Severe Hypoglycemia – Seizures, Hallucinations and a Trip to the ER
A bout of extremely low blood sugar landed me in an ambulance to the ER.
Yesterday morning I woke up to two paramedics and a police officer standing over me in my bedroom. I was on the bed and my wife was hurriedly handing them juice boxes and cracker packs. “Can you drink this?” the paramedic said, holding a Hi-C juice box in front of me. By that time I had been seizing and hallucinating for the previous fifteen or twenty minutes, but I remembered nothing. As I began to become more coherent, the fear of the uniformed men standing around me gave way to the harsh realization of what had happened. I took the juice box and drank as quickly as I could. Looking up at my wife, her face said it all. The nightmare that I couldn’t remember and was still trying to make sense of, she had just lived through.
How low was my blood sugar?
My wife told me that when the paramedic tested my blood glucose level, he told her that he couldn’t get a reading because he suspected it was too low for the meter. I suspect that this, coupled with the fact that I was now conscious, was why they chose not administer a glucagon shot. We had a glucagon shot on hand at the house, but my wife hadn’t been able to get it in me since I kept trying to push her away. “Who are you!? Get away from me!” is what she told me I was saying. There’s no doubt that the hallucinating was the worst part of the experience. You can’t see or recognize the person standing right in front of you. One person feels like ten unrecognizable voices and figures converging all around you.
After finishing the juice box and a bit of cranberry juice, my wife put my socks on me and helped me into my Adidas sandals. Surrounded by paramedics, I made my way down the first flight of steps, made a pit stop to pee, and then slowly continued down the next flight of steps to the front door. I got onto a stretcher and was loaded into the ambulance. I had been through this once before a little over five and a half years earlier, and I knew that other than maybe an MRI and further evaluation at the ER, the worst of the nightmare was most likely over.
As the ambulance drove off, I had been unaware of the wrong turn that my wife had watched it make prior to its arrival at our townhome. With its lights flashing and siren going, it had accidentally turned into a set of twenty or so patio homes that sit in an area across the street from our own (I could rant here about why paramedics don’t use GPS, but I won’t). Thankfully, the paramedic found his way back out of the neighborhood without error. Along the way, the paramedic in the back with me tested my blood sugar again and it had already climbed to 91. My wife’s parents had been out to eat at Bob Evan’s and were already on their way to pick her up.
They arrived at the hospital an IV or two after I did. She had also called my parents during the ten minute drive to the hospital. My wife and my mother-in-law came back to the room in the ER where I had been taken. They both still looked very worried, my wife still shaken up. I greeted my mother-in-law just before a technician came in to do an EKG. He asked me to change into a hospital gown for the test (just the top, I left my pajama pants on). My mother-in-law said she’d go wait in the lobby with my father-in-law.
After the test, my wife reached over to take my hand. Tears filled our eyes, “I’m sorry,” I said. She told me I didn’t have anything to be sorry for. The nurse brought in some food for me to eat. At this point, I was feeling a bit nauseated, so I only drank a small carton of orange juice. The doctor came in and suggested an MRI after I told him I had a bit of a headache and that my jaw was sore. The test went quickly and after the results came back clear, I was released from the hospital after being there about an hour and a half. Before leaving, the nurse checked my blood sugar and it was 164, a little high but I was more than content with that.
My wife’s parents drove us home. I made my way up to the bedroom to try and sleep. My legs felt like they weighed 300 pounds. My mother-in-law stayed for a few hours to be with my wife and to keep an eye on me while my wife went to the grocery store to try and refill an old glucagon prescription. I spent most of the day sleeping off and on, waking up to check my blood sugar every few hours.
Today, a day later, after a good night sleep I feel much better. My wife is sleeping now. She was too worried to sleep much during the night and feels more comfortable doing so while I’m awake, at least for today. My jaw is still sore and I can’t open my mouth all the way. The muscles in my upper back and at the front of my ribs are also sore. My wife told me that during the seizures I was opening my mouth very wide, reminiscent of a character from The Mummy movie. I was also holding my arms very tightly to my chest. The seizures would stop momentarily and then start up again. It’s hard to imagine what it must have been like for her. What seemed like only a minute or two for me was really a fifteen to twenty minute long nightmare for her, a nightmare that I had always hoped she would never have to see. Even still, I feel lucky to have had her there.
