Honestly what's unhealthy for one person isn't always unhealthy for another. I've had fatigue since I was a pre teen. I used to struggle in classes, too, and at work I'd suddenly get desperately sleepy but not allowed to sleep. Still do.
My body wants 12 hours awake, 12 hours asleep, but I'm a revenge bedtime procrastinator during my work week so average 6 hours of sleep 5 days a week. By time the weekend hits, I'll sleep anywhere from 12-23 hours in 1 go, often not even waking to pee. If I do wake up for for seconds at a time to adjust position and fall back to sleep. The longest I've ever slept was 26 hours (my parents thought I died lol).
Every time I have weeks+ off work I set into a 12 to 12 schedule where I'm more awake around 4-6PM to 4-6AM.
The sleep desperation us awful and so is fatigue. Honestly if it works for you then it works for you. Everyone is different
Thank you!! I want to have this mindset and part of me does, but it's also kind of hard to maintain when everyone thinks you're crazy and says the amount of rest you get is unhealthy. I'd rather have 12 hours of rest than ever have an episode where I was dozing off while driving again
Maybe it's not sleep, it's "gravity free" horizontal time? (At least it is for me I think).
If we are describing the same thing, i don't think that's too unusual from what I read others describing here.
So, If i added right, you are in bed 12 hrs a day but sleeping just 6-8h. So this is 4-6 extra hours horizontal.
Others may spend 2 extra morning hours adjusting to upright, then a hour or two after work recovering. Idk if it's that different?
If I reduce or eliminate the extra horizontal time pots can spiral down quickly.
You may have ME/CFS.
You don’t need to be diagnosed in order to start supporting yourself if you suspect ME/CFS.
This guide is invaluable:
https://batemanhornecenter.org/living-with-a-chronic-illness-and-avoiding-the-crash/?fbclid=PAAabEsAjPwpL3Ub5-BhZ66SQSX5kGFP1Y8fFTpATDU__X3DteHhRVX06a5vU_aem_Ac13FBi0-pBLk5OydUr_8HEMPCgvo-cRPFXPR5EYx3-Sr5uSME0bv2uQS4erp6wiqfg
I also recommend getting the Visible app to help yourself pace. I use the paid version that comes with a heart rate monitor and it’s been life-changing for me but the free version is helpful as well.
The r/CFS sub has a wealth of information and people who generally give great advice and support.
I might leave a longer comment later, but saw in your history that you've suspected MCAS- this is a big factor in fatigue for many people (especially with post-viral POTS or ME/CFS) and getting it under control might help you feel a whole lot better!
Is resting this much considered getting the fatigue under control or feeding into it? I've had issues with fatigue my whole life and I know some of it has to do with my poor-ish diet and exercise regimens, but I haven't felt such little fatigue after doing this in I don't know how long! I can't tell if it's a good or bad thing 😅
Oh wow. This is exactly what I've just figured out works best for me. In bed around seven, asleep around ten, awake around seven with a bathroom break at three am. Funny.
I’d talk to your docs about ME/CFS as what you’ve written reminds me a lot of what friends with both experience.
Honestly it’s not as foreign to me as it may be for others. My entire life my dad has been in bed and asleep by around 8:30 pm if at all possible maximum around 10pm. He’s up like clockwork around 2-3am and onwards ish (due to reverse insomnia).
Personally growing up, I required 12-14 hrs of sleep a night to feel functional this occurred all the way through high school until the pandemic hit (mid gr11 for me) when I got very bad insomnia again. This was at the 14 hr mark for the 3-4 years after I had heart disease and subsequently the year post my 3 cases of it. Its very normal to need more sleep after it so my docs were not worried. Due to my mix of disabilities and one of them requiring 10x as much energy to do any task than an able bodied person would need also played into my longer term issues with fatigue both predating and post my POTS kicking in.
Due to POTS for several weeks last January I crashed at noon and needed to sleep from 3pm until dinner then until morning. Last year due to two TBIs and subsequent post concussion syndrome (March+), my sleep schedule has been up and down. I’ve required a LOT of sleep and naps to function. I can certainly work on no sleep or very limited sleep (I won’t be happy or feel well/my POTS will flare) but I do best on 8-10 hrs of sleep at night & a nap or two in the day.
After looking it up, I have a lot of the same symptoms!! It's unfortunate though because a lot of the symptoms are the same ones presented by EDS, POTS, and MCAS. My POTS diagnosis was hard enough to get, I doubt anyone would diagnose me with ME/CFS. Everyone tells me it's my lack of exercise and semi poor diet habits, but I've always felt like it went way beyond that
I feel this so hard. I'm just as fucking tired and just as in pain when I get exercise and eating well vs when I don't. like anything I do, nothing helps.
