Have just spent almost the entire nig... - British Lung Foun...

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Have just spent almost the entire night sitting in my computer chair, Bronciectasis sufferer

gingermusic profile image
gingermusic

What is the answer to a good nights sleep?

93 Replies

Wish I knew I wake up at 4am and just lie there in the hope I will fall asleep but not to be. Go downstairs have a cuppa and try and have breakfast later but my tummy rumbles like mad so breakfast by 5am. I have tried over the counter products. I think its just me my dad used to get up at 4am and me and mum got up with him to get him ready for work. So think my brain is just used to 4am would love to sleep longer.

Thank you for replying. On occasions I will manage to sleep quite well but the I get nights like last night when I am forced to sit in my computer chair from 2.30 am coughing and fighting breathlessness as just cannot stay in bed despite the fact I have an adjustable bed recently purchased. It does help but can only sleep propped up so far.I cannot seem to guarantee a good nights sleep whatever I try

My phlegm not helping I go down so I don't disturb hubby with the coughing which touchwood doesn't happen every night but when it does play up it is such thick phlegm we still have to carry on. Sleep tight for tonight.😃

Spacecat1 profile image
Spacecat1 in reply to Spacecat1

How do you find adjustable bed are they worth buying.

The adjustable bed does help somewhat but because we went for a double dual control I personally find it a chore to make the beds, fortunately my other half does it all for me most mornings bless him

Just looking around at the moment.

We bought ours from Laybrook.com

Pentreath profile image
PentreathVolunteer

Not cheap but getting an adjustable bed worked for me. Up really when breathing not good and lower when it is better. Using pillows in various combinations was not helpful as I am a restless sleeper at the best of time and finished up having to sort them out a lot. Like Spacecat1 if sleep totally evades me then either get up and have a hot drink or read in bed until feeling sleepy. The more you are anxious about your sleep the harder it will be for you.

Thank you for your reply. I bought an adjustable bed about a month ago and it has helped somewhat but still cannot get a good nights sleep. Ok last night was an exception but been up since 2.30 gasping to breathe and coughing. Hardly shifting any phlegm which does not help. Just recently been told its caused by reflux so now taking Omeprazole twice daily and gaviscon before bed which again helps a bit but getting desperate for a good nights sleep. Does not help when you are sharing a bedroom with a partner as I am conscious of disturbing him all the time although he is very understanding

Pentreath profile image
PentreathVolunteer in reply to gingermusic

Yep, reflux can cause those problems and post nasal drip and I have both of those. My GP also prescribed the lowest strength of amitriptiline to take before going to sleep as it relaxes you - it has helped me but everyone is different. Really sympathise with you concern for your partner. My husband, who died in 2008, used to snore a lot so disturbed sleep was another problem!

I think many of us have poor sleep patterns. Mine developed long before my lung disease and has worsened since. I have the TV on all night with the volume low and programmed to various channels with something of interest other than rolling news and shopping channels. It often helps me to fall asleep and I find that when I wake up it helps to have something to watch while staying reasonably comfortable in bed and it often helps me to drift off again. In the past I always had the radio on all night but I don't find much to interest me there now. I also used to read but don't do that now as it often kept me awake.

I hope that you can find something that helps you. Being constantly tired from lack of sleep seems to impact so much on daily living, especially when living with chronic lung disease too.

gingermusic profile image
gingermusic in reply to CDPO16

The TV sounds like a good idea but I share the bedroom with my partner and I do not think he would appreciate the TV being on all night no matter how low the volume. Reading is something I can do during the night but does not always help. Maybe just need to accept this is now the way it is going to be and get on with it. Maybe catching up on missed sleep during the day whenever I can. Thank you for replying

CDPO16 profile image
CDPO16 in reply to gingermusic

I hope that it doesn't turn out to be a permanent thing. I no longer share a bedroom with my husband after getting an adjustable bed in the spare room last year so having a TV in the bedroom doesn't disturb him. ( Not ideal and it took both of us a while to adjust to being separated, but for me it was the only solution). Before that, if I was having a bad night I used to get as comfy as possible propped up on the sofa and have the living room TV on. May be worth a try if you are able to do the same. At least you might get more rest if not sleep. I hope that the Omeprazole and gaviscon help too.

skipwork profile image
skipwork in reply to gingermusic

Can't you sleep in different bedrooms, or different areas of your home?

gingermusic profile image
gingermusic in reply to skipwork

No I can't as I do not have a spare bedroom and the sofa downstairs is not really a practical idea

skipwork profile image
skipwork in reply to gingermusic

You don't need a spare bedroom for lung drainage. Use the bedroom you've already got.