My name is Kevin Lang and I am a Type 1 Diabetic who was diagnosed in May of 2004 at the age of 27. My last A1C was 6.0 in May 2015. I used to use daily shots of Lantus and Novolog to control my blood sugar until I switched to the MiniMed Paradigm Revel Insulin Pump in February 2011. To learn more about me, follow the about link in the menu bar.
I’ve had a simmilar experience with a Severe Hypoglycemia during sleep. Went to hospital too. What is your medication? I use Lantus and Apidra and my hypo occured due to a mistake that I made on the carb count before sleep. Regards.
Guilherme, I had been using Lantus and Novolog. I also may have made a mistake counting carbs for a bag of microwave popcorn and a nectarine. However, I was also in the process of lowering my daily shot of Lantus ever since I had started counting carbs more rigidly 2 weeks earlier. On several occasions during that week, low BS had been waking me up a few hours after going to bed because that was when the Lantus was peaking (I was shooting before bed). I had been trying to reduce the Lantus to alleviate this, but it was too little too late. Afterward, my endocrinologist recommended splitting my Lantus shot, but even after I did that, it still peaked and caused me to go low at various times. Needless to say, I switched to the MiniMed Revel Insulin Pump last week in an effort to achieve better control.
Kevin, Lantus always worked fine for me. I used to take the Lantus shot before sleep, but frequently the hypos appeared, so my endocrinologist told me to take the Lantus shot in the morning and since than the night hypos are very rare. Congratulations for the website. Very usefull information.
My doctor switched me to morning Lantus injections for a similar (but less severe) reason: night-time hypos in the 50’s.
I’m so glad you’re better. Hugs to your wife for being such a trooper. She’s a brave girl, but then you know that, eh?
Jean, as I tried to gain tighter control over my blood sugars with Lantus and Novolog shots, I saw more and more lows. Also, the Lantus’ varying absorption rates further made it a difficult animal to control for me.
The experience has undoubtedly been hard on my wife. It’s not until something like that happens that the potential severity of the disease is truly revealed. Understandably shaken a bit at first, she has been right there by my side offering help and support with each new adjustment I make in the management of my disease, including starting on the pump/CGM and making more rigid changes to my diet.
When I think back to what happened, I wish I could strike that moment from the record of our lives. I wish she wouldn’t have had to be a witness to the worst of the disease. However, we both agreed that if we could have somehow recorded that moment, we could have used it as evidence to help convey to others how serious of a disease diabetes is. I’ll be forever grateful that she was there that morning.
Thanks for the detailed report of your hypo episode…very educative…I’ve experienced lows, but nothing as severe as the one you’ve described…must say it was thanks to your alert wife and family and the paramedics and the follow up in the ER that saved you…I just wrote about an Australian today who did not get the help he required…you can read it @ http://wp.me/pV7Ii-ag
yep, i’ve only had two of these in my whole 12 years with type 1 – and the last one was at the beginning of this year. it was only a half one, thankfully i was caught choking, just before i would have fitted, and was somehow brought round into consciousness with some juice.
it’s weird not remembering, because then the symptoms afterwards don’t make any sense. i had a really painful jaw, and my brain took a long time to start working properly again… strange.
i’m so so thankful that someone was there to help me too, goodness knows what would have happened otherwise!
I have gone through the exact same situation more than once in with my hubby’s lows….hang in there
My wife has frequent hypoglycemic episodes (several times a month). I am on high alert 24/7. When it happens, it happens quick. She’s been in car wrecks and has been lost for hours on more than a few occasions (in one case just 20ft from driving off a ravine and into a river). She gets upset if I ask how her BS levels are. Like I said, I am on high alert and will do ANYTHING to avoid ever going through that nightmare again. I’m glad to see I’m not alone, but is there any solution? I have been late for work, have missed entire days because of her lows, can’t get out of town to visit family or even a one day business trip. I’ve come home from work and found her unconscious, rolling around on a floor full of broken glass (bleeding all over), thowing up, and totally violent. I am afraid this will happen in a public place and everyone is going to think I’m harassing her. She also doesn’t wear a medic alert bracelt (I suppose it would call attention to her disease). How does one deal with someone who just doesn’t seem to want help? Seriously, I can’t keep this up at the risk of losing my job and sanity (let’s just say I drink a LOT more than I used to).
