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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Melissa Nelson | @melissa08 | Sep 7, 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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We have an adjustable bed and mattress arriving today for my husband Bruce. He has used an inflatable wedge for the past two years which now leaks. It worked well so we committed to the bed.
The nightly elevation helps to reduce his coughing although he is still pretty tired during the day.
Hope you can get your Dad some relief.
Melissa

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1 reply
lindsay83 | @lindsay83 | Sep 7, 2022
In reply to @melissa08 "We have an adjustable bed and mattress arriving today for my husband Bruce. He has used..." + (show)
@melissa08

We have an adjustable bed and mattress arriving today for my husband Bruce. He has used an inflatable wedge for the past two years which now leaks. It worked well so we committed to the bed.
The nightly elevation helps to reduce his coughing although he is still pretty tired during the day.
Hope you can get your Dad some relief.
Melissa

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Thank you! I hope Bruce loves the new bed!

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helenrivera | @helenrivera | Sep 7, 2022

I use the bed a big help. Since October 2021 and its works for me.

@cate123456 I have chronic cough since 2015 and it was under control unto I started the big 3 and Ariykace. Prior I was on steroids and weaning off....when I started the big 3 my cough returned with a vengeance and I cough mainly at night or when I try to do to much and can be very embarrassing and my poor hubby is not sleeping well. Not sure if my post helps...

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1 reply
cate123456 | @cate123456 | Sep 7, 2022
In reply to @helenrivera "I use the bed a big help. Since October 2021 and its works for me. @cate123456..." + (show)
@helenrivera

I use the bed a big help. Since October 2021 and its works for me.

@cate123456 I have chronic cough since 2015 and it was under control unto I started the big 3 and Ariykace. Prior I was on steroids and weaning off....when I started the big 3 my cough returned with a vengeance and I cough mainly at night or when I try to do to much and can be very embarrassing and my poor hubby is not sleeping well. Not sure if my post helps...

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Thank you — I wonder why the drugs create this violent coughing? Maybe they are stirring up things in the lungs???

Is it safe to take a cough suppressant like Robitussin?

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2 replies
helenrivera | @helenrivera | Sep 7, 2022
In reply to @cate123456 "Thank you — I wonder why the drugs create this violent coughing? Maybe they are stirring..." + (show)
@cate123456

Thank you — I wonder why the drugs create this violent coughing? Maybe they are stirring up things in the lungs???

Is it safe to take a cough suppressant like Robitussin?

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Not sure why, but yes I feel its due to the meds. As for the cough drops I have been using Riccola, original for years and the only ones that helped me somewhat to allow us to get some sleep late night or early morning. This page has been a godsend as I knew nothing of the questions to ask and am one of the unlucky ones to have severe (my opinion) side effects. Good Luck and sending blessings to each of us...

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 7, 2022
In reply to @cate123456 "Thank you — I wonder why the drugs create this violent coughing? Maybe they are stirring..." + (show)
@cate123456

Thank you — I wonder why the drugs create this violent coughing? Maybe they are stirring up things in the lungs???

Is it safe to take a cough suppressant like Robitussin?

Jump to this post

Good morning Helen, I did a little research, and it appears that the Arikayce may be the culprit, as cough and bronchospasm are both listed as common side effects. That is what I suspected, because many of the people here asking about cough while on antibiotics were also taking it.

I wonder what your doc has to say? Arikayce used to be the "big gun" for treatment resistant NTM, now it seems more like part of the treatment standard. Maybe if you are now getting negative cultures, you could ask to discontinue it?

Or, for those of you who are on your first-ever round of treatment could ask if it could be suspended until you see if the Big 3 alone are sufficient? I totally understand docs wanting to give you the best possible chance of success against this nasty infection, but maybe the 3 antibiotics plus 7% saline and good airway clearance would be a less difficult first effort?

Just my observation as one who suffered through the Big 3, but is now doing OK.
Sue

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1 reply
Echo R | @coco1970 | Sep 8, 2022
In reply to @hcroom "My coughing increased at night for years before my pulmonologist found that I have tracheobronchomalacia. This..." + (show)
@hcroom

My coughing increased at night for years before my pulmonologist found that I have tracheobronchomalacia. This is a condition in which the trachea and bronchi collapse upon exhalation. When I started sleeping with a CPAP machine the coughing diminished drastically. Interestingly Medicare doesn't pay for CPAP for this condition, but the relief is well worth the cost. The condition is detected with at CT chest scan taken while holding an exhalation; many pulmonologists miss the diagnosis.

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Hi, @hcroom -
I was also diagnosed with tracheobronchomalacia in 2021 at NJH. Do you notice that you have flares of symptoms?
I believe I had a terrifying flare at the end of 2020 that resulted in an ER visit because I felt like I was suffocating. This was before my diagnosis and I can't really remember what I did that finally made it calm down. Possibly a prescription for hydroxyzine that I think was given to me to calm me but after reading I think it was possibly the antihistamine element of it that settled my symptoms.
I am in the middle of another flare and am sleeping straight up as it feels like the only way I can get any air through my trachea.
If you have been dealing with this for some time I would love any helpful suggestions. I tried a CPAP in 2020 and ended up taking it back before I completed the required number of days of use needed for a permanent prescription.
Hope you are doing well 🙂
-Echo

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helenrivera | @helenrivera | Sep 8, 2022
In reply to @sueinmn "Good morning Helen, I did a little research, and it appears that the Arikayce may be..." + (show)
@sueinmn

Good morning Helen, I did a little research, and it appears that the Arikayce may be the culprit, as cough and bronchospasm are both listed as common side effects. That is what I suspected, because many of the people here asking about cough while on antibiotics were also taking it.

I wonder what your doc has to say? Arikayce used to be the "big gun" for treatment resistant NTM, now it seems more like part of the treatment standard. Maybe if you are now getting negative cultures, you could ask to discontinue it?

Or, for those of you who are on your first-ever round of treatment could ask if it could be suspended until you see if the Big 3 alone are sufficient? I totally understand docs wanting to give you the best possible chance of success against this nasty infection, but maybe the 3 antibiotics plus 7% saline and good airway clearance would be a less difficult first effort?

Just my observation as one who suffered through the Big 3, but is now doing OK.
Sue

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Hi Sue and thank you for replying. My apologies for my delayed response. I do believe your correct as the Ariykace may have reactivated my cough which seemed to be under control prior to starting this med. I was started on the Big 3 on 6/22/22 and they did not increase my cough. The Ariykace started on 7/1/22 and since have coughed and become worse. I am going to request a CT scan at next visit which I believe in October. I am not sure if I get off the Ariykace now or wait for the 2nd culture and results from the CT scan? I will continue the Big 3 along with the 7% saline, Albuterol & aerobika clearance. I am also taking 5mg of steroids I have slowly weaned from 60mg at my insistence which is another concern as this was the only med that somewhat had my cough under control. Thank you Sue and hope you know your response and understanding along with your expertise is very helpful and appreciated.
I found this site when I had no real idea of what I would be up against and prior to starting the meds. Due to reading the posts I no longer feel quite alone and feel more prepared to ask questions and not be so afraid. Wish me luck and God Bless each of us. Stay well.

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jamieh | @jamieh | Sep 8, 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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I find the benzonotate to be mildly helpful with night coughing. I don’t know why some nights are so much worse then others with waking up coughing up junk.

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cate123456 | @cate123456 | Sep 8, 2022

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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