Naps - what works for you? How many, how long and when?

[alex3619]

Laying down for a bit helps me if I'm a bit wiped out due to orthostatic intolerance.

When this is the issue then sleeping is not needed, its being horizontal that does the trick. Even twenty minutes is good in that case.

I sleep whenever I need to. Usually that involves several short sleeps a day. I rarely have long sleep times any more. Late last year the only sleep I was getting was two twenty something minute naps a day, for weeks. It was not a good time.

 

[halcyon]

From what I've read, the best time to nap is 6-7 hours after you wake up.

 

[Diwi9]

I'm reading all these posts about other PWME choosing to take naps. Are there not others on here who do not have a choice? I do not have a choice when I nap, it has to happen...and it is a horrible feeling. It doesn't happen everyday, but a few times per week. Very disruptive.

 

[halcyon]

I'm reading all these posts about other PWME choosing to take naps. Are there not others on here who do not have a choice? I do not have a choice when I nap, it has to happen...and it is a horrible feeling. It doesn't happen everyday, but a few times per week. Very disruptive.

Yeah, on the worst days there is no choice. I'll often take 2 or 3 naps and they just hit whenever and I have no choice. On normal days I usually choose to take 1. On the better days I can get by without one, but that is rare.

 

[Jennifer J]

Late last year the only sleep I was getting was two twenty something minute naps a day, for weeks. It was not a good time.

. Glad that time's over for you Alex. Sounds awful.

I'm reading all these posts about other PWME choosing to take naps. Are there not others on here who do not have a choice? I do not have a choice when I nap, it has to happen...and it is a horrible feeling. It doesn't happen everyday, but a few times per week. Very disruptive.

Yes, that too. Just couldn't put the words together to include that in one of my posts, was on my mind though as I wrote it.

 

[alex3619]

I do not have a choice when I nap, it has to happen...and it is a horrible feeling. It doesn't happen everyday, but a few times per week. Very disruptive.

I get that most days, once or twice now.

 

[Diwi9]

There are so many symptoms to this disease. A proper study...a true proper inventory that actually reflected patient experiences, could probably have divided us into subsets decades ago. Just sayin'

 

[ryan31337]

I'm nap-free and can function all day now. This is compared to 9x months ago when I needed to sleep 3-4x per day for 30mins in order to function at all for limited periods inbetween.

I had two identifiable causes:

1 - POTS/OI. I can still get an immediate exhaustion (not PEM) from being upright too long. I will generally crash & desire sleep for 30mins after going for a prolonged gentle walk - this does not happen when compared to a gentle swim for example.

2 - Reactive Hypoglycemia. Majority of the sleepiness crashes would come after eating. These crashes disappeared within days of heavily restricting carbs and starting a ketogenic diet.

Napping is not a choice for me, it feels like I boarder on a form of narcolepsy. These naps are always prefaced with my body getting very cold (doesn't matter what the temperature is or how many layers I have on).

Based on my limited experience, I would consider reactive hypoglycemia as a cause for your symptoms @Diwi9. I know exactly what you mean by 'not a choice', calling it sleepiness is not a good description. My brain would shut down, my eye sight would deteriorate, I'd sweat and/or shiver, my heart rate and blood pressure would change and I'd lose all ability to maintain orthostasis (even sitting). I'd fall asleep as soon as my head hit the pillow and then wake up quite refreshed after 20-30 minutes.

I had polysomnography + multiple sleep latency test during this period and was told that I didn't actually sleep in these short nap spells, at least not 'sleep' in the way they defined it. No one has offered an explanation but I wonder if these episodes are a combination of neuroglycopenia + cerebral hypoperfusion, which self correct after a period. By changing my diet I have seemingly resolved the blood glucose issue side of things.

 

[TiredSam]

I'm reading all these posts about other PWME choosing to take naps. Are there not others on here who do not have a choice? I do not have a choice when I nap, it has to happen...and it is a horrible feeling. It doesn't happen everyday, but a few times per week. Very disruptive.

I think that would describe me if I didn't pre-empt it by lying down before it hits anyway. I only choose when I lie down, whether I lie down isn't a choice, if I don't lie down before I turn into a zombie I'll have to lie down when it happens anyway, so maybe I'm just giving myself the illusion of choice and control. I don't think I've remained upright and active all day once in the last couple of years, I don't think I could, and I don't fancy the likely consequences of trying.

 

[Aurator]

I sleep whenever I need to.

This thread, if any thread does, underlines the truth of Iris Murdoch's aphorism: "The world is divided into two sorts of people: those who sleep and those who don't".

I've found a very poor correlation between needing sleep and getting it, both when I was well and now. If I ever have a nap it's not because I take one but because it takes me. I've found that lying down to have a nap is usually the best way of not getting one.

People may read this with some scepticism, but as someone who could stay awake (with no naps) for 72 hours when I was well, I think I know what I'm talking about.

 

[Lolo]

I nap every afternoon, if I don't I can't function and usually need to rest for some more hours afterwards. Sometimes I need to nap in the mornings as well. And it can be irrelevant to how well or how much I slept the night beforehand.

 

[ahimsa]

Napping really needs to be tailored to each patient. Make sure you do what works for you. When looking for ideas see whether the patient making the suggestion has similar symptoms to you.

First, ME patients are often different from each other. What works for some other ME patient might not work for me.

Second, even when looking at a single patient, the symptoms of ME often change after being sick for many years. Sleeping/napping ideas that helped me in the early 1990s do not work for me now.

When I first got sick back in 1990 I slept A LOT. At my worst in 1991 I was sleeping maybe 12-14(?) hours each night. And I was also dozing quite a bit during the day on most days. I had hypersomnia.

Now, I sleep much less during the night. I sleep between 6-8 hours (it varies) with lots of awakenings. (Too many details to list here but my sleep problems appear to be related to my autonomic dysfunction - orthostatic intolerance)

But I don't nap during the day. I actually never even feel sleepy during the day.

I do force myself to rest A LOT during the day. Without resting I'd spiral down and get worse and worse.

Pacing is crucial for me. It's NOT a treatment, it's just a way for me to keep my symptoms from getting even worse.

But I never nap.

(That almost sounds funny - "never nap." Anyone remember the "never nudes" from Arrested Development?)

This got a lot more long-winded than I meant.... but I hope it was helpful!

 

[Lolo]

@ahimsa Yep, everything keeps changing, really need to be flexible with this thing.