Can ME/CFS Cause Sundowning?

[duncan]

Outside of late-day patterns, would we be able to distinguish between the two conditions amongst those of us who are best in the mornings and deteriorate as the day progresses, as opposed to those of us who improve as the day unfolds?

Is there a tie between cognitive exertion and PEM, and - in some pwME - sundowning?

 

[MeSci]

I didn't know what sundowning was so looked it up:

"Sundowning, or sundown syndrome,[1] is a neurological phenomenon wherein people with delirium or some form of dementia experience increased confusion and restlessness beginning in the late afternoon and early evening. It is most commonly associated with Alzheimer's disease but is also found in those with other forms of dementia."

https://en.wikipedia.org/wiki/Sundowning

I usually start off OK, then deteriorate from about 11.00 am, then improve again from about 1500.

If I can't remember a name or something, I know that it will come to me later, and it does, which is very reassuring. It's brainfog and not dementia.

 

[Yann04]

I get more "agitated" (wired) and confused / mind racing in the evenings after I've overexerted. But i would say it's probably quite distinct from sundowning in practice, even though the descriptions sound somewhat similar.

According to a definition I read it includes yelling and pacing around the room. While for me Im thinking more tremors tatchardia and rolling around in bed never finding a suitable position.

 

[Kitty]

Is there a tie between cognitive exertion and PEM, and - in some pwME - sundowning?

Interesting question. I'm not sure of the answer, as my pattern doesn't seem to be at odds with when I was healthy.

My natural predisposition is to be an owl, so I'm at my best later in the day. In a cognitively impaired owl that's likely to show up even more strongly, which it does. Anything requiring learning is best done in the 10pm to 2am slot.

PEM reduces my (already poor) cognitive capacity, but it doesn't alter that underlying tendency.

 

[duncan]

According to a definition I read it includes yelling and pacing around the room.

The operative word here is "includes". Sundowning refers to a spectrum or collection of symptoms, none of which is definitive or universal - at least as far as I understand it. It doesn't necessarily include any. But the symptoms deal with the brain, and they become amplified as the day wears on. That is not all that dissimilar from cognitive PEM for pwME that typically worsen as the evening approaches. If the sundowning characteristics are worsening memory and word choice and reasoning and judgement and gait etc....Could not this be hard to distinguish between the two syndromes?

 

[Yann04]

That is not all that dissimilar from cognitive PEM for pwME that typically worsen as the evening approaches.

Ive found its quite variable. I've had periods wjere I was worst in the mornings and would gradually get bettter during the day, now I'm the opposite where I wake up at my best and gradually decline during the day (on an average day)

And I've also had periods where I've been fairly stable day on day. I think its really dependent on your activity patterns and the absence or existence of rolling PEM.

 

[duncan]

My uninformed guess is that any disease that causes enough of the symptoms that fall under the sundowner label can be said to cause sundowning, but I suspect that is just lazy semantics. I think there is simply symptom overlap between discrete diseases, and for brain symptoms that worsen as the day drags on, you can get symptom crosselasticities among those diseases.

But maybe not. Maybe sundowning is a thing unto itself.

As for me, I almost always worsen as the day progresses, and that decline manifests in my memory and logic and word choice and, accordingly, confidence. Not the most infamous or notorious of sundowning properties, but sundowning properties nevertheless.

I would not qualify myself as a sundowner, but someone I respect recently referred to me as one.

 

[Kiristar]

It may sound funny but I observed sundowning in my border collie, who had a diagnosis of dementia. He became very anxious, paced mid afternoon, would try to hide between the sofa and then would cry inconsolablly with fear all the way through the night. It was horrible and broke my heart to see. We treated it with gabapentin successfully for a while.

So it's a quite disease specific thing I had thought.

But now I do kind of relate though. It's nothing like as extreme but I do get unreasonably heightened anxiety and restlessness overnight. Often worse when in PEM. I am unsure if it's med side effects related or if its more a kind of basic very instinctive reaction to brain disease and being at my most vulnerable at night, or even both of those at once.

 

[NelliePledge]

I have delayed sleep pattern. On a quiet day not involving exertion over and above basic living activity I feel worst on waking and for a couple of hours until I get up. I often feel best, particularly cognitively, in the couple of hours before going to sleep. I think this is the opposite of sundowning.