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Waking unable to breath during the night....can anything be done?

carergirl profile image
18 Replies

Hi there....my mum has copd....she gets about not to badly...I take her in the car and then she can get round the supermarket etc....sometimes she needs her inhaler but not always. She has been waking suddenly in the middle of the night unable to breath...she sits on the edge of the bed trying to keep the panic at bay until her breathing comes back to normal. She lives on her own so this is very scary and I'm so worried and scared for her.....she has been to the doctor but he does not seem to take on board just how terrified she is....ups her fluid tablets for a week....but nothing long term...can anyone tell me if she just has to live with this...I keep thinking surely not...surely there must be something that can help her...any advise would be appreciated...hope everyone keeps well...

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Tuttifruity profile image
Tuttifruity

Hi Carergirl,

I too am caring for a COPDer with night time breathing problems, I HOPE you can get some advice, as we surely need it too. The GP just shruggs off any mention of it.!!!!

Also SEVERE night time sweats, does your mum get these as well? It may be his heart doing this.

Sorry I can't give any advice, but you may like to know, you are not alone, others are experiencing exactly what you are, and I know how frustrating it is not getting ANY usefull advice from The Proffesionals..

Hope you achieve it here.

Linda

maureenjjj profile image
maureenjjj in reply toTuttifruity

Like your mum I too had waken up at night out of breath. I did research and found out that raising the head of the bed helped. Also i have a air purifier and cool mist vaperizer running at night in my bedroom and now I am able to sleep the night. Dust and heat in the winter month's caused most of my breathless nights. Hope this helps somewhat. Take care Maureen usa

rattles profile image
rattles

So sorry to read this, i suffer with night time breathing problems and i know exactly how scary it can be so you have my total sympathy.

The only thing i have found to help is raising the head of the bed, i actually bought an electronic adjustable bed in the end and using a spacer (aerochamber) for the ventolin can make a huge difference if you dont have a nebuliser. I use a nebuliser at night with ventolin and ipratropium (i'm also asthmatic) but 4,6,8 shots of ventolin in an aerochamber also works well, much better than an ventolin inhaler used on its own. Calm, pursed lip breathing as well.

Other than that i suggest you request and push to see a respiratory consultant if you dont already see one and bypass the GP and get some proper advice and a more caring attitude.

Best of luck to you.

I agree with Rattles. Not all GPs have a good understanding of COPD. You need the advice of a respiratory consultant. There could be several different reasons for someone waking short of breath, one of which is sleep apnoea (spelling?) which can be easily treated once it is diagnosed. Please push to see a consultant. Good luck.

carergirl profile image
carergirl

thank you all very much for your advise and support...yes Tuttifruity she does get night sweats...she feels the cold and we just put it down to her having the heating on at warp speed and her bedroom being to warm!! I will try to push for more medical attention...it's hard as she wants help but fears hospitals and what she might hear...so it's hard for me in the middle trying to get her to go...then she does and see the doctor who is no blooming use...and she says I told you I shouldn't have went he hasn't done anything...anyway onwards and sideyways! Again thanks...it's good to know there's people who understand and can give invaluable help and support.xx

skyblue profile image
skyblue

I have COPD lm on oxgen 24 hours so l seen to be ok a freind of mine also has problems with sleep apnoea she was put under the hospital and she now has a neppy over night she said this is much better now and gets good sleep you do have to see respiratory nurse for more information hope your feeling better soon

copder profile image
copder

i have copd and severe sleep apnea i was tested at sleep clinic and was toldi stopped breathing up to 16 times per night! i used to wake up gasping for breath! i am now on a c-pap machine which i use while sleeping so if i stop breathing the machine kicks in and takes over..if you go to resperatory clinic they will test you and put you right ....all the best .