Thank you for your reply the only reason I have held off going down onto the sofa is the trouble of keep coming back upstairs during the night for the toilet but maybe a small price to pay and may be worth a try.

CDPO16 profile image
CDPO16 in reply to gingermusic

Didn't think about the loo. I'm fortunate to live in a bungalow otherwise it wouldn't have been an option for me either. I really do hope you find something that works for you xx

gingermusic profile image
gingermusic in reply to CDPO16

I would love a bungalow but I cannot face the thought of moving at this stage of life.Hopefully I might have some better nights soon, thank you

This sounds odd but works for me when i am really bad. I sit at the dining table with a pillow infront of me and lean forward onto the pillow arms up on the table i fall asleep like that as i say sounds odd but works and as im so tired i do sleep. I think if you dont already some lung clearance exercises during the day and befor bed may help.😴

gingermusic profile image
gingermusic in reply to corriena

Hi no not odd at all I can see why that might work for you so glad you have found some relief for yourself.

knitter profile image
knitter in reply to gingermusic

I learnt that pillow remedy from a nurse in hospital .....lean forward on a pillow resting on the over bed table . Learnt similar in yoga class too .Now I make a pile of cushions and pillows in front of me in bed and lean over these as I don’t have a suitable table .

I used to end up downstairs trying to sleep on the sofa or chair while listening to the radio, so I wouldn’t disturb any one with my coughing .

Now there is a spare bedroom so it’s much easier for all, I used to get annoyed as it was me who was coughing, and me who ended up downstairs and uncomfortable.

You tube sleep videos ,and videos of rain and thunderstorms , waves and the sea help me relax , strangely enough. I have an old portable CD player with Buddhist monk chanting I can use with earphones . or my Loving Kindness meditation CD .

gingermusic profile image
gingermusic in reply to knitter

Unfortunately we do not have a spare bedroom so the living room is my only option maybe a good idea to invest in a personal cd player with headphones and get some soothing music to listen to, thank you for your ideas

I have always woken up every 2 hrs during the night. I Keep radio tuned to 4 extra and use sleep button so hear lots of parts of plays and comedy shows and go back to sleep. You cd use ear phones so that you don't disturb your partner. I see that you have emphysema as well as bronch. I cannot diagnose but feel that if you are working hard to empty your lungs before you go to bed it is more likely to be the emphysema than the bronch which is making you breathless. You need a good talk to your respiratory consulrant to sort thus out.

Jaybird19 profile image
Jaybird19 in reply to Littlepom

Generally we seem to sleep in 2 he sessions so I stay awake for 2 hrs too. Tried sleep programme too paid for by NHS but that was pathetic and I eventually gave up. Had to do a sleep diary for them to help me but they seemed to have a set programme and ignored what the sleep diary told them . Waste of money.)

That did not sound of much help to you at all. Cannot see us sleeping at different times but thank you for replying

Not easy to have a conversation with anybody these days they all seem to tied up with the Pandemic problems still. I am hopefully being booked for a new set of lung function tests so maybe they will show something constructive.

On bad nights, try to prop yourself up as much as possible in bed. To relax, I put in earphones and find soft, gentle music really helps. I sometimes listen to mindfulness videos. I don’t watch the screen, just listen to the words. It might make you need to get up in the night to use the toilet but a big bottle of water by the bed is useful to keep hydrated and thin the mucus.

I also find I need a decent room temperature. Too hot and I feel I can’t breathe at all but too cold makes me cough. A bit of air definitely helps though.

