I've had my first experience (and I hope my last) with a hypoglycemic seizure at night. Luckily, my partner is well aware of the situation and was able to call EMS, etc. However, I'm now terrified of sleeping. My new CGM will be here Monday, but until I trust that thing, and even if I do, I won't be trying to sleep through the night for quite some time. I take VERY good care of my diabetes, but my hypo unawareness is pretty severe. Anyone else care to share their experience to help me feel less alone?
Also, I do wear an insulin pump and CGM. CGM is out of warranty and I think had gone bad. When the paramedics said my BG was less than 50 it was reading 167.
Sorry to hear, Molly. I went through this almost 15 years ago and feel for you. I had a hypoglycemic seizure one day, and the next a seizure when I was 120. I ended up on anti-seizure medication and unable to drive for six months.
Be very very careful - I'm sure you know that your unawareness is worse after a reaction like this. Dump the CGM until you get a new one - they run high after the warranty expires and do more harm than good. Any chance you can go to bed a little higher than normal?
And kudos to your partner for calling EMS! Is there any chance he or she may be able to learn to use a glucagon kit? I have a wonderful husband who, after one too many EMS calls, learned to mix and jab with the best of them.
You'll get through this!
What caused the low? Did you eat weird or over bolus the night before?
Since your CGM isn't working, go back to doing an old fashioned pump basal rate check. Get up every hour through the night and test to see how your basal is doing.
It's unusual to have hypo unawareness if your blood sugars are steady. If you're having frequent lows throughout the day, then figure out why and do your best to correct.
T1 since 1977 Minimed pump since 2002
I think it would be a great idea to talk to your doctor about having a glucagon shot on hand just in case. I was diagnosed at a very young age and had multiple seizures caused by low blood sugars. Both of my parents were taught how to give me a glucagon shot. It's not rocket science and it may save your life and give both you and your partner some piece of mind. As for being scarred to sleep at night. Set an alarm to go off every one to two hours. it may be a pain but until you feel confident in your blood sugar control at night you won't be getting much sleep anyways.
I've had diabetes for 19 years now and I was diagnosed at 1. I have had multiple seizures. They happened more often when I was little but I have had two in the past year. My hypoglycemic unawareness can be pretty bad, but it's also kind of weird. Some days I'll notice in the mid 50's to low 60's range but then there are the days I don't notice until I've already dropped into the low 30's and one time in the past year I was down at 22, and still conscious. I don't really know why I seize sometimes and not others. One day I had dropped from 130 to 33 in the half hour commute from my summer job to home. I couldn't really tell anything was wrong. I felt fine, got home, helped my mom take in some groceries and decided to test again before having a snack and the meter read 33. I told my mom and walked 20 feet to the couch, sat down and started having a seizure. Needless to say, I was a little freaked out that I had just gotten off the highway maybe 10 minutes before that and that I dropped 100 points in 30 minutes. My mom was able to get me to drink a juice box. We've never actually had to use glucagon, but we do keep it on hand just in case. You're not alone, diabetes sucks =( What kind of CGM are you on? I'm thinking about trying Animas' and dexcom integrated one when it comes out in the states. I was on minimed's when I was in high school for a couple months but I stopped using it because it would bleed and hurt too much.
Awful to hear that! but I must say, when I saw the topic I couldn't help but clicking. I had a hypoglycemic seizure just last week! I know you must be terified to sleep because I'm still having alot of trouble falling to sleep without freaking out.
So what I would do is to set an alarm during the night (or several times) to wake you up and check your blood sugar. Although I wouldn't worry too much since I'm guessing by now you have CGM that's working well no?
I wish you good health!
I can relate. I had a month where I had one at least 3 times a week. When I got my CGM they said it can be off by 20%. I've had it say 299 and I was 76. My doctor told me it's only meant to be an indicator so you can see when its going up or down and then check with meter.
I have been type I for 31 years and have had multiple seizures. Typically, I have one every few years, but I have had 3 in the past two years. I actually had one two nights ago and spent yesterday in the hospital. I was getting ready for bed and felt low. I tested my sugar and it was 50 (my CGM said 70), so I had some candy. It was either too late or not enough because I fell down and had a seizure. My husband called 911 and my sugar was 38 when the paramedics tested it. How do people avoid this? My sugar often (multiple times per week) goes below 50 because I'm trying so hard to have a good a1c because I'd like to start thinking about pregnancy. Do most people not have this many lows? Or do most people not have seizures when their sugar is low?