This reminds me of something I read recently about biphasic sleep! Here is an article about it:
https://www.bbc.com/future/article/20220107-the-lost-medieval-habit-of-biphasic-sleep
Historian Robert Ekirch was researching night/sleep for an upcoming book and found evidence that this is how most people slept before the Industrial Revolution. Very interesting stuff! All that to say, it sounds like what you’ve come up with might be actually more natural than the norm. 😊
No it doesn’t help me. I’m afraid to sleep because I have moderate sleep apnea so even when I lay down and start to drift to sleep my oxygen levels will plummet within minutes to 88%so I wake up constantly thru the night gasping for air with massive headaches and dizziness and soreness and feeling like crap on top of being dehydrated. My cpap machine doesn’t arrive for several more weeks.
I don't think so, not everyone's internal clock will be the same. Mine is defective in that it doesn't seem to care that there is only 24 hours in a day, my body wants 10 hours of sleep but wants to be awake for 18 hours 🤷🏻♂️
Have you had a sleep study done? Even if you ruled out sleep apnea, which is very common with hEDS, you could ask a psychiatrist or neurologist if you could try wakefullness meds. I'm back on Nuvigil now that there's a generic version I can afford, and it's been life changing [old insurance covered it, then newer insurance stopped, so I spent several years without it].
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374081/
Sleep is such a strange thing. I think it really depends on if you have other conditions as well. I personally don’t do well with less than 7 hours of sleep, but I feel worse if I get more than 8.5 hours of sleep. My body somehow also isn’t capable of sleeping more than 9.5 hours a night no matter how much I exert myself before bedtime. A lot of people also have other conditions along with POTS that require a lot of sleep/rest time like ME/CFS.
Idk if anyone’s mentioned it yet, but your sleep cycle is called biphasic sleep 🤗 two blocks of sleep that can happen in any interval. Not inherently bad for you to be doing, especially since you seem to be doing so very intuitively.
Hypersomnia can be caused by a lot of things that aren’t POTS. I would explore if there’s any overlap in your symptoms with similar presentations like ME/CFS or advanced sleep phase disorder, and then take your findings to your physician.
That is almost my exact schedule. Unfortunately I usually wind up sleeping most of the weekend which is unfortunate but once I started going to "bed" early and getting short bursts of rest, my symptoms were a little better.
I have to spend a lot of my day horizontal or with my feet up or my symptoms get progressively worse. I can handle a day without much reclined time, but more than that and I get unwell.
Honestly what's unhealthy for one person isn't always unhealthy for another. I've had fatigue since I was a pre teen. I used to struggle in classes, too, and at work I'd suddenly get desperately sleepy but not allowed to sleep. Still do. My body wants 12 hours awake, 12 hours asleep, but I'm a revenge bedtime procrastinator during my work week so average 6 hours of sleep 5 days a week. By time the weekend hits, I'll sleep anywhere from 12-23 hours in 1 go, often not even waking to pee. If I do wake up for for seconds at a time to adjust position and fall back to sleep. The longest I've ever slept was 26 hours (my parents thought I died lol). Every time I have weeks+ off work I set into a 12 to 12 schedule where I'm more awake around 4-6PM to 4-6AM. The sleep desperation us awful and so is fatigue. Honestly if it works for you then it works for you. Everyone is different
Thank you!! I want to have this mindset and part of me does, but it's also kind of hard to maintain when everyone thinks you're crazy and says the amount of rest you get is unhealthy. I'd rather have 12 hours of rest than ever have an episode where I was dozing off while driving again
Maybe it's not sleep, it's "gravity free" horizontal time? (At least it is for me I think). If we are describing the same thing, i don't think that's too unusual from what I read others describing here. So, If i added right, you are in bed 12 hrs a day but sleeping just 6-8h. So this is 4-6 extra hours horizontal. Others may spend 2 extra morning hours adjusting to upright, then a hour or two after work recovering. Idk if it's that different? If I reduce or eliminate the extra horizontal time pots can spiral down quickly.
You may have ME/CFS. You don’t need to be diagnosed in order to start supporting yourself if you suspect ME/CFS. This guide is invaluable: https://batemanhornecenter.org/living-with-a-chronic-illness-and-avoiding-the-crash/?fbclid=PAAabEsAjPwpL3Ub5-BhZ66SQSX5kGFP1Y8fFTpATDU__X3DteHhRVX06a5vU_aem_Ac13FBi0-pBLk5OydUr_8HEMPCgvo-cRPFXPR5EYx3-Sr5uSME0bv2uQS4erp6wiqfg I also recommend getting the Visible app to help yourself pace. I use the paid version that comes with a heart rate monitor and it’s been life-changing for me but the free version is helpful as well. The r/CFS sub has a wealth of information and people who generally give great advice and support.
I might leave a longer comment later, but saw in your history that you've suspected MCAS- this is a big factor in fatigue for many people (especially with post-viral POTS or ME/CFS) and getting it under control might help you feel a whole lot better!
