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Shaky and Sleepless
Hello, I'm new to Mayo Connect but have been researching endlessly, as I have gone from having mild insomnia (treated effectively with trazadone) for many years. However in the last month I have rarely been sleeping at all. Important background info: I have POTS, EDS, and MCAS...with a family history of these conditions. I always know if it's going to be a sleepless night (and I mean zero sleep) if when I lay down I feel shaky/jittery in my chest area. Sometimes clonidine and/or valium work, sometimes they don't. From what I've read I am experiencing something along the lines of adrenaline dumps. But most people with these explain them as episodic, not all night long. The shaking isn't keeping me up, it's whatever is causing the shaking. (I have tried also tried tart cherry juice, melatonin, magnesium, and many lifestyle changes, especially in the evening.) I'm thinking an endocronologist is my next step, but I'm on 60 hours of no sleep so far this round. I don't have the time to wait months for answers.
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Hello @nosleepsally, Welcome to Connect. I can't imagine how difficult it must be for you having tried so many lifestyle changes and still not able to get any sleep. Another member @sierrawoods posted a discussion on adrenaline spikes that sounds similar to your journey and might be worth reading through the posts.
-- Adrenaline spikes: Med detective needed, award given:
https://connect.mayoclinic.org/discussion/med-detective-needed-award-given-adrenaline-spikes/
You mentioned you are thinking the next step is seeing an endocrinologist. Do you think an overnight sleep study might provide some clues?
Yes, but does one exist in which they measure hormones, blood sugar and pressure? I had a sleep apnea test many years ago and it was normal as far as breathing goes. I just am not sure what abilities or limitations sleep studies have. I see most sleep doctors specialize in pulmonology, but also saw there are some that also specializes in neurology.
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1 ReactionAlso worth mentioning is that my BP is very low in morning...today 82/41 and that sleep aids all seem to lower BP which could hypothetically be causing my body to stay up as it panics from such a low BP...I think. Basically there are too many possibilities as to why, too many sleep aids to try to choose from, and no doctor to help....unless I can spare months or year with no sleep
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1 Reactionthis is a super late reply but if you still need help, do you get your blood sugar checked regularly? Low BP in the morning plus excess adrenaline at night sounds like your sugars are low, it makes your body release cortisol to get you up so you can eat.
I have the same disorders as you and my sugars tank fast sometimes, same with another EDS friend of mine, but I’ve no idea if there’s a proven link yet. Docs aren’t exactly sure what causes mine, they thought I might be diabetic as a child - basically my body burns through sugar far too quickly and then crashes quickly after. Blood shows it increases worryingly fast and then drops almost immediately. I lie awake in a state of physical panic, almost vibrating with adrenaline, or wake up in the night if I don’t eat something before bed
(awful idea when you have GERD but… lesser of two evils), get REALLY shaky and mean if I go just a couple hours without food, have to eat first thing in the morning and pee excessively after meals. My theory is that it’s caused by POTS as it gets worse on days when my heart rate is higher, maybe pulse affects how fast our bodies burn through carbs?
(If you can’t access regular sugar checks, get a pot of pee strips on Amazon - they check for loads of things including ketones which can indicate your body needs carbs)