I don’t want to bring the mood down here but I feel like I’m in a mess and don’t know where to start.
I am 42, a T1 on a pump, diabetes for 24 years and pumping for 6 years.
I have been frightened of hypos for 22 years and have run my bgs too high for that long. I have tried to deal with the fear with psychologists etc, trying CBT, EMDR and various other psychological methods. I am even married to a psychologist but I can’t stop being afraid.
I have retinopathy, and mild gastroparesis, and a HbA1c of 10.7.
I am exhausted all the time, and find it hard to exercise as I am worried it will cause my bgs to drop. I am so unfit that even walking fast makes my legs ache through lactic acid build up that I have to physically stop and wait for it to go off. I can only climb one flight of stairs without stopping, not for breath but because my legs hurt so much. I am not overweight, I am 5’2" and weight about 9 stone (126lb).
I really don’t know what to do next. The answer is to lower my bgs, I know that, but I just CAN’T!
Can anyone help me, I’m feeling really down at the moment.
Do you have a CGM? Maybe that would make you feel less scared of lower numbers?
Have you considered hypnosis? Just a thought since you’ve gone the CBT, EMDR route without success.
I used a Dexcom for about 4 months last year, it made me worse!!
I tried hypnosis, I couldn’t relax enough for it to work because i was frightened I’d have a hypo in the session!!!
I am basically a bag of nerves!!
Did you suffer some kind of trauma with past hypos? Just wondering where the fear of hypos comes from?
(I am the opposite, having been in DKA, I am terrified of highs. I get a perverse ‘pleasure’ out of hypos because it is the ‘opposite’ of DKA, if that makes sense?)
Can I ask how it made you worse? For me, being able to see when my BS is stable versus dropping on the CGM has made me less fearful of lows…
Have your tried medications to help you manage your anxiety?
18 months after diagnosis, I had a couple of hypos that seemed to go on and on longer than others I’d had before. They happened in college lectures and I had to get up and walk out.
More recently I have had hypos which don’t go off very quickly because the gastroparesis stops my stomach from absorbing, so I can eat loads of carbs but they don’t work. So I now have a fear that I will not come out of a hypo.
I have never actually gone unconscious but this is a huge fear for me.
By keeping my bgs above 10-12 (180-216) I am further from a hypo if anything goes wrong but I am still anxious at these levels.
It was seeing the bgs starting to drop. In my mind, I was going to go hypo because the trend arrows were pointing down.
im sorry i dont have any answers but want u to know u r not alone in this fear .i feel like i cant live alone anymore because of my lows and it seems like without the lows i cant seem to get the a1c lower than 7 . Karen
I haven’t tried anything because I don’t want to go down that route and end up dependent on antidepressants or something.
I would love to be anywhere near a 7!! Mine is 10.7!
Yes I get very anxious when I’m on my own, especially overnight which is rare though, thankfully.
Can you try to maintain your sugars only slightly lower for a few months - say 160 to 200. While that is still higher than we should try for, maybe it would give you some confidence and help you to begin to feel better.
Do you use correction bolus to treat the high sugars? if so, do you drop slowly or like a rock. That could be modified too.
There are slow to absorb carbs and faster ones. When I need a really fast absorption, I will pop the top on a can of real coke (I hate the taste, to much sugar), but it works. Also, you can use a sweet substance (juices, icing, table sugar) and hold it in your mouth for a bit before swallowing - absorption occurs a bit faster this way. It’s like sucking on a hard piece of candy to raise your blood sugar (my trick in church!).
The Dex would be helpful if you would let it. I only get bent out of shape when I get the double arrow either up or down, the rest I have time to figure out if treatment is needed. To bad the dex does not let you set the “low” for a number higher than 100. The Medtronic unit does - when I was using the Minimed CGMS, and out bikeriding or hiking, I would set my low for 140, the high for 200. I have not figured out a way to do that with the Dex.
