is anyone married to someone who experienced unpredictable lows a few times a week?
You don’t give too much information, Patty, but I’ll see what I can share on the subject! I see by your profile that your husband is a type 1, diagnosed many years ago. Unfortunately, as Type 1’s we sometimes experience lows no matter how well we manage our condition, it just kind of comes with the territory. But there are things we can do to minimize the lows and to increase our awareness. When you say they are “unpredictable” does your husband recognize the symptoms he has when he is low? Those differ for everyone, but it’s important to be able to recognize and treat a low promptly before it gets worse. If he has fairly regular lows close together and has been doing so for quite awhile, he might have developed “hypo unawareness” which means he doesn’t feel his lows. This is not inevitable with longterm diabetes, but awareness can be regained by avoiding lows as much as possible for awhile. This might include running a bit high for awhile. How often does he test? Regular testing can show you when you are getting lower. If it is a chronic problem and he has hypo unawareness a CGMS would be a great idea to show him trends to prevent lows.
Other questions: When does he go low? At similar times during the day? Two hours after meals? It’s important to see if there is a pattern. Lows are caused by too much insulin, but it would be good to know if it is basal or bolus insulin that is causing the lows. If it is basal, he might want to decrease his basal insulin a little. If it is bolus, than perhaps his insulin:Carb ratios need some tweaking. I haven’t been diagnosed anywhere near as long, but I could see it would be easy to get into habits and not be aware when things needed changing.
Finally, are the lows treatable and mild? In other words are they in, say the 60s and he can take a couple glucose tabs and raise his blood sugar? Or are they signficantly lower putting him at risk. If so than he might want to talk with his endo and get some assistance in changing his doses and his regimen. Exercise is another thing that can cause lows, but I’m not the one to give advice on that subject!
He has had diabetes for 50 years, he is 53 now. I have read about nerve damage that can occur will long term diabetes and one of them is “hypounawareness” but also known as autonomic nerve damage. I am convinced that’s what the problem is. The bigger problem I have is explaining this knowledge of the nerve damage and convince hime that as soon as he feels the “tired” sensation to check his surgar, and if he cant because it is unavailable, then I suggest he eat some sugar. He doesnt’ seem to realize his sugar is low until he is 50 or below, and by this time he starts to believe he has time to get sugar, since he is not thinking clear. It is a vicious cycle. Before you know it I need to administer Glugocon. His numbers are as low as 16, 36, 33, at the time I administer the glugocon. I have been married for 23 years, and know him very well, and only want to help him. How can I convince him that he is unable to feel early detection, and to think “sugar” or “check sugar” if he feels the least bit tired?
I am 28 and have been type 1 for over 22 yrs and I to have hypounawareness. I do not feel lows at all meaning I can be completely fine and hold a complete conversation with you with a bg of 25 mg/dl. It is frightening but my guy and I decided to get me the CGM to help me identify these lows prior to them happening or at least before they get to low. I have a big scare at college when I went to take finals last semester and tested before the the only to find out I was 31 mg/dl with no symptoms. I had eaten and done everything I was posed to do but it seems the stress from the fianl got to me and since my professors are all nurses I had to go to the ER. Still no symptoms and bg had droped to 26 mg/dl and I had eaten no one could figure I was that low with the way I was presenting. I now where my cgm 24/7 and have not had a low below 40 mg/dl since getting it. usually my pump alerts me to a low at 70 mg/dl and I treat from there. Really my only symptom is I will fall asleep and not wake up so the cgm was the best choice for me and for my guys peace of mind. We diabetics who have had it for so long tend to be set in our ways and that may be why he is so hard to convince on trying to test more or treat when no meter is around. I would recommend sitting with him and telling him why you feel he needs to deal with this and how it scares you.
I agree with med464. Hypo unawareness has nothing to do with nerve damage, and it can occur to people with 5 years or 50 years living with diabetes. It is caused by having a lot of lows for a long time. I agree that a CGM is a great idea. But your husband has to want to take care of his blood sugar, not just you. I know that sounds harsh, but you can’t do it for him, no matter how much you love him and want to help. The fact that you are posting here and not him tells me he is not motivated to learn more and change. He sounds like he is feeling hopeless. I suggest counseling to help him deal with these feelings and to working on reinvolving himself in his own diabetes management, not relying on you. There are things you can do to get him to think “check sugar”. You can have a conversation when he is feeling normal where he agrees if you say certain words, such as “I think you’re low, remember we talked about this” he acts. But he has to “buy in” to this process. Diabetes management has changed a lot in the last 50 years. It’s changed in terms of tools available to us (such as the CGM) but it’s also changed in terms of diabetics knowing that they need to be proactive in their own care. I strongly encourage him (and you) to get counseling or join a group for type 1 diabetics. At the very least, he should get involved on here, because he will hear a lot from other diabetics who are proactive in their own care. Also, at the very least the two of you should meet with his endo and discuss his problems with hypo unawareness and what can be done about it.