I know it’s rubbish when you don’t sleep and makes you feel miserable so sending gentle hugs 🤗

I am happy with the temperature in the bedroom and always have a small window open for air. I also run the Dyson cool me fan next to my bed which helps a lot. I might try the music idea, thank you

I reckon sitting in your computer chair is about the worse thing you can do, especially if the computer is switched on. Surely that's the place were your mind is at it's most active? Counting sheep is laughed at these days but something equally as boring is what will send you off. Even more important is the preparation for bedtime, getting shut of the gunge which makes breathing difficult and noisy. We all have our own methods for doing that and it isn't easy. But without it a good nights sleep is nigh impossible. We are all different. 🙄x

gingermusic profile image
gingermusic in reply to Don-1931

I don' have the computer on just sit in the chair as find it is the perfect place to sit comfortably that has me upright and in the best position. Getting rid of the gunge is the hardest part of all and do use a nebuliser before bed containing Salbutamol and Saline which does help if only for the first couple of hours.

Don-1931 profile image
Don-1931 in reply to gingermusic

I would have thought using a nebuliser before bed is a not good idea. That is just to loosen gunge which is very sticky stuff. Loosening but not getting rid of it is probably what is causing your problem.

gingermusic profile image
gingermusic in reply to Don-1931

Thank you that could indeed be a very valid point and one which I will take on board. Tonight I shall make sure I do not use the nebulizer any later than 8 and hopefully I shall sleep better.

Patk1 profile image
Patk1 in reply to gingermusic

Do u do lung clearance techniques to expectorate mucous after nebulising

gingermusic profile image
gingermusic in reply to Patk1

No I have yet to get enough breath to do any of the huffing technique find it really difficult

Hi apologies in advance. I have no knowledge of bronchiectasis but the mucus is a problem in my condition, which is Interstitial Lung Disease. I’mPrescribed, Carbocysteine, Which helps the mucus. Making it a bit easier to get up.

I found it took a couple of weeks to work fully when I started taking it.

Also use a nebuliser which is long to me by the county respiratory team, the GP prescribes the Nebules. I use it twice a day, but I’m struggling are use it more?I vefound it useful to manage my symptoms. I’m sorry I can’t be of any more use. Perhaps you could try a small breakfast at 4 am with your cup of tea. I hope this helps in some way

Don-1931 profile image
Don-1931 in reply to Oshgosh

Using the nebuliser is only the first part of the job of getting the mucus out. The second part is the huffing and puffing which has been described on here over and over again on even with videos. I haven’t the patience to repeat all that again. But I can tell you it’s because I have become so expert at it that I’m lasting so long. Watching that gunge clinging helplessly to the side of the wash hand basin against the gushing water from the tap brings joy to my ❤️ 😀x

gingermusic profile image
gingermusic in reply to Don-1931

I am not any good at all when it comes to the huffing and puffing stage, just do not seem to have enough breath in me to do it so just have to manage best as I can. Thanks for your help

Oshgosh profile image
Oshgosh in reply to gingermusic

I use an acapella as well as the nebuliser,it helps with loosening the mucus.The county respiratory team suppl it.I tried using the salbutamol in the nebuliser before bed along with the saline.

The salbutamol kept me awake.

gingermusic profile image
gingermusic in reply to Oshgosh

The Salbutamol may be part of my problem so tonight I am not going to use the nebulizer at all will see if it makes any difference.

