1. < MAC & Bronchiectasis

Do you have increased coughing at night?

Posted by caontm @caontm, Sep 4, 2022

Hi all, I tend to have more (dry) cough at night when I lay down even though during the day I do two 7% saline solution nebulizing and can cough up a lot of yellowish sputum and I think my lung should be clearer at night. Do you have simile experience or can help explain the cause of the night cough? The cough disrupts my sleep and that of my family members. Thanks!

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cate123456 | @cate123456 | Sep 8, 2022

How do you get tested for tracheobronchomalacia?
Thanks

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1 reply
Echo R | @coco1970 | Sep 8, 2022
In reply to @cate123456 "How do you get tested for tracheobronchomalacia? Thanks" + (show)
@cate123456

How do you get tested for tracheobronchomalacia?
Thanks

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I had CT scans at my local hospital and was not diagnosed. I went to NJH in October of 2021 and was diagnosed after a CT scan was read by one of their radiologists. I think because lungs are their specialty they see things that might be missed elsewhere.

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helenrivera | @helenrivera | Sep 9, 2022
In reply to @cate123456 "I started the benzonotate last night and first sleep in 4 -5 nights! Thanks for the..." + (show)
@cate123456

I started the benzonotate last night and first sleep in 4 -5 nights!
Thanks for the recommendation!
My pulmonologist is testing my sputum, X-ray for pneumonia, blood work, etc to see if it’s something besides starting the big 3 causing this coughing. She had me stop the antibiotics til we figure this out.
( I am not on the Ariykace, only the big 3 three days a week)

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Thank you for responding. I take the benzonate since 2018. I don't think it works for me. In the beginning it helped. I stick with it as I heard good things about this med. I take 2 x a day.

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cared | @cared | Sep 12, 2022
In reply to @lindsay83 "My dad has recently been diagnosed with bronchiectasis and MAC. Watching his decline has been a..." + (show)
@lindsay83

My dad has recently been diagnosed with bronchiectasis and MAC. Watching his decline has been a complete nightmare! He is having sinus surgery on Monday and has to heal for eight weeks before starting the big three. He is especially struggling with the night time coughing and interrupted sleep. Essentially, he isn’t sleeping and the fatigue keeps him barely above functioning during the day. When he lays flat, the coughing gets out of control. (may be partially from his acid reflux?) He has been trying to use a wedge, but wakes up off of it. I was wondering if anyone has had any luck with an adjustable bed? We are willing to do whatever it takes to get him better and have improved quality of life. Thanks for your help!

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I have an adjustable bed. I found my coughing does increase at night if I’ll lie flat on my back. We purchased the bed for the purpose of helping my cough. I start out with the bed flat and sitting erect with two pillows behind my back. When I begin to nod off, I will slide down onto my side and raise the head portion a small amount (two pillows would have the same result). Side position helps. By morning I can most always lie on my back. A problem with the adjustable bed is ours lifts the entire bed so my husband must endure the position as well. I learned too late one is made for each side to have a choice of positions. Also, when the head section is raised there is a dip in the center of the bed. Actually when both head and foot are raised together a larger dip in the center occurs. So folks with any back discomfort might find it a problem. After having the bed for over a year, I find it has Not helped my nighttime coughing. Side sleeping has.

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1 reply
sue102 | @sue102 | Sep 13, 2022
In reply to @cared "I have an adjustable bed. I found my coughing does increase at night if I’ll lie..." + (show)
@cared

I have an adjustable bed. I found my coughing does increase at night if I’ll lie flat on my back. We purchased the bed for the purpose of helping my cough. I start out with the bed flat and sitting erect with two pillows behind my back. When I begin to nod off, I will slide down onto my side and raise the head portion a small amount (two pillows would have the same result). Side position helps. By morning I can most always lie on my back. A problem with the adjustable bed is ours lifts the entire bed so my husband must endure the position as well. I learned too late one is made for each side to have a choice of positions. Also, when the head section is raised there is a dip in the center of the bed. Actually when both head and foot are raised together a larger dip in the center occurs. So folks with any back discomfort might find it a problem. After having the bed for over a year, I find it has Not helped my nighttime coughing. Side sleeping has.

