coughing when or after laying down

[Kristina1]

Is this a thing? I used the search feature and found a number of posts confirming that a cough can be an issue for those with bulbar problems. But I didn't see anything specific to reclining or sleeping.

I'm pretty sure I'm not sick with a virus or anything, but am sleeping poorly because I wake up coughing in the middle of the night. I also cough when I get up from a short nap. It's a dry cough.

I do elevate with 3 pillows when sleeping to help reduce the cough and it helps, but the cough still comes.

 

[lgelb]

That is not uncommon if some part of the passageways where the air flows are going into spasm or collapsing during sleep, when muscles relax, and/or if the air you are breathing is too dry or dirty.

I'd check your heat settings, replace your furnace filter if needed, consider a humidifier and work on getting a hospital bed, because 3 pillows is no substitute for elevating your back as well as your head/neck. You can also find things to do before bed, like a spray, cough lozenge, and of course staying hydrated during your waking hours.

 

[Kristina1]

Thank you. Our filters are changed twice per year so air quality is good, but our heat is set pretty high and it is definitely dry. I will try humidifier. I sucked on a cough drop at 2am last night and it did finally settle the cough down, but I was afraid to sleep with it in my mouth because I aspirate a lot and I didn't want to choke on it in my sleep so I kept myself awake while using it.

Do insurance companies cover a hospital bed? ( commercial link removed)
I have also had episodes of shortness of breath waking me at night when I am laying too flat, which is the other reason I'm using a lot of pillows. But it is definitely not ideal right now in terms of I can't position myself well and wake up with back and neck pain. So I was thinking of a wedge or the product above.

 

[ehd42]

In addition to Laure’s thoughts, the onset of a persistent night cough that awakens you could also be a sign of acid reflux (G-E reflux), postnasal drip, or a reactive airway as might occur with nocturnal asthma. Your family doctor should be able to explore these possibilities with or without the help of a specialist, and each of these entities is usually responsive to therapy.

Best wishes

Eliot

 

[Kristina1]

In addition to Laure’s thoughts, the onset of a persistent night cough that awakens you could also be a sign of acid reflux (G-E reflux), postnasal drip, or a reactive airway as might occur with nocturnal asthma. Your family doctor should be able to explore these possibilities with or without the help of a specialist, and each of these entities is usually responsive to therapy.

Best wishes

Eliot

Thanks, I'm pretty sure I don't have any of those things except postnasal drip. I'm a healthy 31 year old with no relevant medical history or environmental risks for asthma or reflux. I do feel I have had increased postnasal drip for the past year, but I am convinced it is related to ALS in my case. The postnasal drip started at the same time as I first began having voice & speech changes. At the time ALS was not on my radar at all and I began seeing an ENT. He acknowledged some mild postnasal drip but numerous scopes, and a CAT scan showed no medical problem, and 2 courses of antibiotics and steroids did not change anything. Knowing what I know now I think I must just not be effectively swallowing and using the muscles up there to clear secretions the way a normal person can. This is my non-expert opinion and maybe I'm wrong, but it's how it seems to me.

 

[ehd42]

If you are correct, an ALS clinic’s speech pathologist can send you for a modified barium swallow to determine whether swallowing dysfunction is causing your nocturnal symptoms. If no swallowing dysfunction is not found I would then suggest ruling out nocturnal asthma or cough variant asthma. Although you have no history of asthma that does not rule out the presence of nocturnal asthma, especially if you have a nocturnal cough and shortness of breath when lying down in bed. A short therapeutic trial on an asthma inhaler, provided that you have no contraindications, could help point to the presence of underline airway irritability. If your cough responds to such a trial, you should consider follow-up with the pulmonologist or allergist specializing in asthma. Pulmonary studies could confirm such a diagnosis.

Eliot

 

[affected]

Kristina I can tell you my Chris was the same. He had a post nasal drip and even a mild sinusitis showed on CT scan when his bulbar symptoms started. It seems it was linked to the weakening of sinus and palate structures.

