Nighttime Advice..?😴🦉🌙: Hi, Bit of a... - Asthma UK communi...

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Nighttime Advice..?😴🦉🌙

KatieJ28
KatieJ28
14 Replies

Hi,

Bit of a different topic but here goes...

I have been struggling with sleep for the last few days, getting maybe 2-5hrs max in a 24hr period (2ish hrs of very interrupted sleep at night-coughing pretty much constantly, getting mildly wheezy(I don’t usually have a wheeze so this is a bit odd for me) and having a very uncomfortable tightness in my chest if I have vent any less that hourly).

Been managing to catch up a bit on sleep in the daytime with a few 1-1.5hr naps throughout but this is meaning that I can’t actually do anything productive as either half asleep in bed or too tired to properly function when attempting ‘normal’ tasks.

Currently attempting another pred wean as directed by my consultant after being on high dose for months so this is quite possibly a contributing factor...although my PF isn’t dropping too too low at the moment and I am still having excellent reversibility from nebs/vent-hitting 550-600 post (best 620).

The main issue is trying to get to a level that my body deems ‘acceptable’ to sleep with at night and actually maintaining there long enough to sleep restfully and for more than an hour at a time!!😂😅😴

I have tried nebbing before sleep and yes, it works, but not for that long and I have been told to try and use vent instead of nebs by my cons at my last appt so trying to implement this.

Does anyone have any advice on how to tackle this issue/anyone had a similar experience?

Thanks x

14 Replies
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Js706

Hey!

I can definitely sympathise! I often go through periods where I almost end up being nocturnal because I'm only able to sleep during the day when my asthma is better.

The only thing I can really suggest is good "sleep hygiene" - so trying to make sure you go to bed around the same time every night, having a set bedtime routine to try and get your brain into "time to sleep" mode (this sometimes helps me more if I'm having sleep issues due to pred dose changes!).

Sometimes if I've got a persistent cough I try having some non-drowsy dry cough syrup by my bed and have a small amount if the cough is bothering me - it doesn't necessarily stop the cough (as that's the asthma) but sometimes the throat coating is enough to help me drift back off to sleep for a bit.

But yeah, it does really suck and trying to be productive while its going on is so difficult! I often have to remind myself that even if I can only focus on something for 10 minutes before needing a rest, that's still 10 minutes done and it slowly builds up!

Also just to reiterate (I'm sure you've been told it loads) that if you're really struggling and your pf etc is dropping low then you should go to hospital and not try to ride it out with nebs and vent at home. And if you get much more symptomatic you should stop the pred wean because dropping too low will cause more problems than being on a higher dose!

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KatieJ28
KatieJ28
in reply to Js706

Thanks-

Very much nocturnal atm and after no sleep again I gave in and put my pred back up to 40 this morning, leaving a message for my RN team😅

Will try the sleep hygiene/cough syrup and see if it helps🤞🏻😴

Getting very frustrating with not being able to do much but hey-can still do little things so that’s something🙌🏻

Yeah-I know...not having drops bad enough to need hosp yet(it’s mainly the symptoms that are an issue-another weird situation as I don’t usually notice them til my PF is quite low)...and after rethinking things(got a bad pred head going on as well as the lack of sleep so not thinking properly and crying over pretty much everything😂) I am gonna ignore the stupid advice and go back to my old sensible rules for salb etc cause it’s not safe to be following any of the most recent advice from the cons.

1 like
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Js706
Js706
in reply to KatieJ28

Good! 😊 that sounds like a sensible plan!

It doesn’t always get me loads of extra sleep, but when you’re stuck on nocturnal mode every little helps! 😂 just make sure not to get a syrup that makes you drowsy (although most of the dry cough ones don’t) as that can make asthma worse overnight.

Yeah it’s really frustrating but it’s important to remember when things are bad that even a small achievement is an achievement! And try not to beat yourself up too much about it

And glad you’ve decided to ignore the unsafe rules!

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KatieJ28
KatieJ28
in reply to Js706

Yeah-really need to put a sign up in my room telling me to ignore the stupid rules and even myself when I know I’m not thinking sensibly etc😂

Will try it, will be better than what Mum keeps suggesting which is to get on some sleeping pills(this just seems like a terrible idea cause surely forcing my body to sleep when not well is really unsafe as I wouldn’t wake up to issues?🤷🏻‍♀️🤷🏻‍♀️😶)

Yeah-trying to stay positive with it all and do things I can do easily(I’m sure my bank account does not appreciate this decision as it consists of online shopping/filing wish-lists with expensive things😂)

Ty xx

1 like
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Js706
Js706
in reply to KatieJ28

That’s probably not a bad idea really! Just to help as a reminder!

