Circadian Extremes...?

[Goschi]

I recently experience symptom patterns along the course of the day that I almost can't believe this is still reality sometimes.

I do sleep quite well (most nights) and also wake up feeling not bad at all. But about 30 minutes after I got up, symptoms of all kinds start with such a severity that I often literally believe I am going to die right now. Then I am always convinced that something much more serious than pots is going on in my body.

However, between 1 and 2pm most of my symptoms get better very fast. And by 3pm or 4pm on most days I literally forget that I am ill at all and I can do whatever I want, being practically free of any symptoms!

This wierd pattern has repeated itsself now for almost one week. The difference between the two halfs of the day is so extreme that I start to believe I might be dreaming either the am or the pm. Both conditions can't be present in one person during one day. It feels so unreal...

Anyone else ever experienced something crazy like this...??

[Always hoping]

Hello Goschi.

While I'm new to the POTS diagnosis, I have actually been sick for 4 years. One of the things that perplexed me the most was how at one point in the day I could be sitting holding the phone to possibly call an ambulance (feeling that bad and fearful for my toddlers safety) and then 3-4 hours later feeling well enough to be dragging in bags of groceries from the car! I am curious to see what other members of this forum have experienced and if this is a "normal" POTS problem.

Best of luck to you!

[sleepy_lady]

I experience similar things--it feels like gravity has been turned up intensely high and even laying doesn't bring relief, it only makes it more tolerable.

[Goschi]

Thanks for your replies, "glad" I am not alone with this almost schizophrenic pattern.

@Always hoping: (what a wonderful nick!! ;-) That sounds exactely what happens to me. But it goes beyond physical abilities, the fluctuation also effects my cognitive symptoms.

For example, last friday around 10am, I felt so bad physically as well as mentally that I would have failed to fill in a simple form with my personal data. (literally. I couldn't even talk a few words to my wife...)

On the same day, (!!) between 5 and 8pm I wrote a short scientific article for an online magazine, afterwards went for a 30minutes walk in my neighbourhood.

What crazy kind of illness is this???

At the moment I am mostly bedridden in the am and I feel like needing to go to the ER all the time till noon, whereas I could easily hold a part time job from 4 to 8pm.

[Always hoping]

The cognitive issues hit too!! "Funny" how you can't remember your name one minute and then can write a scientific paper later! I work full time (luckily from home) doing financials.... sometime I can't remember how to add correctly!! Then later in the day, I'm back! And I agree, sometimes you can't help to think that there is something more dire than POTS going on. After reading how badly this syndrome has effected so many others, I have become thankful for the moments of clarity and physical abilities I do have - even the small moments between the craziness! You should talk to you doctor about this though, especially since it's a new symptom for you.

[MomtoGiuliana]

I have also experienced this. In general I believe POTS patients tend to feel their worst in the AM and best in late afternoon thru evening. It may have to do with hydration status? I am sure other things too that are not understood.

[gjensen]

My worst symptom (at the moment, that changes a lot), coronary vasospasms follows a rhythm. Late at night, they can be problematic. I can have them as I drift off to sleep. Early in the morning, upon waking, I am guaranteed to have a flare. It is a great way to start the day.

Early in the day, I am still vulnerable, even after having them relieved. As the day goes by, they tend to give me a break. Except on the bad days where no break is coming. Late into the evening they come back.

There are a lot of physiological changes from wake to sleep, and sleep to wake.

One of my issues upon waking is getting out of sleep mode. This is on occasion. I can go an hour before I get my breathing normalized and my O2 up. I have problems with my transition to sleep where the automatic breathing fails to pick up. Over and again.

I suspect that the cortisol levels being their highest in the early am, is my issue with the morning spasms. That does not always make sense if I take a nap in the day, and experience the same. Maybe it is sympathetic over activity of sorts.

This may be too much information, but my urine is very dark in the mornings. It takes me some time to get hydrated, etc.

Concerning the cognitive difficulties, early is bad. I am ok late in the afternoons. then in the evenings after some activity, I can be worse than I was before. Sometimes others notice more than myself.

Mostly I follow a pattern similar to others. Mornings are the worst, followed by gradual improvement. Then a return to the bottom late into the evenings.

Ironically, my orthostatic tachycardia is at it's lowest in the morning, and at it's highest mid day. Lower again, late in the day and evening.

My neuropathic pain is always at it's worse retiring for the evening.

[Goschi]

Hi Gjensen,

I can relate to the neuropathic pain (in my legs and partly my chest) is the worst in the evening before I go to sleep.

Did any of your docs suggest anything about a particular type of underlying neuropathy?

[gjensen]

It has been called SFN, and autonomic neuropathy.

[Goschi]

It has been called SFN, and autonomic neuropathy.

Ok, that's exactely my diagnosis... But I am trying to find out the underlying causes, yet without success.

Good luck for you!!

[lewis]

After reading this I had a right that maybe the reason the dysautonomia symptoms are worse in the morning is because of lack of oxygen during sleep due to not breathing properly. Just a thought but I would like to try a cpap to see if it makes a difference in how I feel

[EGorman]

I also experience weird patterns. Sometimes (like today) I feel almost completely normal, with only random pains and small moments of dizziness. Yesterday I had to call off my part-time job because I could barely walk. It lasted until after lunch, and then came back right around dinner, and then went away again after nine pm. Weird! Glad I'm not alone. I was thinking that I'm just crazy or something.

[Jerry]

I am new to all this, don't have an official dys diagnosis yet, but I'm convinced that I've got some kind of ANS disorder, having to do with the vagus. My doctor thinks so too, but he's running lots of tests for other things too. But for me, I always have the problems in the morning. I might have them other times of day, but morning are pretty much reliable. About half an hour or so after I wake up, I suddenly feel terrible, weak, light-headed, I go into bradycardia on and off, my pulse goes as low as into low 40s and kind of bounces around in the 40s and 50s usually for a couple of hours. I also get tremors. Anybody else get the tremors? Like several of you, I tend to be a little better in afternoon and sometimes it comes back in the evening. This is all so new to me. It all started about four weeks ago after I tapered off a PPI. I got back on the PPI, but the symptoms have stayed. Any insights would be most welcome.

[Jerry]

So what's different in the morning? Cortisol, glucose, TSH? Something's making your and my symptoms different in the morning than in the afternoon.

[POTLUCK]

I just posted a " Circadian Rhythm Question" about this, but my question here is-when your symptoms are the worst, are your heart rates also the highest? Mine are, and follow a circadian rhythm (or did till recent RX)

Also high HR is not a cause in itself of symptoms because if running (which I am ok with) HR goes much higher but symptoms (light headed, pounding heart feel) do not increase.