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 đŸ™‚ 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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@aclmalibu

Hi @smoothiesuzy I was surprised to read your post as I have been having the same issue of waking nearly every night sometime in the window of between 2AM and 5AM with a sensations of "nervousness" or what I've described as "butterflies in stomach" and a shaky/fearful sensation. I have had sooooooo many tests as this has gone on for over a decade now. The onset occurred at the time of a very litigious divorce, and was diagnosed as anxiety which made perfect sense at the time. However, it has continued relentlessly through the years even though I am happily re-married and have a relatively stress-free (but active and busy) life. What struck me about your post is that I too have been diagnosed with reactive hypoglycemia and POTS in addition to having a history of palpitations and occasional episodes of SVT arrhythmia . I also have a history of hormonal migraines but those are subsiding as I am entering menopause. I live in the Los Angeles area and recently consulted with a premier endocrinologist who told me it was entirely attributable to menopause and my dropping estrogen level. I would love to finally have a diagnosis, but am a bit skeptical that it is entirely menopause causing these nightly episodes as they started so long ago (I believe about 2006) and my cycles only became irregular last year. I have been wearing a "freestyle libra" glucose monitor for nearly 2 months that initially showed my glucose dropping below 50 nightly between 2-6 in the morning. I was so excited thinking we'd solved the mystery. I made sure to have a snack before bed and keep a snack next to my bed if needed and successfully have kept my blood glucose from dipping....and yet....the nightly wake up of "stage fright" or butterflies in stomach" continues even with perfect glucose levels. I have had thyroid tests as well as rheumatology and endocrinology labs galore, but so far no one has been able to explain my nightly episodes. My GP is thinking it is a blood pressure issue as I am petite and thin, and female and generally run very low. I started tracking my BP with a device that sends a recored to my phone. (It's been wonderful having measurable results from the freestyle libra glucose monitor and bluetooth blood pressure monitor to show doctors and I highly recommend these items to anyone needing to show their doctor what is happening) My BP is consistency low usually 100/60 but diastolic can even dip into the 40's at times. The premier LA endocrinologist said this is not related to my nightly episodes and simply normal BP for me. He may be right because measuring my BP when I awake with an episode of nervousness/shaking my BP is typical and pulse is on higher end but nothing crazy. My history of palpitations and SVT was being managed for the past two years by taking 12.5 mg of atenolol, but I recently stopped taking due to concerns about it affecting glucose and BP and I am doing fine without it. I am currently not taking any prescriptions meds, staying away from any caffeine (as my heart is very sensitive to it) , and just taking a few basic supplements. Please post more if you find a cause for your "middle of the night episodes" or any other related info. I would really appreciate it. Thanks so much!

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I have come to the conclusion that this old body does not like to have blood sugar levels below 100 and I get a shaky feeling when it gets to 97. In the 80's I feel really shaky so I don't let it get that low anymore, as I suffered from hypoglycemia some years ago, mostly due to stress in the home. I cured that problem with diet change and cutting down on the noise and disruptions at the time. Even the bird in my daughter's bird cage couldn't stand the noise, and it went into a corner and died. I turned down the TV and the phone ring. I am awake because I ate two delicious salads that were low calorie and need a snack which I am trying to avoid if I can. I also eat an excellent diet that is balanced and eliminates sugar and many carbs. All I can say is I am working on it. Dorisena

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@dorisena

I have come to the conclusion that this old body does not like to have blood sugar levels below 100 and I get a shaky feeling when it gets to 97. In the 80's I feel really shaky so I don't let it get that low anymore, as I suffered from hypoglycemia some years ago, mostly due to stress in the home. I cured that problem with diet change and cutting down on the noise and disruptions at the time. Even the bird in my daughter's bird cage couldn't stand the noise, and it went into a corner and died. I turned down the TV and the phone ring. I am awake because I ate two delicious salads that were low calorie and need a snack which I am trying to avoid if I can. I also eat an excellent diet that is balanced and eliminates sugar and many carbs. All I can say is I am working on it. Dorisena

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@dorisena I used to have the same problem. I would get up in the morning so shaky and weak feeling that I would immediately check my sugar level and it was never below 80, which seems to be the number that things should be fine at. I can remember being in the shower and just wanting to literally sit on the floor because I felt so weak.
I haven't had that type of problem for a very long time, actually since before my liver transplant. I have no idea what role the liver plays in this but it must have some influence.
JK

