Hello, I'm 71 and have asthma, bronchiectasis, Marfan's syndrome and chronic pseudomonas infection. My immediate problem is that worsening breathlessness just before Christmas at night led to me having to sleep sat up on the sofa for a few nights. I can see from other posts that these are not uncommon problems. My asthma nurse has been very helpful and the acute breathlessness is manageable now with Salamol. However, my sleep is still disturbed, often fragmentary, and I'm spending more time out of bed than in it at night. I think it has become as much a psychological problem as a purely physiological now, although there is always enough shortness of breath to keep me a bit edgy at the moment. For the last three years I have slept fine so this is very unusual for me.
Any suggestions will be very welcome. I'm on carbocisteine, montelukast (I note others have reported this being associated with sleep disturbance), flutiform, salamol, azithromycin and avamys. I also have a course of prednisolone prescribed by the asthma nurse but am reluctant to start it in case it makes me even more agitated at night.
I'm interested in -
How best to sleep upright if I need to, without making my back even worse
How to break the cycle of not sleeping and worrying about it even more
Thanks in advance, even if you can only say welcome to the club.
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RJef
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Hello and welcome to the forum. I take my Montelukast by 8pm in order to avoid any nighttime side effects but you can take it earlier. I also do breathing exercises in order to re-learn good breathing techniques. At night, if we mouth breath during the day we will also mouth breath over night and this is hard on the lungs and can exacerbate any breathlessness.
Nasal breathing does several things; warms air, adds nitric oxide, slows air and filters it too. This process means gas exchanges in the lungs is more efficient. Mouth breathing over loads the lungs, doesn't slow down the speed on inhalation, warm it, or add nitric oxide and so it lessens the gas exchange in the lungs and we get into a cycle of gasping more air.
I was lucky enough to be referred to a respiratory physiotherapist and I was taught how to breath more efficiently and how to improve by inhaler technique. Have to practice though as I've picked up bad habits across the years and I have to focus on my inhaler technique. If you search Buteyko on YouTube there are a selection of videos explaining the principles (Patrick McKeown is a recognised practitioner).
Doing the exercises before bed can be meditative and can aid sleepiness. I've used a recliner chair to sleep at times when I had pain when lying down, but I don't think I could have slept upright (I've tried it and end up lying down). Is it possible to raise your bed at the head end and use extra pillows to keep you more raised? Hopefully by doing the exercises you will be more relaxed overall and this in turn will help your back by avoiding the tension.
Thanks Poobah, I have seen a respiratory physio who said similar things, and I've found the clearance techniques very helpful. I've seen Buteyko mentioned elsewhere and I'll certainly follow up on that suggestion. I try to breathe from my diaphragm, through my nose but sometimes the whole process can become so self-conscious that it is difficult to remember what I'm trying to do.
Hi RJef,I’m sure others will be along soon with some useful advice.
I notice that you say you have been prescribed prednisone but are reluctant to take it because you are concerned your sleep will be further effected.
If it were me, I would take it. It is usually only a 5 day course and yes, during those 5 days your sleep may be affected, BUT, once that period has passed, you may well find that you get back to your normal sleep pattern - well worth the extra disturbance, I think.
I’d also just like to point out, that if you do not take it, you are putting yourself at risk of an asthma attack.
Medics do not prescribe Prednisone lightly, so the fact that you have been prescribed it must mean you need it.
Thanks Troilus, that's very helpful. The prednisolone (it is a 5 day course) was prescribed to use only if the recommended changes to salamol use didn't have sufficient effect, and to keep for future use when I have more flare ups. I think I'll try to talk to the prescriber tomorrow and see what her view is.
I think that is a good idea Jef. My understanding is, that while Salomon opens the airways for about 4 hours, it does nothing to address the underlying inflammation which is often the cause of the problem.An increase in your preventer inhaler is a possible (but slower) option. If your prescriber does not want you to go down the Prednisone route this might well be worth discussing.
Dust mites in the pillow/mattress could be an issue, too. For me, it became an issue overnight (I even remember the date 16 years ago) following viral pneumonia. Dry air (<30%) common during cold winter month could be problematic as well. To be able to sleep, I entirely seal the mattress and the pillow with air proof bags; wash all bedding and sleep clothing daily on hot cycle; supply HEPA_filtered air to the bedroom at all times; keep the humidity in the 40-60% range in the winter (at 25C, w/o humidification, winter RH is <30% which irritates the lungs). I still get occasional sleepless nights. To make it through these I take the blue inhaler, helps make it through the night (5 hrs of sleep is better than 0)
Thanks very much for the advice. I'm sure there's a lot in what you say and we have already started to think about the best (i.e. effective and practical) approach to hygiene in the bedroom. I'm not sure we can match your efforts but will definitely try some of the things you mentioned. I don't think I come across anyone going to quite the lengths that you have have, but I'm very interested in how much of a difference it has made. I find that I am having to set aside my habitual scepticism about lots of things as I try to find the best way to manage my condition and I'm learning a lot.
one does not need to go to the insane lengths right away; there are simple quick experiments one can do. E.g. putting on in a soft respirator FFP3 mask can quickly tell if allergies are an issue. I always had one with me when I stayed in hotels. I would always pick hotels with hardwood floors, and would sleep on the floor (air mat) if I got breathless in the hotel bed. I also got into a habit of listening to podcasts which would take my mind off the breathlessness.
Sorry to hear you are having sleep problems, it seems to be a case of trial and error to find a solution. For me, sleep sitting in a bed, even though I have a profiling bed, similar to a hospital bed, is too uncomfortable. Unfortunately, mine has limited leg positions and I end up with back & hip pain, despite a pillow under my knees.
