November 10, 2010 the FDA and NIH held a public workshop to discuss progress towards a semi-automated insulin delivery/ glucose monitoring system.  This workshop was “webcast” meaning anyone with internet access could watch and listen from their computer.

Screenshot from the FDA - NIH Public Workshop This workshop lasted all day, and I was only able to watch a few hours of it.  It was well worth the time to me, and I thought it was pretty cool to be able to get a glimpse of some of the dialogue from all sides.

There are many emotional hot spots around this project, and I’m ignoring all of them for the purpose of this particular post.  What I’d like to talk about is something that hit me hard while watching, and has stuck with me ever since.  It is also closely tied to my last post about those we’ve lost to diabetes.

I think I’d like to talk about this briefly, then stick the fear and sadness back in a box until something else cracks open the seal again.

During the presentation there was a section showing CGM graphs from those who died in their sleep.  It took only a second for my heart to stop and for a cold chill to run through me.  I couldn’t hear what the man was saying, I couldn’t read anything on the screen.

I was stuck looking at a graph I’ve seen a thousand times on my own CGM.

Picture of my Dexcom graph going dangerously low at night.

Of course it didn’t look exactly like mine, but it was close enough to register with me that any of these “cases” they were talking about could so easily be me or you or any of us.  What made me wake up, but these others not?  We were looking at CGM graphs, so they had the same tools I do.

That low I had was long, and at just after Midnight, and it looks like it took me a while to wake up and test.  Just like them.  Except they didn’t wake up.

I was talking to a friend of mine from the YMCA yesterday.  He’s a pastor at a local church here, and we were talking about prayer.  He asked me about my prayer life, and I shared that every single day I thank God for waking me up again.  I talked about the deaths that have been on my heart and mind lately, and how diabetes can sneak up and take us so quickly and quietly in our sleep.

He thought a bit, and to his credit was really trying to understand the layer of terror that diabetes wraps us in as we go to bed.  He tried to liken it to walking outside and being killed by a bus, or getting in a car accident due to someone else’s bad driving.

In the moment I thought that yes, that sort of fits, but it’s not quite the same.  It doesn’t carry the same weight for some reason.  But why?  A freak car accident is just as terrible as a nighttime low, maybe worse.  I don’t know.  I just can’t put my finger on why that analogy doesn’t sit well with me.

I think I should feel safe if I’ve made it through the day into my bed.  I’ve managed to avoid all of the hazards out there and am safe now.

But sometimes it’s the scariest thing in the world.

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13 Responses to Chillingly Familiar Graphs

  1. [...] This post was mentioned on Twitter by Lorraine , diabetesblogs and Scott K. Johnson, Martin Wood. Martin Wood said: RT @scottkjohnson: New #dblog post: Chillingly Familiar Graphs http://bit.ly/dSZ7Lh [...]

  2. val says:

    Brrrr…. not a week goes by without at least one of those showing up on my CGM either. What has always scared me is that six years ago, after wearing one of the old Minimed “blind” CGMs was downloading the thingy at the doctors and seeing that one night I spent seven of the eight hours I slept below 40. That is why we opted for paying outright for CGM until insurance covered it, rather than, say, saving for retirement or kids college.

    In my view it just shows that the tools we have aren’t good enough yet.

  3. Angie says:

    The analogy IS different. Granted, they are both something we can’t control…. to a certain extent. While they are all examples of things that we really have no control over, with the nighttime low – it’s the fear of the unknown. It’s just as you said – what causes you to be the one that wakes up during a nighttime low and someone else not?
    With a freak accident – there is someone else to “blame”. It’s not your driving, but theirs. It’s not you that hit the bus while you were walking, but the bus hit you. Why? Because of their bad driving. We’re able to justify it and explain it away. It may not make sense, when analyzing it now, but we do it.
    For overnight lows, there is really no one to blame. The CGM does it’s job and alerts you. But what really happens so as not to wake up? No one really knows what happens – are they so low they’re in a coma? Did the heart go into a strange rhythm and cause a heart attack? All of the above? None of the above? Did they wake but not fully, etc. Yes, some answers can be determined after the fact, but it is still fear of the unknown because we don’t know exactly what happened second by second.

    There – did a babble enough? I hope it made some sense. And, of course, I could be just totally off base and justifying it all in my head somehow! :-)

  4. Sysy says:

    I fear this too now for the first time. I didn’t know it happened to people until recently. I haven’t been able to get a doctor to clear me for a cgms but, I am searching for one that will. Maybe one last line of protection.

    You know what? I just thought to myself out of nowhere…”wow, I haven’t been over 400 in almost four years.” Then I tested and saw a 424 staring back at me. Well no wonder I feel so crappy the last hour. Sigh…insulin, meters, cgms, it’s all clearly not enough to save us. We need a lot more.

    Gonna test for ketones now…

  5. AmyT says:

    Great post, Scott. I think the different lies in the fact that a “freak” accident is just that — something highly unlikely to happen to you.

    With diabetes, the longer we have it, the less we detect the oncoming lows, and scary nighttime hypos can become a regular occurrence – a danger that’s very real and present.

    Ugh.

