Hi people, I am 62, ex long term smoker. Here is my situation.
I regularly wake up too early in the am and after going to the loo I try to go back to sleep but start to experience what feels like suffocation or as if I've forgotten to breathe. Often I can't breathe through my nose because of congestion (don't know why) so I have to breathe through my mouth which dries out my mouth and throat horribly. Basically I can't get back to sleep, I get anxious and have to get up too early so I'm tired all day and end up napping upright on the couch.
I stopped smoking cold turkey on 7/11/23 when I had a chest infection and could hardly walk. Since then I have just felt lousy. I don't have much phlegm anymore nor much of a cough and the constant wheezing has stopped but I am very breathless all the time and have to walk slowly and take the stairs 1 at a time. All exertion is terrible. I've had 2 different long acting bronchodilators but I can't feel any difference so I've stopped using it. It was also giving me a horrible dry wheeze - I don't like all these drugs. I also have the salbutamol for an emergency but again I hardly use it - I think I have used it twice. The nurse I see told me I have moderate to severe copd and I am now waiting for the pulmonary rehab course. So that's about it. The sleeping thing is my main concern - is this normal? I'm wondering if I've even got copd - maybe I've got heart problems. It's so hard to get to see anyone now I've almost given up. I just feel terribly alone and helpless and very anxious all the time. Sorry if this post is all over the place but that's how I am these days.
Caroline x
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caryhug
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Hello Caroline, I'm sorry you're in such a state. It doesn't sound much of a reward for giving up the fags. I have a very similar sleep pattern. I wake up at 5, or 4.30, and can't get back to sleep. Occasionally adding an extra pillow to the pile, or taking one away, does the trick, but not very often. I'm resigned to falling asleep on the sofa after lunch and after dinner. At least sleeping upright stops the gunk from building up in one's lungs or nose. I too wake up congested, though not as badly as you. It gradually clears through the day. At the moment it's worse for me because I've got a chest infection, so it's back to doing things very slowly and being ultra cautious on the stairs.
I really think you need advice from a competent health professional about using your inhalers- they do help. You need to give the ones you've got a decent trial and, if they don't suit, ask for another. I hope the Pulmonary rehab course will help you- most people on this site have found PR a very positive thing. The nurses on Asthmalung are very knowledgeable and understanding. It might be worth giving them a ring on 0300 222 5800. I'm sure you'll get lots of replies soon from other forum members. Do keep in touch- we're here for you.
Have a chat with your medic and the asthma UK helpline. Unfortunately for a lot of lung conditions you have to batter away to get the right help and advice. You need to be on the right inhaler for you and to use it correctly, keep asking until someone helps.
I have sent you the link to the asthma UK online copd group. You should get some ideas from this.
Hello and welcome 😊 I often wake up at 3 or 4 and can’t get back to sleep. Having lots of pillows so you aren’t lying flat can help, or an adjustable back rest. I often listen to an audiobook because I can at least close my eyes because I know I won’t get back to sleep. Sucking a sweet will help ease your dry mouth and throat. However, this is just a way to manage your symptoms, it does not get to the cause and root of the matter. Hopefully you can get some proper advice from your doctor and not just be left to wait for your pr course. Hoping the pr will be beneficial for you when it comes.
Hi Caroline I take Sterimar Congestion Relief. It works and is safe as only salt water . Try it and you will see a difference as it unblocks nose immediately. . xx.Sheila 💕
Is this the stuff that you scoot up one nostril and let it come out the other? I’m interested to know how you use is because I’ve seriously congested in the morning after using my ventilator all night with the mask on. I start off being able to breath out my nose but come morning, I feel as though someone’s laid a carpet on my tongue my mouth is so dry as is my throat. Thanks for any advice you can offer me Garshe xx
Thank you, I’ll welcome any advice. But do you not feel as though you’re drowning with scooting water up your nose and does it not get into your lungs too?
It is safe to use if you have COPD. It works for me, it's up to you if you don't want to try it. Just a suggestion. Good luck xx.Sheila 💕 ps. Many others on this forum use it. Look at your replies xx
This is normal for people with lung conditions, when you lay down mucus collects on the sides or back of the lungs. This can cause breathing problems and the need to cough, try sleeping in a semi sitting position. I can only sleep this way and have an adjustable hospital style bed, extra pillows and bed back rests are other options. It can take some getting used to but worth it to get undisturbed sleep
Oh dear me, am sure you mean well but is really dangerous to advise someone to use oxygen with out a) an oxygen level assessment or b) an oxygen prescription.
In the UK oxygen assessments where required are offered by our health services free at the point of delivery so if we need oxygen therapy then machines are available.
She's a grown adult, capable of making choices for herself. I have / had the same symptoms as she, supplemental O2 helps dramatically. O2 in the amounts delivered by a 5L/min machine are not dangerous to the user - fire risks aside.
I just want her to be able to sleep comfortably and peacefully. Anyone with critical illness knows that getting good, restful sleep is of tremendous importance.
BTW, I'm not in the UK, I'm in the USA. I have no idea where the OP resides nor under what circumstances.
My nose always seems blocked when I first try to sleep. I find using a sterile saline nasal wash to clean out the back of my nose a short while before turning the light off, helps to stop that. You can buy these at the local chemist, and they don't cost much. they usually come in some sort of container that makes it easy to squirt up your nose. It's only salt and water so it's not a drug.
