Middle of the night "episodes"

Posted by smoothiesuzy @smoothiesuzy, Oct 8, 2018

I'm new here and looking for some guidance. I'm having some very strange and unsettling episodes in the middle of the night, during sleep, that feel like a cross between a hypoglycemic episode and tremors/vibrations, but my body isn't visibly shaking, i'm shaking on the inside? They wake me up by what I assume is adrenaline, but my heart isn't racing, just a light jolt that arouses me. These began last April after a rather taxing ski mountaineering excursion where I suffered sun poisoning with facial swelling. The onset of these episodes where either coincidental, or a result...I'm not sure. Because of my hypoglycemic history, I immediately check my sugars when this wakes me as it feels quite similar to a low, but I'm usually in the 70's and fine. I keep a very, very strict diet to avoid lows and have learned to manage my RH quite well, with remaining active. However, in April I made the decision to cut down on simple carbs/simple sugars to further impact my hypoglycemia even more positively. What I've noticed is, these episodes seem to coincide with any ingestion of simple carbs/sugars since April. I'm not getting any reactive hypos during the day, but during the night, around 12-2am, I'll have these episodes, but normal sugar readings. I wake up, walk a minute, it passes, I go back to sleep. These repeat until I finally just get up for the morning. So, somehow the ingestion of any small, minute (and I mean MINUTE) amounts of simple carbs will lead to an episodic night. My doc ran all his tests and everything came back normal. I eat an extremely healthy diet, so much so that I don't think I can make it any better (no caffeine, no sugars, no gluten, no soy, no alcohol, but still a rich culinary life despite 🙂 I don't feel it's a sleep issue.
I'm Seronegative Celiac, diagnosed reactive hypoglycemic 30 yrs ago, POTS, & migraines, have treated EBV off and on for years, constant urinary burning (all tests come back normal), migraines, and an increasing intolerance to simple carbs/sugars. Recent test results show thyroid is normal, adrenals are normal, but low normal in the morning, A1C is in 4's. I don't take any prescriptions, but do take some supplements. Any ideas, thoughts? I cannot pin this down!

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@dorisena

This is beyond my understanding or anything I have experienced, but it has made me rethink my episodes of the Seventies when I had low blood sugar and then the need to eat every hours or I was nauseated, and then in the early 2000's, being diagnosed with diabetes, which I have never really understood.
Now I believe that the two issues are connected and I would like to learn how it evolved. I am not educated on type 1 diabetes at all, except that the insulin is not working at all and you need insulin to live. My fear is that my insulin pump will quit working altogether, but right now it is working enough that my diet is lowering my AIC to 6.1. I am happy about that and will continue to study. I want my last years to be comfortable so I am not a pain to others. I hope we can be insightful to each other and find the right medical help for our bodies. My goal is to get off the Metformin and be safe with my eating. Dorisena

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Doc called this morning and got me a STAT appointment with an endocrinologist.

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Now we are getting somewhere! Thanks for letting us know. Dorisena

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@bumble81

Doc called this morning and got me a STAT appointment with an endocrinologist.

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Great!

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@dorisena

Now we are getting somewhere! Thanks for letting us know. Dorisena

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Well it's going to be a while before I can get in. This whole thing is highly irritating and scary.

Im really worried my hypoglycemia has something to do with my previous bouts of low cortisol.

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I spoke to my son and we reviewed our blood sugar journey and my sister's and husband's, and we feel that something makes the insulin system in the body "wear out" and not function at all which results in type one diabetes. When my sister was in a small hospital years ago, they mistakenly gave her insulin shots and didn't realize it was the wrong treatment for her hypoglycemia. She almost died before she got them to not give her shots. She ate and ate after that and was soon very diabetic and obese. Her health declined after that. The professor at college who taught me about diabetes has died, or I would ask him more questions as he lived in my neighborhood. I am definitely interested in studying and learning more because I want to keep up my health if I can. I will find a person who is knowledgeable and is up to date on the latest discoveries. I will question someone when I have the opportunity. Dorisena

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@bumble81

Well it's going to be a while before I can get in. This whole thing is highly irritating and scary.

Im really worried my hypoglycemia has something to do with my previous bouts of low cortisol.

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Hello @bumble81

I was wondering how you are feeling these days. Is your appointment with the endocrinologist coming up soon?

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Any news OP?

Some of my blood work came back funny. It sas my Beta-hydroxybutyrate is elevated.

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@hopeful33250

Hello @bumble81

I was wondering how you are feeling these days. Is your appointment with the endocrinologist coming up soon?

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I was doing well for a bit then it all came roaring back. I keep ending up in the ER dehydrated regardless of how much I drink.

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@bumble81

I was doing well for a bit then it all came roaring back. I keep ending up in the ER dehydrated regardless of how much I drink.

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Did you ever get in to see the endocrinologist, @bumble81?

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