For many people living with diabetes, clicking on a new device for the first time — an insulin pump or continuous glucose monitor (CGM) — can feel like a watershed moment. Adrenaline rushes as you think, “I’m finally free!”
And then the beeps begin. And the honeymoon is over.
Those using much of the diabetes technology developed and brought to market in the past decade or so are quite familiar with device and alarm fatigue.
Take patient advocate Anna Norton. She’d been living with type 1 diabetes (T1D) for nearly 20 years when she began using her first CGM 10 years ago.
“The first alarm went off and my husband’s reaction was like I’d given him a thousand bucks,” she told DiabetesMine. “He said, ‘It doesn’t matter how much this costs or if insurance covers it. We’re getting it,’” she recalls. “Initially, we loved it.”
But their enthusiasm about the safety alarms fizzled quickly.
“It nearly drove me crazy,” she says. “Alarm fatigue is real.”
Norton is not alone. Many users of today’s sophisticated diabetes devices point to two things that drive them to fatigue: too-frequent alarms and unnecessary beeps when things are actually okay.
“When I first got my [new] pump, I wanted to drive over it with my car just to make those alarms stop forever,” says Jessica Kroner, a first-year medical school student at the Touro College of Osteopathic Medicine in New York. Having been on an insulin pump since she was 7 years old, Kroner was surprised at both the veracity of the new pump system’s alarms and at her own reaction to them.
Early insulin pumps from Minimed (now Medtronic), Disetronic, and Animas worked without alarms.
One of the selling points of advanced technology like the Minimed 670G that Kroner now uses is alerts and alarms aimed at safeguarding users from blood sugar highs and lows, and potential problems with the unit. Still, Kroner finds that she resents “the nagging.”
“It was like, you’re high! You’re low! You’re still high! You’re still low! Honestly, you just want to smash it to pieces sometimes,” she says.
“I know I am going to go a bit high after breakfast, I always have. But I also know from experience that I’m going to come down. I don’t need an alarm telling me that, usually over and over again,” she adds.
Another problem is the breakdown of trust. Constant alarms can work like “The Boy Who Cried Wolf,” where people begin to ignore the alert after too many false alarms, according to a Brown University study.
“The more alarms you get, the more you ignore them and the more you ignore them, the more frustrated you get, and the more chance there is that something could go wrong,” Kroner says.
But alarm fatigue isn’t singular to diabetes devices. Studies and articles reaching back to the early 1970s point to generalized alarm fatigue in hospital settings.
Karen McChesney in Massachusetts, diagnosed at 5 and now in her early 30s, felt her device fatigue even before alarms.
“I hated pumping,” she tells DiabetesMine. “I hated the tubing. It would rip out at the most inopportune times. My sister, who also has T1D, was on an Omnipod but I just didn’t feel like that fit into my life either.”
She did give technology another try in 2014 when she went on a Dexcom and a pump, but that was short-lived. “My body image was just terrible with that,” she says. So she avoided technology, opting instead for multiple daily injections, or MDI, until recently.
“Eventually I just kind of grew up,” she says. McChesney now uses an Omnipod paired with a Dexcom. And while it’s going better and she’s more willing to accept it, the alarms are her new nemesis.
“If I am busy with work or presenting something important, I get super annoyed when alarms go off,” she says. “And I know my body, so I didn’t really see the point.”
One clear problem that many users share is a lack of education on meaningful device settings.
D-mom Maria (not her real name) in Florida knows well how this can play out. When her daughter was diagnosed with T1D three years ago at age 11, she jumped at the chance to use the new technology. She also decided to use a CGM herself, since she has hypoglycemia. The alarms between the two of them were almost constant. And her reaction to them was not ideal.
“My heart rate would increase every time my daughter’s alarm went off. I had tons of anxiety, even when her number was actually in range,” she tells DiabetesMine.
“No one told us where to set the alarms,” she explains, so she turned to the internet, where she read that while she’d set her child’s alarms at a low of 70 and a high of 250 mg/dL, people felt she should go tighter. So she reset the alarm range to 70 to 150, “pushed by what I read and was told online.”
Immediately, the alarms multiplied.
She tried to stick with it, telling herself to push through the anxiety and alarm fatigue for the sake of her child’s health. It nearly cost them both dearly.
Two years later, Maria was in the library with her child when yet another alarm went off. Something snapped in her, driven by exhaustion and the stress of constant alarms every single day. “Alarms had been keeping me up all night for years at that point,” she adds.
In a moment of fear, she fell apart in the library.
Someone there who knew her called 9-1-1 and her husband. Maria was transported to the hospital where she was kept for a week of rest. “I basically had a mini-breakdown, thanks to those alarms,” she says.
The need for better help setting reasonable alarm parameters is dire, says diabetes psychologist William Polonsky, president and founder of the Behavioral Diabetes Institute in San Diego.
