Let’s Talk About the Lows
By Alan Uphold
Public speaking professor Alan Uphold shares his experiences with severe low blood sugars and explains why it’s so important to communicate with your loved ones and care-partners about hypoglycemia.
I was diagnosed with type 1 diabetes 25 years ago, at the age of 31 – and before continuous glucose monitors (CGM) were invented. I have a family history of type 2 diabetes. I lost my great grandmother, two great aunts, and a cousin due to complications from diabetes. Even though type 1 and type 2 diabetes are different, and even though that was 50 years ago, I have seen the complications that diabetes can cause first hand. As a result, I was determined to keep a tight control of my sugar levels – sometimes a bit too tight.
Hypoglycemia is a serious issue, and one that can be dangerous if you don’t know how to handle it. That’s why it’s important to talk about what is happening when someone has hypoglycemia so that both the person with diabetes and their loved ones are prepared to get through those scary moments.
As for me, I was pretty good at managing my lows the first few years. Once my sugar level dipped below 60 mg/dl, I would get shaky, sweaty and disoriented. Most of the time, I was able to recognize the symptoms and take action fairly quickly.
Over time, my body adapted, and I appeared as if I were functioning relatively normally even at lower and lower glucose levels. Now my blood sugar can be as low as 30 mg/dl, and I can carry on a perfectly normal conversation with no physical indications that I am in urgent need of sugar – but I am not bragging about this. I have what is called hypoglycemia unawareness, and it can be extremely dangerous. Fortunately, I now wear a CGM, which warns me when my glucose levels are dipping so that I can react to the onset of a low before it becomes severe.
But it wasn’t always like that for me, and even with CGM, incidents can still occur.
The physical symptoms of hypoglycemia can include shaking, sweating, nausea, dizziness, rapid heartbeat, confusion and irritability, among other things.
It’s those last two – confusion and irritability – that I really want to address here.
Your central nervous system needs sugar to operate properly. When your brain doesn’t have enough sugar, it can result in a condition called neuroglycopenia. Neuroglycopenia alters brain function and behavior and can frequently make a person appear to be out of control or intoxicated.
Whenever I have a severe low blood sugar, I have a sudden and terrifying sense of impending doom and dread. It sometimes feels like I might die…combined with a sense of complete uselessness. It feels to me as though there is nothing I can do, so I might as well just give up. I teeter on the edge of self-awareness and can’t make any sense of my surroundings.
Enter my spouse, Jeff. Jeff and I have been together for 24 years, and we met only nine months after my diagnosis. That means that we had to learn how to deal with the lows together.
His initial reaction to my lows was panic. When he noticed me having a low, he would leap into action and try to get me to drink some juice.
My initial reaction was one of resistance. I can’t explain why I resisted, but apparently, it’s a fairly common reaction for people experiencing hypoglycemia.
My refusal would only cause him to become more insistent, and I would react by becoming even more belligerent. Eventually, he would force me to drink a full 8 oz. glass of cranberry juice with a couple of teaspoons of added sugar.
This, of course, overtreated the low, and my blood sugar levels would skyrocket back up to dangerously high levels.
Jeff’s rationale was that he had witnessed my lows, and it wasn’t pretty. He insisted that if I could only see what he was seeing on his end of these episodes, if I could only see how scary it is, I would understand why he was so panicked and upset.
This push-me, pull-you went on for several years while we tried to find the right balance between him trying to treat my lows and me trying to be more cooperative.
Because of my aforementioned attempts at keeping tight control of my sugar levels, Jeff and I have been through a few hypoglycemic incidents over the past 25 years, and a few have resulted in 911 calls.
Our first 911 call came at 4am on Jan. 1, 2000, when we welcomed in the new millennium with my first ever severe hypoglycemic episode. We had been to a party, and I overindulged that night. Aware of the fact that I had over done it, I felt that the only sensible thing to do would be to counteract all of those carbs with a big shot of insulin.
As it turned out, it was too much insulin.
So, in the early morning hours of that night, I started thrashing about, and moaning, and talking in my sleep. My erratic behavior woke Jeff up, and he immediately knew something was wrong. He tried to get me to drink some juice, but I was too far gone, and before long I was unconscious.
He called 911, and the paramedics arrived within minutes – in time to inject some glucagon directly into the muscle of my arm and quickly bring me back to consciousness.
Make no mistake, it was scary. But once I regained consciousness, the paramedics instructed Jeff to go to the kitchen and get some juice. Jeff came back with a glass of cranberry juice.
Once the paramedics were confident that I was going to be okay, one of them instructed me to please stop squeezing the glass of juice and place it on the night stand.
I responded by saying (still pretty belligerently), “No! I’m not putting the glass on the night stand!”
“Why not?” the paramedic asked.
I said, “Because there’s no coaster on the nightstand!”
Jeff said to the paramedics, “Oh yeah. He’s back to normal.”
There have, of course, been other serious times. Each of these incidents has been a learning experience.
First of all, and this is pretty obvious, we now keep a source of glucose (such as glucose tabs or usually a packet of sugar candy) every place we can think – whether it’s in the car, in the bedroom, at the office, or with us on hikes with our dog or at the beach. And yes, we now have coasters on the night stands. Most important, we communicate with each other.
It is especially important to work to reduce hypoglycemia; frequent low blood sugar increases your risk of experiencing even more hypoglycemia and can lead to hypoglycemia unawareness.
A 2019 survey of more than 4,300 family members of people living with diabetes showed that up to 64% of those surveyed felt worried about their loved one experiencing low blood sugar, and 76% believed that conversations about low blood sugar would be helpful.
