Hi Everyone
I have pulmonary fibrosis and cannot get a night's sleep because I wake at 2 am. 4am 6 am with a cough. Before I go to bed I clear as much as I can using the ACBT and the Flutter but it takes at least 40 minutes and by then I am exhausted. I take my Ventolin inhaler and lie down - on my elevated mattress - but still wake a couple of hours later wanting to cough. Has anyone got any ideas - please?
You might want to try doing lung clearance a bit earlier than you presently do. There is often gunk which you will have managed to get into the large bronchi with physio, which is still waiting to be expelled. (Hope that makes sense)
Good luck
Cx
Hi - thanks for replying so quickly.
Yes, doing the acbt earlier makes sense.
I don't fully understand the "large bronchi" or any of the geography of the lungs (the pictures on the internet are too small and not clear).
i have not yet seen a physiotherapist, despite several promises from the consultant. I'm sure you're right about gunk being left behind, as even after 45 minutes of acbt and flutter, I can still hear a rattle if I breathe out, it never seems to clear completely.
Lynne x
Hope this helps. blf.org.uk/support-for-you/...
Cxx
Fascinating! Just been reading through and looking at the pictures.
I'm still not sure where the mucus is tho' - the acbt says to get air behind the mucus so that it can be huffed out.....
And it's not "mucus" as I have always thought of it - it's just clear.
Lynne x
I know more about bronchiectasis than I do about PF Lynne. You may find it helpful to speak to one of the nurses at BLF 03000 030 555 who will be much more knowledgeable re pf. There may also be someone with pf who will come along soon.
Love cx
Oh how I can empathize with your problems because I am bothered with night time coughing and only getting a couple of hours sleep at a time. I have emphysema and like you, I use an elevated mattress but I still wake because I have to cough.
I do hope someone has an answer because I am exhausted all the time and now dread going to bed because of it.
It's awful isn't it? dreading going to bed? You just want to lie down and go to sleep. There have been - very odd - occasions when I have slept until 5 am - and how wonderful that is! but despite, examining closely what I have done during the day etc,I can't pinpoint anything which made it happen. Very frustrating! Let's hope someone on here has some ideas?
Hi Lynne,
I understand the problem you have with the cough. I have IPF too and suffered the cough for many years, have tried a few medications to no avail. One thing though my last consultant told me Ventolin is no good for our condition as it is to open the airwaves and we don't have that problem. He said I should ask my GP for a steroids inhaler and if that doesn't help I should request a liquid morphine medication. I have not tried this because I am still waiting for the copy of the letter the consultant sent my GP.
I would advise you to talk to your consultant or at least your specialist nurse, they should be able to help. Hope this information was of some use. Take care.
Margot
Hello Margot
The consultant told me Ventolin was not suitable for me, but when I am in the middle of a bout of coughing I cannot get my breath, Ventolin is a life saver. I become so breathless that I start to panic, and it is only Ventolin which returns me to manageable. I cannot get enough breath to do any deep breathing, but once I have had a burst of Ventolin I get control again. My GP gave me a steroid inhaler yesterday which he says I can use alongside the Ventolin, and I used it yesterday, but still woke at 3 am with a tight and wheezy chest. What do you do Margot about clearing your chest before you go to bed? Do you do the ACBT and huffing? and do it until you have no more wheezing? I do this routine for at least half an hour, perhaps 40 minutes by which time I am exhausted, and usually give up and go to bed. Perhaps I should carry on - what do you do?
Well I suppose Some medication work for some and not others, it didn't help me at all, I take two puffs a day of Spiriva Respimat and GABAPENTIN tablets, I tried to give up the GABAPENTIN but the cough got worse so I had to start it again. I have a fit of cough when I go to bed and I get rid of the phlegm then, it takes me a good 10 to 15 minutes, the cough doesn't wake me up anymore, however I do cough during the day .
Unfortunately we will not be able to get rid of the cough under this condition, if anybody with IPF doesn't suffer it must consider themselves very lucky. By the way, I was diagnosed 6 years ago and apart from not being able to walk for long periods of time without oxygen, I am not doing too bad, considering one consultant told me I had passed my sell by date!
Hope you manage to find respite from the cough somehow. Best regards,
Margot
Interesting Margot..... I was prescribed Gabapentin a few years back for a different problem, but it made my hair fall out! You haven't had that problem? If it reduces the cough and allows me a night's sleep, I am willing to try it again - thank you!
Regards
Lynne
No Lynne, I didn't have that problem, but as I said before, different medication affects people in different ways. I find now that the cough is mostly dry, when I stopped GABAPENTIN I started to secrete a lot of the staff but it's better now, may be if you give it another try it might be different this time.
I hope something will work for you. Best wishes.
Margot
I too was on Gabapentin a few years ago for a different problem but I had to stop it because it was turning me into a zombie. It affected my memory to such an extent I thought I was developing dementia but thankfully, all those problems went away within a short time after stopping.
It goes to prove that " one size does not fit all ".
We had that, hubby would be like he'd had a bucket of water thrown over him n exhausted he now takes 2.5 ml oramorphe in mouth by syringe n 0.5mg lotezepan under tongue disolvable. Not cured but def helped talk to mcmillian nurse they offer sympton management. All the best Sharon xx
Chesty cough worse on one side
Coughing
Coughing up clear balls of mucus every morning 
Recurring Pneumonia from Breast Cancer radiation treatment
