Hey Tu, long time no see! I have a question and I was hoping someone could give me some advice.
I have always had trouble waking up in the morning if I am low or have gone low late in the night. I will wake up several hours later than normal and sometimes just to roll over and fall back asleep, even if I went to bed early that night. Eventually I groggily wake up and test and see that my BG is low. I am hypo-unaware and don't feel any low symptoms when I am awake.
A few weeks ago I went to bed with a normal bloodsugar. I woke up very, very late and with a low BG that had been with me most of the night (I'm able to tell when the low started with my Dexcom). I was HOURS late for work. I was scared and pretty upset.
Since then, I've had a number of episodes like this. I am not sure how I can wake myself up when I am low. I have become terrified of being low at night and missing work- I am afraid of going to sleep with any bloodsugar under 250. Sometimes I will just chug orange juice right before bed "just in case", regardless of my number. When I do this it helps, but also my number is super high in the morning instead!
Now, I have an alarm clock, several in fact. They are useless if I am low. I have the dexcom alarm..but I will not wake up to that if I am low. I have an assistance dog that responds to lows during the day, but she can't seem to wake me while I'm low either. It seems like when I am sleeping and go low, I become completely non responsive to stimulus. I'm not sure what causes me to wake up in the end, actually.
Anyone have any other ideas or solutions? I live alone, but I don't want to go back to living with other people.
You probably don't need me to tell you that extended overnight lows are dangerous. The "dead in bed syndrome" is thought to cause heart failures due to extended lows. This will not be a simple fix. If you do not commit to a sustained effort to get this under control, you will continue along the path that you're already on. This is a serious health threat to you.
If I were you, I would concentrate on reducing or even eliminating night-time lows instead of trying to figure out the best method to wake you up. I recommend that you work first on getting your overnight basal rates adjusted so that you don't need a bedtime snack and your BG does not go down or up.
Have you read Think Like A Pancreas by Gary Scheiner? He details a basal testing protocol that works. You must be willing to put in the effort, however. What is your BG variability like? Do you ever download your data from your Dex. Do you know what your standard deviation is? Do you have frequent highs along with your lows? I would suspect that you do.
Are you even on insulin? terry has offered a really good advise. you should calliberate your doses first n learn about the things. Think like a pancreas is very good book to have. If you are still unsure you better contacts your Dr. I didn't know there's an assistant dog as well to wake up during the lows.
Get off the pump immediatley and go back to syring insulin. They are not educating people properly on how to use a complicated medical device and it is VERY dangerous.
Instead of going back to shots, learning how to use that complicated medical device would be good advice as well. therefore, i can as well recommend think like a pancreas, or pumping insulin by john walsh. anaganitos, i wish you the best luck to get that scary stuff under control!
SC
What is "low" to you? you might try a low (50-100/day) carb approach to help stabilize your BG. Also, if basal is set right and you don't eat in the evening, you should be able to avoid the night time lows. Once the BG is under control, you might get more aware of hypos.
Dr Bernstein's book is probably worth looking at, but don't take everything he does as gospel.
It will take a while for the hypoglycemic unawareness to go away. Since that concerns you the most and because insulin pumps have hypoglycemic unawareness as a side effect and because it will take time to figure your pump out AND because you are not doing well enough to be certain you will survive these episodes, I would loose the pump and start learning about it if you want to get back on, but in the mean time, protect yourself. The pump isnt a 'good' medical device for you if it might kill you. Whats the benefit then?
I've reread my initial response and see that it is missing the emotional side of what you're experiencing. I fear that I've responded in a clinical "hypo-phobic" way that I criticize some doctors about.
This is a tough disease to manage. It's easy to think that you can just wing it while you enjoy some of the things that make life worth living. I've been there and done that. I don't write this as someone wagging a metaphoric finger at you.
I am no better than you. My control is not perfect and I struggle with managing BGs, too. More recently, I've had more success. One thing that I've learned is that managing BGs well takes a lot of time. To the extent that one cuts corners, it will show up in degraded control. You can get away with a forbidden food occasionally, but the second time is usually a big failure.
