peege2 months ago

Hi Lynnetp, just wondering..... do you do mucus expelling sessions before you go to bed? A friend who has bronchiectasis now does three physio sessions daily to get rid of mucus.

has your gp never offered you a respiratory physiotherapist to learn how to expel, if not I'd ask for one. I've not had to deal with this problem but it must be exhausting for you. Hope you get some informative replies soon. P ××

Lynnetp in reply to peege2 months ago

Hi Peege, thank you so much for your reply.

Yes I have at least 3 clearance sessions a day, the last of which is just before bed. My pulmonary physio recommended a flutter device which I use to help loosen the mucus too.

It is exhausting. I rarely sleep again once I’m awake from 4ish. I’m hoping to speak to my consultant this afternoon so I’ll bend his ear about it too & see if he has any bright ideas!

Thanks again xx

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Patk12 months ago

Ru prescribed carbocysteine to thin the mucous,to make it easier to get up? Ive had mucous burden for a long time,so u have my sympathy.ive found doing dedicated sessions min of 2or 3x day,incl before bed, helps & shorter quick expectorations in between( approx 2hrly) useful. Have u tried antihistamines to see if they help? It's v tiring xxx

Lynnetp in reply to Patk12 months ago

Hi Patk1, thank you for your reply.

Oh goodness, so you’re dealing with this too then? I was hoping someone would have a solution for us, but it sounds like we’re very much on our own to find the best way to cope.

I was prescribed carbocysteine a while ago but as my mucus isn’t particularly thick, I’ve not used it. I worried that it would make it watery and I would feel like I was drowning…..I’ve had experience of this when I was going into heart failure a couple of years ago & wouldn’t want a repeat performance 😱

I could try antihistamines….anything’s worth a go!

Thank you again. If I find a solution , I’ll let you know!

Lynne xx

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Patk1 in reply to Lynnetp2 months ago

Yes it can do that.ive bronchiectasis,not copd, among many other lung&airway probs.yes it's about self management+ lung clearance to help avoid infection.Yes antihistamines worth a try as tree pollen high now in UK x

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Nula2 in reply to Lynnetp2 months ago

Hi Lynne, I have bronchiectasis amongst other things and I take carbocysteine (2 three times a day). When I first started taking it I noticed my nose ran a lot more! 🙄but that seems to have settled now. I also have a Fostairs inhaler (2 puffs twice a day)and an Acapella device. All were prescribed by my specialist and although I am still breathless and produce a lot of sputum I feel it has made it much easier to shift. Think they may be the cause of me waking every couple of hours in the night because my mouth is unbelievably dry but am loathe to stop taking them because of the long term benefit of helping clear mucus. I have also cut back on dairy products which helps as well. I hope you find something that works for you. Take care xxxx

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jackdup in reply to Lynnetp2 months ago

How are you dealing with the heart failure?

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Lynnetp in reply to jackdup2 months ago

It was decided that I didn’t have heart failure in the end. I was treated for it and given medication for it but by the time I had an echocardiogram, all was well 😊 xx

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jackdup in reply to Lynnetp2 months ago

That’s great to hear as that is the exact same thing that happened to me and in the end found out it wasn’t heart failure which was a huge relief, but it was a trying 3 months until I found that out.

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Lynnetp in reply to jackdup2 months ago

Oh my goodness! 3 months?! I think mine was about the same. Great news for you too though! 👍😁xx

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Littlepom2 months ago

It is probably coming up at night because you have not emptied your lungs properly during the day. When you sleep and your breathing changes, anything left down there is going to have the opportunity to work its way out. I know that this isn't what you want to hear but if it is not an infection which is causing more mucus and therefore needs antibiotic to clear it, it means rigorous sessions several times during the day and before bedtime to make sure that it is all out. I have bronchiectasis and we tend to make so much mucus that if we didn't do this we would never sleep at all.

Lynnetp in reply to Littlepom2 months ago

Thank you for your reply.

I’m sure you’re right. I’ll need to be more vigilant with the clearance & hopefully that will help at bedtime.

Many thanks

Lynne xx

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Littlepom in reply to Lynnetp2 months ago

It's a pain I know 😖

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DeeSending2 months ago

Hello Lynne

I empathise with you! The great spit has been going on for 4 years for me. A couple of mucus swelling meds have hit the bin now. My call. I drink hot water a lot. At night I too sleep upright and have a spittoon at the ready. I have got used to the nightly procedure. Having been a part of a medical research study on this very subject, mucus is a common IPF condition. No real solution so far. Get your sleep when you can not just at night. I don’t know about you but I have regular night trots and clear the junk out of my throat then. Even my cat bumps me awake when I do a gurgling snort! Is there no peace?

