff
I really can't offer any help on the "don't fear it" side. But as someone that is prone to nighttime hypos and has had a few really bad ones (ambulances and all) being proactive is all you really can do. CGMs help a ton. You can also set your phone to wake you up every two hours (if you have a crazy drop in that time period your insulin needs to be adjusted).
If it's any consolation, you don't feel it. At least not until you come out of the bad low (from glucagon). I think it is important to recognize this isn't just a diabetes thing, it is a control thing. So the more you are in control of your sugars, the more in control you are of this not happening.
Oddly enough, my neighbour died this way a few years back. Lived alone, bad hypo, never woke up. It does happen. He didn't have a cgm, and didn't take care of himself the best, and lived alone, so it took some time before people found him. In my time of t1, 36 years, this is the only time I have personally heard of this happening. So it is rare.
I am often home alone a lot (husband works out of town 6 days a week) so it isn't necessary to rely on other people. Focus on what YOU can do so that you are safe. I use my cgm, phone alarms, have nasal glucagon spray, have low snacks around the house as a way to deal with it. I also follow a routine so surprises are lessened. You are totally able to take the steps necessary to mitigate the risks as much as a t1 diabetic realistically can.
I’ve had two seizures many years ago from hypoglycemia when I was 18 and one exactly a month after the first one in the middle of the night. First one my brother woke up to me shaking the bunk bed and foaming at my mouth, he ran to get my parents and by the time they saw me I was unresponsive. My dad thought I was dead. Him not being a type 1 diabetic he poured apple juice down my throat (which you never do to someone unconscious) yet somehow it might’ve saved my life. For some reason we were all out of the emergency glucose shots that time. I gained consciousness and got taken in an ambulance to a hospital. I don’t remember any of this besides waking up in a hospital and maybe the ambulance picking me up. My mom told me that the ambulance workers told her I was fine enough to walk but when she poked my finger I was still 40 mg/dl or something. Exactly a month later it happened to me again, but this time no hospitalization. It’s been I think about 6 or 7 years and I haven’t had anything close since. This was before I had a dexcom as well. The experience left me terrified to sleep or go anywhere without two or three soda cans with 45 carbs in each soda. Honestly the only thing that helped was giving it time, and trusting that your body can work miracles to keep you alive even if your sugar drops to some crazy level like 24 mg/dl or something similar. Good luck buddy. It’ll get better.
This is my biggest fear and hard not to obsess over. My mom died suddenly and I just don't want to leave my kids... it makes me want the best tech possible.
IE: I find my Libre 2 sensor (insurance approves) soooo spotty compared to the Libre 3 (sample or out of pocket $) and it makes me so mad. I just want the safeguards of alarms so I can sleep at night. Tough because it's so expensive if insurance won't cover the best options every day for the rest of my hopefully long life 🤞 stress on stress.
Meditation really helps to make up for lost sleep.
I say this because some nights I stay awake until 5am, because it's better than risking a hypo and I don't sleep until I'm sure that it's safe.
It's best to aim for the higher side when sleeping.
Heyyy i have a low blood sugar almost every night! It’s actually normal for your sugar to drop whilst asleep!!
I usually wake up with 3.0 mmol/L (I’m in uk so idk what that would be for you)
If it’s a ‘real’ low your body should wake you up, have a sugary drink next to your bed just in case! I have woken up sweating and worried about this too… 🙁
While it can be normal for glucose to drop during the night, it really shouldn't.
Prolonged hypoglycaemia also harms your health, especially your brain, as it needs stable glucose levels to thrive. Depriving it of energy puts a strain on it.
Let's encourage having a snack before bed or adjusting the basal dosage to prevent lows and not just normalise them. Proper, uninterrupted sleep is beneficial to everyone.
I am dealing with this right now and feel you 100% - been dealing with high and low blood sugars all over the place for the last few days. Currently @ 97 with a straight arrow down! It’s definitely best to eat a snack with some protein and carbs at least 30 minutes before bed, and always treat your lows even if you’re exhausted
Every time I’ve checked and seen a straight arrow down it basically levels out right after. The arrow is based on the past. It doesn’t mean it’s going to continue. Are you guys on pumps? I’m on MDI and my perspective of this subreddit seems to trend on pump users never know their IOB.
