Worse In The Morning; Better In The Evening

[lgtaylor100]

Hi Everyone-

I'm a newbie and am trying to understand why symptoms are worse in the morning and sometimes better late in the evening. Does anyone have an understanding of this. I go to bed each night thinking I'm getting better only to wake up in the morning feeling awful.

Also, my symptoms are generally becoming worse over time. Symptoms started last June and it seems like they are progressively becoming worse. What does that mean ?

Lynne

[MomtoGiuliana]

This daily cycle is typical of POTS. It may have something to do with your hydration status. My specialist always tells me I need to fluid load in the AM, and should not go longer than 2 hrs w/o taking in fluids.

POTS can definitely wax and wane. If your symptoms are worsening you may need a different treatment regimen.

Hope you feel better soon!

[DIXZELAND]

You are not alone. Every morning it takes me about two hours to adjust to getting out of bed. My bed frame is even elevated on blocks to help with the upright position. I take my medication and wait for it to work so that I can just drink my decaf coffee. If the symptoms don't respond, I have a back up pill I have to take. If I'm not careful, my anxiety gets the best of me.

There are times that I went completely down hill. Changing medications is what helped me. The doctor trying to find the right one, the right dose. I still struggle though. This illness is not pleasant. POTSY's are unique as a snowflake, everyone is so different but so much the same.

Glad you joined our post here. Lots of support because we all care about each other:)

Dixie

[HopeSprings]

Oh how I dread getting out of bed in the morning! I lay there -as I am just waking up- knowing that as soon as I stand things are going to go all haywire. I think it has to do with the blood dropping down and pooling. I am not sure, but I just picture while laying down the blood is all evenly distributed and then once we stand -because we don't properly constrict - it drops and causes this overreaction with the heart trying to pump to get it upwards. Also for me, my blood pressure drops really low at night and while I'm sleeping, so I think the body knows it's got to get BP higher to function properly-- so it does whatever it does to get it to rise rapidly. This also might be related to the whole norepinephrine/epinephrine over response... which is true for some of us. These are probably oversimplified explantions, but it's how I understand things in layman terms.

[firewatcher]

There is a circadian (daily body clock) rhythm to heart function and BP. That is why most heart attacks happen in the morning and why our stuff is usually worse in the morning. The usual HR and BP spike of getting out of bed is magnified into total wonkiness with POTS. There isn't much that will make it better, other than taking your meds an hour or so before you have to get up and morning fluid loading. It is "normal" physiology unfortunately.

[stacdliw]

I'm like a baby "who has their days and nights mixed up." I feel so bad in the morning and afternoon, with no energy and tachcardyia if I try to walk. By nightfall, I feel much better! There are nights that I do laundry at midnight! Rarely do I try to do anything physical before 6pm.

[lieze]

I feel the same way.

I almost dread going to bed at night because I feel so good usually compared to morning....

And then as you say it's like our carriage turns into a pumpkin and we have to start all over again.

[comfortzone]

Wow this is amazing to me....

I have exactly the same thing...the worst part of my day is when I first open each eye in the morning.... I find my position in the bed and uncurl and unfold each limb - and very very slowly and carefully sit up at the edge of the bed. Next is standing & finally carefully attempting to walk - little tiny steps - my hands are stiff and painful - cannot make a fist - nor open them fully. This part then moves to finding the pain pills and other a.m. meds and toddling <-- slow careful gait - to the kitchen to make coffee - next a chair and computer time and coffee till able to move from pain relief. Then it's just puttering around, resting, puttering around -- after six hours of this I'm trashed and have to lie flat - sometimes even at four hours....dunno why the fatigue - but soon after lying down - things equilibrate and I'm up again....... Now begins the best part of the day for me - generally from about 6 or 7pm till midnite - I cook, or clean, or do bills, any little project - night time is my good time....

Then as you say - I look at the clock and think, 'crud - well here we go again' - enter the tossing and turning - the eventual sleep and that horrid minute you wake up - wow it feels like someone ran a steam roller over me! Blood pressure is super high in the morning too - dysautonomia/chronic tiredness issues/ --- all likely related somehow....

My doctor now wants me to take my blood pressure while I am standing the times in the day when I feel that 'hit the wall' must lay down sensation... so we'll see what comes of that...

[sisblostg]

I am a night owl as well. I feel best between 9pm-2am. I just feel bad because my husband tries to stay up with me and he gets up at 6:30am with the kids. I found if I try any of my cardaic rehab routine I do it late at night and I can get more done. I also take my big evening walk, which is walking to the end of my driveway and back and up and down the stairs after midnight. I have always wondered if the neighbors see me out there in my pjs?