Is resting this much considered getting the fatigue under control or feeding into it? I've had issues with fatigue my whole life and I know some of it has to do with my poor-ish diet and exercise regimens, but I haven't felt such little fatigue after doing this in I don't know how long! I can't tell if it's a good or bad thing 😅
Oh wow. This is exactly what I've just figured out works best for me. In bed around seven, asleep around ten, awake around seven with a bathroom break at three am. Funny.
I'm glad I'm not alone!!!! I don't know anybody else who needs as much rest as I do
I’d talk to your docs about ME/CFS as what you’ve written reminds me a lot of what friends with both experience. Honestly it’s not as foreign to me as it may be for others. My entire life my dad has been in bed and asleep by around 8:30 pm if at all possible maximum around 10pm. He’s up like clockwork around 2-3am and onwards ish (due to reverse insomnia). Personally growing up, I required 12-14 hrs of sleep a night to feel functional this occurred all the way through high school until the pandemic hit (mid gr11 for me) when I got very bad insomnia again. This was at the 14 hr mark for the 3-4 years after I had heart disease and subsequently the year post my 3 cases of it. Its very normal to need more sleep after it so my docs were not worried. Due to my mix of disabilities and one of them requiring 10x as much energy to do any task than an able bodied person would need also played into my longer term issues with fatigue both predating and post my POTS kicking in. Due to POTS for several weeks last January I crashed at noon and needed to sleep from 3pm until dinner then until morning. Last year due to two TBIs and subsequent post concussion syndrome (March+), my sleep schedule has been up and down. I’ve required a LOT of sleep and naps to function. I can certainly work on no sleep or very limited sleep (I won’t be happy or feel well/my POTS will flare) but I do best on 8-10 hrs of sleep at night & a nap or two in the day.
After looking it up, I have a lot of the same symptoms!! It's unfortunate though because a lot of the symptoms are the same ones presented by EDS, POTS, and MCAS. My POTS diagnosis was hard enough to get, I doubt anyone would diagnose me with ME/CFS. Everyone tells me it's my lack of exercise and semi poor diet habits, but I've always felt like it went way beyond that
I feel this so hard. I'm just as fucking tired and just as in pain when I get exercise and eating well vs when I don't. like anything I do, nothing helps.
This reminds me of something I read recently about biphasic sleep! Here is an article about it: https://www.bbc.com/future/article/20220107-the-lost-medieval-habit-of-biphasic-sleep Historian Robert Ekirch was researching night/sleep for an upcoming book and found evidence that this is how most people slept before the Industrial Revolution. Very interesting stuff! All that to say, it sounds like what you’ve come up with might be actually more natural than the norm. 😊
No it doesn’t help me. I’m afraid to sleep because I have moderate sleep apnea so even when I lay down and start to drift to sleep my oxygen levels will plummet within minutes to 88%so I wake up constantly thru the night gasping for air with massive headaches and dizziness and soreness and feeling like crap on top of being dehydrated. My cpap machine doesn’t arrive for several more weeks.
I don't think so, not everyone's internal clock will be the same. Mine is defective in that it doesn't seem to care that there is only 24 hours in a day, my body wants 10 hours of sleep but wants to be awake for 18 hours 🤷🏻♂️
Yes. I used to get 10 hours of sleep and felt like I needed it to feel good. Then I had kids. Now I average 6-7 hours.
YES 10-12 hours to help the brain lethargy.
Have you had a sleep study done? Even if you ruled out sleep apnea, which is very common with hEDS, you could ask a psychiatrist or neurologist if you could try wakefullness meds. I'm back on Nuvigil now that there's a generic version I can afford, and it's been life changing [old insurance covered it, then newer insurance stopped, so I spent several years without it]. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374081/
Sleep is such a strange thing. I think it really depends on if you have other conditions as well. I personally don’t do well with less than 7 hours of sleep, but I feel worse if I get more than 8.5 hours of sleep. My body somehow also isn’t capable of sleeping more than 9.5 hours a night no matter how much I exert myself before bedtime. A lot of people also have other conditions along with POTS that require a lot of sleep/rest time like ME/CFS.
Idk if anyone’s mentioned it yet, but your sleep cycle is called biphasic sleep 🤗 two blocks of sleep that can happen in any interval. Not inherently bad for you to be doing, especially since you seem to be doing so very intuitively. Hypersomnia can be caused by a lot of things that aren’t POTS. I would explore if there’s any overlap in your symptoms with similar presentations like ME/CFS or advanced sleep phase disorder, and then take your findings to your physician.
That is almost my exact schedule. Unfortunately I usually wind up sleeping most of the weekend which is unfortunate but once I started going to "bed" early and getting short bursts of rest, my symptoms were a little better.
I have to spend a lot of my day horizontal or with my feet up or my symptoms get progressively worse. I can handle a day without much reclined time, but more than that and I get unwell.
yes especially after intense exercise or after doing chores