Help Please! Recently diagnosed with COPD and now I can't sleep.

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi, this is my first post.

I was diagnosed with stage 2 (moderate) COPD on Oct 1st (FEV1/FVC after bronchodilation = 54.18)

Six months ago I was reasonably active and virtually free of this disease, and only had the occasional tight chest and breathing problems when I overdid it a bit. 

I am 71, and as I have had hypertension for 35 years and a replacement aortic valve, (5 years ago) all the docs and heart specialists thought my chest problems were angina related. So I had an angiogram which showed my arteries were clear and then had a breathing (spirometer) test which showed I have COPD. I haven't smoked for 35 years, but before that, I was a heavy smoker and I was told the damage was done all those years ago.

Just before I had the test I was experiencing more frequent breathing problems and would get very tired and out of breath after only a ten-minute slow walk. I was put on a Formoterol easy haler and a Ventolin evohaler which did help my breathing, but within weeks my condition has just become progressively worse – especially at night when I have been so congested that I get very little sleep.

I went back to the doctor and he gave me a short course of steroid tablets which worked wonders for a short while. This was about 3 weeks ago and now I am back to square one. In spite of the inhalers (which I also take during the night to help me get a few precious hours sleep) my condition seems to be getting worse by the week.

If I do a bit of light housework, (load the dishwasher, wipe the kitchen table, sweep the floor, etc) or just walk upstairs I am exhausted and breathing very heavily, and it takes at least an hour to recover. Same thing if I take a 5-minute slow walk.

 

I suspect I am now on stage 3 as I wasn't far away from that when I was tested in early October.

The doctor will not give me any more steroids or a steroid based inhaler because he says it will cause a lot of long-term damage, especially as I am an insulin dependent diabetic.

I have an appointment to see the "breathing nurse specialist" next week and I was wondering if anyone could suggest some questions I should ask or some meds (non-steroid based) that I could suggest to her.

Right now sleeping is my major problem and I rarely get more than about 4 hours intermittent sleep. Until this problem, I was a good regular sleeper. I have tried lying on my side with my head on raised pillows, which helps a bit but if I do drop off, I wake up within an hour or so with severe breathing problems and feeling quite ill.

Has anyone else experienced such a fast onset of the disease, and does anyone have some suggestions to help my sleeping problems? It is really making me very depressed as my quality of life has suddenly gone through the floor.

Thanks for any ideas.

Mobi 

0 likes, 16 replies

Report

16 Replies

Next
  • Posted

    HI Mobi! I just read your post. I could not help wonder why you are not on oxygen. Even if just at night to assist your breathing so you can get much needed sleep. I don't know what level qualifies you for supplemental oxygen where you live. Do you know what your oxygen levels are! A finger monitor will tell you what your levels are. This may be a question to ask. In Canada levels lower than 90 are often considered. Hope this helps.

    Report
  • Posted

    Bless you Mobi, I really feel for you.  I too am 71 and I still smoke but I'm not quite as bad as you seem to be.  At least I sleep well, which makes all the difference.  Can you enquire if there is a "Rocket Team" at your local hospital?  They just deal with COPD etc.  I'm afraid I can't be of much help but I'm sure you have the moral support of all of us on this forum.  Please keep us informed won't you?  Whatever information you are given will be of interest to all of us.  Take care.

    Report
  • Posted

    Hi Mobi, goodness, yes, I also went downhill very quickly from moderate to severe, I do sleep well, when resting am aok, do anything and the laboured breathing kicks in. I am on oxygen if oxygen intake is under 30 in Aust. Oxygen is free. I found that the stress of it all and other things was the excabitation if I get stressed I am breathing badly, also if not going slowly to do everything, it drives me nuts. Everything has to be in slow motion. The not sleeping is a concern, think you need referral to specialist, particularly in this area, it will add to your concerns if you are unable to fully understand what is happening. And exactly what medications that will allow you to sleep. If you do not get adequate rest and sleep it will cause you more stress and not allow you to cope with the day. 

    I really feel for you, it appears to take ages to find the right professionals to help and reassure you of your lung capacity and how it takes up oxygen. It appears that your oxygen levels drop overnight and congestion is building up. There is lots of support from the forum and we will be thoping things turn around for you. I am same age as you and know how difficult it is to navigate the medical stuff. Very best, keep us posted, kindest thoughts to you

    Report
  • Posted

    Many thanks to Ellen, Deanne and degb for your kind replies. It really helps knowing there are people out there with similar problems and are giving me support and understanding.

    I can hardly believe that only 3-4 months ago I could walk at a moderate speed for up to an hour with no or very little breathing problems, and now I am exhausted just walking upstairs or doing anything really.

    Yes, degb, everything has to be done in very slow motion, but even then I soon get tired.

     

    When I saw the doctor last Wednesday the only thing he prescribed for me was Mucudyne capsules which apparently are designed to break down the mucus, but to be honest I haven't noticed any difference and in any case, they don’t relieve my breathing problems. In fact, the capsules contain lactose, and for the past two days I have been having diarrhea as I am lactose intolerant and have chronic IBS, so I might stop them soon.

