Temperature regulation/sleep

[Terrier]

Hi all, hope everyone is keeping safe and well in these scary times. I haven't posted in a while as I suppose I'd reached a point of things being 'settled' with my POTS, not that I was better (I was still a long way off being able to work etc.) but I just about knew where I stood with it and the midodrine helped somewhat.

However for the last few months I've been having an especially tough time with my sleep, which has been my most troublesome issue for many years, and I'm not sure I even know how to try approaching it anymore. I'm feeling a bit desperate, even moreso with current events since I'm already in a bit of a risk group (asthmatic) and being physically even more burned out than usual with this thing going around isn't a nice thought.

All my life I've needed cold air in the bedroom to be able to sleep (even as a child you'd sometimes be able to see your breath in my room!) but after struggling to sleep for a while I've ended up turning the radiators on through the winter, which I've never had to do. But I still felt mostly shivery with that, even under thick duvets. At odd other times (sometimes during the same night) I'll feel too hot. This morning I thought to take the temperature under my covers (starting to over-analyse here) and it was 27c/80f which seems crazy hot by my standards yet there I was shivering and not sleeping. So now I'm completely lost not knowing if I need to be warmer or colder and, as is no doubt common among those with our issues, I can't really trust what my body is telling me.

I'm feeling cold throughout the day as well even though the house is probably warmer than average, if anything. It's almost like having a fever - feeling warm internally but the skin is cold and you're sat trembling.

The flipside is when I feel well enough to do some decent exercise I'll feel like I'm overheating all day and it's basically a guarantee that I won't sleep but that's been the case for years now regardless of how early in the day I do it, having a cool shower afterwards etc. I still feel that 'cold skin' thing with it though, somehow both hot and cold at the same time.

Does anybody have any ideas for things I could try? Perhaps something in the diet or certain kinds of exercise? I go for a walk every day and do resistance stuff as mentioned when I can but perhaps more intense cardio might help? Obviously I'm wary of making things worse by overdoing it though.

Any thoughts or suggestions more than welcome 🙂

[Pistol]

18 minutes ago, Terrier said:

It's almost like having a fever - feeling warm internally but the skin is cold and you're sat trembling.

Dear @Terrier - I know this feeling very well, I go through it when in a flare ( I have hyperadrenergic POTS ). I also am familiar with the sensations of felling cold when it is actually really warm and hot at other times. I encounter this as the onset of a POTS flare. It often is accompanied by insomnia - as you mention.  In my case this is all said to be caused by increased norepinephrine ( adrenaline ) levels. So I usually increase rest, do supine exercises, turn down the heat in the house and wear clothing like cardigans that can easily be removed when too hot and on when too cold.  -- For insomnia I try to stay active with the supine exercises, avoid eating or use of electronics at least one hour before bed, I read or do a calming activity before bed. A weighted blanket may be of benefit for you. I also use a small amount of benzo when absolutely necessary ( but it only helps me fall asleep, not stay asleep ). 

 

25 minutes ago, Terrier said:

The flipside is when I feel well enough to do some decent exercise I'll feel like I'm overheating all day and it's basically a guarantee that I won't sleep

To me that happens when I am in a flare and need to cut down on exercise b/c being active causes an increase in adrenaline. It seems to me that you might benefit from doing less upright or strenuous activity and allow more rest in your every day life. The current crisis unavoidably causes added stress and fears that very well can set off our imbalances. The best thing for me has been creating a routine that creates a calmer and more balanced environment and daily life. ( I am homebound, so it is easy for me to say ). Even if difficult this may be what you need to do. 

Also - getting enough fresh air every day - and before bed time - is very helpful. Maybe a leisurely walk or sitting outside before bed can help you as well.  Often I follow up with a cup of herbal tea. I hope some of these things will help you - be well!!!!!! 

[Terrier]

Thanks pistol, you're probably right that I'm overdoing it in some ways, as much as I'm basically sat down physically doing very little 80% of the time! I have a lot of trouble balancing trying to stay relatively fit with everything else I have going on since I get very frustrated when I can't exercise (which causes its own problems) and if I only exercised when I felt 'OK'.. I'd never exercise at all! So I sort of suck up the fact that I'll have to write the rest of that day and the next day off completely as a price worth paying but maybe at times doing that a couple of times a week is too much. I still find it really hard to judge all this however much practice I get.. Especially since if I have excess adrenaline flying around exercise seems to be one of the few things that can do a lot to get rid of it. I appreciate I'm fortunate compared to many to be able to exercise at all though.

The beginning of this run pretty much coincided with the death of a schoolfriend so I suppose it's possible the stress of that set a flare going, though as may be obvious I have a hard time knowing what a flare actually looks like for me.

I think I'm going to go back to basics and get my bedroom environment back to the way I'd usually have it at this time of year even if only to get my bearings a bit. I'll also take your advice of course and try to give myself a bit of an easier time both mentally and physically. Maybe I'll get back into the yoga which I'd dialled down on in favour of spending that energy walking outside.

[Pistol]

3 hours ago, Terrier said:

Especially since if I have excess adrenaline flying around exercise seems to be one of the few things that can do a lot to get rid of it.

@Terrier - I know of several people suffering from POTS that used to feel that exercise relieves their adrenaline surges. In most cases that may be so immediately after the exercise, but in most cases this is short-lived and then results in a crash which then turns into the release of adrenaline …  a good balance of MODERATE or even mild exercise followed by rest periods can aide in making it through a flare. Anything more - or anything you have to push yourself to do - makes POTS worse when in a flare for me. 

[Terrier]

Thanks again Pistol , you're probably being very wise here!

My problem is always two-fold I suppose, the eternal POTS trouble of trying to hit the 'just enough physical activity' bullseye through what generally feels like pure guesswork, drunk and with a blindfold on, plus being impatient enough that I get one better day and instead of thinking 'This is probably just the first step towards feeling a bit better' going straight to 'This might be the one day this week I can get a gym session in so I'm going to go all-out while I have the chance'.

I brought the heating way down closer to where I'd generally have it last night but tried sleeping with some socks on which I can't say I've ever really done before, it actually seemed like a better combination. Something to experiment with I suppose and hopefully I'll turn the corner soon..