  6. Karen says:

    Scott, this post really speaks to me. Last night my CGM low alarm woke me up so I grabbed my meter, which told my my blood sugar was 43. I felt fine – no symptoms at all. What if I slept through the alarm? What if I sleep though it tonight? Just because I try like heck not to let my mind dwell on these questions, doesn’t mean they aren’t there . . .

  7. tmana says:

    As Angie says, the analogy is different. We expect a certain number of traffic fatalities — just not that they will happen to us, to to someone near us. We do NOT expect people with diabetes to “just not wake up” — we expect they will die of heart attacks, DKA, kidney failure… not hypoglycemia, especially not overnight hypoglycemia.

    I’m going to add a couple of other variables into the mix here: overnight insulin delivery (if using a pump), or dosage and timing (if using MDI); circadian circulatory cycles (why do folk get “restless legs” at night); body movement cycles (peripheral neuropathy seems to worsen when we are not actively moving our extremities — such as happens when we sleep; perhaps circulation does overall as well?); circadian body temperature cycles (ask any woman who’s ever attempted “the rhythm method”). For those of us whose hypertension is not related to people stresses, our blood pressure rises at night; for the rest of us, it drops. There may be other related symptoms and effects (such as sleep apnea) which affect our ability to sense a low or our willingness to rise to address it. (Many times when I start shivering/freezing/becoming hypothermic at night, I’m too tired and cold to try to rise to check blood glucose, which is usually slightly elevated, or blood pressure, which is significantly elevated despite — or perhaps because of — antihypertension medications, or body temperature.) I can understand “I’m too tired; I’ll attend to it in the morning” becoming something too oppressive to fight against — and, in the end, becoming fatal.

  8. Wendy says:

    That looks like Sugar’s graph from last night. I didn’t hear it. Neither did she. But words can’t describe the fear that races through my heart when I realize it’s been bottomed out for an hour – or 2. Finger stick revealed 107. Sigh of relief.

    Until the next night.

  9. minnesotaAnn says:

    Some weird thoughts…….To me as a fellow T1 the bus accident doesn’t feel right because most T1s in a sense, are a cautious people, we look both ways every time before walking into the street by monitoring our blood sugars, calculating carbs and insulin, every minute, every hour of every day…..How about the analogy of dying from a brick falling out of the sky?

    The other aspect comes from the “normal” public totally understanding and sympathizing for a bus accident death and treating a T1 death more along the lines of “another inattentive diabetic died in their sleep”. I still get questions from my OWN family and close friends that knock me to my knees because they are so TOTALLY incorrect. WoW, you think that, after all these years of watching and knowing me?

    Goes to show that each of us really only knows our OWN stuff……
    Ooops must be having a crabby day, probably need to test me blood sugar. (apparently I’m British all of a sudden).

  10. Kendra says:

    Wow, Scott. Seeing the CGMS graphs of people who didn’t wake up…I think that would hit me like a sledgehammer, too. Your graph is so scary, and even more so because uh, it looks like it’s common to all of us with Type 1. I guess I was living in a la-la land before I read this post, telling myself that when I wake up from a low (and I always have, so far) that I can’t have been low for very long. Maybe 15 minutes, maybe half an hour. That’s usually how long it takes me to feel it during the day. Just treat and get back to sleep, no biggie. It’s more likely that I’m low, and I’m low, and I’m still low, for HOURS, and finally it gets bad enough to trigger a panic response in my body and wake me up. It makes me really sad, not in a self-pitying kind of way, really, but just…it’s so sad that we have to go through that.

    Guess I should stop procrastinating on getting a CGMS. I hate how it constantly bitches at me during the day, but overnight those annoying beeps could make all the difference.

  11. deanusa says:

    ahhh %&****&^^%&&***!! thanks scott. this scares the crap out of me. especially since i am now deep into the throes of not being able to feel lows anymore. and “low ” and behold i dont hear the alarm of the cgm like i was able to before.
    “hey d gods? i was only kidding about what i said when it was wrong and waking me up! really i didnt mind.i had to get up at 3 am.”

    all day long the d is there lurking surprising leaping over tall buildings.its not right that it interrupts the time that is for rest and healing. its not right that i do think about this every couple of days and then going to sleep is impossible. its really messed up to actually wake up in the morning and say to ones self “huh? i didnt die”. wtf.

    that analogy does not fit. its not the same. or is it? its chance.its luck. its the devil dealing the cards. there is no skill or knowledge or a way to beat the house in either case. i really dont want to play this game anymore! i want my membership to be revoked. lol lets just call it a draw and i will retire.

  12. Jonah says:

    In the only published graph I’ve seen of a guy who died of a low in his sleep while wearing a CGM, the monitor in question was an I-Pro. It was blinded, and it did not alarm.

    • Thanks Jonah.

      I don’t have any details on what was used for the presentation I saw, but it seemed to me they had two or three examples. I’ve seen the one you are talking about in Vol 16 No.2 March/April 2010 issue of Endocrine Practice.

      I think my graph looks a lot like that one too. There’s even a little kick upwards similar to the noted callout listing “Possible glycemic response to counter-regulatory hormones.”

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