Patk1 profile image
Patk1 in reply to gingermusic

It is the main recommendation for bronchiectasis.u may well be woken by mucous loosened by saline.its extremely important to find/ adapt a clearance technique to get it up,to help prevent bronchiectasis worsening. It is very hard to do,but imperative

gingermusic profile image
gingermusic in reply to Patk1

I am going to use mu nebulizer now with just saline in it and then try to do the huffing afterwards so thereby clearing my lungs before bed hopefully that may help me

Gladwyn profile image
Gladwyn in reply to gingermusic

I find making a hot lemon drink made with fresh lemons Manuka honey and apple cider vinegar helps me a lot when I’m struggling to breath and can’t clear the gunk. I sip it hot and by the time I’ve finished the mug full I can feel some relief.

gingermusic profile image
gingermusic in reply to Gladwyn

I do sometimes have a hot lemon and honey drink and do find it quite soothing if nothing else,

Gladwyn profile image
Gladwyn in reply to gingermusic

I also lather vick on my back and suck original Fisherman’s friend lozenges 🙄

gingermusic profile image
gingermusic in reply to Gladwyn

Cannot use Vick's Vapour rub as I am on constant oxygen and the Vicks is highly flammable

gingermusic profile image
gingermusic in reply to Oshgosh

I also take Carbocysteine at the max of 6 daily have never been sure as to wehther it helps or not,

Sorry the bit about breakfast at 4 am was meant for Spacecat.

I understand and was just answering your original question. 🙂x

Poor old you. I'm afraid sleeplessness goes with the territory. I can't add any more suggestions, just commiserations. At least my husband has accepted that falling asleep in the day time is not a sign of moral weakness- took him long enough.

Hard isn't it? You would think that with all the research somebody would have developed someway to melt away the phlegm oh how much easier would that make our lives. Lol

Do not know I wish I did, also have Bronch, and cannot sleep, have asthma and currently congested with tree pollen. Always wake at 3.30, but get a lot of housework done! Not allowed sleeping aids by consultant so live by me kindle and I-pad.

gingermusic profile image
gingermusic in reply to Sops

Seems as though once diagnosed with the "Bronc" we are all doomed to deprived sleep and struggling for breath. I also use my Kindle during the night at times not so much the i-pad as it tends to light up the room thus waking my significant other bless him. Suppose I should look at my settings maybe. One day somebody will find something to melt away the phlegm and make the rest of our lives more bearable.

Sops profile image
Sops in reply to gingermusic

Know what you mean. I live on my own so no worries! On my last consultant telephone call, he discussed various things he thought I needed and wrote to my GP emphasising these. None have been done and it's nearly time for my next 6 month call. Will be interested to,see if its my fault, the GP’s or put down to life. Have just come back from a brisk walk, its cooler and windy today so hopefully less pollen.

gingermusic profile image
gingermusic in reply to Sops

That sounds about normal I am forever being told it will be passed onto the team and they will be in touch, never to hear anything again. Makes me just want to give up at times but then I tell myself to stop being so selfish and live another day.

Sops profile image
Sops in reply to gingermusic

Yes, know what you mean.life up and down at the moment.

gingermusic profile image
gingermusic in reply to Sops

Stay safe and happy

Anyone who has a foolproof solution to your original question would make a fortune! I can't remember what it is like to have a full nights undisturbed sleep! I sleep, wake,go to the loo etc. occasionally make myself a drink...I sometimes find it helps to enact a scenario in my head.I lie there,close my eyes and imagine that I am going on holiday and need to pack my case .I think of each item,sandals,long skirt,green top...... etc etc and often nod off before I've finished 😀!!

gingermusic profile image
gingermusic in reply to Aingeful

Sounds more entertaining than counting sheep which keep moving around so I loose count. Only thing that really helps me bring anything up is either a hot cup of tea or cold milk. Cannot keep drinking those all day as I would never be off the loo. I am not sure which disturbs my sleep the most actually my lungs or my bladder. No fun is it this disease?

I tend to wake every two hours. I used to read a not very exciting translation of Livy's History of Rome - in the year xxxx, yyy was proconsul, zzz was senator, not a lot happened; in the year xxxxi, yyy was proconsul, zza was senator, the proconsul built a bridge; etc.

Now I listen to mild mystery audio books through earbud headphones as hubby is in the same bed.