I have always been more functioning at night. Before my h-pots dx I always thought I functioned better because I really do not like sunlight, and I like the cooler tempatures.

My morning are especially bad if I am jilted out of sleep. My family is great to get ready for the day in the basement. The mornings when I a phone call or doorbell wake me up , for some reason the "shock" of being jolted out of sleep makes me feel horrible for hours and my resting pulse is even high. My normal morning rountine is about 2 hours to get ready, drink water, slowly get out of bed, go to the bathroom, rest, shower, rest and drink fluids, get dressed, rest, put on makeup,and rest. By that time it is noon!

[sue1234]

I am exactly the same way. I never had morning issues before POTS--I used to "bound" out of bed to begin my day. Now, I slowly wake up for about 20 minutes, then I can get up and walk to my rocking chair, where I spend the morning coming out of my "stupor". My husband knows that I don't "think" until afternoon, so don't ask anything that requires brain processing. Then, by about midafternoon I am mentally functioning and by bedtime, my brain is HYPERfunctioning.

Sistosbg--regarding the startle problem, that is me exactly. I have learned to turn off the ringer to our bedroom phone when I get up to pee in the middle of the night. I am shaky and dizzy, and immediately angry(not usual for me) if anything startles me awake in the early morning(5-7am). I remember a couple of years ago, a mother called me at 5:50 AM(!) to wake her daughter that had spent the night with mine, because she had to pick her up to go to a wedding that day. I stumbled to wake her, then literally had to go fall back in bed I was so lightheaded. I think that was when my POTS was just beginning.

This makes me think of cortisol. Cortisol starts to rise around 4 in the morning to prepare our body to wake up and function, and it is then at the highest it will be for the next 24 hours. It sounds like we just DON'T! I know we don't all have Addison's, because we wouldn't be surviving for years without cortisol replacement. What if our adrenals aren't working up to par? What if they aren't making that diurnal rise in the morning to get us up and going, then kick in later in the day, which makes some of us have late-day energy? This seems like Cushing's in a way, because their diurnal rythm is reversed like this, with cortisol highest at night. But, people with Cushing's can function better in daily life--they are not recliner ridden. So, what if we have a unique cortisol "something" going on?

I am putting a link to Wikipedia's cortisol description. It is pretty thorough in describing its actions. Especially read in the middle area ALL of its effects, and you'll see alot of all of our issues on this board mentioned!:

http://en.wikipedia.org/wiki/Cortisol

It mentions it is linked to: sodium, ADH, blood sugar control, collagen, and on and on. All things we have issues with. But, like I said, I don't know how it could be working enough to keep us going, yet not enough to get us functioning.

I had a "natural" doctor prescribe low-dose cortisol 10 years ago. I felt AMAZING, and it woke me up in the morning. I weaned off of it a couple of months later, because I was afraid of it. I talked to that same doctor again after POTS hit me, and he wanted me to start cortisol again, but I decided I would let the "conventional" doctors figure out what was wrong. You can see how well that's going for me. So, anyone else have any experience with cortisol?

[lieze]

Just that I am suspicious of this too but have worried the opposite that I make too much in the morning and that I don't level out till the day goes on.

My anxiety is usually highest in the morning is why I am suspicious....

I had my levels tested though at Cleveland clinic in the midst of spiky high heart rates and low blood pressures and they drew early and it was normal so?

Like everything else maybe some of us are just sensitive of this.

This description also fits me before POTS.

If I didn't get good sleep or even if I did get 8 hrs. sleep but had to be up anywhere from 4-9 my day was just basically shot.

Now I was able to function but would have a dull headache, felt irritable and sluggish and often by evening just couldn't function to do anything.

[lgtaylor100]

I had my cortisol tested and it was high. Not really making sense for my very low energy level. My PCP is going to have it retested. Any thoughts on this?

[sue1234]

I went to the ER almost 5 years ago one morning, as I woke up with my heart racing and a b/p of 180/110. I had never had anything like that before. They actually ran my cortisol in the labwork they did, and it came back high. Now my doctors are thinking it was high because of whatever was going on, not that it was randomly high. I now look back and think my blood sugar was low, but didn't have a meter to check it. I had instinctively eaten something as I walked out the door to the ER, so it would not have shown up in the labwork.

Maybe it is something where our cortisol dips low, like blood sugar does, and then overcompensates. Maybe it yo-yos back and forth.

