Ranga Posted March 12, 2023 Report Share Posted March 12, 2023 Even on the worst days, I feel better most evenings after 6pm. Anyone know the reason why? Could it be related to diurnal cortisol cycle? Quote Link to comment Share on other sites More sharing options...
erinlia Posted March 12, 2023 Report Share Posted March 12, 2023 I am the same way, for sure. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 12, 2023 Report Share Posted March 12, 2023 I have had bad days and then rallied in the evening. does not happen to often which for me is good. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 12, 2023 Report Share Posted March 12, 2023 The theory I have heard is that we tend to be best hydrated later in the day and most dehydrated in the AM after overnight with no fluids. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 12, 2023 Report Share Posted March 12, 2023 3 hours ago, MomtoGiuliana said: The theory I have heard is that we tend to be best hydrated later in the day and most dehydrated in the AM after overnight with no fluids. Might be right. i tend to drink more fluids later in the day or evening. Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 12, 2023 Report Share Posted March 12, 2023 Also, some of us have reverse cortisol curves with low levels in the morning and high in the evening, which can feel like a boost in the evening. Quote Link to comment Share on other sites More sharing options...
Ranga Posted March 13, 2023 Author Report Share Posted March 13, 2023 5 hours ago, MikeO said: Might be right. i tend to drink more fluids later in the day or evening. Same here.. I can't drink water due to gastroparesis like symptoms until the evening. Quote Link to comment Share on other sites More sharing options...
Ranga Posted March 13, 2023 Author Report Share Posted March 13, 2023 1 hour ago, Sushi said: Also, some of us have reverse cortisol curves with low levels in the morning and high in the evening, which can feel like a boost in the evening. Interesting.. I am on an antidepressant withdrawal forum and for most of us this is true, and it's apparently due to high cortisol in the morning, not low... Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 13, 2023 Report Share Posted March 13, 2023 As far as I can tell, after two years researching this: a) Nobody knows b) It’s not related to cortisol You will find the same question on forums for CFS, thyroid, brain fog, dysautonomia, undiagnosed – common thread appears to be fatigue, although maybe all of them have an autonomic/OI component that just hasn’t been identified. I would estimate that I have seen at least 300 people saying it. (Obviously I only read English so there are presumably many more.) The only possibly relevant statement that I’ve seen in reading dysautonomia research is “sympathetic tone is higher in the morning”. My personal hypothesis is a circadian rhythm in the body counteracting whatever is going wrong, or itself going wrong all day then coming right. (My bet is inflammation.) It’s definitely not waking up low on fluids in my case because I don’t get symptomatic until I eat. Also, why would it resolve at the same time every day? Each day we eat and drink different amounts, so that seems unlikely. And wouldn’t symptoms improve gradually, as we gradually top up our fluids, instead of fairly suddenly? If it is hypovolemia, I think it is resolving because of something else happening in our body. There will be a way to settle the argument (at least for hormonal involvement) eventually. Scientists are making a very cool wearable monitor that will be able to track all sorts of hormones throughout the day: https://www.uib.no/en/ultradian Initially it will be used for people with Addison’s disease and other life-threatening cortisol conditions. It will be provided by a hospital or specialist to be worn for a certain time, like a heart monitor. Eventually it will trickle down to us, I imagine, maybe not to us being individually monitored but in research at least. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 13, 2023 Report Share Posted March 13, 2023 Here are some studies that look at POTS and time of day: https://www.ahajournals.org/doi/10.1161/res.119.suppl_1.46 https://pubmed.ncbi.nlm.nih.gov/21751966/ https://pubmed.ncbi.nlm.nih.gov/26857333/ https://pubmed.ncbi.nlm.nih.gov/34055686/ One study found a modest benefit from melatonin: https://pubmed.ncbi.nlm.nih.gov/24495468/ I would guess that most studies are conducted in office hours. Testing people at night would cost a lot more and dysautonomia funding is scarce as it is. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 13, 2023 Report Share Posted March 13, 2023 23 minutes ago, Sarah Tee said: Also, why would it resolve at the same time every day? Each day we eat and drink different amounts, so that seems unlikely. And wouldn’t symptoms improve gradually, as we gradually top up our fluids, instead of fairly suddenly? If it is hypovolemia, I think it is resolving because of something else happening in our body. The answer may not be the same for each individual of course. For me I feel the symptoms do improve gradually (I am thinking of times I have been in a bad flare up). But I agree it's more complicated. I think it is due to hypovolemia (in my case) but for some reason later in the day my body starts holding on to fluids better. I also can feel a lot worse after eating and this is especially the case in the AM. I have to eat very small amounts and protein/fat rich--not carb rich. Quote Link to comment Share on other sites More sharing options...