I am also hypounaware and can’t tell if my BS is low. Unfortunately when you are low, you feel normal but the people around you that are close to you know that something is not right.
I was testing 18 times a day and had my basals set right. I could go along for several days with no problem. I eat the exact same things every day then all of a sudden, my BS would crash with no warning. I also have gastroparesis, which is nerve damage to the stomach – that causes digestion problems so if your food is digesting at different rates, it can really play havoc on your BS.
I live alone & have no one to help me. It got to the point I was passing out about 3 times a month. I have a CGMS – I have the Dexcom. You can set alarms to warn you when your BS goes low or is dropping fast. It has literally been a life saver for me. I would suggest checking into getting one for your husband.
A good book to learn about adjusting insulin is Using Insulin by John Walsh.
Zoe said it all:“they need to be proactive in their own care”. Patty your husband has to want to avoid the lows… Patty you wrote:“How can I convince him that he is unable to feel early detection…” It is HIS job to want to do that… I know I am sounding harsh, but he has to do this for himself… You can help him find the info and the resources about hypoglycemia… but all the “convincing” in the world will not help him if he is not willing to help himself!!!
The book Using insulin is a good source of info, as
Kelly noted. I was diagnosed 43 years ago and all the new-fangled techniques and equipment were not around. I fortunately, do not suffer severe hypo-unawareness,;but I do not have as strong symptoms as I used to have when my sugars are low; NOW I get moody and “loopy” and sleepy, and I know it is time to check my blood sugar… so I DO
. I treat as it is almost always LOW when I get those feelings.( in the low 50’s or 40"s)
God Bless,
Brunetta
Patty, this is tough. Fortunately, I feel my lows in a huge way. But feel or not feel them – if I were going low on a regular basis several times a week (or for that matter – even once a week), I’d be looking to make adjustments. He must know he can’t feel them if he ends up needing you to come to his aid with the glucogon. A constant glucose monitor (CGMS) is a great idea – would he be willing? This way the low is right in front of him on the CGM regardless of his feeling lows. If he is resistant to that, would he be willing to commit to regular testing – upon waking, before meals, 2 hours after, and before bed? Frequent lows often are attributable to too much basal insulin. Cutting back on that slightly or splitting the dose could help reduce the number of lows. Definitely see if you can find a pattern to the lows. For example – if I’m going to go to low it is either going to happen between lunch and dinner or while sleeping. That’s my pattern. So knowing that, I tend to make sure I’m a bit higher in my target range when heading to bed. I also test extra times between lunch and dinner – particularly when I’m stressed or engaging in exercise. I should also mention, as I believe others may have already in their response that nerve damage and lows are not related. This is something that is all about the insulin.
Actually, lows and nerve damage are very much related. I have gastroparesis, which is nerve damage to my stomach. I can eat the exact same food every day and some days my food digests in 1 hour and other days, it digests in 12 hours. It is very hard to predict what you stomach is going to do and it is very hard to balance your insulin and food.
Hypounawareness can be result of autonomic neuropathy. Although that is not going to cause the lows, is does make it hard to tell whether or not you are low.
As I said in my post, I was testing 18 times a day. I literally tested every hour I was awake plus some. I also had my basals set right. I did frequent basal testing and I do mine for a full 24 hours without eating. My problem is gastroparesis, not too much basal. If he has autonomic neuropathy, he probably has gastroparesis because that is part of autonomic neuropathy.
MrsAcidRock? I dunno if they are unpredictable though. If you have too much insulin for your food/ activity matrix, blooey. It also can be dicey since I’ve always felt that it’s better to run a little closer to being low and avoid running high than to run high and run the risk of complications?
I agree AR. I am fighting to keep my gastroparesis & neuropathy from getting worse & I won’t run my BS higher. Mine were not predictable - I did the exact same things every day. One week when someone told me to change what I was doing, I started off the about the same BS and I had 2 high mornings, 2 good mornings & 1 low. What was I supposed to change?
My husband really doesn’t want me to be too involved with his diabetes. He would also think it is rediculous that I am posting this. As a matter of fact this is the first time I have gone looking for a place to get support for myself because I am having difficulties with his unpredictable lows. It has effected me and my 2 daughters lifes in many ways, but I don’t think he can help what is happening in regards to catching the low before it becomes danagerous. He does take very good care of him self, goes to the endo 4 times a year and takes all of his meds, for years. No one can believe how good he looks. But no one knows about our hidden family problem. I am many responses…my goal is to have my husband take a look at the responses someday. Thanks for your response
What is a cgm monitor and how does it work? Do you know the cost, and if it is covered by insurance.
This sounds helpful, I will check intothe Dexcom. Your situation seems to be the closest I have gotten to someone with the same sympoms. How to they test for gastroparesis. He had a colonoscopy 3 years ago, and that was fine. What other way to they test for gastroparesis. He also gets blood test 4x per year.