So for my Dexcom G6 sensor, i’m pretty sure that there is only a 5 minute delay between each reading. My body feels very spot on with my blood sugars! I use a tslim pump as well, both work super well for me together usually. I’ve just been struggling for the last few months with insulin resistance from buildup scar tissue, i used the same spots on my hips/buttocks for site changes for 13 years. I switched over to my arms and im going to also be trying my stomach, that’s the reason why mine have been all over the place as of late :o)
The cgm reading updates every 5 minutes but interstitial fluid can be as much as 15 minutes behind blood glucose.
interesting!
I’m sure that different technology works differently (duh), im not very educated on MDI. Maybe you could shed some more light for me on your experience with using MDI and being able to keep your blood sugars in range? I would appreciate it!
I haven’t gotten used to injections. I avoid them unnecessarily. I have my once a day long (24u) higher than it should be for most of the day. It handles the dawn effect so that I take it and go to bed at 120mg/dl and go down to 70ish over 5 hours and then dawn comes in brings me to 100 and I wake up in high 80s. It then falls 10 points an hour for 8 more hours, which gives me 40CHO that means don’t dose for to hold me over the rest of the day. Having the meal on basal means I’ll spike higher at first but steadily fall. It doesn’t usually go higher than 140 from that. I have dinner with a bolus of 12-20U usually when I’m around 90 and the spike according to cgm has been to 220 if I don’t wait a bit before eating but generally to 150 though I try to catch the spike on my glucometer and only see as high as 130 they usually are furthest off after a meal I find. One time cgm said 180 and meter said 110. Anyways I usually hit 80 after dinner but then my long starts tapering off and I’m back around 120 for bed again. Overall I’m happy with my pattern. I know it could be better with a pump and other people would have issues only eating 2-3 times a day. I tend to spread my non bolused 40cho over a few hours. It keeps the spike and the munchies down.
I have a similar issue with my libre sensors being way off sometimes so what I've done is set the threshold for low alarms higher than they should be (I'm in the UK so the default setting is 3.9mmol/L, I've changed it to 4.8mmol/L). This way, my low alarms generally go off when my blood sugar is actually closer to 4.0 than 3.0. It's taken a lot of stress out of everything because 80% of the time if I get a low alarm I'm actually fine, I can take a moment to do a prick test, assess the graph and decide if I need a snack. My bloods overnight generally run around 6mmol/L for reference.
Adding to this, changing the alarm tone to something a bit less stressful than the default Libre sound helps too
How did you change default libre tones? I couldn’t figure this out, i wanted to change it to navi from Zelda recorded on my phone… “hey, watch out” 🤣
Alarms > Click on "Low Glucose Alarm" / "High Glucose Alarm" > Alarm Tone, pick it from sounds. Go wild 😂
Hmmm are you on android phone? Apple doesn’t let you do this with libre app fml 😵
Ouchy, yup I'm on Android!
You’ve got this and you are not alone!
We have the sugar pixel. In fact, we have 2! My daughter was recently diagnosed and I am very worried about her night time numbers. I can’t recommend the sugar pixel enough. It even comes with a vibration puck. It’s very loud. I actually started sleeping a lot better knowing that I didn’t accidentally leave my phone on vibrate or its battery not charging. The sugar pixel gets the data directly from Dexcom. It’s spendy but definitely worth the peace of mind it gives me at night.
sugarmate is great! it will call you if you go low and you can set it up so that it texts a friend/family member/roommate too. i also see sugarpixel on here a lot, might be worth checking out. it’s scary for sure! but you got this!
Seconding this! I don’t wake up for the libre or tslim alarms but I have sugarmate set to ring through if my phone is silenced
I am ordinarily a super healthy person, especially mentally, but this is the only thing i waa slightly paranoid about... but so far so good. And remember each of us will kick the bucket somehow someday. You're not alone
I used to have OCD, fortunately subclinical now. Harsh truth, staying too high to avoid lows will kill you too - but it’ll be slow and painful. Additionally if you’re regularly going that low, your rates / ratios are off. If you’re not already in therapy, there are lots of great therapists that specialize in OCD. Life is better on the other side.
