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Bedtime Blues
I'm posting this in hopes that somebody might have had the same experience ...and hopefully found a solution.
I currently do three breathing treatments a day -- with a nebulizer and a SmartVest concurrently -- and I'm on a rotation of antibiotics (Augmentin, Doxycycline, and Bactrim) for a very stubborn Achromobacter infection. During a typical day, I cough up a lot of sputum (usually light to dark green and sticky), especially in late morning.
However, when I finally go to bed at night, I go through a really horrible 30-45 minutes of coughing up stuff almost non-stop. I usually end up coughing up so much that my chest hurts like crazy at the end of it, and leaves me totally exhausted as well. It's gotten to the point that the thought of going to bed depresses me because I know what's in store for me. It's also not unusual for me to wake up in the middle of the night to cough up more stuff.
I don't know if the change in posture (lying down) is what triggers these really bad coughing fits, but I'm desperate for a solution.
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Did you need your Dr to prescribe the VibraLung? Do you have a link to the NIH tests mentioned by any chance? Do you use this instead of an Aerobika (I would assume so) and use it after saline nebulizing? Can it be cleaned/sterilized? Sorry for all the questions. Wonder why we have not heard of this before.
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1 ReactionBonnie that is wonderful , but 6000$ is so much money!!! I am so glad for you. I bought an incline pillow, and it works real well. With a regular pillow on top it’s even better. @irene5 .
$600 for the bed frame not $6000! Lol
Well that sounds a whole lot better!! I mean Ed Mcmann is dead! I can’t wait for him to show up with megabucks for me!!
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1 ReactionUpdate to my original post:
When I was ultimately diagnosed with cystic fibrosis and put on Trikafta, EVERYTHING improved! No more bedtime blues, much less coughing and sputum! It's made a big difference in my daily life. Not happy with the diagnosis, but with it came a treatment that's worked.
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8 ReactionsI am so sorry you are having such trouble. The only thing I can say in an attempt to help, is to elevate the head of the bed or, if you can, get an adjustable bed. I always cough when I lower my adjustable bed a little, after having it raised fairly high so that I can read before going to sleep. I also used to have a lot of trouble lying back at the dentist’s chair or doctor’s exam table. They would have to wait for me to stop coughing. I’m better with that these days, but still cough some at night after lowering the bed. (I still have the head higher than the foot of the bed.) You can put blocks or other hard items under the posts of your headboard. Good luck! I’m sorry you dread going to bed at night, but I understand that!
Ok, so I am not alone. My pulmo ripped my codeine contract ( obtained through my GP exactly to control night time coughing which no one could diagnose) out of my hands the minute she got hold of a chest CT from 3 years ago and decided I have BE. I do understand that I should be happy to get the stuff out of my lungs, but I do that all day anyway! At this point I nebulize a 3% saline, huff cough and wind up drained, exhausted and teary and oh so pathetic. I do it dailym, sometimes twice when tight & can't cough up what I know is trying to choke me. Bedtime is a misery, I sleep on an incline, but even if I neb at bedtime I am awake every hour spitting into hankies between cough drops. UNLESS I go against all recommendations and sneak a few Canadian 222's with 8mg codeine. Just started on 250 mg Azithromycin 3X a week...but no promises that I will affect the Continual cough. Ideas?
@rebecross so sorry about your sleep issues. We've all been there as witnessed by this thread. Asthma might cause some coughing as does incomplete lung clearance. Since I've been clearing 2x day with nebbed albuterol (or puffs of albuterol) followed by 7% saline it's helped with the nighttime coughing. It's work and unrelenting this routine is but I remind myself that I am helping my lungs by clearing them as completely as possible each session since my lungs cannot do this on their own anymore.
Have you tried AD app for clearance? It's my RT coach that I use in multiple positions -- upright, on left then right side followed by flat on my back. This shifting really helps get the gunk out. It's around a 45 minute process, which includes nebbing time with aerobika connected to a nebulizer which is connected to a compressor. It took some time to figure out the routine that works for me, so hang in there until you figure out yours!
Swap the codeine for long acting 12 hour mucinex. Take it before nebbing at night. It helps to thin the gunk so you can cough it out more easily.
Thanks for your reply, Scoop! I do shift around in rotation as you describe, but don't know about the AD App. I looked and could not locate the version for Android, so I went ahead and ordered the book.
I think I neb the same way you do, but with 3%, and wonder if I should ask about going to 7%.
Mucinex has never seemed to do much for me, if usually comes out ok, it just the constant cough to do it that wears me out. I will try to be patient and appreciate you taking the time to write!
ALSO -- most definitely ask for sputum culture. Best to produce a culture while not on azithro. Maybe lay off of it for a few days. The culture results are necessary to determine which drugs the bug is susceptible to.
I've read that AD app is available in app store on android unless you're on a sprint plan. Hope I have that right. In the meantime, here's an another site dedicated to bronchiectasis along with lung clearance and how to videos!
https://bronchiectasis.com.au/physiotherapy