Hi, Depending on what night it is my husband can wake gasping for breath but it is usually worse when he has a chest infection or is coming down with something or it is cold in the bedroom. We have found that if he is feeling breathless before he goes to bed using the nebuliser just before bed can help. The way we got help was to ask the practise nurse to refer us to the specialist respiratory team (explain you are really worried!) and we got a home visit which was invaluable. LIke you our Doctor told us that my husband was Ok and not ill enough for pulmonary rehab - which turned out to be a life saver. It really helped him and give him the confidence to deal with his illness. I know that fear played a massive part in my husbands illness but the pulmonary rehab have him the education about his illness and he realised it did not have to be a death sentence. Good luck! TAD xx

Just found this link which maybe of use - all about sleep with COPD!

copd.about.com/od/sleepandc...

TAD xx

derrylynne profile image
derrylynne

You must make an urgent appointment to see your respiratory nurse, or if you have one, oxygen nurse. These are the best. If I have a problem these are the ones I call. And they are much better than your GP. They have been trained for these problems, and know exactly what to do. They will ensure treatment is provided. And any ongoing treatment with your doctor also. It could be sleep apnea although it could be lack of oxygen when sleeping, I am on the borderline of having oxygen sleeping because of that, or another reason. Like another I have an adjustable bed to raise myself a little while sleeping. And that helps a lot. How high depends on the night - how I a feeling. Don't forget, make that appointment today though. I am sure you will get advice over the phone, and a quick appointment.

Mocarey profile image
Mocarey

I used to wake often like that. Been much better since I was prescribed oxygen. Sometimes your sats fall when you are sleeping and that was the case with me. I am now on oxygen 17 hours a day and although a bit of a bind I can do more. Hope you Mum improves.

Gordon57 profile image
Gordon57

I didn't want to add anything earlier, pending others giving some meaningful advice, as my situation is more negative than positive on this one.

Until just over a year ago I would sleep in bed, but been getting these very shallow breathing episodes and would wake up gasping, sitting on the edge of the bed, finding that the blue inhaler wasn't really helping.

What I had to do was sit there for a while, trying to manipulate my breathing and force myself to take deep breaths until I felt confident I had regained control. But, I was also very wary of my wife needing her sleep and I was disturbing her with my frantic movements to try and sit up.

Sometimes I would get the breathing under control then go down to make a cuppa, then I'd fall asleep in the chair! I got really cold a time or two so took sleeping bags down to try and stay warm. It soon got to the point where I was sleeping in the chair every night, not even going up to bed.

I found that sleeping sat upright didn't bring on the shallow breathing, I was sad enough to record myself with the webcam on the computer! Playing that back showed me that I had a reasonable nights sleep and that comforted me - but put me off using the bed as I was worried about further issues.

I was checked out for sleep apnoea and they gave me an overnight monitor, which they said checked out normal. At the time I was feeling pretty reasonable, considering, and was not in a low spot with a chest infection or anything. The hospital didn't seem to think that would be a problem, the monitor results were fine - but that was just one night, no issues with waking up or poor breathing.

I have tried going to be a few times, some nights I've been OK, other nights I give myself problems by rolling over onto my front, which causes my chest to get squashed up and I'm not only having breathing problems but it can be sore for the day or so after too.

I've only just had two nights in a row in bed, the first wasn't too bad until morning, I'd rolled over after the wife got up. The second was back to the shortness of breath. I've not had it for ages!

We bought a foam wedge to go under the pillows. That helped until I rolled over, and was even more squashed up than normal. I can't get off to sleep laid on my back and it wasn't comfortable on my side. Strange, as I don't get a choice in the chair downstairs, it's basically one position all night.

There is one other difference between the bed and the chair. If I have a chest infection, or even a cold, mucus gathers in the back of my throat when I'm laid down. It rattles after a while, as it builds up, and I need to get up and get rid of it as soon as I can. That could be a couple of times a night plus first thing in the morning.

In the chair it does not collect, it goes down my throat and causes stomach acid, for which I have lansoprazole to prevent GERD and other issues.