I also have a hypo-alert dog. He enhances my life tremendously. He's pretty good at catching and alerting on my night-time lows but he's not perfect. But between him and my Dexcom, I rarely miss an overnight low.
What I'm trying to say is that I understand. I know it's hard but I also know it's well within your power to make your metabolic life better. And it is so worth it, believe me. I followed the link to your web page and it appears that you are a very talented artist! You have much to offer this world.
It's never too late to make changes. Some of my most dramatic changes occurred after year 28. I've now lived with this miserable scourge for 30 years. I am lucky to have survived some mind-numbing night-time lows much like you've described during those first 28 years. I also live alone and highly value my independence.
I wish you the best and please excuse the tone of my "tough love" initial repsonse.
I didn't think you were harsh, I thought your advice was good. Fact is I am a pretty bad diabetic. I haven't had a lot of diabetes education since I was diagnosed when I was very young and my parents took care of it for most of my life. My brain turns off when I have to calculate anything. I do whatever I can to avoid bloodsugars that make me miss out on being a normal person. Mostly this means I keep my sugars pretty high, because then I know I'm safe.
Yep, I've been T1 for 20 years. While I've always had trouble waking up when low, it seems like it's happening to a higher degree lately. I'll definitely look into the book though.
As someone who was diagnosed as a kid, I can totally relate to what you are probably going through. My parents had all the diabetes education when I was young, and so when I hit my late teens and early 20s I literally had to learn everything all over again from scratch. It doesn't mean you are a bad diabetic—it just means there is a big gap in the system for young adults with diabetes (which there definitely is).
It's really important that you put in the effort to learn how to properly calculate basal rates and bolus ratios. Unfortunately, it's impossible to control Type 1 without this kind of calculation. There are a few books like Pumping Insulin and Think Like a Pancreas (the latter is probably better for a first book) that you can check out. You should also bring it up with your endocrinologist, and possibly ask if you can get an appointment with a diabetes educator who can run through the basics with you again.
Not to freak you out, but going low for extended periods really is dangerous, and really can be a matter of life or death. With a pump, though, you can program settings so that you should be able to avoid most overnight lows (I won't say "all" because that's impossible for some of us).
What is your low alarm setting for your Dexcom? If you're not waking up to the low alert, perhaps you should think about raising your number in the alerts menu so that you are with it enough to hear the alarm & can take action before you actually go low.
Right now it's set at 95. I have it on vibrate during the day and normal volume at night. I also have the double arrow alarm on it, but it seems these night lows come on very slowly so that doesn't go off. I guess I could raise it higher, I would have to change it every day then so it didn't go off too often during the day, but might be worth it. Thanks
I have to use a pump system because I am extremely needle phobic. If I had to do insulin using pen or injections, I would most likely completely avoid doing bolus insulin shots. Needles cause me to have very extreme panic attacks. Just putting the pump on or the dex is extremely difficult and requires a second person to help. My doctors have concluded that the pump is the best system for me to insure I'm getting insulin for my meals throughout the day.
anagantios, do you have access to a diabetes educator who could work one on one with you about your evening food intake, overnight basal, etc? Or an endo who is good with that?
You say that you have not done well in the past with paying attention to your db care. I suggest a review with a good teacher who can help you test out different foods and basals until you are at least safe at night. My endo prefers that I run a little high at night because I live alone. I do hear my cgm, however, so far.
The other thing to consider is the slow arousal from sleep issue. You either are in a hypoglycemic coma state or you could possibly have a sleep disorder which worsens the situation. The book recommended is fine but I think you need some immediate professional help too.
PS. I was put on a pump "because" of my hypo unawareness. I never heard of a pump causing hypo unawareness.
He's having lows everynight because he cant figure out his pump dosages, that is likley partial cause of hypo unawareness. If your running low BG on a pump, then of course it contributes. Educator really helped me. Wouldn't hurt to see a sleep specialist. No choice, gotta learn how to adjust the dosages if your gonna be on the pump, but thats hard to do. Thats interesting about the coma state. Didn't even think of that.
