How many T1D folks out there feel that they are chronically sleep deprived? I barely get 4-5 hours of sleep each evening because of my D. Either I wake up with a low, am scared I’m going to go low, or am getting up to test my BG. Sometimes, I wake up to test and just can’t fall back to sleep because I’m so scared of going low, even when my BG is normal.
This has been an issue for me for years, and it started after some pretty scary nighttime hypos and then learning about dead-in-bed syndrome. Sometimes I’m just really, really scared that I won’t wake up. And, as a result, some days I’m a complete zombie (albeit, a surprisingly functional one). I’m scared to take anything to help me sleep because I am afraid I won’t wake up if I start to have a low.
I know my fear is completely rational, and I’ve found ways to work around the sleep deprivation, but I was just curious as to how many other people felt this way.
This is something I am familiar with. Staying up until 2 or 3 AM, just to make sure that my BG is stable, leaves me feeling very tired the next day. Setting an alarm or even getting someone to wake me up doesn’t seem to work. I sleep through. Somehow after staying up late one night, it is difficult to get rid of the habit. This used to go on for weeks after waking up at 2.3 mmol/L (roughly 40 mg/dL), which would really trouble me every month or so. The “I’m lucky to have survived” feeling is really horrible. Dead-in-bed was a real concern. More often, I’d wake up at the other extreme, feeling sick, after “playing it safe”.
What helped me is to eat earlier. Although I eat quite a lot of carbs earlier in the day, I avoid all carbs after 7 PM. Any carbs / insulin associated with dinner are gone by around 11 PM. This made it easier to trust a BG to stay stable overnight (once the basal was set right). The sharp drops / spikes that were scaring me before are much rarer now, so I am usually able to get to bed around midnight. Something else I look at is the “active insulin” on my pump. I don’t go to sleep if that is over 1.5U. Corrections in the evening mean that I stay up later. After drinking, I stay up for 2+ hours to make sure the levels are stable (not doing this caught me out badly 5 years ago). Although I have found these approaches to help a lot, staying up into the early morning still happens now and then.
Interesting that this should come up as a topic. I recently heard a doctor interviewed on NPR about sleep. He talked a lot about how lack of sleep or interrupted sleep can have a real affect on your health–you can get more colds, it can affect your heart–I mean this is not a good thing. And when interrupted you never go into REM sleep, which is not good–you never feel rested.
That said, I feel like I have had very, very few good nights of sleep since I got my CGM. (First let me say that I have basal tested my overnight rates, and they work are good. I have gone to a square wave bolus at a lower C to I ratio at dinner. AND I have lowered my overnight basal rate!) Monday night, I went to bed at 100. Then I started going low at 10, drank some juice; it beeped again at 11:30, more juice; then at 12 and 1. And everytime it goes off, it wakes my husband up, so there are two of us being sleep deprived and so I worry about him. It is so bad at our house that I have offered to sleep in the guest room to protect his health! But he said no.
Last night I had pasta for dinner, with a square wave (45 carbs, which is a lot for me) that I calculated at half the carbs (23). Before I went to bed, I drank some juice to head it off and had a great BG of 120. Only beeped once last night.
If I wasn’t so terrified of a bad low overnight, I would take off the CGM, so I could sleep. But neither of us would sleep then, because of the worry!
I know. I had a CGM but gave it up because it would constantly beep at night when I wasn’t low. It would tell me I was 32 when I was really something like 90. I could never get consistently accurate results with my CGM so I sort of gave up on it. I now just rely on an alarm to wake me up once or twice during the night to test. I test twice if I’ve had a day filled with a lot of lows or done something prior to going to sleep that I know will likely cause a low (like having alcohol).
I too have a significant other whose sleep is interrupted by my own lack of sleep. It’s incredibly frustrating sometimes. I really don’t know how I function most days. I probably drink a bit too much coffee, but when I tried cutting back I was even more of a zombie. Ugh.
I do many of these things. There are some nights, of course, that I’m kept up by lows or extreme highs. Sometimes I’ll have a string of waking up low or high and have to test a few times in the night to figure out what’s going on. But most of the time I don’t find diabetes interrupts my sleep on a regular basis.
Most nights I don’t eat after dinnertime. Having a bedtime snack can be nice, but a lot of times it means spending an extra hour or two making sure my blood sugar is okay before I go to sleep. I also don’t go to sleep if my IOB is more than about 0.5 units. If my blood sugar is below 6.0 (108 mg/dl), I will have a small (10g or so) snack to make sure I don’t go low, or more if I have some IOB. If I’ve exercised that evening, I will decrease my overnight basal rate by 10-15% to make sure I don’t go low.
I also sleep through alarms set for the middle of the night. I don’t usually wake up for lows unless they are very low, like 2.3 (40 mg/dl) or lower, which is kind of scary. If I happen to wake up in the middle of the night for another reason, I will always test just to make sure I’m not low, and a few times I’ve caught minor lows with absolutely no symptoms. I had some bad morning lows as a teenager (parents not able to wake me up, etc.) and we have a system now where my parents will call me if they don’t see me on MSN in the morning when I’m not living at home (currently living with my parents to finish graduate school, though).
I don’t often drink alcohol. It’s not worth the risk for me. Plus, I don’t like the taste of it, which helps!
You know, after I wrote this, it really made me think. Sometimes things get clearer when they are written.
I will stay with the square wave (I was getting really low about an hour after dinner), then my BG would go up. The square keeps it more level), but I will once again lower the lover night. I went from .45 to .40, and now will try 3.5 from 10 pm to 6 am.
I’ve had the opposite experience with my Dexcom. I slept really badly before I had it as I am prone to middle of the night hypos in the 30s. I sleep with the receiver under my pillow set to beep and vibrate, and it never fails to wake me.
I’ve also learned that a good blob of peanut butter before bed almost always averts those lows. I feel so much safer.
I do not have T1 but my 5 yr old dtr does so I can relate somewhat to how you feel. I am up every night at 2am to check her even though we have done overnight basal testing and it is pretty accurate. I just lay there thinking about what her bg probably is and can’t relax until I know. Several times over vacation I have had to give her fast carbs in the middle of the night for a bg in the 40’s. She has no idea/realization of a low. We are going to start the process to get a cgm on the next endo visit. I’m sorry you have to go through this and I hate the thought that she will too once she’s older and managing this on her own
Lately for me, this has been the worst part of D. It’s 2:00 PM right now and I’m fighting to stay awake at work. I am trying really hard to cut back on coffee, but some days it’s the only thing that keeps me going!! I think part of it for me is the FEAR that keeps me from falling back to sleep, even when I know things are holding steady.
Can it be that your basal insulin isn’t keeping you even round the clock?
Setting basal so you know what it does at all hours and that it’s not going to go low during the night can help set your brain to knowing it’s all OK! Just a thought.
There are some places on here where setting basal is discussed if that strikes a note for you.
This made me chuckle because sometimes I still go right into a crying jag instead of telling someone that I’m low and doing something about it. I don’t know why I let myself get to that point, because the symptoms are there. I just don’t always know what to do about it once I reach a certain point and crying suddenly seems like the most effective option.