[firewatcher]

There are several things that may be at work with us. I have a genetic circadian rhythm disorder: Delayed Sleep Phase Disorder-basically, my body clock is eternally set about 3-4 hours behind everyone else. Move me to the West coast and the same thing will happen. When my sleep doc and I tried to shift it, BAD things happened. The only good thing that came of it was a correct diagnosis of POTS. He is absolutely convinced that there is a hypothalamic dysfunction at work in all of this, from the sleep disorder to the whole POTS thing. Unfortunately, very few endocrinologists even go far enough to have more than a basic understanding of any hypothalamic issues since there is almost no treatment other than to replace the missing hormones.

An Overview of the Hypothalamus from EndocrineWeb.com

The Endocrine System’s Link to the Nervous System

Written by Kelly M. Rehan

The Hypothalamus Essentials

* The portion of the brain that maintains the body’s internal balance (homeostasis).

* The hypothalamus is the link between the endocrine and nervous systems.

* The hypothalamus produces releasing and inhibiting hormones, which stop and start the production of other hormones throughout the body.

The hypothalamus plays a significant role in the endocrine system. It is responsible for maintaining your body’s internal balance, which is known as homeostasis. To do this, the hypothalamus helps stimulate or inhibit many of your body’s key processes, including:

* Heart rate and blood pressure

* Body temperature

* Fluid and electrolyte balance, including thirst

* Appetite and body weight

* Glandular secretions of the stomach and intestines

* Production of substances that influence the pituitary gland to release hormones

* Sleep cycles

The hypothalamus is involved in many functions of the autonomic nervous system, as it receives information from nearly all parts of the nervous system. As such, it is considered the link between the nervous system and the endocrine system.

Anatomy of the Hypothalamus

The hypothalamus is located below the thalamus (a part of the brain that relays sensory information) and above the pituitary gland and brain stem. It is about the size of an almond.

Hormones of the Hypothalamus

The hypothalamus is highly involved in pituitary gland function. When it receives a signal from the nervous system, the hypothalamus secretes substances known as neurohormones that start and stop the secretion of pituitary hormones.

Primary hormones secreted by the hypothalamus include:

* Anti-diuretic hormone (ADH): This hormone increases water absorption into the blood by the kidneys.

* Corticotropin-releasing hormone (CRH): CRH sends a message to the anterior pituitary gland to stimulate the adrenal glands to release corticosteroids, which help regulate metabolism and immune response.

* Gonadotropin-releasing hormone (GnRH): GnRH stimulates the anterior pituitary to release follicle stimulating hormone (FSH) and luteinizing hormone (LH), which work together to ensure normal functioning of the ovaries and testes.

* Growth hormone-releasing hormone (GHRH) or growth hormone-inhibiting hormone (GHIH) (also known as somatostain): GHRH prompts the anterior pituitary to release growth hormone (GH); GHIH has the opposite effect. In children, GH is essential to maintaining a healthy body composition. In adults, it aids healthy bone and muscle mass and affects fat distribution.

* Oxytocin: Oxytocin is involved in a variety of processes, such as orgasm, the ability to trust, body temperature, sleep cycles, and the release of breast milk.

* Prolactin-releasing hormone (PRH) or prolactin-inhibiting hormone (PIH) (also known as dopamine): PRH prompts the anterior pituitary to stimulate breast milk production through the production of prolactin. Conversely, PIH inhibits prolactin, and thereby, milk production. Thyrotropin releasing hormone (TRH): TRH triggers the release of thyroid stimulating hormone (TSH), which stimulates release of thyroid hormones, which regulate metabolism, energy, and growth and development.

Hypothalamic Disease

A disease or disorder of the hypothalamus is known as a hypothalamic disease. A physical injury to the head that impacts the hypothalamus is one of the most common causes of hypothalamic disease.

Hypothalamic diseases can include appetite and sleep disorders, but because the hypothalamus affects so many different parts of the endocrine system, it can be hard to pinpoint whether the root cause of the disorder is actually related to another gland.

In particular, the hypothalamus and pituitary gland are so tightly connected that it’s often difficult for doctors to determine whether the condition is associated with the hypothalamus or pituitary gland. These are known as hypothalamic-pituitary disorders. However, there are hormone tests that help shed light on which part of the body is the root cause.

The hypothalamus is arguably the most essential of the endocrine system. By alerting the pituitary gland to release certain hormones to the rest of the endocrine system, the hypothalamus ensures that the internal processes of your body are balanced and working as they should.

