Do You Feel Better When You're Sleepy?

[thericky]

My wife has POTS and has said on many occasions that as the day moves on and she grows sleepy, she starts to feel a bit better. She feels more relaxed and her symptoms seem to calm down. But when she gets up in the morning after a good night's sleep, the cycle starts all over again and she has a racing heart rate and needs her medications to make it through the day.

What does the body do when it gets tired? Is there a way to replicate this end of the day relaxed (and somewhat symptom-free) feeling for the rest of the day?

[Broken_Shell]

Hi Ricky,

Many of us have a circadian pattern to our symptoms. Every morning is a nightmare for my body, and I feel the most normal between 9 to 11 pm. However, I don't feel sleepy, just more normal and like my body is in better control of itself. I don't know if anyone knows exactly why this happens, but here are a few quick thoughts (sorry, I'm having a really bad day, so I hope this makes sense...)

- while we sleep our autonomic system is in control, so we wake up in the morning having our bodies been strictly run by a broken autonomic system for 8 hours

- getting our bodies up in the morning requires a big autonomic orchestration from sleep to wakefulness and our bodies aren't able to properly manage this transition; we let out bursts of hormones and neurotransmitters like everyone else who wakes up, but ours aren't appropriately balanced and they set off a domino effect that takes hours to get under control

- levels of cortisol and epinephrine/norepinephrine are naturally highest in the morning and decrease throughout the day

- all night we are not taking in any fluids or salt

- human bodies are made to function during the daytime hours, so everything is more reved up from metabolism to urine production; those of us with dysautonomia have an imbalance between what's reved up and what's calmed down and this inbalance is more exreme at the time of day when the body is usually reved up

Hope that all makes sense. Thank you for reading my thoughts. I hope Michelle is feeling better soon. Just hang in there and keep fighting... we all are and we understand how hard it is!

~ Broken_Shell

[futurehope]

My wife has POTS and has said on many occasions that as the day moves on and she grows sleepy, she starts to feel a bit better. She feels more relaxed and her symptoms seem to calm down. But when she gets up in the morning after a good night's sleep, the cycle starts all over again and she has a racing heart rate and needs her medications to make it through the day.

What does the body do when it gets tired? Is there a way to replicate this end of the day relaxed (and somewhat symptom-free) feeling for the rest of the day?

My uneducated guess is that your adrenal hormone (cortisol) is the highest in the morning and the lowest at night. Your wife is probably sensitive to the effects of this hormone.

[EarthMother]

Whoo hoo Shell! Deep bow of thanks for the best answer I've read on why this might be the case for so many of us. I for one find it very validating.

I'm having the saliva test done next week that will test my cortasol levels at roughly 8am, Noon, 4pm and 10pm. Not sure it will matter much by way of what I can do ... but I did the same test 2-3 years ago and I'll be interested in comparing the two.

Like your wife, my body often feels peaceful at night/evenings. Good thing too, because I can eat better at that time and make up for the calorie loss during the mornings.

Please give a hug to the misses and let her know we are here for her too.

~EM

[potsgirl]

EM & Ricky~

I must echo the sentiment of 'way to go brokenshell'! That was a great answer. I, too, am horrible in the morning, but at night, if I get real sleepy, I feel really poorly, too. It's like I just can't stay awake and BED becomes my one and only goal. I'm usually start downhill around 6 or 7, so I'm in bed by 8 and asleep by 9. Woohoo! Bring on the night life! My prime time is between 2 and 6.

Cheers,

Jana

[futurehope]

Broken Shell,

Your answer was so accurate and descriptive that it is worth printing and showing to a few people, including some doctors.

[summer]

My wife has POTS and has said on many occasions that as the day moves on and she grows sleepy, she starts to feel a bit better. She feels more relaxed and her symptoms seem to calm down. But when she gets up in the morning after a good night's sleep, the cycle starts all over again and she has a racing heart rate and needs her medications to make it through the day.

What does the body do when it gets tired? Is there a way to replicate this end of the day relaxed (and somewhat symptom-free) feeling for the rest of the day?

Yes. Broken Shell's answer is very good!

I also have a pattern and have wondered... When I get over my early morning "feeling really bad" period, I have the best part of my day (energy-wise) from about 9-12. I do what I can during this part of the day (with breaks) until I feel really fatigued again any where from 1-3, depending on the day.

At that point, I end up spending most of the rest of my day doing nothing... lying down. By about 7 or 8 pm, I actually feel a lot better because I have rested or been off my feet for 5 or 6 hours. I tend not to do much in the evening, just try to enjoy some quiet hours with my family. I always figure this long, neccessary break in the afternoon improves the way I feel in the evening. Does this make sense?

[thericky]

Broken Shell: Thanks for the great response and I'm sorry to hear you're having a bad day.

Both Michelle and I are night owls, so our schedules are different than most. We generally rise anywhere between 11am and 1pm and go to bed at around 2 or 3am each night. But going by that natural schedule, Michelle goes through the same ups and downs described by a few people above.