The most effective audio book for getting back to sleep was one giving instructions for a car tour of part of Devon and Cornwall: set off down the Axx heading south; drive over the bridge and then turn left; after going down the hill, turn right; at the roundabout take the third exit towards Taunton; etc.

gingermusic profile image
gingermusic in reply to Ergendl

Sounds great fun I would probably lay there wondering what was round the next corner Lol xx

Ergendl profile image
Ergendl in reply to gingermusic

The good thing about that book is that I could imagine what was around the next corner. That was the great improvement from using the audio book. Instead of listening to my thoughts churn about everything in the day, my mind was imagining a pleasant drive in the countryside, so I soon drifted off.

gingermusic profile image
gingermusic in reply to Ergendl

MIght well be worth me thinking about thank you

CDPO16 profile image
CDPO16 in reply to Ergendl

I have wondered about audio books but if you nod off have you lost your place? Think I'd prefer something a bit more interesting than the ones you describe 😅

Ergendl profile image
Ergendl in reply to CDPO16

The same audio-book usually lasts me about 3 months as I constantly repeat the playback from the last bit I remember. And there is plenty of choice out there.

CDPO16 profile image
CDPO16 in reply to Ergendl

Thank you for the information Ergendl.

i have to sleep in a armchair bolt upright i find it helps a lot with feet up on a pouffe

I can understand how that would give the best relief I can go hours before bed time sitting up and not coughing or wheezing and then within minutes of getting into bed, even with the adjustable bed I start coughing and then fighting for breath. You know how you need to take a deep breath in to cough? It seems when at my worse that I cannot even get half a breath at times and so the fighting begins, I envy you your chair and pouffe

Its so difficult this problem we have with sleep. I suffer with my sinus's which makes my bronch worse and of course as soon as you lie down the coughing starts, no two nights are the same. I drink alot of water so loo trips in the night are regular. I now use ventolin at around 8.30 and this seems to loosen everything within an hour, so manage to cough up a far bit before bed. I read for an hour lying down, which again makes me cough and helps to clear my chest. I sometimes take antihistamine if my nose is too stuffy, which dries me up and makes me so tired that I sleep very well, this also help the rheumatoid as it relaxes me. I dont have any trouble going to sleep,its staying asleep, thats the problem and rarely sleep for more than 2 hours at a time. I hope you find a way round your problems and manage to get some sleep and if you dont at night there is nothing wrong with a daytine nap x

gingermusic profile image
gingermusic in reply to Izb1

You are so right in that no two nights are the same. If I manage to have a good nights sleep I tend to get so excited, but then more often than not its short lived as the following one will not be so good. I have found that cutting right down on chocolate has helped me and will hopefully help with the waistline as well, what I really need is the ooomph to get up and do some sort of exercise which at the moment I am sadly lacking. I know I should be doing it and also know what I should be doing but so lack the motivation to actually do it. Would much rather sit and do a jigsaw or read than I would exercise, neither of which are really helping me are they? One day something will jolt me into action

Izb1 profile image
Izb1 in reply to gingermusic

I can so relate to this gingermusic. I dont know why this last year I have become so lazy. I think it must be down to covid and the shoulder op the year before. The weather always gives me a spurt, the arrival of spring shows how bad the garden is and gets me out of the chair, nature wont wait and now I have had my steroid shot there is no excuse and my waistline is in dire need ha! x

gingermusic profile image
gingermusic in reply to Izb1

I think us all being shut away this past year due to the pandemic has done us no favors at all. I have become extremely lazy and lethargic and need something to motivate me

CDPO16 profile image
CDPO16 in reply to gingermusic

Can very much agree with that. It's very hard to motivate myself now in spite of boredom and worsening breathing.

gingermusic profile image
gingermusic in reply to CDPO16

That in itself is such a relief to know I am not the only one who finds it really hard to get motivated even though I really know I need to

CDPO16 profile image
CDPO16 in reply to gingermusic

I think that there are quite a few others in the same situation. I know that some of my lung buddies have said the same. I'm trying to gee myself up but not having a whole lot of success so far! Take care gingermusic. Sending love and a hug, Carole xx

gingermusic profile image
gingermusic in reply to CDPO16

Thank you wishing you all well too lets hope we all get the motivation needed

skipwork profile image
skipwork in reply to gingermusic

How do I spent an hour draining my lungs? Bed slightly raised 7 inches with feet higher than my head. Lay my head on pillow, with body on my right hand side because my bronchiectasis is in my left lung. Breathe in four times, hold my breath for 5 seconds then huff, then cough it out. Do that for an hour, morning, afternoon and evening. A real discipline. It's the only way I can keep going.