David, the reason I was going low as often as I was, is in my opinion twofold. One, I wasn’t adhering to a strict low carb diet, which was causing me to have to shoot a lot of insulin at mealtime, especially for pasta and meals with lots of bread and other heavy carbs. Too much insulin is the cause of hypoglycemia and when I was eating a lot more carbs, I was having to shoot large amounts of insulin with my meals. Because I shot a large amount all at once (unlike a working pancreas that releases the insulin more gradually after eating), foods like pasta were hard to manage. I would often go low and then later go high once the carbs from the pasta kicked in. A lot of diabetics believe that they can eat whatever they want. However, this is NOT true, even when using an insulin pump, specifically because even the pump cannot mimic a working pancreas exactly. As a result, these diabetics still have highs and lows, as they attempt to manage all the extra carbs.
My daily shot of Lantus (long acting insulin) was also a problem due to its varying absorption rates. It basically pools under the skin and gradually absorbs throughout the day. However, it does not absorb consistently in the same manner each day. Therefore, I would sometimes see lows at varying times during the day for that reason as well.
I switched to an insulin pump in February. It has taken some getting used to, but since it delivers gradual doses of insulin throughout the day (more like a working pancreas), it seems to be helping me more. As a result, I no longer have to take the Lantus and deal with issues from it.
I also started using a continuous glucose monitor (CGM), which can alert me to falling blood sugars. It’s not perfect, but it has saved me from going low on several occasions so far. It’s not a miracle device, but it’s something that could potentially help your wife, who is having a significant number of issues with lows.
My advice would be to talk to your wife and help her to understand how you feel. My wife has been on high alert as well recently, but I’m trying to do everything I can so she doesn’t have to worry as much. For years, I acted more like I was normal than a diabetic. After all, for most of the day, I could just ignore that I had a disease. I didn’t like talking much about it either. I just ate, did my shots, exercised a bit and went about my day. However, after passing out, seizing and coming close to death twice (once in 2005 and once this past January), I’ve fully accepted that I have a disease and if I don’t do something about it, I will be faced with complications down the road, or possibly a sudden death from hypoglycemia.
I now understand that things don’t have to be the way they were. The changes I’ve already made are helping a lot. From my own experience, the tough part is truly accepting the seriousness of the disease and the effort that it takes to manage it. I pray that your wife understands this sooner than later. And proper management doesn’t mean there still won’t be bumps in the road here and there, but the bumps will be much smaller and much easier to get past, resulting in far less worry.
One suggestion would be to connect your wife with another diabetic that she can talk to so that they can help her to understand these things.
Your wife and I have very similar episodes. I have been on an insulin pump for 14 months now and it has helped a great deal BUT I have low sugar problems at least weekly at my job… and ONLY at my job. I reduce my bolus amount to 65% which, typically, causes my BSL to go through the roof but does not eliminate my severe lows (does seem to reduce them slightly however).
Last week I “woke up” in the parking lot of my job, being held down by four of my managers after I apparently punched one and shoved another. Today I experienced hallucinations for the first time and this was, by far, the most terrifying experience because I am worried that this is indicating some deterioration of my cranial functions and, quite frankly, my brain is the only thing that was ever worked well on my body!
The plethora of doctors I see all tell me that these occurrences are “rare” and blame me for having an uncontrolled diet, lack of exercise, an occasional beer, or any number of other things, none of which seem to have any true bearing but provide the docs with an out.
I am sorry for your experiences and hope that you and your wife can get things leveled a bit so that you both can have a little peace of mind… but I am glad to know I am not the only one who goes through all this.
Duncan, now that I’m a few years removed from that episode, I can say that the insulin pump has helped, but perhaps the biggest factor was the changes I made to my diet. Tweaking your basal is important. Most pumps will even let you set up multiple basal patterns. You could set one for work days and another for off days. You’d just have to remember to switch for those days.
When I’m playing a sport or doing something active for a period of time, sometimes it helps to eat something with lasting carbs beforehand, a slice of bread, etc. Obviously, I don’t bolus for it. This will provide a slower uptick to your blood sugar over a longer period of time, acting against the physical activity that can cause your blood sugar to drop. It is very important to understand what’s causing it to drop at work and how to effectively combat that, whether that’s reducing your basal rate or eating the right snack beforehand and again later if needed. Other strategies might be to bolus a little less for breakfast if that’s close to when you start work and are physically active.
If the hallucinations are happening during episodes of hypoglycemia, I wouldn’t worry too much about deteriorating brain function, as the hallucinations are a symptom of severe low blood sugar. I’ve had them a handful of times, but not in a few years, prior to my diet change. It’s basically your brain not having enough fuel to function properly, kind of like a car putt-putting when it’s running out of gas.