It's very interesting to learn that cortisol levels are higher in the morning than at night. While Michelle was in the hospital a few weeks ago, they found that her cortisol level was low and gave her injections to raise it. The injection resulted in her feeling terrible and ultimately the cortisol level returned to "normal." But now that I know that the level changes throughout the day, I wonder what time they determined that her level was low versus when it was normal. Perhaps a low cortisol level is a good thing for POTS?

I'm having the saliva test done next week that will test my cortasol levels at roughly 8am, Noon, 4pm and 10pm. Not sure it will matter much by way of what I can do ... but I did the same test 2-3 years ago and I'll be interested in comparing the two.

How do you get this test done? Did you get it from a lab or your doctor? I'd definitely like to have Michelle try it just to see what the results are.

[EarthMother]

One of my Doctors recommended the Adrenocortex Stress Profile at Genova Diagnostics.

They can ship you the vials to collect at home and FedEx back to Genova. The results are mailed to your physician.

[ramakentesh]

Im usually the same, although the period between an hour after ive risen til about three hours is the worst for me normally.

As well as the hormone cycle, blood pressure also follows a rhythm where it is lowest in the early hours of the morning and slowly increases throughout the day,

Also some forms of POTS are specifically exacerbated by lying in bed - pooling is at its worst and restricted blood flow in this form is worsened by absense of movement.

[cordila]

I'm a little confused about my body after reading these posts. My best time is usually in the mornings. I generally awaken feeling refreshed and energetic (although not at the moment - HUGE allergy season in Seattle...). I tend to tire during the course of the day. Additionally, I can only recover by lying down. In fact, (unfortunately) I have spent days upon days in bed and generally that's the only thing to get me able to get back on my feet again. It appears I am 100% opposite from the posts here. Does anyone have any idea why?...

[erikainorlando]

Waterbaby -

I believe there was a post within this topic where someone posted that she also feels best in the am...then as the day wears on she does less well and needs to lay down to get better...but I am paraphrasing. I also feel my best about 30 min after I get up and do well for a few hours. Then without warning about 3 hours into my day I begin to fade. The only way to get better again is to lay down...but yes...the mornings are my best.

So you are not alone!!

Erika

[bjt22]

I feel better at nights, but not when I'm sleepy, necessarily...in fact, being overly tired or just sleepy makes me feel worse. I'm less likely to be tired at night than I am during the day. Mornings are my worst time...if I have to get up and get myself somewhere, it can literally take me until noon. I generally feel a little better in the afternoon, then hit a rough patch in the evenings. By about 9:00 or a little after, I'm heading into my best times.

[ramakentesh]

This is how weird my body is - If i stay up late and get very little sleep i feel physically tired, but I also feel BETTER Potswise. For me a sleep in makes my POTS symptoms far worse.

[bjt22]

This is how weird my body is - If i stay up late and get very little sleep i feel physically tired, but I also feel BETTER Potswise. For me a sleep in makes my POTS symptoms far worse.

Yes! That is, for me, too much sleep at one stretch. I'm rather cat-like....I do better with shorter sleeps over a 24 hour period. So, ideally, I would sleep about 5 hours at night, maybe another two or so by late morning, and hour in the afternoon, and an hour in the evening. I even can feel less tired this way.

[ramakentesh]

Here is another possibility. While some patients say that melatonin worsens their POTS symptoms, for the more hyper patients it may be helpful:

http://www.pubmedcentral.nih.gov/articlere...i?artid=2343280

and the talk at 15:15:

http://www.efasweb.com/2007/program-12fri.html

Melatonin attenuates tachycardia in postural tachycardia syndrome (POTS)

SR Raj, I Biaggioni, BK Black, PA Harris, D Robertson

Nashville, TN, USA

[erik]

Coincidentally, sleep deprivation is also a poor-man's anti-depressant, for whatever reason, although one tends to get a bit loopy Could be considered a "reset button" in some vague ways (seems that way to me)... perhaps akin to the low-dose SSRI technique that is used and helps some. (NMDA-antagonists might gave some profound effect too, but it is an esoteric angle of things due to prohibitive side-effects).

[Janey]

Broken Shell's description was also amazing!!

If I am feeling awful with POTS, gastroparesis etc, sleep at any time of the day makes me feel better and takes the feelings away. However, when I get up in the morning after 8 hours of sleep, I feel awful. As well as what broken shell said, I feel it's the parasympathetic nervous system catching up with the sympathetic when we sleep, and I feel like the rest of the time my sympathetic nervous system is pounding away uncontrollably.

One other thing is just that lying down takes away half the symptoms for me. Really resting my head and body changes everything, so surely that's got something to do with really counteracting the fight or flight response?

Janey

[potsgirl]

I feel really sick when I get sleepy. It comes over me all at once...I'm not sleepy, and then click! I'm sleepy and feel horrible and want to go to sleep immediately. I try not to get to that point.

[It'sMyLife]

This is how weird my body is - If i stay up late and get very little sleep i feel physically tired, but I also feel BETTER Potswise. For me a sleep in makes my POTS symptoms far worse.

I have the same thing happen to me. When I wake at 6 am for work, I'm beat by the end of the day--but, I don't have the mid-morning-through-afternoon POTS drama I have when I get to sleep in until 8 or 9 am. I am still confused by this.