Anyway, please realise you are not alone. There are many hacking, spitters and snorters out there!

Happy gurgling.

Lynnetp in reply to DeeSending2 months ago

Your reply made me smile…..which is a surprise at the minute!

Thank you! It’s great to know we’re not alone in our expectorating exploits 😂 I drink lots of hot water too. I do find it helps to keep it mostly moist!

I’m sure I’ll get used to my new normal soon.

Lynne xx

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LMEI2 months ago

Hi Lynn

Sputum clearance is never ending without a day off I'm afraid.

I do postural drainage 2 or 3 times a day, and always before I go to bed. Gravity helps with the clearance. I found sitting up using the flutter device too exhausting.

I have now even added a little bit of patting the lungs when I am lying there. Not sure whether it helps but I keep going.

My consultant said that postural drainage was "old hat" as I was wondering whether she mentioned it to her other patients, but obviously not. If it was to help just one patient that would be good.

I know what you mean when you feel as though you are drowning and can't breathe.

I hope you start getting a good night's sleep as that wears you down.

Take care.

Linda

Lynnetp in reply to LMEI2 months ago

Hi Linda,

Thank you for replying.

I’ve thought of postural drainage….are you able to “pat yourself “ or do you have someone to do it for you? I’m on my own so anything new would need to be viable for just me

xx

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LMEI in reply to Lynnetp2 months ago

Hi Lynn

Yes I pat myself, as I suffer with osteoporosis and I then know not to go too mad.

I would mention that I also do active cycle of breathing whilst on my board. Although with active cycle of breathing there are four stages and I never usually get passed stage two, before I start coughing.

I do hope you find something that helps you.

Linda

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Lynnetp in reply to LMEI2 months ago

Oh that’s probably wise to self pay then!

Do you lay on a board then? Do you lay on your front or side or alternate…? Sorry for all the questions 🙈xx

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LMEI in reply to Lynnetp2 months ago

I lay on a board, which is placed at an angle, so my head is lower than my feet. I lay on my left side first and then twist so I am nearly laying on my back. I am never comfortable laying on my back, feel as though I am going to choke. Then I do the same with the right side, and then I go back and do the left side again.Never feel comfortable laying on my front. I am probably not clearing all of my lungs doing it this way. Sometimes I sit and do active cycle of breathing afterwards, but that is so exhausting.

I feel like I need an industrial cleaner to clear out my lungs. I wish there was an easier way. A once weekly clear out would be good, but that's never going to happen.

Never stop asking questions. Especially to your Consultant. Go with a list of questions. The group on here are very knowledgeable and probably know more than the drs!

Take care

Linda

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Lynnetp in reply to LMEI2 months ago

That’s great Linda, thank you so much. I agree about a weekly industrial clear out! How great would that be?!

Thanks again xx

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poppyshola in reply to LMEI2 months ago

Hi LME , like Littlepom, I've had lung problems since childhood .. along with severe rhinitis and IBS nd varied tummy probs... I had to mention when seeing that you lay on a board to drain ! WOW I thought I'd mention that when I was 10 ish My lung collapsed and I had to go to Papworth hoital to have it drained... then was provided with a triangular shaped wooden frame to sleep on as well as have my chest patted to drain my lungs ... it was soooo uncomfortable... my mum softened after a while of me not sleeping well and removed it from my bed ... bless her .. its not nice to see a child draped over a quite high piece of equipment I guess... Anyway approx 50 years later I was referred to Papworth hospital to look after me and ,my infections ... im still under them they are the best !

I used to worry myself about the infections and the bad bugs like Pseudomonas, Aspergillosis and Staph.. I've had them all ... they also return once gone ... but I feel very looked after...

My thoughts on an industrial cleaner ? Wouldn't that be great

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Patk1 in reply to LMEI2 months ago

I was taught postural drainage( lying flat on sides,with sl forward tilt)with acbt+ huffing by lung physio. I've added in gentle tapping myself, past few yrs+ the Aerobikas great to use in any position ,which is a bonus

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Twinklenose2 months ago

I wonder if diet plays a part here? I have GERD as well as Bronchiectasis, so have to take a PPI (Lanzaprazole) which stops the production of stomach acid and thus reduces the amount of mucus that the body makes to protect the oesophagus and throat from acid vapour. Although this does help, I still find that what I have eaten the day before affects the amount of mucus that ends up in my lungs during the night. The best food, that is that seems to result in less mucus produced, is meat and veg, nothing spicy, no tomatoes, caffeine, alcohol or dairy products - but lactose free milk seems to be ok. Food out of a factory also results in lots of mucus at night for me.

Might be worth looking at how your diet could be impacting on the amount of mucus produced?