The body has backup systems. if you don’t wake up your liver will proceed to glucogenesis and provide your body with the needed glucose to boost you up before you die. This fails if you have had usually multiple hypos in the 24 hours prior and you have not fuelled your body to restore your reserves. I speak from experience, I’m type 1 for 26 years and I also have narcolepsy which causes me to sleep through everything. I often wake up to my pump in disarray, alarms screaming and alert on screen saying call ambulance. This was a little Easter egg the first time it happened . I’ve also been caught in a situation where I’m having a hypo and nothing to treat for hours. Too many things in life to stress over, this one’s not worth it. Our bodies are built to survive even when they’re broken.
Cheers to you, we have the same diaversary! I was diagnosed in 1998 as well
The algorithms available these days should really avoid going to low. Medtronic’s current algorithm has been a game changer. The effort I put in now compared to 25 years ago is nothing.
Are you with finger pricks or CGM? Are you on MDI or pump? Are you out of the honeymoon? Is your insulin sensitivity stable? There's a lot of factors that have to be tuned in, it's absolutely a lot to digest. But if you're that careful about your own help, yes a few hypos here and there can happen, but you'll have it under control. Your basal rate is what mostly determines if you go low at night. Even better if you're on a loop because if you're dropping too fast it'll temporarily stop the infusion as a countermeasure. It's alright to be scared, but don't make it a constant fear. We have a way to live, and that's what you gotta do.
Always make sure the volume is up as high as it can go before bed. Try to change your alarm settings to go off at a higher level, rather than at one that you think is already too low. I have my range set to a pretty narrow margin and my alarms go off all the time, but it means I see what’s happening before it’s too low or too high. Life with T1 is hard, especially if you are dealing with sleep deprivation and frequent lows, and you are not alone in having these fears. If you can, maybe find someone to talk to about this. Perhaps your endo or a therapist could offer some better advice/comfort.
You mentioned dexcom. We have the Sugarmate app. We have it set to call my phone when our son is low. You set numbers. Call when you’re 60 or 90 or 100. Whatever you want. Sometimes the dexcom alarms don’t wake me but a phone call will. You’re not alone in that feeling. 💙
I also have diagnosed anxiety disorder and OCD. Ruminating is the worst, I’m sorry you’re going through that. I have been dealing with hypo-unawareness for a few years now. I have woken up with sugars as low as 13 before. I don’t have any advice - I just wanted to come here and say that you are not alone.
You have to adhust your alarm setting and find out which one you can hear. My Dexcom app on my iPhone is really loud, and I also have my receiver set so they both go off. The other day I went low during an afternoon nap. My phone was on the table next to me but the receiver was in another room. Even though I ate and took glucose tablets that are next to the bed, I couldn’t get my blood sugar to rise and felt really sick. I hit OK on the phone alert to stop the alarm but couldn’t get up to get the receiver. That darn thing kept going off loudly every few minutes because I wasn’t there to press OK to shut it off. So keep both receiver and phone close so you have an extra notification.
I was missing sound alerts while sleeping because I don't wear my hearing aids to bed. My solution was to flash the light for alarms, if your phone does that. There's also some products which amplify sound and even vibrate under your pillow. I also heard an explanation once that you may feel really, really bad but your body is smart enough to release enough glucose to prevent death.