Try reading Dr. Bernstein’s Diabetes Solution. I don’t follow his diet exactly, but it will point you in the right direction for better blood sugar control. The most important point from the book is the Law of Small Numbers, which means the fewer carbs you eat in a meal, the less insulin you’ll need to shoot, and the fewer swings you’ll see in your blood sugar.
All the best,
Kevin
Thank you so much for sharing this. I have a seven year old daughter with type 1 – it’s her 4th anniversary of her diagnosis today – and also a diabetic husband and I juggle their hypos… Laura had a severe hypo in the middle of the night on Saturday, her third, but the first for over two years – hallucinating, screaming horrendously, terrified, shaking. Terrifying for all. I don’t know what she saw in her hallucinations and don’t want to ask, for fear of perpetuating, but it was horrible. It felt like a scene from The Exorcist. Sometimes it strikes me that no one person gets diabetes – it is shared by the whole family. Then I feel guilty for NOT having diabetes myself! Thank you for helping me see it better from the perspective of the person who has it.
Had the same issue. Bloodsuger 1.8 mmol/l and was feeling no low bs level. Greets from the Netherlands
Thanks for sharing your story. I just stumbled upon your blog when doing a google for a new cgm site. It’s great to hear someone else’s story and realize you aren’t alone with the crazy/scary things that happen. I had a very similar experience in 2003, but instead of the ambulance making a wrong turn, my husband kept getting a busy signal when he called 911. I also do not remember anything until waking up in the ER, but my children who were 5 and 9 at the time and certainly my husband will never forget it. Talk about guilt, try reading a story your youngest child writes five years later titled “The Moment I’ll Never Forget” and it ends with “this was the most tragic thing in my life that I’ll always remember”. My husband administered a glucagon shot, but I didn’t respond to it at all. He has had to do so two other times with great success fortunatly. Thanks again for sharing!
Becky, thanks for your reply. As scary as it is for us to experience severely low blood sugars, I don’t think it’s half as bad as it is for those who have to watch it unfold, especially since its hard for us to remember most of it. I know what you mean by guilt. Although my wife and I don’t have kids at the moment, coming to and seeing the look of fear on her face and imagining what she must have gone through, makes me wish I could take it back, as I’m sure you wish with regard to your own experience. I just try to focus on the few positive things for me that resulted from it, such as switching from shots to an insulin pump, getting a CGM shortly afterward and starting a strict low carb diet, all of which are working out well. Hopefully, we can both avoid similar future lows.
I had to go to the ER today because I had low blood sugar levels and had a seizure while walking into my kitchen! I’m 14 so I’m scared I will have another seizure in school! Do you have any advice on how to control my levels when I can’t have get meals every 2 hours in school??
You should first talk to your doctor about how to better manage your blood sugars. I would also recommend you and your family read Dr. Bernstein’s Diabetes Solution, especially the part where he talks about the Law of Small Numbers and his suggested diet plan (he is a Type 1 himself). Basically, the idea is that having to inject large doses of insulin at meals can lead to significant swings in blood sugar levels like the one that you experienced. Therefore, if you eat the right foods and keep your carbohydrate intake down for each meal, then you will have to inject less insulin, which will lead to fewer low and high blood sugar levels. This concept makes perfect sense and has worked very well for me.
Also, you should always have your tester within reach and some type of fast-acting sugar to raise your level. I use Dex4 Glucose Tablets. There are other brands and they are available over the counter at most pharmacies. They are even available in tubes that you can carry in your pocket, but make sure to always have enough with you.
I know that it’s scary for you and your family, but the more that you learn about the disease, the better you will become at managing it. That’s what I’ve discovered in my own life.
Take care.
My partner has lows all the time. He can get down to 1 on the glucose monitor and not realise he is about to start fitting. He is now getting auditory and visual hallucinations that are effecting his general mental state. Added to the depression caused by the disease it is a constant battle to keep his spirits high. He’s 42 and had the disease since he was 27. I will refer him to your blog as your information on carb control was very interesting. He attends the Diabeties Clinic and diet control is never discussed. He is very fit and eats well but we were both under the misconception that he should be having more carbs – so thanks for the info.
For all you carers out there during a fit I talk very calmly to him, give short instructions like “drink now” (he will often mistake the juice for something else and try and swipe it away) and “I am testing now. You are coming up. It’s OK”. He says that he can hear me and understand and it calms him (so the opposite would be true if you freaked out!).
