ET-related sleep issues - waking up hot

[ET_Gooner]

Hi all,

I wanted to know if anyone has had any similar experiences with interrupted sleep? For the past month, I have been waking up in the middle of the night/early hours of the morning, feeling too warm. At first I thought it was a purely physical issue so increased ventilation in my bedroom, reduced the thickness of my nightwear and bought lighter bedding including a lower tog duvet but I still keep having interrupted sleep. It could perhaps be a completely separate health issue I'm experiencing, not related to ET, but I thought I would ask in case others have experienced the same issue and if so, what remedies were taken to prevent this happening.

Many thanks!

[Whitehair51]

I experience the same thing, it's a symptom of ET. I just take the covers off for 10-15 minutes and then go back to sleep.

[ET_Gooner in reply to Whitehair51]

Good to know, I used to be such a good sleeper so this has definitely caught me off guard

[YBSx]

hello

Yes I have ET Jak2 have interrupted sleep due to being too hot and restlessnesses. I sleep with a fan by the side of my bed which helps.

[ET_Gooner in reply to YBSx]

Thanks YBSx , I may look into using a fan as well

[Solyesh]

Also! - The heat is not constant but the interrupted sleep unfortunately more or less is. Before diagnosis I used to have night sweats as well and no idea what was gong on - my MPN specialist told me that sleep disturbance unfortunately can be fairly common for MPNs - I can say since going on Peg the night sweats have decreased significantly and the night heat as well...

[ET_Gooner in reply to Solyesh]

Solyesh I had an inkling it was a side effect, glad your sleep interruptions and night heat have decreased significantly though! Sleep is so important for our overall health so keen to try and improve it where I can

[Nickthedevil]

Its definitely a side effect of ET. I am exactly the same.

[ET_Gooner in reply to Nickthedevil]

Nickthedevil thanks, that's reassuring to know others are going through the same situation. Hope it subsides for you so you have less interrupted sleep. If I manage to obtain any solution, I will let you know

[Nickthedevil in reply to ET_Gooner]

Thank you. I am not holding my breath that it might subside though as I have been having these night sweats since before I was diagnosed 10 years ago 😫

[Delightedbyhares]

yes, I have the same problem with overheating.(I have triple negative ET)Even when it’s cold outside, I have little or no heating in my bedroom. My duvet is on and off all night and I wear a cotton nightdress with short sleeves(I’m not suggesting you wear a nightie, unless you want to of course) I have a flask of cold water by my bed and cotton bedding. I frequently overheat during the day too. I find removable layers is the way to cope. 🥵🥶🥵🥶. All the best!

[ET_Gooner in reply to Delightedbyhares]

Haha I may have to invest in a nightie if the sleep issues persevere! Thanks for sharing your experience and tips though, much appreciated and hope the overheating subsides for you

[Delightedbyhares in reply to ET_Gooner]

😂😂. I’ll be opening my bedroom window any day now too!!

I tried a weighted blanket as I have restless legs caused by my Fibromyalgia. I just couldn’t stand the heat though!!🥵🥵.

[ET_Gooner in reply to Delightedbyhares]

I know, I've been looking forward to Spring and Summer for ages but now I dread to think if it will make my sleep worse! Can't seem to win haha

[Delightedbyhares in reply to ET_Gooner]

I’ve never really enjoyed hot weather, I take after my Mum. But now I can’t stand being in the sun at all! It’s a quick(haha!) dash out to get a dose of vitamin D, then back in the shade!🥵. Fingers crossed for cool, restful nights to come 🤞🏻🤞🏻

[RazB]

Yes, definitely have this. I’m the same as above, thin duvet, cotton t-shirt and sheets. I sleep with my feet out of duvet, if I can keep them cool it really helps! But like whitehair51 I just take duvet off for several minutes to cool off. Acceptance helps too…it’s just one of the many things that MPNs bring! X

[ET_Gooner in reply to RazB]

Thanks RazB , I agree, it is quite hard to accept because I used to be a good sleeper and now I sometimes dread sleep knowing I will be awake in the early hours of the morning because of this issue. Hopefully, I will adjust to it as time goes on, thanks again for sharing

[RazB in reply to ET_Gooner]

It’s difficult when routines are messed up, I agree. I read for at least an hour and take some good herbal sleep remedies and that usually helps! X

[ET_Gooner in reply to RazB]

That's good advice! I have a sleepy herbal tea which does the trick for getting to sleep, it's just continuing to be asleep which is tricky! I've invested in some new bamboo bedding which is supposed to be temperature regulating and cooling, will see how that goes and let you know

[Daisy-May]

That's definitely me undisturbed sleep and feeling warm during the night covers on covers off even with a 4 tog Duvet I dread the summer months..

[ET_Gooner in reply to Daisy-May]

I know! Summer will be an interesting period to navigate with this symptom in mind, hoping it subsides for you before then

[RazB in reply to ET_Gooner]

I haven’t used a duvet in summer for years! Just a sheet and often not even that! 🥵

[ciye]

It is symptom, I find it almost impossible to cool down, I did think I was suffering the worst of menopause turns out not... I sleep under a sheet most nights...

[ET_Gooner in reply to ciye]

Thanks ciye , it is reassuring to know others have also had the same experience. I thought it was just me! I hope the overheating subsides for you in time, may also look to sleep under even lighter bedding to help with this. Thanks again

[lavender007 in reply to ciye]

Me too

[Janis12]

Hi, yes this happens to me too. I am quite a cold person and use an electric blanket which I switch off when I get into bed. I have had ET for three years now and it is only the last year that I have experienced disturbed sleep due to heat and night sweats. A few months ago I got the flu (I did have the flu jab) and I experienced drenching night sweats for seven nights. I have never experienced anything like it, my bedding was soaking and I could visibly see the sweat running down my body, I was so worried I rang 111, no help what so ever!! I am glad I looked at your post and all of the responses because even my blood Consultant did not confirm it was an issue with MPN disorders, judging by the responses here it most certainly does. I just throw the duvet off for a while until I start to freeze and then once I pull it back on, all nice and warm, I fall asleep. Good luck.

[ET_Gooner in reply to Janis12]

Hi Janis12 , it's somewhat comforting knowing the cause behind it and that others are in the same boat so thanks for sharing your experience. I'm glad that period of intense night sweats is over for you, shame 111 were so unhelpful too! Agreed, this is why this forum is so useful, it's good to get others opinions who are going through the same experience. I do the same, the duvet on-off method but the interrupted sleep is having a knock on effect on my energy levels throughout the day so am experimenting with ways to try and have an elusive uninterrupted night's sleep! Will keep you posted if I find a hack! All the best

[Uzza]

Yup, ditto to all the rest. I am suffering currently with waking hot flushes to the point of sweating.

Cheers,

Uz

[ET_Gooner in reply to Uzza]

Sorry to hear Uzza, at least you're not alone and hopefully it's temporary and either goes away or you're able to gradually adapt. It's a very new symptom to me so currently trying to get used to it