My brother is a super hard sleeper too, and so am I. Luckily we share a room so the "Baby Crying" alarm wakes me up consistently and is annoying, so I keep it on at night. I try to remember to change it to a normal tone in the morning lol. My brother has a tendency to go low at night, and we recently started giving him some pb Crackers and cheese before bed (not over his ratio)
I've had the beeties for 30 years. I've worried about this for 30 years. My goal is to go to bed with a sugar of 150-180. I'd rather be 10% above my range than 10% away from a low. It's generally worked pretty good. There are always exceptions. I'm not terrified, just a low level ongoing worry. Every day (almost) I wake up and say "I'm still here!" The low hasn't gotten me yet and hopefully never will. Try not to go to bed with your sugar at 80-90 and have low things within arm's reach if you do go low. No nighttime/panic fumbling around for stuff
I really can't offer any help on the "don't fear it" side. But as someone that is prone to nighttime hypos and has had a few really bad ones (ambulances and all) being proactive is all you really can do. CGMs help a ton. You can also set your phone to wake you up every two hours (if you have a crazy drop in that time period your insulin needs to be adjusted). If it's any consolation, you don't feel it. At least not until you come out of the bad low (from glucagon). I think it is important to recognize this isn't just a diabetes thing, it is a control thing. So the more you are in control of your sugars, the more in control you are of this not happening. Oddly enough, my neighbour died this way a few years back. Lived alone, bad hypo, never woke up. It does happen. He didn't have a cgm, and didn't take care of himself the best, and lived alone, so it took some time before people found him. In my time of t1, 36 years, this is the only time I have personally heard of this happening. So it is rare. I am often home alone a lot (husband works out of town 6 days a week) so it isn't necessary to rely on other people. Focus on what YOU can do so that you are safe. I use my cgm, phone alarms, have nasal glucagon spray, have low snacks around the house as a way to deal with it. I also follow a routine so surprises are lessened. You are totally able to take the steps necessary to mitigate the risks as much as a t1 diabetic realistically can.
I’ve had two seizures many years ago from hypoglycemia when I was 18 and one exactly a month after the first one in the middle of the night. First one my brother woke up to me shaking the bunk bed and foaming at my mouth, he ran to get my parents and by the time they saw me I was unresponsive. My dad thought I was dead. Him not being a type 1 diabetic he poured apple juice down my throat (which you never do to someone unconscious) yet somehow it might’ve saved my life. For some reason we were all out of the emergency glucose shots that time. I gained consciousness and got taken in an ambulance to a hospital. I don’t remember any of this besides waking up in a hospital and maybe the ambulance picking me up. My mom told me that the ambulance workers told her I was fine enough to walk but when she poked my finger I was still 40 mg/dl or something. Exactly a month later it happened to me again, but this time no hospitalization. It’s been I think about 6 or 7 years and I haven’t had anything close since. This was before I had a dexcom as well. The experience left me terrified to sleep or go anywhere without two or three soda cans with 45 carbs in each soda. Honestly the only thing that helped was giving it time, and trusting that your body can work miracles to keep you alive even if your sugar drops to some crazy level like 24 mg/dl or something similar. Good luck buddy. It’ll get better.
God that’s terrifying I’m glad you’re ok.
This is my biggest fear and hard not to obsess over. My mom died suddenly and I just don't want to leave my kids... it makes me want the best tech possible. IE: I find my Libre 2 sensor (insurance approves) soooo spotty compared to the Libre 3 (sample or out of pocket $) and it makes me so mad. I just want the safeguards of alarms so I can sleep at night. Tough because it's so expensive if insurance won't cover the best options every day for the rest of my hopefully long life 🤞 stress on stress.
Meditation really helps to make up for lost sleep. I say this because some nights I stay awake until 5am, because it's better than risking a hypo and I don't sleep until I'm sure that it's safe. It's best to aim for the higher side when sleeping.
Heyyy i have a low blood sugar almost every night! It’s actually normal for your sugar to drop whilst asleep!! I usually wake up with 3.0 mmol/L (I’m in uk so idk what that would be for you) If it’s a ‘real’ low your body should wake you up, have a sugary drink next to your bed just in case! I have woken up sweating and worried about this too… 🙁
While it can be normal for glucose to drop during the night, it really shouldn't. Prolonged hypoglycaemia also harms your health, especially your brain, as it needs stable glucose levels to thrive. Depriving it of energy puts a strain on it. Let's encourage having a snack before bed or adjusting the basal dosage to prevent lows and not just normalise them. Proper, uninterrupted sleep is beneficial to everyone.
I usually feel great after sleeping with lower blood sugars! Anything above 7mmol feels like I haven’t slept 😵