Lynnetp in reply to Twinklenose2 months ago

Hi, thank you for your reply.

The main thing I’m careful with is salt. I hadn’t thought to investigate other food stuffs…..but I will now!

Thank you! xx

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Nitroblonde202 months ago

Hi I don't have that problem anymore but do you take carbocisteine from the gp I take it twice a day but if I have a flare up it can be taken 3 times a day two tablets each time. I'm afraid winter is the worst time for people with COPD so many bugs ect I don't go out much at all in cold winter months now,February I was admitted to hospital overnight with a terrible infection the doctor was saying that there was a very nasty infection making its way round people although better than I was every time you have an exasperation it does take its toll on your lungs x

Lynnetp in reply to Nitroblonde202 months ago

Hi, I hope you’re feeling better now after your admission 🤞

Yes each exacerbation definitely takes its toll. I had 4, if not 5 one after the other over the space of about 3 months. It was exhausting. It still is because now I have this new normal with loads of sputum.

I’ll ask about carbocistein. I’ve not taken it before.

xx

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Patk1 in reply to Lynnetp2 months ago

It may be the infection didnt clear + was the same one.hope it's settled now x

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Izb12 months ago

I have been fighting the problem of over production of mucus for years. Mine comes from my sinus's and settles on my chest. I use boxes of tissues which drives me potty having to blow my nose all day everyday as well as being embarrassing. I has a sinus op which helped but didnt cure the problem. I do have a nasal spray that I use late evening that helps and if it gets too much I use antihistamines. I also use Ventolin early evening to help with clearance but find that as soon as I lie down I have to clear out, its crazy. Maybe a short course of antihistamines will help dry things up and allow you to get some sleep, its worth a try x

Lynnetp in reply to Izb12 months ago

Hi, thank you for your reply. I’m sure I’ve asked my Copd team if I’m able to take antihistamines. I’m always wary that something new will interact with medication I’m taking.

Great suggestion though as I didn’t realise antihistamines dry things up! I’m not sure why I didn’t know that, but there you are!

I do hope you’re ok

Thank you! xx

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Digger02 months ago

I'm not surprised that you have lots of sputum at that time in the morning as according to Traditional Chinese Medicine "The Time of the Lungs is 3am to 5am. The start of the body clock cycle always begins with the Lungs because life begins with breath! During the day Qi (energy) moves outward, starting at 3 am." I know this won't help you but at least you know the reason!

Lynnetp in reply to Digger02 months ago

Well who knew!

Thank you for that!

Maybe a change of routine would help…..much earlier to bed & early to rise

xx

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Digger0 in reply to Lynnetp2 months ago

It's said to be the reason why lots of asthmatics wake up at that time as well with breathing difficulties

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mymouse2 months ago

Hi Lynnetp, I have very similar issues with the phlegm, seems to be a never ending supply of the stuff to get rid of, I struggle to get it off my chest, I sleep propped up, often wake up struggling to breathe, I have noticed that what I eat makes a big difference to the amounts of sputum that I produce, for instance if I eat a Sunday lunch type dinner I produce a lot of sputum, that usually starts within a couple of hours after eating, any cured meats such as gammon, bacon etc causes excess mucus for me, it can affect me worse through the night and often affects me all the next day, half the time I just don't know what it is that I have eaten that's caused the extra mucus but I know it's because of something I ate, it's a strange connection between bowel and lung but I am sure it's there, at the moment I am finding that pro biotics are helping a little.

Lynnetp in reply to mymouse2 months ago

Oh bless you! Your story sounds exactly like mine. All I seem to do is cough, huff, clear. It is never ending and exhausting.

You’re the 2nd person to mention a connection between food and mucus production, so I will begin a food diary & hopefully find some things that aren’t too bad.

Many thanks xx

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mymouse in reply to Lynnetp2 months ago

I really hope you manage to ease the situation, best of luck to you..

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Loopylorre2 months ago

Hi Lynnetp, I have carbocisteine that I take, 2 capsules twice a day, it really helps, would be worth mentioning it next time you see a health professional, good luck, hope you get help soon, sounds dreadful what you’re going through 💐🌷🍀 xx

Lynnetp in reply to Loopylorre2 months ago

Thank you so much for your advice.

I will definitely mention this to my Copd team as it’s been recommended a few times now.

Thank you xx

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Loopylorre in reply to Lynnetp2 months ago

Good luck with your next appointment with your team & I hope you get a good outcome from it, don’t give up, only you can make changes in your health care 😊💐xx

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Lynnetp in reply to Loopylorre2 months ago

Thank you 🤞🥰 xx

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sheshed012 months ago

I am in USA and on Medicare, SmartVest is paid for by insurance and uses percussion to help expel mucus and works wonderful. Before this I felt like choking to death from mucus especially at night, but using vest twice daily has really helped me to breathe. Also I use Air Physio devise from Amazon really helps too.It would be worth checking for you, my chest was sore before from trying all other options for expelling mucus. Best of luck and prayers for you.