Reviewed by Robert M. Sargis MD, PhD

Last updated on 01/11/2011

First published on 06/05/2009

[Noreen]

He is absolutely convinced that there is a hypothalamic dysfunction at work in all of this, from the sleep disorder to the whole POTS thing. Unfortunately, very few endocrinologists even go far enough to have more than a basic understanding of any hypothalamic issues since there is almost no treatment other than to replace the missing hormones.

An enterovirus attacking the hypothalamus and disrupting the HPA function certainly seems the most logical. But since the sequelae are not visible like polio or hand, foot and mouth disease, it is unlikely to be researched.

[firewatcher]

For post-viral onset, certainly this makes sense, but for us genetic types there is some mutation at work. The entire female line of my family has DSPD and my son has it as well. My mother and grandmother showed minor signs of autonomic dysfunction from fainting to migraines, but nothing like what I exhibit.

[sue1234]

Oh yea, I can totally understand how the hypothalamus can be involved. With my new flushing and vasodilation symptom, I had been researching the not-so-obvious causes last month and bookmarked this article:

http://jcem.endojournals.org/cgi/content/full/88/11/5427

It's got the full article, which JCEM always offers compared to the other journals. Before I got this article, I was wondering why I began vasodilating, and mostly from early afternoon through til morning. I ran into this article that shows how CRH, which is the hypothalamic hormone, secretes to stimulate the ACTH(pit. hormone) to tell the adrenals to make more cortisol.

I was personally thinking that is a possibility with me, who knows. But, I definitely saved it to post at some point(today) here on this forum because of the connection to MAST CELLS. I know people here are feeling better by dosing up against MCAD, and I thought maybe this could explain possible causes of MCAD, as I know the couple of doctors that treat it don't know anything about causes. It could be a piece of the puzzle.

I know I have a lot of endocrine issues mixed into my POTS, so am always looking at my POTS from an endocrine point of view. And, it always boils down to the pancreas and adrenals for me. Well, and if the pituitary is working well, also.

[Noreen]

For post-viral onset, certainly this makes sense, but for us genetic types there is some mutation at work. The entire female line of my family has DSPD and my son has it as well. My mother and grandmother showed minor signs of autonomic dysfunction from fainting to migraines, but nothing like what I exhibit.

A genetic predisposition along with an exposure is what would make it worse for some than others. So a seemingly minor virus contracted at a susceptible time would flourish in some. If all of this happens during stressful time (or causes sufficient stress) the adrenal portion of the HPA access also gets stung.

So I am thinking along the lines of a virus without overwhelming symptoms settling in and causing mayhem in those of us with genetic susceptibility.

[sue1234]

Thinking about the above article I posted, with CRH being released in times of stress, and it causing mast-cell degranulation and the consequential release of histamine, AND thus vasodilation,(phew!) maybe that could explain why I feel like fainting if I get stressed! I have also noticed that if I get stressed, I get hot, which could also be the vasodilation issue.

[POTLUCK]

I have noted this in other posts but, in my case with an abnormal EEG for Temporal Lobe Epilepsy I suspect this relates to the problems. The hypothalmus is in the Temporal Lobe.

The Superchiasmatic nucleus of the brain is in the Hypothalmus.

The Superchiasmatic nucleus of the brain is the master clock which regulates the internal clock of every cell of the body. It is set each day by the sunlight which hits the ipRGC cell of the eye.

In my case I believe something is not working right with this.

[POTLUCK]

http://submit.clinsci.org/cs/122/0025/cs1220025.htm

[POTLUCK]

http://submit.clinsci.org/cs/122/0025/cs1220025.htm

that did not work, sorry I'll try again. Article this year on diurnal variation in POTS

[POTLUCK]

Diurnal variability in orthostatic tachycardia: implications for the postural tachycardia syndrome

No it does not seem to cut and paste. If you want to look it up I guess you could google the above title. It is in Clinical Science (2012) 122, (25–31) (Printed in Great Britain) and looks like th Vanderbilt people.

[lgtaylor100]

I started this post over a year ago and am still suffering from the same symptom despite meds. I really can't do anything until late afternoon. If I do something earlier in the day I am extremely dizzy and then crash and can't do anything the rest of the day. My doctor wants to give me prednisone and I am very hesitant because I think this will make me worse. I am suffering with hyper pots. Any thoughts about the prednisone?

I get nerve block shots every two months for lumbar stenosis and feel somewhat better generally for 3-5 weeks after the injection. I don't know if it is the cortisone in the injection or something else that is making me feel a little better for that period of time. Any thoughts on this? I am really confused.

[Mytwogirlsrox]

I read somewhere that People have increased sympathetic tone in the am. It's part of our circadian rythmn, let me see if I can find the article