“I cannot tell you how many smart and knowledgeable people I’ve met with who struggle with this and I’ve said, ‘Did you know you can turn those alarms off?’ And then I show them how,” Polonsky says.
“We want actionable alarms, ones that people care about and respond to,” as opposed to just a bunch of noise that can be scary and anxiety-inducing, he adds.
“There is a fundamental belief among parents that if my child has a single high blood sugar they are in danger of doing damage,” he says. “I’ve said it a thousand times: There is zero evidence that if a kid goes to 300 mg/DL occasionally it causes complications. Now, if they sit there for a week or longer? Sure. But for a bit? Not an issue.”
So what can a person who wants to embrace technology but avoid alarm fatigue do? Essentially it’s about experimenting with alarm settings that work for you or a loved one.
For Kroner, that meant shutting off her CGM high alarm at some stressful times, such as during exams, and setting her low alarm to the lowest possible level. She also upped her high alarm to 270 but eventually tweaked it back down to 250.
“In training they had me set my alarms at 80 to 230, but that just didn’t work for me,” she says. “Not that I don’t want to be in range. Of course, I do. But I feel fine at 80. So 70 is a better low for me.”
“Silencing alerts for a period of hours can be great,” she says. “Particularly if I am sleeping at a friend’s house. It’s nice to not wake everyone up all night.” Being able to do that without fear or stress, she says, also comes from experiencing diabetes without technology first.
“I feel like you should know your body,” she says. “For that reason, I don’t think people should go on a CGM right away. A year or so on shots can really help you.”
For Maria, changing those settings was a big help, as well. She now has her daughter’s alarms set at 70 to 250, and does not plan on tightening them, no matter what she hears in online chatter. “We are doing really well now,” she says.
It’s important to give yourself permission to make these changes, says Dr. Molly Tanenbaum, an instructor in the department of pediatrics at Stanford University School of Medicine in California, who is currently working on a study on alarms and what makes them harder for some and easier for others.
What she sees in people with diabetes and their families is that they need to hear more often that it’s not all set in stone.
“For some, there is either a hesitance, not having been fully introduced to all of the uses of a CGM, or a feeling of not having been given permission to, say, change thresholds. These device decisions are personal and very individual,” she says.
So, if things don’t feel right, she recommends talking to your endo team about changes. And then making those tweaks, particularly in the early months.
Polonsky is also known for recommending “taking a vacation from your device” if you are feeling the start of fatigue or burnout. “It’s a perfectly reasonable thing to do. Do it safely, and don’t do it forever. But do it.”
He describes a safe vacation as a break that doesn’t last too long and involves planning ahead so your diabetes control isn’t compromised — for example, taking a “night off” each week from your diabetes-friendly meal plan, or choosing to take off your pump for a few hours or days and use injections instead.
McChesney is also a strong proponent of technology breaks and weaves them into her life.
“The next time you have a site change, just leave it off for a few days,” she advises. “There’s that diabetes term, ‘naked shower,’ and we laugh about it. But you know: It just feels so good.”
Norton agrees. “You can take advantage of [break] time to tweak things, like, ‘Do I really need a snack during the day?’ You do tend to notice how things go better while on injections. Without technology, you are forced to learn. And that can be a good thing.”
“Breaks are fine,” she stresses. “We seasoned folks know that because we survived — and survived well — for a long, long time before technology.”
Norton had another thing to figure out, though: While she was fine with breaks and appreciated the reprieve from alarms, her husband was on edge.
“He’s the one who puts the juice box in my mouth. He’s the one that feels my forehead for sweat while I sleep. I don’t know what a seizure looks like but he does. He shares this all with me, and he shares some scary parts that I just don’t remember. So I had to listen to him,” she says.
Their solution was to meet in the middle. She agreed to allow him to follow her CGM data stream even when she had alarms disabled. That way, if he saw a concerning blood sugar low when she was not home, he could call her.
“It’s working for us,” she says.
The ultimate solution could come with improved technology. After all, the better it all works, the fewer alarms. And once alarms become correct more often, the trust will grow.
“Where I ultimately see this going is personalization,” says Marie Schiller, vice president of connected care and the site head at the Eli Lilly Cambridge Innovation Center in Massachusetts. Schiller has lived with T1D herself for nearly four decades.
She says personalization of technology will allow people to choose, with their medical team, their best way to live and the alarms that will work best for them.
“As well as smarter alarms. It will be great to not look at it and think ‘oh why are you beeping at me?’ because I just took insulin and I’m going to be fine,” she says. “Overtreating is a real issue. It’s human nature. You hear an alarm; you’re going to treat. And that might not always be the right time.”
“And some people feel more comfortable at 140, and don’t want to spend their lives at 90, and that’s okay,” Schiller adds. “Systems of the future will allow for more personalization.”
Schiller also hopes they will also allow for tool flexibility, so a person can move from pump to pen and back, all while still keeping the same data flow and control. Control, after all, is what it’s all about.
“The better we do with time in range, the less alarms we’ll have,” Schiller says.