Schmu in reply to sheshed012 months ago

You may be able to find a used vest for sale on the internet. I do think it's better at getting rid of mucus. Do vests get used at hospitals in the UK? Maybe you could go and try one to see if it would help?

Also, inhaled 9% sodium chloride is something I nebulize to break up the gunk.

Finally, I would keep giving sputum samples to make sure nothing is brewing.

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Lynnetp in reply to Schmu2 months ago

Thanks for that, yes I’m going to do a bit of research into the smartvest. I will also ask my Copd team about nebulised saline. I did do this a couple of years ago but stopped as it wasn’t helping at the time.

Many thanks xx

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Lynnetp in reply to sheshed012 months ago

Thank you for your reply.

I’ll definitely look into a smartvest. I just briefly googled it and will research it further.

I’m so glad it’s helped you so much xx

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Tdster432 months ago

sorry to hear about the excessive sputum disrupting sleep. Definitely worth checking if a physio can check your clearance technique. There is a national trial called CLEAR. It compares carbocisteine tablets to hypertonic saline . We already use these but don’t know if one is better or indeed the combination of both is even better.. you can look this up on BePartof Research. CentreS around the UK are delighted to offer patients the chance to answer this question

Lynnetp in reply to Tdster432 months ago

That’s with looking into! Thank you.

I have a physio that I’ve seen a few times and she recommends the Aerobika flutter device. It definitely helps but it is very tiring.

xx

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brooklake2 months ago

are you helped with oral steroids?

Lynnetp in reply to brooklake2 months ago

They do help with breathing but not with mucus production, that remains the same unfortunately xx

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Alberta562 months ago

Sympathy and wishing you good luck in finding a way to diminish the sputum.

Lynnetp in reply to Alberta562 months ago

Thank you 🥰

Me too xx

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Kristicats2 months ago

I found lacto free milk a help plus NAC capsules to reduce mucus as the prescribed ones didn’t help.

Lynnetp in reply to Kristicats2 months ago

That’s really helpful, thank you xx

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poppyshola in reply to Lynnetp2 months ago

Lynette I've found that good old fashioned Buttercup Syrup taken from the spoon or in a tablespoon or two of hot water helps your lungs to wake up ..OTC or Amazon Dymista nasal drops, I think prescription only .. really helps too x

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Lynnetp in reply to poppyshola2 months ago

Thank you! I’ll give that a whirl….nice & simple 😊xx

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Heaven202 months ago

Hi there, sorry to hear how you are struggling, I too was like that before diagnosis of bronchiectasis, but as times gone on its not too bad.,but as soon as March/April comes around I get allergies. Right now I can feel the increase, maybe you could possibly have an allergy of some sort. I'm dreading the next few months honestly....hope you get some help and things get better for you.

Lynnetp in reply to Heaven202 months ago

Oh bless you. I do hope the coming months aren’t too bad for you. It must be awful to know tough times are coming. Hopefully you’ll find something that works for you 🤞xx

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Milo19982 months ago

Hi, I suffer from both chronic rhinosinusitis and bronchiectasis which flares up when I am a sleep. I have symptoms similar to your ones at night, even after I have successfully expelled the sputum from my lungs. I find it helpful to lay on a pillow that lets you sleep on your side to reduce the post nasal drip, I also use an air purifier. I hope this helps.

Lynnetp in reply to Milo19982 months ago

I’m so sorry, I missed your reply.

Do you sleep flat on the pillow, so it kind of props you up in the middle of your rib cage?

I just don’t know what the best position is to sleep in. Upright or tilted that way, seems to just cause everything to collect at the base of my lungs, which can be traumatic and panic ensuing trying to huff and cough it out. Laying flatter seems to spread it out but still very difficult to expel it in the morning.

Any thoughts?… 😊

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Milo19982 months ago

Hi, I use a Contour Memory Foam Pillow, that supports my head and shoulders, when I lay on my side. This gives me enough room to breath. I find it also helps if you stop eating at least four hours before you go to bed and avoid any food and drinks that causes inflammation at dinner time, like milk etc. I noticed that NAC - n acetyl cysteine was previously mentioned and I have found this supplement helps me cough up sputum, but don't take it just before you go to bed. There are some interesting studies and you may want to refer to this link for more information ncbi.nlm.nih.gov/pmc/articl...

Lynnetp in reply to Milo19982 months ago

Thank you 😊 I’ll check out that link too

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