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I asked my doctor if I could have any liver problems and he said his regular blood tests would show something if I had a problem. I wish I had studied more and understood the low sugar problem back in the 1970's when I had that issue, but my doctor said nothing except to eat often and carry cheese. A paramedic explained it to my son, and my neighbor got a diet from her friend which I followed, and with a lot of vegetable from my garden, I got over the low sugar so long as I ate by the clock, going from six meals a day to four. I carried food with me to all my granddaughter's gymnastics meets which were long events and my daughter was careful to get me to a decent restaurant before I felt bad. I ate no junk food. I drank fresh lemonaide with sweetener and no sugar, which the booth food person would make for me. No chips and I carried nuts and apples in my purse. Maybe some cheese. Actually I think I may have shifted to diabetes sometimes before I was diagnosed after my husband died. I had given up baking because of the calories and didn't know there was a problem. I don't trust that my doctor will catch any liver problems before it gets serious, so I avoid alcohol and desserts like crazy. People think I am eccentric because I am so strict because many doctors are satisfied with an AIC of 7.0 while I have a lower goal of maybe 6.0. I must lose weight for the blood pressure problem as well if I am to achieve better health. I appreciate this website for support and advice. I am doing fine right now and purchased a home AIC test kit to check my blood because it has not been done for 15 months since my endocrinologist dismissed me back to my doctor. Dorisena

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At least you can say that at 80 in the morning, you do not have diabetes. Maybe in the evening if you ate a lot. That is a good feeling to me. Dorisena

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Im going through the same issue for months. Kept telling me it was nightmares, anxiety, depression. Finally they hooked me up with a continuous monitor for a week.

Just found out yesterday that may average blood sugar is 69. I drops down into the 50s while I sleep and wakes me up every morning around 4am.
I already eat a lot and I still can't get it up very high. It wasn't above 100 one time the entire time I was being monitored.

Is this dangerous?

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@bumble81

Im going through the same issue for months. Kept telling me it was nightmares, anxiety, depression. Finally they hooked me up with a continuous monitor for a week.

Just found out yesterday that may average blood sugar is 69. I drops down into the 50s while I sleep and wakes me up every morning around 4am.
I already eat a lot and I still can't get it up very high. It wasn't above 100 one time the entire time I was being monitored.

Is this dangerous?

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@bumble81

Has an endocrinologist reviewed these results? If not, you might consider an appointment.

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@bumble81

Im going through the same issue for months. Kept telling me it was nightmares, anxiety, depression. Finally they hooked me up with a continuous monitor for a week.

Just found out yesterday that may average blood sugar is 69. I drops down into the 50s while I sleep and wakes me up every morning around 4am.
I already eat a lot and I still can't get it up very high. It wasn't above 100 one time the entire time I was being monitored.

Is this dangerous?

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When I had my problems with dizziness and fainting spells, they gave me a blood sugar test where they have you drink a sugar drink and then test your levels after a certain time. That test left me with a blood sugar of 35 and I should never have driven home. Yes, it can be dangerous and it is often unconscious at about 25. You could die. I don't recommend that test. My doctor didn't recommend anything but eating often and carrying cheese for a snack. My neighbor gave me a diet that was heavy protein, low carb, and high fat and I ate six times a day. I also worked on the noise and stress in the home and "laid down the law" on my treatment and respect. It changed my health tremendously, as I had lots of veggies from my garden. I considered my self cured in a few months and had no problems so long as I ate regularly by the clock and didn't skip meals. Low blood sugar problems are more frightening than high sugar at times.
That is when I gave up on sugar and pasta, but not to a strict degree as I do today with low level diabetes. Did the doctor suggest any diet changes? That is a place to start, as your condition can cause stress and depression. I was miserable at the time, and I am a happy, confident person now despite the diabetes, which is improving. Whatever you do, avoid using sugar foods when you feel dizzy, tired, or scared. Sugar has no nutrients for your good health. I drank milk when I thought I might pass out. You can find good lists on the web. Let us know how you are feeling. Dorisena

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I am rethinking my response about using sugar for low numbers or feeling faint. With diabetes, a sugary drink or orange juice has long been the remedy for active people whose sugar levels drop and they need a quick fix to keep from passing out. I forgot that diabetes has low numbers and high numbers, depending on how well the insulin system in your body is working, and how active you are. People on a long hike can run low on sugar for energy. In this case, a liquid or snack bar can be a quick fix. You need to see an endocrinologist as we are not experts, and everyone is different. Dorisena

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@dorisena

I am rethinking my response about using sugar for low numbers or feeling faint. With diabetes, a sugary drink or orange juice has long been the remedy for active people whose sugar levels drop and they need a quick fix to keep from passing out. I forgot that diabetes has low numbers and high numbers, depending on how well the insulin system in your body is working, and how active you are. People on a long hike can run low on sugar for energy. In this case, a liquid or snack bar can be a quick fix. You need to see an endocrinologist as we are not experts, and everyone is different. Dorisena

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My problem is I do eat quite well according to the diabetic nurse and the majority of my lows happen in my sleep.

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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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