descreased respiratory rate and increased vocalizations when sleeping

[gooseberry]

Has anyone experienced this with their pals? Steve's resp. Rate was running 25-28 while he was sleeping. Now it is 13-15 and he is making a lot of vocalizations. He is not awake and unaware he is doing this sound thing. Any ideas? There are no new meds, same equipment, etc. Thanks for the help!

 

[ALS caregiver]

My daughter has als. Not sure what her respirations are but I know she is progressing. She too makes more sounds and noises when asleep. Always having to check if shes wanting something or just making noise.

 

[Barbie]

sometimes my husband moans for no reason. he is in no pain, and sometimes he is awake when he does it. he says "it feels good" IDK!

I do know that when he has a coughing fit and his breathing is more compromised he moans a lot.

My husband's RR runs from 18-25, I don't have a clue what that means. sorry I am not more help

 

[affected]

Towards the end for Chris, respiration involved the vocal chords. It seemed to me that extra effort to breath by using ancillary muscles, once he had to really used his shoulders to breath (even though he could not move his arms), it was like a hmmm noise with each breath. Well I just couldn't find the right letter of the alphabet in text to describe the noise. It wasn't actually a moan, but that would be the closest word. He was not in pain, it was just voice box involvement.

By this stage his breaths were very shallow.

Now I have talked to other carers online who have said their PALS have done this for days or even weeks then kind of rallied again and it stops.

So it doesn't mean the end necessarily. It does mean that they are finding respiration more difficult from a muscle point of view and their throat in general is less under their control.

hugs

 

[zoohouse]

My husband does this quite often. He is can no longer take a breath on his own, and had central sleep apnea before he was even diagnosed which is that he would forget to take a breath when he was sleeping. His respiratory rate would often drop to 4 a minute, and mine went up. His bipap is set to deliver 14 breaths a min. which is what he feels is comfortable for him. Many people's respiratory rate drop to 8-10/min. normally with no problems at all, that is why we set apnea alarms to 8/min in the hospital.
As far as the vocalizations I am not sure, but I do know that it is worse when he is really tired. Some nights it is multiple syllables but are not words. Of course I ask him is he is OK because it is not always easy to understand him when his mask is on, but he is usually sound asleep and does not respond. I have tried adjusting the pressures on exhalation but have not found that it helps that much, and it can be uncomfortable for him if it is too high. My heart goes out to you, as I know that is can be exhausting for us as we sleep always listening for a request.

Paulette

 

[lgelb]

Actually, I would decrease the EPAP if it's not at minimum and sounds are interfering w/ your own sleep (obstructions can drop out late in the disease), and/or inch up the IPAP. Vocalization signifies effort or arousal, one way or the other, so...

I would also try increasing the cycling sensitivity, your machine permitting, for a faster transition to EPAP.
And possibly increase trigger sensitivity (transition back into next IPAP).
Last but not least, you might try decreasing the minimum Ti.
Of course, I would try these things one at a time.

Changes in respiratory rate are not necessarily significant, as breathing adjusts and re-adjusts to changes in muscle tone/strength. 25-28 is a lot of work so in some ways 13-15 is an improvement. But now that the rate is different, changing the size/duration of breaths may be helpful as well.

 

[gooseberry]

At his last pulmo appt with spirometry his mip and mep were 25%.ish. He has his next appointment next week. His o2 sats are normal for him. Last night ,periodically, he sounded very rattley in his breathing. Extra cough assist today.....Laurie I will start with the changes you suggest tonight. Thank you!

 

[HeatherFeather]

Has anyone experienced this with their pals? Steve's resp. Rate was running 25-28 while he was sleeping. Now it is 13-15 and he is making a lot of vocalizations. He is not awake and unaware he is doing this sound thing. Any ideas? There are no new meds, same equipment, etc. Thanks for the help!

Funny, Ron's been doing the same thing (or similar) lately. He moans with the Bipap on at night and I asked him one time why he was moaning and he said it helps him sleep ?

 

[gooseberry]

It is a strange noise. It doesn't sound painful or like a word. Steve still has speech. It is just a lot of noise that keeps me up watching him sleep and checking his trilogy.

 

[4tloml]

Like Paulette's husband, mine also had central sleep apnea for a year before ALS diagnosis. But he only recently started making a lot of noise--sleep or awake. It seems like his is more of a moan or grunt, and I think it may be due to spasms in his diaphragm. We frequently ask him what he said, and he tells us he didn't say anything. I'm not sure he's even aware of these vocalizations.

I'm wondering if he's having spasms in his diaphragm forcing air past his vocal chords and up his throat where he also has spasms. He's also had a lot of coughing lately (getting over a cold) and these vocalizations always follow a coughing spell for awhile--like the coughing sets off continued muscle spasms he just can't control. Does this seem possible? Does that describe others' experience?

 

[MaxEidswick]

>He's also had a lot of coughing lately (getting over a cold)

:-(

 

[gooseberry]

Steve has had a lot of coughing too. He is eating much more slowly.

 

[Barbie]

a hum is a good description of the noise. and yes, it happens especially after a lot of coughing.

 

[MaxEidswick]

>a hum is a good description of the noise. and yes, it happens especially after a lot of coughing.

me 2 ....

 

[gooseberry]

I am thinking Steve is losing his swallowing muscles. He choked on cereal today and on corn. Had a hard time stopping the spasms once they got going.. He was pretty scared.