I agree that you need to think about a hospital bed early so that you support your diaphragm. Have you had breathing tests done sitting and laying down? I would suggest this may be the next thing to check as keeping your breathing supported will really give you so much better quality of life (eg no waking at night coughing!) and strain your diaphragm and other breathing muscles less.

Please let us know!

 

[Kristina1]

Thank you Tillie, from what you've written about Chris's bulbar symptoms on past questions I have posted his initial experience really does seem quite similar to mine. I really appreciate your input.

I had the breathing test last week. The woman who did the test would not give me numbers (basically said I had to go over it with pulmonologist at my upcoming clinic visit). She did say that my numbers for the sitting up part were "pretty good," but that for the lying down one it was not as good. But she was very vague. I see the pulmonologist at the ALS clinic this Friday and he is supposed to go over the results with me then.

 

[tripete]

I used cough and choke if not on my Bipap when lying down, now i cant breath at all. This could be a sign of respiratory failure. Speak with your nurse/doc about BiPap if you haven't. I tell everyone make sure they do your FVC with you lying down.

 

[KimT]

Thank you Tillie, from what you've written about Chris's bulbar symptoms on past questions I have posted his initial experience really does seem quite similar to mine. I really appreciate your input.

I had the breathing test last week. The woman who did the test would not give me numbers (basically said I had to go over it with pulmonologist at my upcoming clinic visit). She did say that my numbers for the sitting up part were "pretty good," but that for the lying down one it was not as good. But she was very vague. I see the pulmonologist at the ALS clinic this Friday and he is supposed to go over the results with me then.

Tell them to be more specific. If you are having trouble, it appears you need a BiPap now. When you get one, make sure the humidifier is set high enough. I went to an ENT early on and they found my right vocal chord was "mildly paralyzed" but I had no difficulty swallowing. The ENT did a very thorough exam which included a barium swallow test and a visit with a speech pathologist. She said I had pretty bad acid reflux even though I was on a protein pump inhibitor.

We have ALS but we may have other things that can be treated. My voice was bad in the very beginning and I think it was the stress of going through all the tests and retests. I was hoarse and choked a few times. Lately it has come back and I'm not sure if it's the disease or acid reflux or even something else.

 

[KateEmerson]

Kristina,
You may want to bring up getting a hospital bed at your clinic visit on Friday. They usually know what insurance covers and how to word the order to get it . I find our clinic is my go to when we need equipment. Hope it goes well for you, Kate

 

[affected]

It does sound like both hospital bed and bipap are going to make such a difference for you. I'm sorry it's such a process and they make us feel like we are a nuisance sometimes - like how rude that we want to ask questions and have things explained! They must truly, somehow, forget that this isn't about them and their job and their data, it's about OUR LIVES.

 

[lgelb]

Yes, you should always keep track of your own respiratory function and other tests. An RT should provide a printout during the clinic visit -- it's your results. I should have said up front that the leading "go do" might be a BiPAP pending your results -- the other tactics are more symptom-related but can still help over the long haul.

And Eliot also makes a fair point that reflux relative to acid and/or saliva can be involved, to the extent that even if you have never felt it before, when passageways that are normally "closed" stay open or alternate open/shut, symptoms may appear for the first time.

Best,
Laurie

 

[Kristina1]

Ok, thanks all, you've given me a lot of ideas and things to consider!

 

[swalker]

I also choke and cough lightly when I sleep. I can't cough well, so it is not much of a cough. But it is annoying.

I had no symptoms of gerd, but an endoscopy showed signs of it. I was prescribed Prilosec to help it. It makes a significant difference for me.

I also make sure I stay up for 3 or 4 hours after I eat. That makes a big difference for me.

When it is bad, I sleep in my recliner or wheelchair.

When it is not bad, I try to sleep on my side (sleeping on my back is most comfortable for my joints, but sleeping on my side helps with breathing and that cough).

Steve