Is POTS this strongly connected to sleep?

[KnickKnack]

Hi! New here to the forum.  I looked briefly and didn’t see this particular question posted on this message board.  If it is and I missed it, I apologize.  And sorry if this is kind of long, I jsut want to make sure I explain my situation. My question is: has anyone else with POTS found that sticking to a scheduled bedtime/wake up time can essentially eliminate all symptoms?

A bit of backstory: In May of 2017, after almost 2 years of debilitating symptoms that included extreme fatigue, dizziness, brain fog, and digestive issues, I was finally diagnosed with POTS.  This was a relief at the time, as I had spent a long while bouncing back and forth between doctors who didn’t know what to make of me (because I appeared healthy and all my bloodwork was fine) and suggested everything from chronic fatigue, to vertigo, to my symptoms being a result of anxiety.  

Leading up to my diagnoses and for some time after, I was feeling absolutely miserable.  Spent most of my time on the couch, as walking or doing anything at all was just too much effort. I can’t even describe the fatigue, and it was made worse by near-constant stomach upset and nausea, dizziness, brain fog, and migraines. My life felt like it was on hold, and I even considered the possibility that I may not be able to work.

However, at some point, I established a sleep schedule.  Typically, bed by 9:30 or 10pm, and up by 7 or 7:30am.  Shortly after falling into this routine, my symptoms basically vanished.  The fatigue went away and I ended the day with energy to spare! I had virtually no dizzy spells or stomach issues anymore and felt so great that I wondered if maybe I had been cured.  It was night and day to what I had been experiencing previously, and this lasted for about a year.

But recently, my part-time job has required me to work several evening shifts a week, and I usually don’t get home until past 11.  So, to compensate for the much later bedtime, I’ve been shifting my wake up time to reflect that.  And BAM, my symptoms returned full force within a few days of the new shifts. I was incredibly fatigued again, dizzy, and dealing with digestive upset from the moment I woke up.

So when I had a few days off, I went back to my normal bedtime. My symptoms cut in half with just one night of my regular sleeping habits.  I haven’t been able to get on the schedule for more than just a couple of days, but if the past is any indication, my symptoms would likely stop again.  I found that even during my year of being pretty much symptom-free, anytime I would slip up on my rigid sleep schedule, I would be thrown into POTS all over again until I got back on track.

I’m just confused. I’m sleeping the same amount of hours either way but this one particular bed/wake up time seems to be the key to basically being free from the effects of POTS. Obviously, sleep is important in any chronic condition, but is it common in some people for it to be all you need to manage POTS? Can all symptoms possibly be connected to and “fixed” by finding the correct hours to sleep? I don’t increase water or salt and haven’t found my symptoms to be cyclical. It is just getting to sleep at the right time that seems to impact me. 

I would gladly welcome any input of other people with POTS.  I’m still getting used to navigating this condition, but I know that many people can increase water, salt, and get plenty of rest but still suffer from intense symptoms. So I wonder if it is common for my symptoms, as severe as they can be, to be remedied by something so simple. There is always that inkling that maybe the doctor missed something and I was misdiagnosed. Or, it may turn out this is common, and I just don't know enough about the condition still.

Thank you for taking the time to read this! I welcome stories of other peoples’ experiences, as well as questions about my own.

[StayAtHomeMom]

I have noticed when I stay on a routine of 10PM to 9AM I feel better as well I can wiggle a little but if I mess it up too much I can feel it. My symptoms haven't been bad for over a year now so I don't know how much is the sleeping pattern or new meds. I have noticed I go to sleep late on Saturdays so I sleep later and I spend Sunday trying to recover. But during the week when I am working I feel better. 

I have been trying to convince my boss who has chronic health issues that if he just gets in a pattern he would feel better. My mom who has RA has said she feels better if she gets on a schedule and sticks to it. But she likes the two days off in a row. She says she can work 9 days straight as long as she has the 2 days. Her RA is pretty bad that she needs the IV infusion biologics to manage hers. 

I know my sleeping is for long hours. I have been like that since I was a teenager. 10 hours sleep minimum for me or I just don't function well. 