A CGMS is a continuous glucose monitoring system. Right now, there are only 2 brands available - Dexcom & one from Minimed. The Dexcom itself is about $1,000 for the system and the monthly sensors are about $325. You are supposed to change the sensors every 7 days but alot of people get 10-14 days out of them so you would not necessarily need a whole box (the box has 4 sensors for $325). Some insurances will cover them and others you have to fight to get covered. My insurance denied mine but I appealed and won because I was passing out from lows. Your final cost would obviously be whatever your insurance covers. I have to pay 15% of the cost.
The test for gastroparesis is a gastric emptying scan. You have to show up for the test fasting then you eat radioactive eggs (it really sounds worse than it is!). Then you lay on a table and a camera follows the eggs thru your system. Most places do it for 90 minutes but some places do it longer. Mine was 90 minutes. They will know how much food is getting digested. Unfortunately, the medication for gastroparesis has some really nasty side effects so I won’t take it - I prefer to follow the gastroparesis diet and that really helps.
I will not run my bg higher either! It is sad that as diabetics we have to trade one complication for another! But I will say I think that my CGM is the best tool I use for tighter control because of it’s ability to catch me going low. The Cgm is checking me all the time I know that they are a luxury as some would call it but to me it is a necessity no doubt about that because I can not get the information that my cgm provides me from finger pricks. I would have to test my blood every five mins?? that is crazy!! I will say that yes I did fine somehow before there were cgm’s but since the tool is there and available to me I use it for everything! Basal testing, low and high predictions, meal damage as I like to call looking at the response my body has to certain foods and many other things.If your insurance covers it I would highly recommend it! I have the Mini med Revel all in one pump and CGM and I thank god for “pinky” (that my pumps name lol) everyday because I don’t live in fear anymore.
Welcome Patty. We are here to try to help.
I have been a type 1 diabetic for over 26 years, and I don’t like being in my shoes, but I wouldn’t want to be in yours either. It must be pretty frustrating. There is something different about those of us who have been diabetic for most of our lives. We have had to control it by ourselves for so long that we don’t want anyone else to help or pry or whatever. It is partially because we have spent a large portion of our lives seemingly being judged by doctors and parents and friends and coworkers for our imperfect control. It is also because we try but get frustrated and we are already beating ourselves up for messing up that we don’t need anyone else to do the same thing. When I was 12, someone in church told me that drinking herbal tea every day would cure my diabetes. Just an example of what some stupid people say.
I used to have unpredictible lows when I was taking lantus. Since I was taking it once a day, I had to use large doses. The larger your dose of insulin, the less consistent it acts. Another posibility is that long term linsulin (lantus or levemir) can work more rapidly if, for instance, you inject in the thigh and then go walking or running. That has been mentioned in a few discussions here, and possibly in a book I read. I don’t remember.
There is a great book out there called Think like a pancreas that might be a good gift for him. Only you know if he will be grateful or resentful. This book talks about the basics of diabetes…what causes lows and what causes highs. It talks about carb counting and how insulin works, like how long it lasts after you inject and how much has been used up after how much time. It taught me a lot about diabetes. The best part about it for me was reading a book that let me know someone else out there had gone through the same things I had been through. It was very therapeutic for me.
They say hypounawareness can go away if you don’t have a low below 70 for about 3 weeks. I believe it depends on if it is caused by nerve damage or not. I am grateful that I don’t have it and never have, so I haven’t checked whether or not it works.
I am not married, but I do have unpredictable and undetectable lows - in that they can happen anywhere and everywhere and the fact that I am unable to feel them coming until I am nearly at the bottom of the scale, ie well below the official hypo, was caused by using the “human” insulins (nothing human about them, they are all chemicals!) I changed to Hypurine Pork Insulins and I can now detect about 6 out of 10 hypos. Others will hit like a bulldozer!
More details are needed if we are to help you.
Welcome aboard Patty. I am a T-1 who catches my lows pretty well, but my mother on the other hand is the exact opposite. Your husband has to want to deal with is Hypos be it fine tuning his regiment or getting a CGM. My mother’s randomness with her diabetes caused MAJOR damage to not only my relationship with her but to the whole family. Her hypos had gotten so bad that when I had my first child my wife would not trust her to watch my daughter or if it had been awhile since eating hold my daughter. I will admit the relationship has gotten better since my DX a little over 6 months ago but there are some wound that will never heal.
My family got real good at seeing the signs of her lows before she noticed them. Her signs are completely different then mine she acts drunk and I get angry and sweaty. My family got to the point of not dealing with her over combativeness to checking to see if she was low that we at times just let her pass out and then gave her a Gluc shot(I know not the best or nicest thing). We have stashed the car key. Used trick when we knew she was low(pouring a half diet half regular soda).
If you want to show him how this may affect your children, have him read some of my early blogs on here, I talk about my mother in a few of them.