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It is possible you are not elevating the head of the bed enough. Dr. Huitte at NJH wanted me to sleep at 30-45 degrees because of GERD. Studies have shown that gastric aspiration can happen up to 30 degrees, which happens to me. Therefore, I sleep at >40 degrees. Initially, I was not able to visually gage the angles, so I ordered an inclinometer from Amazon and surprised myself with how wrong I was at my estimates. A 30 degree angle is pretty high. It wasn’t easy to get used to the inclination. It took me 2 years and still not comfortable. My husband, with GERD but not NTM, was unable to sleep inclined. Because the bed is a split king, we have the freedom to select our positions.
If you choose to sleep on your side, make that the left and not the right. There is a lot more aspiration on the right because of the shape of the stomach.

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2 replies
cared | @cared | Sep 13, 2022
In reply to @sue102 "It is possible you are not elevating the head of the bed enough. Dr. Huitte at..." + (show)
@sue102

It is possible you are not elevating the head of the bed enough. Dr. Huitte at NJH wanted me to sleep at 30-45 degrees because of GERD. Studies have shown that gastric aspiration can happen up to 30 degrees, which happens to me. Therefore, I sleep at >40 degrees. Initially, I was not able to visually gage the angles, so I ordered an inclinometer from Amazon and surprised myself with how wrong I was at my estimates. A 30 degree angle is pretty high. It wasn’t easy to get used to the inclination. It took me 2 years and still not comfortable. My husband, with GERD but not NTM, was unable to sleep inclined. Because the bed is a split king, we have the freedom to select our positions.
If you choose to sleep on your side, make that the left and not the right. There is a lot more aspiration on the right because of the shape of the stomach.

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Thank you for all the information. I will try your suggestions.

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nora49 | @nora49 | Sep 14, 2022
In reply to @sue102 "It is possible you are not elevating the head of the bed enough. Dr. Huitte at..." + (show)
@sue102

It is possible you are not elevating the head of the bed enough. Dr. Huitte at NJH wanted me to sleep at 30-45 degrees because of GERD. Studies have shown that gastric aspiration can happen up to 30 degrees, which happens to me. Therefore, I sleep at >40 degrees. Initially, I was not able to visually gage the angles, so I ordered an inclinometer from Amazon and surprised myself with how wrong I was at my estimates. A 30 degree angle is pretty high. It wasn’t easy to get used to the inclination. It took me 2 years and still not comfortable. My husband, with GERD but not NTM, was unable to sleep inclined. Because the bed is a split king, we have the freedom to select our positions.
If you choose to sleep on your side, make that the left and not the right. There is a lot more aspiration on the right because of the shape of the stomach.

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Do be careful about sleeping on one side only. That's how I ended up with a frozen shoulder!

REPLY
rickden | @rickden | Sep 18, 2022
In reply to @lindsay83 "My dad has recently been diagnosed with bronchiectasis and MAC. Watching his decline has been a..." + (show)
@lindsay83

My dad has recently been diagnosed with bronchiectasis and MAC. Watching his decline has been a complete nightmare! He is having sinus surgery on Monday and has to heal for eight weeks before starting the big three. He is especially struggling with the night time coughing and interrupted sleep. Essentially, he isn’t sleeping and the fatigue keeps him barely above functioning during the day. When he lays flat, the coughing gets out of control. (may be partially from his acid reflux?) He has been trying to use a wedge, but wakes up off of it. I was wondering if anyone has had any luck with an adjustable bed? We are willing to do whatever it takes to get him better and have improved quality of life. Thanks for your help!

Jump to this post

I had sinus surgery also then invested in a adjustable bed. It has helped a lot with being able to sleep. Hope he gets some relief

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lweirdo1 | @lweirdo1 | Sep 18, 2022

So all of my coughing now happens in the morning after breakfast. Tons of yellow mucus over the past month and takes me a few hours to get it all out. I'm not sure if it's because I'm now doing both 7% Saline and Arikayce. Do any of you have this same experience?! It's crazy & MAC is really ruining my life!

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1 reply
lweirdo1 | @lweirdo1 | Sep 20, 2022
In reply to @macentee22 "My Pulmo RXd benzonotate, a capsule which is supposed to suppress the cough at pm. It’s..." + (show)
@macentee22

My Pulmo RXd benzonotate, a capsule which is supposed to suppress the cough at pm. It’s not covered by my insurance, but it’s not expensive, about $35/month. I like this better than a cough syrup. But I don’t tend to cough at pm which was the plan so I could get a good nights rest. Please see what your pulmonologist says. I’m at the beginning stage of treatment for my Mac-Nt.

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Best Med for MAC relief!

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