Dee…I’m so sorry you’re struggling with this. Having relatives with severe anxiety and OCD issues, I see a lot of this and I think you have a good case of one or both of these conditions. My daughter has tried several meds…I won’t even list them since there are so many, but she has found relief with the right combo. You might reconsider the meds/CBT combo whiich is most effective for you even if you have to I see that there is a group “Diabetics with Anxiety” on this forum; I haven’t looked at it, but I bet you could find support and maybe good suggestions there too. Good Luck!
Thanks SL, I’ll have a look at that group.
Maybe this is a bad idea but maybe you can talk with your Doc and “schedule” a hypo. I imagine that it has been a very long time (if ever?) since you’ve had one. You will probably feel it before it gets too low, like 70’s? If you’re near medical people who will be right there with juice and you experience one and see that it isn’t horrible, you just need to be prepared. Once you feel a few maybe your fear will lessen. Kind of like how people with other kinds of anxiety deal with it. Face your fears!
When I was diagnosed and still in the hospital (many years ago) I had a hypo in the middle of the night and the nurse said it was good because now I know what to expect.
There are things you can take like Lorizepam that is just as needed…not something you need to be dependant on. Just take it when really anxious.
Bless your heart! I’m not on insulin YET but will be in my near future…I am type 1.5 and I too have a huuuuuuge fear of hypos!! I had a few growing up where I passed out and I wasn’t even on insulin so the thought of taking insulin just brings back scary memories!! I am afraid this is how I will be when I am on insulin. But I think a lot of my fear and worry from this stems from my anxiety disorder. Sounds like you are suffering from an anxiety disorder…not sure if you have been diagnosed with one. I too do not like to take medicine as you said below but I do have a very small dose of xanax that I carry around with me for when I am very anxious or have a panic attack…I take the smallest dose available-0.25 and I even split that into 4 because I do not want my body to become dependant on it or anything but even at that small of a dose it works WONDERS maybe because of my size but I dunno you may wanna consider trying a low dose of an anti anxiety medicine and try to conquer some of your fear before you develop serious complications. I am speaking to myself here but “whats the worst that could happen?”
Stress is generally due to lack of control. Ignore the numbers for the moment. Blood glucose (BG) control is all about movement. Where numbers are now is one thing, but we need to know where they are going. If you can have confidence in where they are going and why, then you can start to gain a measure of control.
In my quest for control, I focussed on two areas – basal rates and bolus profiles.
Basal testing is the basis of good control. Our objective here is to have flat BGs without the influence of food or the myriad of factors affecting it. There are lots of resources out there on basal testing. You need to do the research and get your butt off the chair and do it. Do each meal and overnight. My last step was an all-nighter where I tested twice every haf hour – if I’m going to stay up all night, there’s not going to be any mistakes! I can now go to bed with confidence that my numbers will stay flat. I can and do go to bed with a number and wake up at noon or later on a Saturday at more-or-less the same level.
Meal profiles are next but can be done concurrently, at different times than basal tests. The keys here are to understand both your insulin and food profiles. Have a peek at this site http://www.diabetesnet.com/diabetes_technology/dia.php#axzz1C8tIk3WU Memorize your aspart graph. The actual life of insulin is not the same as your pump thinks it is. You might use 4 hours in your pump, but the actual life line is still 6.5 to 7 hours. If you bolus at 10pm, you will know it will last until 4am. If you bolused to cover ice cream and you are not high two hours later, your chances of going low in the night is good because sugar doesn’t stick around. If you bolused for salami, then perhaps you can be more confident in your sleep. Understanding the food profiles is not easy. My approach has been to greatly reduce carbs. Bolusing a high fat low carb diet is challenging, but my numbers are less variable.
I run an A1C of 5.6 to 6.0. I’ve been 911’d nine times in my life and have experienced many nasty hypos. My last bad hypo where I needed help was 53 weeks ago, much better than my fairly recent trend of once a month which was an improvement over my pre-pumping days.