Yeah with your asthma so unstable you definitely shouldn’t ask for sleeping tablets. I get occasional short courses of half dose ones (as I’ve never slept brilliantly, even before asthma issues) but have always been told that if my asthma is flaring to never take them - as like you say, you wake up far further into issues and can end up in real trouble. My GPs also sometimes suggest taking a drowsy antihistamine like piriton before bed - but again I never do this when my asthma is bad for the same reason as sleeping pills.

Haha yep 😂 I’m great at doing that too, much to the joy of my bank account!

1 like
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KatieJ28
KatieJ28
in reply to Js706

Ha yeah, may actually do it later today😂

Glad it’s not just me thinking it is a bad idea then...I struggle to wake to mild/sometimes moderate issues anyways so don’t want to think about how I’d end up if I had the sleeping pills in my system too!😅

Managing to keep most of it in the basket/wish-list but that’s not always possible-the dangers of browsing😂

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Js706
Js706
in reply to KatieJ28

My wish lists have now grown significantly after last night 😂😂 struggling to resist temptation at the moment...

2 likes
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Lysistrata
Lysistrata
in reply to Js706

Resistance is futile! Bank accounts are irrelevant.. ;) oops I probably shouldn't be encouraging should I? Hope you have a better night tonight.

2 likes
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444nM
444nM
in reply to Js706

Cortisol ebbs and peaks at different times during a 24 hour period. when cortisol drops in the evening and night breathing becomes more difficult. Cortisol acts as an anti-inflammatory in this situation. Cortisol is produced in the adrenal glands, adrenal function is very important.

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Lysistrata

Hi, that sounds miserable! My lungs like to steal sleep too though often more sneakily and I find the neb before bed can help. Js706 has pretty much covered it but to reiterate: If a neb at bed isn't lasting and you need Ventolin hourly I think it's an indication that more is needed than what you can do at home so don't hesitate to go to hosp (thoigh I do appreciate the concern that they may not help, based on previous experiences - that always makes me reluctant to go when I need and I have to force myself).

I also agree with Js that this doesn't seem like the best time for a pred wean. Perhaps pause it for now and contact your asthma nurse after the long weekend to say what is happening? AUK nurses have said to me clearly in the past that weaning while still struggling is a bad idea. Of course long term severe asthmatics may have to trade off symptoms to try reducing to some extent, but even then I doubt they would be advised to carry on when struggling at this level and needing so much Ventolin (or they shouldn't be anyway).

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KatieJ28
KatieJ28
in reply to Lysistrata

Thanks-

Yeah-I know and will go if things hit that level...but not there yet and with increasing pred again it should make that less likely to happen🤞🏻

Have done this and will see what they say about it when they get back to me...and yeah well, my cons usually says no cap on the vent which is also stupid so going to ignore that advice too and go back to my old rules...if they question it I will get them to give a clear explanation as to why they think it’s a good and sensible idea to wait it out and mask symptoms with salb😂😅🤷🏻‍♀️🙈

Have also been told to never wean when symptomatic by both AUK, my new GP, my RN team and others but cons has it in his head that 30 is the same as 40 but it obvs isn’t and can prove that to him cause always a lot worse when I start to drop the pred...not liking the pred head that comes with it tho so tend to try and wean in the hope that it will somehow magically work without giving issues😂😂🤦🏻‍♀️🤦🏻‍♀️

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Lysistrata
Lysistrata
in reply to KatieJ28

That seems like a good approach - my eyes always threaten to roll right out of their sockets when I hear what your cons suggests! Hope the pred helps and gets you a bit more sleep.

Also seeing above - good plan to.remind yourself that the rules aren't always sensible! From experience they can really get into your head and make you doubt yourself so good plan to have a constant reminder to question whether it makes sense and it's not you going crazy etc.

I am also an online browser when stressed/ill...I try to stick to browsing but eBay can be a minefield!

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KatieJ28
KatieJ28
in reply to Lysistrata

😂😂 yeah, mine too when I’m thinking straight/properly

Thank you-really need it!!😴😴🙈

Always always let the rules/advice get into my head initially and then really doubt myself when I try and ignore them...slowly getting better but hey, better to be slow about it then completely stupid🐢😂

Yup-not always good at sticking to the browsing and end up ordering random crap in the middle of the night😂🤦🏻‍♀️

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hilary39

I also get woken up around 3 am when my asthma is bad (and my cortisol dips to its lowest level). It's such a scary feeling to wake up unable to breathe and it's almost impossible to go back to sleep afterward no matter how tired you are. I sympathize! So nice to see so much comiseration on this site. None of my friends, family members etc. understand how exhausting it is to deal with this day in and day out.

We went to a friend's house this weekend and ate lunch and dinner on their patio. Their neighbors have outdoor cats who roam around and basically live in our friends' yard and I'm guessing lie all over their patio furniture as I am still in a terrible allergy attack three days later (cats are my kryptonite). I have barely slept since and it's just so frustrating to realize I can't do something as simple as eat outside on a nice night at a friend's house...!

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