    I can only assume that I didn't get across to the doctor how serious my condition is and how much it has affected my life, especially the lack of sleep.

    Last night I used both my inhalers before sleeping, and woke up after 2 hours, with breathing problems. I took two more puffs from my Ventolin inhaler and eventually dropped off for another couple of hours. Woke up again with a sore chest, congestion, and wheezing and unable to breathe properly. After lying in bed for a while I took 2 more puffs of Ventolin in desperation. Finally dropped off for another hour before giving up for the night.

    I am only supposed to take a max of 8 puffs of Ventolin per day, but I am now taking double this dose and it only works for a short while especially at night. But I don't know what else to do – if I don't take the puffs I can't sleep at all.

    I have to wait another week before I see the nurse specialist and I have also booked an appointment to see different GP the following week. This is the quickest I can see anyone on the UK NHS unless I am dying…

    I have ordered a fingertip oximeter which should arrive tomorrow and I will start monitoring my oxygen. If it is low, I can use this info when I finally see the medics. 

    Report
  • Posted

    Hi again Mobi.  Don't worry too much about using Ventolin.  I was told by an asthma nurse, when I asked about coughing during a cold, that cough mixtures are no good and I could use Ventolin as often as I needed to.  It's good that you are to see a different doctor, do let us know what he said won't you?  Like degb, I have to remember to move more slowly and that too drives me nuts.  Also, I can't bend to do a job or anything really.  It's all a question of adjustment and it does get easier to do with time.

    Take care.

    Report
  • Posted

    Hi Mobi! I just thought of something that may help. It's a device called Aerobika. Google it. It's a device  that you breath in and out of. When you exhale it makes a flutter sound. It is used to loosen the mucus. Read up on it.

    Ellen

    Report
  • Posted

    Hi again. Another thing you can try is what's called "pursed lip breathing". You take a deep breath in then blow it out. The breathing in fills your lungs with oxygen. The blowing out gets rid of carbon dioxide. Read up on this as well.

    Ellen

    Report
  • Posted

    Hi Mobi, My story is very similar to yours I came down with copd over the course of a few weeks with very fast deterioration. I had 2 lung infections over the course of 3 months and tried mucinex along with various other meds. Symbicort, Ipratropium and albuterol nebulizer, and various others. I found mucinex to be of no help at all after experimenting with it for months. All of the other meds were helpful but the key thing I found was to clear the mucus every day using the following strategy. I've been using this for 6 months now and haven't had any infections and my shortness of breath is improved by 2x as well as the ability to sleep for 8 hrs. I am not able to sleep lying down unfortunately but at least I can sleep uninterrupted now. I start off with ipratropium/albuterol using a nebulizer. I take 50 inhalations then use chest percussion followed by 5 deep breaths held for 3 seconds then released rapidly followed by 5 shallow breaths released quickly. Then another 50 inhalations and repeat. By this time you should start to expel some mucus. I do the chest percussion after every process. Finally I do the last 25 inhalations followed by the breathing again. Next I do 20 breaths using an acapella device deep breaths then hold then exhale thru the device causing a vibration to break up mucus. Always follow up with percussion and breathing exercise after every step.  Finally I use hypertonic saline thru the nebulizer for around 75 inhalations. Within 10 minutes or so my lungs are clear and I'm good for most of the day. I use 2 puffs of symbicort after this. About 8 hrs later I use 1 puff of Anoro. And just before bed I take 10mg prednisone. Having experimented with multiple inhalers etc and meds this seems to be best for me. Many people use only Symbicort but I can't use it more than once a day without getting headaches. The percussion, breathing techniques and hypertonic saline were all things I picked up from the Cystic Fibrosis Foundation. I use 5tsp per cup of water which is a little heavier than they recommend but I found it works best for me. 

    Report
  • Posted

    Hi Folks,

    Thanks again for all your suggestions and advice. 

    Deanne, thanks for the heads-up on the Ventolin. Instead of waiting for 4 hours, I now take it whenever I start to struggle for breath. In the daytime, it is still roughly every 4 hours unless I am exerting myself when I take it more frequently.

    At night, I take the two inhalers before sleeping and then I get about 2-3 hours' sleep before waking and struggling for breath. Then I take two more puffs of Ventolin and drop off again after maybe 45-60 mins, (it takes 30 mins for the Ventolin to kick-in). Then another 2 hours or so of sleep and I wake again, and so on. So, between around midnight and 9 a.m. I achieved about 5-6 hours of sleep, which is not great but better than it was.

    To those of you not in the UK, I'd like to explain that I have little or no say in the choice of medication that the NHS doctors prescribe for me, although I can ask for something different - for what good it usually does. I asked for a steroid-based inhaler and I was told 'no'. I will chat to the nurse next Friday and see what she says and try my luck with a different doctor the following week.

    Ellen, I have just received an oximeter and have started to check my O2 which was 92% at 12 noon when I was not feeling too bad, as I recently used the inhaler and was at rest. I'll see how the readings go later in the day and especially at night when I suspect the oxygen level will go down. At least that will provide me with some ammunition to persuade the docs to give me some different medication or oxygen for the nights.