gingermusic profile image
gingermusic in reply to skipwork

I really think you are marvellous for doing that for an hour, whenever I have tried the huff it brings nothing up for me at all just makes me cough

Patk1 profile image
Patk1 in reply to Izb1

Izb1 my sinuses( chronic rhinosinitis) produce lot mucous too + like u,takes a lot of clearing added to bronchiectasis.i sleep but usually wake 2hrly, clear chest etc but do go back to sleep.i find mask of the niv uncomfortable when nose+sinuses are painful.sounds like so many of us wake a lot

Izb1 profile image
Izb1 in reply to Patk1

Yes Patk1, I think us with lung problems must have the worse sleep patterns going and feel that we could fight these better if we only had a nights sleep, what I wouldnt give for a full nights sleep like I used to have, i can only dream ha! If only x

gingermusic profile image
gingermusic in reply to Izb1

Maybe we should start a nightly we are awake club and while away the hours chatting with one another

Izb1 profile image
Izb1 in reply to gingermusic

Im sure there would be plenty to join in as you can see by the time people comment how late they are up. I think that would wake me up too much as I can go back to sleep x

gingermusic profile image
gingermusic in reply to Izb1

I can very rarely of late go back to sleep straight away it is very frustrating as use to be a solid 8 hour a night sleeper. Never mind it may improve who knows

Oh dear That must be awful for you. I have very severe brochiectasis. I do three 1 hour sessions of lung drainage a day, making 3 hours. A real discipline. I then sleep well. But we are all different.

gingermusic profile image
gingermusic in reply to skipwork

Could you possibly explain what you do within that 1 hour session. I am not greatly helped in that I watch the huff technique on You Tube then when I come to do it cannot be sure of what I am meant to be doing just a sign of getting older I suppose

If you cannot lie down try to get hold of a chair that can be tilted (manually or electrically). I have found this the perfect solution. What matter is that you get some sleep - not how you sleep.

Thanks for the suggestion not really got any space to put another chair but a good idea

That would be a million dollar answer if it worked. I find something works once or twice then back to the drawing board. At the moment I’m using the meditation part on my fit bit phone app. I’m sleeping better. Not as many hours of sleeplessness. My grandson had a weighted blanket which helps a bit. I find a hot water bottle under my legs helps to relax me too and I sometimes can be found doing leg stretches in the middle of the night. Hope you find a better solution for yourself and pass it on XxAnita

I also go downstairs and sleep on the sofa with a hot water bottle behind my back and one under my legs. The tv on low can sometimes help x

Maybe a hot water bottle against my lungs would be worth trying see if that does anything with all the phlegm. Worth a thought

Do you have an untreated exacerbation that's making it harder to sleep? Maybe call your doctor amd get a new antibiotic. Sometimes its hard to see the whole picture bc we are so sleep deprived. I am so sorry you have been having such rough nights.

gingermusic profile image
gingermusic in reply to Schmu

I have no reason to think so, my mucus has not changed color at all and my stats on a daily basis are holding steady with a normal temperature so I have no reason to think of an infection. I was taken into hospital end of November last tear then again 2 weeks later when I suddenly lost consciousness due to air on my lung and had to have a drain put in. I then went back in again January 3oth due to not being able to catch my breath but they could not really find any reason as to why. I don't feel I have been really well since the lung collapse, and not helped by being so scared it will happen again.

You've had a rough time! Sometimes,mucous blobs can block small airway,and can struggle to breathe til its moved. I do think if u could find a lung clearance technique to work 4u,u would benefit.

gingermusic profile image
gingermusic in reply to Patk1

You are probably right and I shall keep trying I tried the huff technique again tonight but I can never get anything to loosen let alone actually come up but I shall persevere, all I can do