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!

Hello @smoothiesuzy, and welcome to Mayo Connect.

You do present with some very interesting symptoms. Is the doctor who ran the lab work an endocrinologist? If not, a second opinion from an endocrinologist might be wise.

Since these episodes occur only at night has it been suggested to you to see a sleep specialist and have an overnight sleep study done? This might be helpful in diagnosing these sleep related problems. I would encourage you to look through the discussions about sleep disorders. Here is a link to several discussions about sleep problem, https://connect.mayoclinic.org/group/sleep-health/. Perhaps, as you read through some of these, you can find someone with a similar problem.

I would also like to invite @dawn_giacabazi and @johnbishop into this conversation. They might be able to offer some other ideas.

You mentioned various diagnoses that you have including EBV. I'm not sure what that stands for. Can you explain that?

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Hi @smoothiesuzy, I would like to add my welcome to Connect along with @hopeful33250 and others. Your description certainly sounds like low blood sugar even though it's not the case. Do you think it could be stress related? Sounds like you already have all the bases covered mentioned in this article.

Do You Bolt Awake at 3 a.m.? Low Blood Sugar Symptoms May Be to Blame
https://universityhealthnews.com/daily/diabetes/do-you-bolt-awake-at-3-a-m-low-blood-sugar-symptoms-may-be-to-blame/

I have no medical training or background but I do agree with Teresa that it may be a good idea to check with a sleep specialist just to rule out sleep apnea. I'm hoping others may have some better suggestions.

John

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@johnbishop

Hi @smoothiesuzy, I would like to add my welcome to Connect along with @hopeful33250 and others. Your description certainly sounds like low blood sugar even though it's not the case. Do you think it could be stress related? Sounds like you already have all the bases covered mentioned in this article.

Do You Bolt Awake at 3 a.m.? Low Blood Sugar Symptoms May Be to Blame
https://universityhealthnews.com/daily/diabetes/do-you-bolt-awake-at-3-a-m-low-blood-sugar-symptoms-may-be-to-blame/

I have no medical training or background but I do agree with Teresa that it may be a good idea to check with a sleep specialist just to rule out sleep apnea. I'm hoping others may have some better suggestions.

John

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@johnbishop Great article, John!

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I have been having tremors since december……… starts out feeling the chills , like you said inside, and then I go to the shakes….. Yesterday I had five of them. They started during the nite and now in the morning. Had a mri that was fine, now have an eeg next week. The neurogologist mentioned something about anxiety attacks. If nothing shows up on the eeg might have to check in that plus I want more information if my thyroid is involved. Good luck to you ..

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@johnbishop

Hi @smoothiesuzy, I would like to add my welcome to Connect along with @hopeful33250 and others. Your description certainly sounds like low blood sugar even though it's not the case. Do you think it could be stress related? Sounds like you already have all the bases covered mentioned in this article.

Do You Bolt Awake at 3 a.m.? Low Blood Sugar Symptoms May Be to Blame
https://universityhealthnews.com/daily/diabetes/do-you-bolt-awake-at-3-a-m-low-blood-sugar-symptoms-may-be-to-blame/

I have no medical training or background but I do agree with Teresa that it may be a good idea to check with a sleep specialist just to rule out sleep apnea. I'm hoping others may have some better suggestions.

John

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Thank you so much for posting this article, John! This sounds exactly like me! I’ve been wondering what the best way to change my diet would be…now I have something to try! Feeling hopeful 🙂

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@johnbishop

Hi @smoothiesuzy, I would like to add my welcome to Connect along with @hopeful33250 and others. Your description certainly sounds like low blood sugar even though it's not the case. Do you think it could be stress related? Sounds like you already have all the bases covered mentioned in this article.

Do You Bolt Awake at 3 a.m.? Low Blood Sugar Symptoms May Be to Blame
https://universityhealthnews.com/daily/diabetes/do-you-bolt-awake-at-3-a-m-low-blood-sugar-symptoms-may-be-to-blame/

I have no medical training or background but I do agree with Teresa that it may be a good idea to check with a sleep specialist just to rule out sleep apnea. I'm hoping others may have some better suggestions.

John

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Hi John,.. the link you included here confirmed for me what I've recently found to help me the most.. I was waking up at 3:00 a.m. hungry and shaky, too.. Plus early wakeups were keeping me from getting enough rest.. felt all jittery inside and anxious.. So, I started having a boiled egg and Dave's Killer bread with sugar free jam for a bedtime snack.. Now I sleep through the night and wake up without those hateful jitters inside.. I also take 1 Benadryl every night before bed, but have been doing that for years just so I could get to sleep.. Now I feel so much better all day.. One other thing I have to do is ride the stationary bike for one or two miles every day.. That makes the legs feel much better, too.. Thanks for posting the link.. Very helpful information…

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@hotfooted

Hi John,.. the link you included here confirmed for me what I've recently found to help me the most.. I was waking up at 3:00 a.m. hungry and shaky, too.. Plus early wakeups were keeping me from getting enough rest.. felt all jittery inside and anxious.. So, I started having a boiled egg and Dave's Killer bread with sugar free jam for a bedtime snack.. Now I sleep through the night and wake up without those hateful jitters inside.. I also take 1 Benadryl every night before bed, but have been doing that for years just so I could get to sleep.. Now I feel so much better all day.. One other thing I have to do is ride the stationary bike for one or two miles every day.. That makes the legs feel much better, too.. Thanks for posting the link.. Very helpful information…

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Thanks @hotfooted, I'm glad you found something that helps with not waking up at 3 am. I wake up a few times a night but for different old man reasons ☺

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@johnbishop

Thanks @hotfooted, I'm glad you found something that helps with not waking up at 3 am. I wake up a few times a night but for different old man reasons ☺

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Yes, John… I understand because my husband is an old guy, too…

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@hotfooted

Hi John,.. the link you included here confirmed for me what I've recently found to help me the most.. I was waking up at 3:00 a.m. hungry and shaky, too.. Plus early wakeups were keeping me from getting enough rest.. felt all jittery inside and anxious.. So, I started having a boiled egg and Dave's Killer bread with sugar free jam for a bedtime snack.. Now I sleep through the night and wake up without those hateful jitters inside.. I also take 1 Benadryl every night before bed, but have been doing that for years just so I could get to sleep.. Now I feel so much better all day.. One other thing I have to do is ride the stationary bike for one or two miles every day.. That makes the legs feel much better, too.. Thanks for posting the link.. Very helpful information…

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@hotfooted I take Benadryl occasionally at night too but I always worry about taking it too frequently. Do you know if there are any negative effects from doing that? I guess I should google it. Some nights I take 3 mg 0f melatonin, that helps sometimes. Very occasionally, when I am desperate because I've gone a few nights with very little sleep I will take lorazepam. I do try to vary what I take because I worry about them being habit forming and also long term effects.

On the days I don't get to my health club to exercise I ride my recumbent bike at night. I generally do at least 6 miles, the other night I did the most ever, 10 miles! I was able to do that because I couldn't increase the tension on it so I figured I had to make up for that by riding further. My husband fixed the tension today, it was a simple adjustment.
JK

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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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