You and your loved ones should have a conversation about what happens when you experience a low. If you are a person with diabetes, explain to your loved ones how you feel when you have a low. Explain how confusing and unsettling the experience of hypoglycemia is. Emphasize that the erratic (and often angry) behavior you display during an episode is more often than not outside of your control. If you are a care-partner for someone with diabetes, express how upsetting it can be for you to watch your loved one slip into that state of confusion. Let them know how difficult it is for you when they refuse to cooperate because you’re just trying to help. You may even video your loved one during a hypoglycemic episode so that they can see what occurred.
Beyond learning how to recognize the early signs of oncoming hypoglycemia, family members and care-partners should know what to do when such an episode occurs. Here are a few tips for preventing hypoglycemia, as well as treating it.
I spoke with Dr. Francine Kaufman about ways to lower your chances of a hypoglycemic episode. Here’s what she shared:
Monitor your glucose levels often.
Get a CGM if you can. It’s been a game changer for me. With CGM you can turn on low glucose alerts to warn you early enough to prevent hypoglycemia. It’s helpful to look at your glucose trend arrows, especially when dosing insulin or exercising. Consider sharing your data in real-time with a loved one.
If you can’t use a CGM, be sure to monitor your blood glucose multiple times a day: before and after meals, before, during, and after exercise, at bedtime, and when sick or any time you deviate from your normal routine (e.g., travel, increased physical activity, or extra stress). Check your glucose level before you start to drive.
Always carry a source of glucose.
Be sure to always have a source of simple sugar readily available in case your glucose levels start to dip. Don’t delay treating an impending hypoglycemic emergency.
Carry emergency glucagon in case you do experience a severe low and teach your care partners, friends, and co-workers how and when to use it.
Be meticulous about your insulin dosing.
Discuss your hypoglycemia with your health care team so you can adjust your carb ratios, correction factors, and basal insulin doses if needed. Be sure your glucose targets for pre- and post-meals, bedtime, and exercise are helping prevent hypoglycemia. Learn to count carbs so you can know how much insulin to take for certain foods. Consider using an automated insulin delivery device that have been shown to reduce hypoglycemia. This can feel really challenging, but it is important for you to decrease your hypoglycemia so you begin to feel the early symptoms of an impending low before you become confused or unresponsive.
Avoid alcohol – it increases the risk of hypoglycemia.
Attend diabetes education courses aimed at reducing hypoglycemia
You and your loved ones should also have a conversation with your healthcare team about recognizing hypoglycemic episodes so that you can prevent them before they happen. This is especially true if you are having recurring hypoglycemic events. Talk to your healthcare team about sharing your device data and be sure to look for patterns that might be causing your severe hypoglycemia. You may need to change the dose of insulin you are taking or the type of insulin or other glucose-lowering medications.
If you do find yourself experiencing the onset of severe low blood sugar, and you are still aware enough to treat yourself, you should immediately eat 15 grams of fast acting sugar such as four glucose tablets or a squeeze of glucose gel (check the package for the recommended amount) or drink four ounces of fruit juice or beverage containing sugar (like a non-diet soft drink). Talk with your healthcare team about the dose of emergency oral glucose you need to take. My go-to sugar source is a handful of Skittles, but many people prefer to use glucose tablets. Wait for 15 minutes and check your blood sugar level again. If your sugar level is below 70 mg/dl, take 15 grams of sugar and check it again in 15 minutes. Repeat this pattern until your sugar reaches 70 mg/dl. Follow up with a light snack. You can learn more about treating hypoglycemia here.
It's important to always have a hypoglycemia kit with you. In addition to keeping a source of sugar, include emergency glucagon – injectable or nasal – in your kit, at work, at school, and at home. Train your care-partners and friends on how to use it. If you are not responding or unconscious, emergency glucagon should be administered. Never hesitate to call 911. The amazing individuals who serve as emergency medical responders have saved my life on more than one occasion.
Over the years there have been many more lows in our household – some of which were terrifying, some of which we can laugh about now, but all of which were serious and dangerous. Now that I have my CGM, I can take my insulin with the reassurance that the monitor will alert me in case of a low, or if I am trending downward too quickly. But lows do still happen, and we’ve learned from our experiences.
Whenever I have hypoglycemic episode now, Jeff remains calm and doesn’t try to force me to overtreat it. As for me, whenever one of these scary episodes occurs, I somehow manage to dig deep into the dark reaches of my mind, and amid the confusion, I am able to tell myself that this person standing in front of me is trying to help me, and I need to listen to what he’s telling me to do.
Understanding each other through this journey has made all the difference. That’s why if you or someone you love has diabetes, you need to talk about the lows. Trust me when I say that it will be good for your health, good for your peace of mind and undoubtedly good for your relationship.
To learn more about preparing for hypoglycemia and talking with your care-partners, read “Hypoglycemia Preparedness: How to Know Before You Go Low.”
Alan Uphold is a communication consultant, speechwriter, and professor of public speaking at Mt. San Antonio College in Walnut, CA. He has taught public speaking at numerous Southern California colleges including LA City College, LA Trade Tech and Golden West Community College. Alan has volunteered for the American Diabetes Association’s Step Out: Walk to Stop Diabetes and has also served on the boards of Human Rights Campaign Board, Equality California, and Stonewall National Museum and Archives.
Alan currently lives in Palm Springs with his spouse, Jeff, and their rescue dog, Tucker.