I sleep best in a GPlan recliner chair, how far I recline depends on how much trouble my asthma and bronchiectasis is causing me. I use two pillows on top of the foot rest and this gives me the best position (I have spinal issues) and avoids any back or hip pain.
A guided meditation when you settle down to sleep is helpful, although I rarely sleep right through the night. Usually, I have a warm drink around 3am and read for a while or watch real time canal boat journeys with no commentary or sometimes train rides from the drivers cab, before going back to sleep. I also play relaxation music on repeat through the night.
I manage to get a reasonable amount of sleep, but the key seems to be not worrying about sleeping and just do something else when you are awake. I have just started reading Michael Mosely’s book called Fast Asleep, you might find it helpful.
While Prednisone makes my insomnia worse when I take it, the benefits far outweigh the short term lack of sleep and if keeps me out of hospital, then it’s well worth taking.
It took me a long time to consistently nose breathe, the middle of the night is a good time to practise diaphragmatic breathing as it’s relaxes the body.
Good luck, I hope you find something that works for you.
Thank you Rosyinthegarden,Sounds like your difficulties are much greater than mine, but your summary of your experience and responses to it are very relevant and helpful in my situation. The solutions you found, and your acceptance of your situation, are probably very similar to where I am heading, but I am still hoping my recent flare up is, at least at this stage, a temporary exacerbation. I found your choice of night-time viewing fascinating. I have a couple of times watched Match of the Day in the middle of the night, and learnt that is definitely not the way to to pass a restful night. I am also thinking about what is a a good routine to establish before going to bed, so I'm interested in your guided meditation. I'd also wondered whether at some point I would end up looking at a recliner chair so again I found your comments helpful. Thanks again for sharing your experiences and good luck with your own situation.
Thank you, RJef, I’m hoping to increase my sleep this year. Glad you find it useful, Match of the Day does sound rather stressful!
I’ve found watching YouTube channels that are relaxing & almost hypnotic in nature the most helpful. Cruising the Cut’s “Not a Vlogs” (see his playlist) are restful scenic real time cruises and Britain by Narrowboat is another channel with real time cruising, some are also 2 or 3 hours long. Channels with train cab views include the Severn Valley Railway, Railcam, which has a good selection and I’ve enjoyed the Great Orme tram on the Tourist Line. I’ve also watched cab views aboard trains in Finland and Japan. Anything that soothes & occupies the brain, without fully engaging it is ideal, so something with natural sounds and no commentary is best! I enjoy reading, but a good book will keep me awake until dawn!
YouTube has a vast selection of guided meditations, some specific for sleep. Finding a voice and style that you like is very personal, so audition channels until you find some that gel with you..
I hope you can find something that helps. You’re right about acceptance, it does take away the stress.
Sorry to hear your difficulty with sleeping. I also have back issues coupled with breathing difficulties. I have a foam wedge (from Amazon) to prop myself up with in bed. It can take time to get used to. Especially to stop rolling off it! But after only a few days it became fine and now I wouldn’t be with out it.
Thanks Bevvy, I'll have a look for one of those. I've bought a cushion from Amazon which stops me sliding and protects my coccyx, but isn't very comfortable. It's great to get suggestions from people who've already given it some thought.
Another aid to sleeping when asthma and bad back are both playing up is to try a bean bag on your bed ... I sometimes find it provides better support than a pile of pillows.🤷🏻♀️Also I've taken montelukast for years and find benefits outweigh the downsides.
Hello Beetle53, I wouldn't have thought of that but can imagine how it would offer a better shaped support than ordinary pillows, and probably be less inclined to slipping.
I'm giving the montelukast a rest for a few nights, but will probably resume within the week unless any obvious benefits. I think my insomnia had become a learnt respond to anxiety, but that doesn't make it any easier to resolve.
I have a mixture of hypersensitivity pneumonitis, asthma and bronchiectasis. I sleep much better if I take one 8 hour, (rather than the 24 hour) Benadryl tablet just before or at bedtime. It calms my coughing down and makes me a bit drowsy but worth it for a good nights sleep. My respiratory consultant said I should take antihistamines pretty well all year. I tried the newer generation ones but find Benadryl still works best for me.
Thanks Tryphena34, that's not something I'd have thought of, and haven't previously found anti-histamines effective, but one's condition keeps changing so I'll probably have a think again about that.
I've only just been diagnosed, but I had to spend nearly three months sleeping sitting up following the chest infection which seemed to trigger my asthma. I used a bean bag with a large floor cushion on top of it - I found this propped me up enough to breath, and the floor cushion stopped me slithering around too much on the beanbag. I did find I would wake up a few times a night and need to change position, but I got much better sleep that way than trying to sleep upright in a chair or propped up by pillows. I hope this helps. I've been through two other periods of having to sleep sitting up (due to injuries) and it's horrible - I never take lying down to sleep for granted now.
Sounds like the voice of experience. One other member also suggested a bean bag. I know exactly what you mean when you say you won't take sleeping lying down for granted ever again. I think my next step will be to try foam wedges as my physio said they would be much better for my odd body shape but expect I'll try several things before finding a good enough solution. Thanks again for your comments.
Sorry to read your sleep is disturbed. I take montelukast in the morning as it affected my sleep.I’m on Azithromycin permanently, what helps is a V shaped pillow also lying on your right side is helpful ,as there’s less pressure than lying on the left side.I also listen to Alexis French piano music hope my info helps you🤞
Thank you DarceyDoo, is your pillow a standard one from amazon or somewhere? I've slept much better the last two nights but would like to get back to lying down if I can as my back is not impressed with what I'm doing. I've resumed taking the montelukast as it didn't seem to be affecting my sleep either way.
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