I also find that being laid down I get a mouthful of gunk too, A sort of harder deposit on the roof of my mouth, stuck like a bit of toffee. It can take a while to shift in a morning, swilling my mouth out a few times until it dislodges. It's a mucky colour, as though mixed with dust or something - quite possible I suppose.

I don't get that in the chair but have to live with the upset stomach it causes. This is also making me appreciate the reasonable night's sleep I get in the chair. Sometimes I will go on the sofa instead, so my legs are not 'down' all night, which caused some swelling of my ankles and calves.

I prop myself up at one end with my head resting on a cushion on the top of the back, if that makes sense. I put cushions behind me and I'm in a sleeping bag, with another draped over the top and a fleecy blanket round my shoulders to prevent any gaps.

I think I am more worried about being in bed than the actual problems, and that stops me getting a decent night when I do go up. I don't want sleeping pills or anything, once I get off I can sleep for several hours. Usually it will be 3-4am before I get off, as I'm often on the computer until then, and get up around 10-11am, 7 hours -ish.

Everyone I've spoken to tried to say not to worry too much, it happens, if the body needs more oxygen it will regulate the breathing to gather it. As someone else has mentioned, if it becomes a problem they can supply a CPAP machine

There is more on the topic at:

en.wikipedia.org/wiki/Posit...

in reply toGordon57

Hi Gordon57

I have a similar pattern of sleep which ends up with me sleeping in an armchair or sofa. Last night something new. I felt poorly and gave myself prescribed oxygen for about an hour. I climbed into bed about 11p.m. but was wakened suddenly and couldn't breath properly, just deep breathing with a long pause between. I ckecked my sats and my blood oxygen was 82, quite scary. I stood at my window using the sill for support and the level gradually climbed back to 94 which is my norm. I then made a cup of tea and fell asleep in my armchair until 7a.m.

This has happened on a couple of occassions when I have taken oxygen before retiring. Has anyone else experienced this?

jim

Hi I haven't much to add except that I often suffer with breathlessness at night. I end up coughing a lot trying to get rid of mucus. The only other time I get it which is a lot worse is when I wake up unable to breathe at all with an asthma attack. I find the only thing that helps is keeping calm and as soon as I can use my blue inhaler. At first only a trickle goes down but I keep hammering it and eventually my breathing stablilisers.

Sometimes I have to stay up for a while afterwards. I do know that when you lie flat the fluid in your lungs shifts position which I think causes it. Sitting upright for a while helps.

I really feel for you Gordon having to sleep in a chair instead of a bed. That must be so difficult for you. You seem to cope with it well.

Bev xx

carergirl profile image
carergirl

rhanks everyone for the advise and suggestions....hope you all keep better.xx

Festie profile image
Festie

I have COPD stage 4 and during the day I cough a lot. I have all the usual inhalers. If I try to sleep lying down I will wake after a couple of hours unable to breathe until I have coughed all the mucas up. I sleep in an upright position all the time now but still can't sleep for more than a few hours at a time. All that mucas that is coming from the lungs needs to come out and if I don't shift it, it will build up and cause breathless. Getting to the point now where I'm thinking of setting an alarm for every couple of hours to have a cough. I get so tired during the day I can barely hold a thought. Wonder if my time without supplemental oxygen has come to an end?

Caspiana profile image
Caspiana in reply toFestie

Hello Festie .

I'm sorry you are having these issues. Do you take any medication to help with the mucus? Are you on any medication?

Do you monitor your oxygen levels? How often do you see your doctor and have you brought these issues to his/ her attention?

Sorry for the loads of questions.

Cas xx 🌷

P.S. This is a very old post. Maybe you could start a new thread and perhaps get more response. Just a thought. 😊

Festie profile image
Festie

Whoops. Didn't check the date on it before I replied. I don't check my oxygen levels but I'm pretty sure they are low when I wake. Always wake with a headache. I am on Braltus, Fostair and carbosicteibe. The carbosicteibe does help to thin mucas but if I sleep for more than a couple of hours, it builds up. I see a specialist COPD nurse at my GP surgery.

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