Machair Posted March 13, 2023 Report Share Posted March 13, 2023 I am exactly the same and I have always thought this to be dehydration in the morning as I am more symptomatic then, but meals will also bring on symptoms even in the evening. As a general rule though morning are far worse and always have been. I have had dysautonomia for 27 years now ( Coxsachie Virus) and the symptom pattern remains worse in the morning better in the evening, but I can wake up far too early symptomatic at 4am drenched in sweat in a panic which will improve with a 16oz glass of water in 20 minutes so blood volume I am sure is too low as the night wears on. My morning blood pressure is usually low, especially the pulse pressure standing, eg 90/75 and the heart rate is too high. By the evening this is normally a bit better but not always. I wish I knew the cause and the cure as lifestyle measures are the way to improve things but they don't always work! Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 13, 2023 Report Share Posted March 13, 2023 7 hours ago, Sarah Tee said: The only possibly relevant statement that I’ve seen in reading dysautonomia research is “sympathetic tone is higher in the morning”. I have HPOTS and always, every day, have the most energy in the morning. I pretty much jump out of bed and can do light chores until about 10 am, then I fall into a slump lasting the rest of the day. I do believe that in my case this has to do with sympathetic activity, although it seems that the adrenaline wears out my reserves quickly. If I push myself past my limits I go into Fight-and-Flight mode. My theory is that I can benefit from the adrenaline for a while but my body does not process the adrenaline correctly and when the levels become excessive I over-compensate. If I rest and allow my levels to come down slowly then the parasympathetic system takes over and I bottom out. At least that is how I explain it to myself. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 13, 2023 Report Share Posted March 13, 2023 1 hour ago, Pistol said: always, every day, have the most energy in the morning. I pretty much jump out of bed and can do light chores until about 10 am, then I fall into a slump lasting the rest of the day. Aha....Me too. Unlike so many of us, I tend to have my best hours early in the day and as it wears on, I wear out. No one has ever officially told me I have HPOTS, but I do have high levels of plasma epinephrine and norepinephrine, so maybe @Pistol's explanation applies to me too? It is curious, though, and makes me want to know: why does it work as it does for us? What is going on???/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 13, 2023 Report Share Posted March 13, 2023 8 hours ago, MomtoGiuliana said: I also can feel a lot worse after eating and this is especially the case in the AM. I have to eat very small amounts and protein/fat rich--not carb rich. Food has always bothered me. Took a while but we did figure out that i get post-prandial hypotension not always too bad my BG might drop 20-25 points but i feel it . add diabetes to the mix and food is not very attractive to me. I have tried a number of strategies but always revert back to just one meal a day and limit carbs to 20 grams or less per meal. so far i have felt better (not perfect) but better. The post-prandial hypotension and blood sugar spikes are very reproducible. Quote Link to comment Share on other sites More sharing options...
Bergbrow Posted March 13, 2023 Report Share Posted March 13, 2023 4 hours ago, Pistol said: although it seems that the adrenaline wears out my reserves quickly. If I push myself past my limits I go into Fight-and-Flight mode. My theory is that I can benefit from the adrenaline for a while but my body does not process the adrenaline correctly and when the levels become excessive I over-compensate. This is me too. @Pistol your morning energy is what I wish for when my insomnia isn’t constant. I CAN have more energy in the mornings but definitely not when I haven’t been sleeping well. But regardless, as the day progresses, I also decline. At some point in the afternoon, I am also bottoming out. By the evening, just like clockwork I’m extremely symptomatic. I’ve tried switching up my activities (or lack thereof), food/drinks, amounts/times but evenings are always a symptomatic problem summer, winter, doesn’t matter. The symptoms in the evenings are the hardest to control. Quote Link to comment Share on other sites More sharing options...
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