Bedtime Blues

Posted by ckscoville @ckscoville, Aug 27 10:25am

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.

@ckscoville When my MAC was at its worst in 2018, I had that experience. It helped to lie down about 2 hours before bedtime & get the whole coughing fit started, sit up & cough, then it was largely done. It also helped for the first few months of treatment to sleep on a wedge so I was never flat (or in my recliner if I was shaking the bed.)
Sue

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I agree with Sue. Lying down is my drainage mechanism and I need to get it done before bedtime .I sleep in an upright position which cuts down on acid reflux and reduces the wheezing noises. You may need to look over your schedule and adjust the timing. 8 hours apart? Catch some sleep just after purging the mucous Sleep 2-3 hours 3x a day may be the best you can hope for .Are you still trying to work and fight the disease at the same time? Rethink everything. Please know the support group is with you . It is exhausting to cough so much . Many of us have overcome the infections, so don't get discouraged.

Liked by judyhodgern

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ck your post reminds me of the initial appearance of what I would later learn is bronchiecstasis. It was 2010 when I began to have spontaneous coughing spells with mucous production. I was soon carrying a roll of toilet tissue in the car to deal with the episodes. Also, like you, I could predictably trigger an episode by reclining. Also like you I remember the area around my ribs becoming sore from excessive, chest-racking coughing. Oddly, and something that's always puzzled me, I never was never embarrassed at work by an episode. It's as if I had some ability to control the onset of episodes when doing so was crucial, and which operated below conscious awareness. Gradually the intensity and frequency of the episodes diminished I idled along for a period of time the length of which I can't remember. Eventually, through an odd process, I was diagnosed by my primary care doc. (that's another story).
I bet your suspicion that change in posture is involved is right. If it's feasible you'll probably be well-served by Sue's suggestion.

When an episode is unavoidable how about "re-framing" the experience to wit: Since getting mucous "up and out" is an unalloyed good thing it occurs to me that an old adage that was a fave of my Dad's might be pertinent: "you can't make a silk purse out of a sow's ear." Well if we simply define coughing fits as the sow's ear and expelling mucous as the silk purse. you've found a way to do it. Congratulations! And just think, if you didn't have this ailment you wouldn't be having all this fun on the Mayo forum. Don

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@ckscoville I was diagnosed in 2016 with bronchiectasis and MAC. Fast forward to February of 2018 and I got the bad flu and a horrible cough with it that is still with me two and half years later. I consider it my second cough because with bronchiectasis you have another cough to get the stuff up. With that being said I ALWAYS cough when I lie down (which I consider as postural drainage and I feel lucky that I can get it all up that way without any vest or other machines). But it's very frustrating when I just lie back on the couch or on the bed to relax or read a magazine because invariably I start coughing. So I try to get everything coughed up early in the evening and then I find when I go to bed if I lie on my LEFT side for some reason I don't cough as much. And I keep Ricola sugar free cough drops by my bed and that stifles the cough a little. It's very frustrating and I'm right there with you. And also I sleep on a wedge now (because of acid reflux). So maybe try the right or left side and see if that helps but try and get rid of everything in your lungs before you go bed? It's maddening to me. Nan

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Thanks so much to you and the others who’ve responded. This evening, I did try to lean back in a recliner a while before bedtime and that triggered at least half an hour of hard “productive” coughing. Here’s hoping that bedtime is more peaceful as a result. Will try sleeping on my left side as well.

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@ckscoville

Thanks so much to you and the others who’ve responded. This evening, I did try to lean back in a recliner a while before bedtime and that triggered at least half an hour of hard “productive” coughing. Here’s hoping that bedtime is more peaceful as a result. Will try sleeping on my left side as well.

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Eager to hear the result CK. Don

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Update … Bedtime was only slightly less accompanied by a productive coughing fit (maybe 25-30 minutes of it), despite the sesion I went through only 90 minutes before bedtime. Sleeping on my left side may have improved my sleep a bit, though.

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A work in progress.

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@ckscoville

Update … Bedtime was only slightly less accompanied by a productive coughing fit (maybe 25-30 minutes of it), despite the sesion I went through only 90 minutes before bedtime. Sleeping on my left side may have improved my sleep a bit, though.

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@ckscoville Hang in there and keep experimenting! Something will finally "click"
Sue

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I have a prescription for a codeine cough med. Like you, I never lie down without coughing; on nights when it won't stop I take a swig. Just having it often gets me through. I only take it when I've reached my level of endurance. I sleep on my left side as it seems to be the best position for drainage. I've had this miserable (fill in with your own swear words) disease for over ten years. I'm still here, still longing for a peaceful going to bed. I also get out of bed and bend over from the waist and often a big mess will come up. Best of luck. Flib

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@flib

I have a prescription for a codeine cough med. Like you, I never lie down without coughing; on nights when it won't stop I take a swig. Just having it often gets me through. I only take it when I've reached my level of endurance. I sleep on my left side as it seems to be the best position for drainage. I've had this miserable (fill in with your own swear words) disease for over ten years. I'm still here, still longing for a peaceful going to bed. I also get out of bed and bend over from the waist and often a big mess will come up. Best of luck. Flib

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@flib I'm right there with you, Flib. I have a bottle of cough syrup with codeine….I also cough when I lie down…ALL THE TIME…so when I can't take it anymore I'll take that cough syrup. It helps to keep your sanity. I know we can't take it all the time but it sure is nice to have it when you're having a bad coughing night. Nan

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