[StayAtHomeMom]

Oh I just wanted to add: my POTS seems to be on the mild side. It was rough 3 years ago but has since calmed down with my answers and meds (metoperlol and midodrine) no underlying cause yet. 

[blizzard2014]

I've noticed the same lately. If I sleep for my magic number which is between 19-12 hours a night at almost the same time, I do not have a need for naps unless my part time job really knocks me on my arse which happens from time to time, then I can fall asleep right when I get home from work. But last week I did have some severe fatigue. If I use my muscle relaxers at night to alleviate my chronic leg pain, that also aids in feeling more rested. I bring this up because when I was a long haul truck driver and my schedule was changing from day to day, I was always fatigued, yawning, tired, and falling asleep every chance I got. I have also read that there is a strong link between sleep disruption and fibromyalgia. I know lack of sleep can make chronic pain worse, and other diseases worse. Our bodies are spending so much time battling themselves instead of living that we need way more rest than normies do. The important thing here is that you figured out how to alleviate some of your symptoms, or at least take the edge off of them. That is always a good thing!

[KnickKnack]

@StayAtHomeMom Thanks for the input.  I was surprised when I first made the connection between my hours sleeping and my symptoms.  I've been thinking lately about how frustrating it is to not have an underlying cause.  But I've heard it's difficult to narrow it all down and have a solid answer.  My experience with POTS has been strange.  Symptoms seemed to first appear several years ago when I came down with a mysterious illness that left me in bed for a week, then I felt fine for a few years and one day it all hit me again.  

@blizzard2014 Thank you for your response too. I guess for some people, sleep just really is the key to managing symptoms. Glad you found your "number."  I'm going to have to just try really hard to stick to a schedule, which is difficult at the moment working evening shifts, but I'll manage. 

[Pistol]

@KnickKnack - is it possible to get a note from your doctor that you have to work only certain hours due to your condition?

[KnickKnack]

@PistolI probably could. Right now a lot of my co-workers are away on vacation, so I'm having to work extra shifts until they get back.  Things should settle after that and I'll speak to my boss about the situation.  Thanks for the suggestion! 

[Pistol]

@KnickKnack - when I first got sick my employer had to do all kind of tricks to keep me employed. They truly bent over backwards for me. I was able to keep working for a few years thanks to them working with my doc to come up with ( and even create ) jobs I could do within my abilities. It is against the law to fire you because of health concerns. If you need a rigid schedule to be able to continue working they have to provide that for you. 

[StayAtHomeMom]

2 hours ago, KnickKnack said:

I've been thinking lately about how frustrating it is to not have an underlying cause.  But I've heard it's difficult to narrow it all down and have a solid answer.  My experience with POTS has been strange.  Symptoms seemed to first appear several years ago when I came down with a mysterious illness that left me in bed for a week, then I felt fine for a few years and one day it all hit me again. 

I am in the process of finding my underlying. My specialist doesn't seem concerned but I am. It is like putting together a 1000 piece puzzle and missing the final 3 pieces. It drives me crazy not knowing. In theory if you can "fix" your underlying cause your POTS can go away. I know it doesn't always work that way but I hope mine does. I miss being able to do more and not have to worry so much about my health. 

[KnickKnack]

19 minutes ago, StayAtHomeMom said:

In theory if you can "fix" your underlying cause your POTS can go away. 

Yes! That's the part that frustrates me about the whole thing, wondering if there's something "off" in my body causing the condition that might have an easy fix. Except getting to that fix isn't easy because it could be something that flies under the radar of every doctor. And finding a doctor who knows anything about POTS is tough, at least in my experience. Ughh

[StayAtHomeMom]

38 minutes ago, KnickKnack said:

And finding a doctor who knows anything about POTS is tough, at least in my experience. Ughh

My experience has been "you are fine. It is your anxiety and smoking." Now it is better. I have a great PCP and a specialist. That helps tremendously. But it took me about a year and a half to find them. My cardiologist and PCP knew very little. But they were willing to learn and that makes a huge difference. I am due to see my PCP next week and I am hoping she can point me at a good specialist that can rule out autoimmune and hEDS for me. It seems like the most plausible underlying for me. 

Hope you can find that one doctor. The one that believes you and helps you. It is amazing when you find a doctor that validates you and makes you feel like you are not crazy.