    Again, many thanks for the supportive posts, I am all alone here with no one to talk to about all this.

    Mobi  

    Report
  • Posted

    Another couple of tips I've learned Mobi, from my "Rocket" nurse and a Paramedic, is to use a spacer with your Ventolin to ensure it gets into your lungs.  Ask your doctor for one or you can buy them at your pharmacy.  When you have a spacer you can also use it as a nebuliser, so before you lie down at night, put 5 - 8 puffs of Ventolin into your spacer then just breath it in and out for about 5 minutes.  This may help you to sleep longer but it certainly won't do you any harm.  The doctors don't tell you these things because they don't have time.  It's a question of trial and error to find what works for you, there are no set rules so please don't despair.  Lots of hugs. xx

    Report
    • Posted

      Thanks, Deanne, I do have a spacer, but was just using for the standard 2 puffs a time. I shall try putting more puffs into it - sounds like a good idea.

      Mobi

       

      Report
    • Posted

      Hi Mobi

      You could try a salt pipe, available on the Internet. It’s a natural remedy - might not work miracles but it certainly can’t hurt to try. I’ve used one and it does seem to help.

      Report
  • Posted

    Hi,  Yes I feel for you as you seem to have a number of illnesses aswell as COPD.     I don't have COPD myself but my husband was diagnosed 10 y6ears ago when he was 62, he was fine one day and came home from holiday and I had to get the ambulance out during the night as he couldn't breathe,  I knew what the diagnosis would be as I have moaned at him for years to stop smoking as could see his general health was deteriorating whereas he couldn't.

    Anyway, 10 years later, and for a few years he still kept smoking but only one or two rollups per day but couldn't seem to give those up they were the highlight of his day,    This last year though he stopped completely, well had no choice, really, as when the illness progresses, COPD patients have more frequent stints in hospital with chest infections, and his led to pneumonia twice, and which each exacerbation, the lungs worsen, never to regain what they were before the episode.

    Now he has been diagnosed with AF and is waiting to be referred as they are going to try and shock his heart back into rhythm,  but this co9upled with his COPD, has changed his life,  AND MINE, very suddenly for the worse,   he now cant do much at all,  the slightest small walk and he is fighting for breath, the inhalers do very little now, and when he gets a flare up he always has supply at home of Prednosilone and antibiotics, but even these don't work like they used to, necessitating more treatments.

    He gets very depressed as can see everything now is on my shoulders and I am 70 myself with a bit house and ground to maintain alone.

    Doctors don't realise the impact this disease has on the wives and husbands of sufferers,  I worry myself silly knowing there is no cure and having to watch a man who was self employed and active all his life suddenly reduced, mainly through smoking, to how his life has become.

    He has an electric bed and has no trouble sleeping though, but has to highten the head half way through the night until almost sitting up which helps.    He is not on any form of oxygen and says he refuses to be,  but the day may come when he has no choice.   He has an Oxymeter and measures his oxygen levels himself though and even though reasonable figures,  still his breathing on exertion is bad,        These last few months too,  he falls asleep during the day a lot,   TV goes on and he is asleep after about 5 minut5es,  all indicative of COPD.

    My advice to anyone diagnosed is to give up smoking immediately,    I gave up at 42 following pneumonia,  it was a question of did I want to help my lungs and live longer or not..... so no contest,  I gave up and never was tempted to have another one,  all comes down to willpower,    my own husband was in denial after diagnosis saying that it wasn't the cigs, but everyone knows they are the main culprits, and who would continue to smoke once diagnosed,  is being very foolish and quite honestly is asking for a poor prognosis.

    COPD is a terrible disease, with no cure,  any young person today should be made to sit with a patient for an hour and be told this will probably be them if they don't give up this awful habbit.    Its the young of today that are the smokers now, as most of us older ones have given up, mainly through health.

     

    Report
    • Posted

      Thanks for your post and as far as I am concerned, esp the part about sleeping.

      your post has also highlighted 2 important areas.

      1.the potential bad quality of life smokers are reaping for themselves one day. I stopped smoking in 1983 but the damage was already done all those years ago.

      2. the effect COPD has on partners/loved ones. They have to suffer as well. it isn't fair is it?

      thanks for the input.

      Report
  • Posted

    I've just returned home after almost a week in hospital. I was rushed in last Tuesday with a hole in my bowel caused by diverticulitis. Apart from the agony in my gut, I was relieved to find that my COPD was sort of behaving itself. No breathing problems at night and minimal discomfort during the day - not that I was exactly exerting myself.

    Just before  I was admitted, I went shopping on a very cold day and I had a terrible breathing attack after less than 5 minutes of very slow walking and I honestly thought I wasn't going to make it back to my car.

    So I was wondering; was the improvement in my COPD due to the very warm hospital (much warmer than my home) or the huge amount of IV antibiotics they were pumping in me to repair my hole - or both?

    Any ideas, as I am now back home and awaiting my COPD symptoms to plummet again.

    Thanks

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up