I also listen to cds of mild stories like Agatha Christie's to help me get back to sleep when I wake up regularly through the night. At least, these days, I only wake two to three times, not five or six like I used to.
A glass of water by the bed is also useful for that sandpaper mouth in the middle of the night.
Hi,i'm in the same state as you,ie long term smoker etc,i wake like you all bunged up and totally out of breathe after the early morning bathroom visit.The pulmonary rehab made all the difference for me,they taught me how to breath and use the various inhailers.They also assest my oxygen needs and i now use a concentrator for when i'm walking and going upstairs.Go to PR if you get a chance.Main thing is try not to panic,good luck...
It seems that Sterimar is the answer to many nasal problems. I have a nasal polyp and post nasal drip and the Avamys steroid spray played havoc with my sinuses. The ENT consultant agreed that I should try Sterimar instead and I have a follow up appointment in 3 weeks to review the situation.
I'm finding it helps to use my AeroBika, and then inhale Ventolin (Salbutamol) through a spacer in the evening before I go to bed. These gadgets are available on the NHS. See if your doctor will prescribe them. The AeroBika is a device to help shift mucus. (No drugs involved.) The spacer helps you get more of the inhaler dose into your lungs. If your doc is not willing, ask the Pulmonary Rehab team.
Please don’t give up, I can relate to everything you have wrote, after nearly forty years of asthma copd problems. There is lots of support out there and it’s finding the right treatment for you, some are effective some maybe not so much but without my relievers nebules oxygen I would not be here. When breathing gets worse so does my anxiety which I have treatment for anxiety as well. So basically if u dont shout u don’t get heard and that as been my biggest downfall in life, I never liked to pester doctors which left only me suffering in the end, but know I got good team sorting it out and I’m amazed how much better and support there is out there for us. You will find lots of good friends and knowledge on this website and remember your never alone even though we can think that at times, even myself. Take care.
Although WimWalther has meant well and is trying to help, we would never advise for you to obtain your own oxygen without advice. In the UK you need to be assessed by an oxygen clinic and have a prescription. It may be unsuitable for you and at worst dangerous. Our nurses can help with questions to ask your health care provider if this is something you wanted to explore.
I wake up to go to the loo every night. I take two puffs of ventolin, when woken up, have a glass of water by my side and sleep with a fan on - this helps me go back to sleep.
So sorry to read that you are having such a tough time. Well done for stopping smoking. It must be awful for you not sleeping and yes sleep patterns can and do change over time. Getting a good nights sleep can really help can't it ?
If you have prescription for inhalers then perhaps restart them or have them reviewed by whoever prescribed them ?
Activity or graduated exercise can help to desensitise Asthma Lung UK site has some gentle exercises on the website which you can follow.
Have you attended a PR course ? If your breathlessness exceeds MRC Dyspnoea Scale level 3 then you are eligible to be referred to PR.
Please do not buy any oxygen equipment ( as someone here has advised ) Medical oxygen in the UK can only be supplied when a patient has been given a prescription for oxygen therapy. Oxygen delivery machines, bought online from unauthorised dealers, do not comply with MHRA requirements and are not calibrated to provide medical oxygen. Using oxygen without a prescription can lead to CO2 retention which can be dangerous and using it would fail any unknown prescription.
If you feel your oxygen levels checking then please ask your doctor to do that.
Hi Caryhug...like you I stopped smoking 8 months ago ... don't feel any benefits at all unfortunately. I don't have coughing/mucus or wheezing and I also wondered if the breathlessness was cardiac related. I'm going to try and get these concerns checked out but when I mentioned it to the GP she didn't seem to take it on board. I was moved from Trilegy to Trimbow and don't feel any better. I would suggest having water and lozenges beside your bed ...sleep on raised pillows and I know you'll think I'm mad ...but listening to the shipping forecast usually helps me to get to sleep 🤣🤣good luck!
There is lots of good advice here from others, PR is invaluable with lung conditions, hopefully you will hear soon about classes to attend, the information also is very good & the nurses & physios that run the classes are really helpful & give good advice, good luck 💐🌺 xx
HI I'm the same I wake early regardless but if I get up I cough an cough and that causes me to be short off breath I sometimes go back ta bed and you would think I had quick run but it settles down with in 5 minutes when I do get up soon as go ta get out off bed I cough cough cough by the time get down stairs very short off breath till it settles but I take my ventolin I think my cough is due to coughhin
I was excatly the same as you, you could have been describing me.
I was given oxygen but the breakthrough was when the respiratory clinic gave me a nebulizer which i use daily, one nebule of Salbutamol a day. Stephen x
I've slept in a sitting position for many years. Started with sleeping in an easy chair, then bought a chaise, and then I made a plywood former and had some memory foam squabs made to go with it. Then I found an adjustable bed (like a hospital bed) in AgeUK, where I sleep now, still using my custom made foam squabs.
I found that when I laid flat I tended to fill up with muck. I mean, do you have any trouble with your breathing when you fall asleep in front of the tele? If not, sleeping with your trunk fairly upright may be the answer.
Just want to say I know how you feel but please please stick with the no smoking commitment . Even if you don’t feel better right now it will be better for you in the future . I stopped when my mum (long term determined smoker) was in and out of hospital - it was not good - but I did stop and am forever grateful. I do also have COPD but not too severe - exercise, keeping clear of aggravating substances - it will help .
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