Take care!
I’ve been a type I for 25 years and only had a couple of scary incidents. Once I was driving and couldn’t find my way home; another time I was also driving, my daughter was with me, talking to me, and I was staring straight ahead not talking. She kept saying “Mommy! You’re scaring me!” But nothing serious has happened in the last 8 years or so until last night. I never knew there were hallucinations during severe low blood sugar attacks. I felt weird and was seeing strange colors, so I tested my sugar and it was 35. I started eating all the cookies and ice cream I could find. Started feeling nauseous. Tested again and it was 31. I was out of sugar in the house (and I live alone). So I just laid on the couch hoping it would start coming up. Tested again and it was 28. Exhausted, just laid down again until I realized I should call 911. I reached over to the coffee table to grab my phone and fell on the floor with a thud and realized I couldn’t move. That’s the last thing I remember. I woke up in my bed having no idea how I got there but was soaked in sweat. Tested again and my sugar was 359. I live in a new city where I don’t know anyone. Moved across the country 3 months ago to be with my long-term partner, only to discover he was now with someone else. So the loneliness is particularly scary with events like this.
Maria, thanks for sharing your story. I lived alone for almost a year at one point and I know how scary low blood sugars can be in that situation. The best advice I can give you is to use something much faster to raise your blood sugar instead of cookies and ice cream. Your experience is exactly why things like cookies and ice cream are the wrong tools to use to get your blood sugar up. They take too long to work and you end up eating so much that it can lead to an upset stomach, continued low blood sugar at first and eventual high blood sugar. It’s one thing if cookies and ice cream are your only option, but I find that diabetic sugar tabs are far and away the best option for raising blood sugar in most situations. I use Dex4 tabs, which are pretty much straight dextrose (plus some artificial flavor and coloring). They work fast and you know exactly how many carbs you’re getting. Target and Walmart have their own similar brand sugar tabs. When your blood sugar is that low, carb-heavy soda or sugar-laden fruit drinks can also be a pretty good option for getting a lot of sugar into you quickly, though they won’t react as fast as the diabetic sugar tabs.
I would also recommend having a glucagon shot on hand. It would react faster, though it might be hard to administer the shot by yourself when you’re that low.
Also, please remember to always test before doing things like driving and getting into the shower, which are perhaps two of the worst places to have low blood sugar. I knew a woman who kicked a whole threw the wall of her shower from seizing on the shower floor. Even worse is the drowning possibility.
Another tip for living on your own is to always know if your blood sugar is level, rising, or falling, especially before bed.
Maintaining level blood sugar is key to avoiding these events. “Dr. Bernstein’s Diabetes Solution” is a fantastic book for learning how to achieve better blood sugar management.
Take care.
Hi Kev,
Thanks for your suggestions and support. All good suggestions. The thing is, I had the sugar tabs on hand but it didn’t occur to me to take them. I get so confused when my bs gets that low. I have to find a way to remember to use them, but not sure how to do that. When I was driving and my sugar dropped (had been driving for 2 hours and my levels were fine before I left) I drove by at least a dozen gas stations and it didn’t even occur to me to go in and get juice. Worse yet, I had the tabs in my purse. Do you know anything about how to get an assistance dog to help alert you before it gets that serious?
Maria, there are a number of guide dog programs across the U.S. and elsewhere. A Google search will reveal quite a bit of information. I cannot recommend any specific program, as I am not familiar with the various organizations that train and/or provide the dogs. I know the dogs can be costly, but there may be affordable ways to obtain one that I am not aware of. If you’re experiencing a lot of blood sugar swings, definitely try to stabilize your blood sugar levels. Adjusting one’s diet is usually the most important change to make in order to achieve balanced blood sugars. Remember, though an assistance dog could be a valuable asset and potentially save your life, it’s not preventing the reason the sugars are rising or falling in the first place.
My husband has had type 1 diabetes since he was 18 months old. He just turned 35. I have been married to him for 11 years. Since I have known him he has had roughly 4 or 5 seizures. In his life time I would say he has had double that amount or more.
I might look into starting a support group for family of diabetics as some of the issues I go through would really really hurt my husband’s feelings if he heard them. I feel some what angry for him not taking better care of himself. I find him to be selfish. I am also somewhat resentful to his family as if they are glad they don’t have to deal with him as he is my problem now.