Do you use an insulin pump? That many lows isn't normal with a pump if your settings are accurate.
The reason you're having seizures is because you may have some hypoglycemia unawareness. When your body goes low a lot your body doesn't have a stress response and release adrenaline, so you aren't aware and your body goes lower than it should.
Lows are dangerous to a fetus and the baby's brain development. Don't get pregnant until you aren't having frequent lows. When pregnant I aimed for a blood sugar of 80 and had few lows because I tested a lot (didn't have a CGM). With a pump it was pretty easy to do.
I don't have a pump. I'm on Lantus and Novolog. I don't think I have hypoglycemic unawareness because I typically feel low if I'm under 70. I felt low the other night but I wasn't in too much of a hurry to get sugar because my CGM wasn't reading low- I should know better than to fully rely on my CGM. The ER doctor said she was going to report me to the state and I will lose my drivers license so now I'm worried about that. It's just so upsetting because I've been diabetic since I was 1 and it seems that I'm having more trouble now than ever. If I'm trying to shoot for sugars of 80 - 100, how is it possible to not end up at 40 sometimes??
I recieved a letter from the PA Department of Transportation today saying that my license has been suspended for 6 months because of my seizure last week. I was really hoping this wouldn't happen. Does anyone know if I can appeal since the seizure was due to a low blood sugar? Or, does it not matter the cause of the seizure? I'm going to call my Dr tomorrow and see if she has any suggestions, but I'd like to hear what others have done in this situation. I was upset enough about the ER trip last week... this just made it worse.
Very sorry to read about the PA DOT decission to suspend your driving privilages. I have heard about this with truckers before, but never someone like you. What did your Dr say, or do for you? Anything? There must be some kind of an appeal process. The CGM is just a guide, I too can start to feel a low starting, thenlook at the CGM and see a normal number. I always go by how I feel. It has been over 25 years since I used an ER for a low. I have refused to go before, many years ago. The EMT's that responded to the call agreed that all I needed was a "SNICKERS BAR" Today, even if the rare seizure does happen, I am awake enough to treat. The shakes are horrible, but a trip to the ER is worse in my mind. Reading your story only confirms that. I always go by how I feel, still testing of course. If I feel low, I always am, so it's time to treat with 15 carbs, yehh right. Ussually, and almost always, if I get into the shakes situation, I can barely think straight, so I end up going from 1 extreme to the other. A glucagon kit would be a good thing to have on hand. The pump has done wonders for me, and the lows are few, and far between with it. I could not ever think of being without it now a days. Jennagrant gives great advice!!
Wishing you good health, and the best wishes for your work towards starting a family.
Type 1 since 1966
Pumping since 2000
CGM Since 2009
Accepting Those Things I Cannot Change 1 Day At A Time
I don't think there's any way to have tight control on shots without having lows. Check into getting a pump. Doing so will improve your life and may create cause for you to get your license back.
For now, set a higher target blood sugar, maybe 120-150 so you have a cushion. Once you start a pump you will be amazed to see that all the highs and lows of the past weren't you being a "bad diabetic". They were caused because the timing of long acting insulins doesn't fit the physiological needs of a person. It can work okay temporarily, but after 20 years people start having hypo unwareness and other problems.
I'm sorry for your situation, but if you're having surprise lows then it's best to not be one the road until the problem is corrected. Even though it's a medical condition, a low diabetic can kill people just as surely as a drunk driver.
Take care. Let us know what happens.
Thanks for your replies. I always like to read your posts- you both have great advice and it's encouraging to read about others doing well after so many years of diabetes!
For now, I have to surrender my license, but my Dr needs to fill out a paper for the state to decide if I can get my license back soon. We'll see what happens, but Jenna- I do agree with you that I shouldn't drive if my sugar is out of control. I guess I just don't think of myself as have uncontrolled diabetes, but mabe I should.
Jenna, I see that you have the minimed; Jed- what kind of pump do you have? The one that sounds the most appealing to me is the Omnipod because it's tubeless, but I do worry about the size of it. We also recently got a hot tub and I really don't want to have to stay out of it!! I have always said that I don't want a pump, but I will get one if I have to for my control. So far, my doctors haven't pushed me to get one, but we'll see after my episode last week. Is the real benefit of the pump the way that the long acting insulin can be adjusted so that it's not even throughout the day (as opposed to how Lantus works evenly for 24 hours)? Is there any difference in how the short acting insulin works? If I can have the same control by giving myself more injections, I would prefer to do that over getting a pump. But, now I'm wondering if it's even possible.