Shortness of Breath

[CoachMeg]

hi all. just trying to get a handle on our symptoms as they currently stand. Hospice comes out twice a week now. I have noticed though that my husband is experiencing more episodes of shortness of breath. It used to just be after he ate. Now it is more frequent throughout the day. He does have a bipap that he uses at night. I have been trying to get him to use it during the day too.

So, I have a question. Is the increasing SOB because his diaphragm and breathing muscles are continuing to become paralyzed? Or, is there some other cause?

My gut says it is disease progression. But my heart wonders if there is something else that can be done.
I appreciate the feedback.
Love and light
Meg

 

[Toto's Dorothy]

Meg,

I don't have the breathing issues as of yet, so I can't really help you there. Have you contacted his doc tor or talked to the hos pice nurse? Does he seem more anxious before they start? I know some pals on hospice have the kit, and many have mentioned a small dose to take the edge off.

I received your message last night and wanted you to know, you're all in my prayers. I'm so sorry he's progressing.

Warm embrace,

 

[cervus]

Meg. It could be something else but it also could be disease progression. If he is experiencing air hunger, he might want to start on VERY low doses of morphine to ease his breathing. Once Bob started feeling like this he was prescribed 1-2 mg of morphine every two to three hours. It provided great relief. Yasmin.

 

[Danijela]

Sadly, it is more than likely the progression. Diaphraghm, abdominal and intercostal muscles being affected. Encourage to use Bipap when needed during the day. I/we stay clear of morphine as it suppresses breathing and my partner would only use it as the final measure at the end of life care. D

 

[cervus]

I agree, Danijela. Morphine in much larger doses does suppress breathing. 1-2 mg every couple or more hours provided Bob with so much more ease in breathing. We held off too but discovered a new-found respect for morphine. Even in the end, it was used minimally, more to ease his full body spasms. Bob used the BiPap at night and during his pm nap everyday.

 

[brooksea]

Meg, it does sound as if those muscles have been affected. He really needs to use the BiPap, like you said, during the day, too.

I'm sorry I can't be of more help.

 

[Grateful]

I think you need to recognise that the extent to which opiates depress breathing varies greatly from person to person, and that there are a number of things which depress breathing more than opiates.

Uncontrolled chest pain is the obvious example; I have severe lung disease and take opiates regularly since otherwise I am unable to breathe well, which in turn puts me into hospital very quickly with pneumonia. I have spent decades listening to consultants explaining this to junior doctors on ward rounds so you might as well have the benefit of all that expensive education...

 

[CoachMeg]

Thank you all for responding. I think I knew it was progression, just hoping I was wrong. I will continue to encourage him to use the bipap during the day. We do have the morphine and ativan on hand when he decides he wants it. He is reluctant to use the drugs too. As much as I want him to be comfortable, I know I have to respect his wishes. Talk about being stuck between a rock and a hard place. Just another day on our ALS journey.
love and light
Meg

 

[momap53]

Meg, if you can persuade him to, have him relax with the Bipap for a half hour before eating. Read the article on "breath stacking". These things really do help.

 

[hjlindley]

I would have his potassium checked just in case. We tend to blame everything on this demon, but soemtimes it isn't. Off potassium values cen cause the same thing.

 

[notme]

HI Meg,

Sorry you're dealing with this. While it can be disease progression from the diaphragm, please give his doc a call, as a clot in the lungs is always a risk with those that aren't as ambulatory as they once were.

Sometimes, it's too easy to just think everything has the one cause when one has a known illness-any illness. I'd assumed my shortness of breath was my asthma--had no idea it was a mass of clots in my lungs.

 

[tmasters]

I too have shortness of breath. Like everything with ALS, it sneaks up on you slowly. If it is something that has come on suddenly, then like notme said it could be a clot or something that requires immediate attention.

I also use the bipap all night, but I usually use it for a couple hours in the evening too and sometimes for an hour mid-day.

You might want to look into the Diaphragm Pacing System.

-Tom

 

[pmbenb83]

Eric also has a lot of SOB, but his diaphragm has been gone for almost a year. One thing that we noticed that when he had a sudden decline in his breathing is that we cannot tell if he has a slight upper respiratory infection. The doctor gives him a Z-Pak and he seems to improve for a few months. Maybe try an antibiotic along with more daytime use of the BiPap. Definitely give the doctor a call.

Hoping it is something simple and not progression.

 

[Bill Simpson]

Caught me a bit off-guard when I read where you referred to your husband as "is the increasing SOB…" Until I realized you were saying shortness of breath…

Each case has its own problems and solutions, in my case my doctor(s) have me on a nebulizer four times a day (four hour intervals) inhaling albuterol. Just prior to the time for my application, I feel shortness of breath or shallow breathing. Then after the treatment, I am breathing fine again. Usually about 3 1/2 hours after the treatment, I began to feel labored breathing, and still other times I forget to take the treatment simply because I am breathing so well that I don't notice the difference.
The nebulizer takes about 15 min. and then I feel great again. Right now with the weather as it is (105°) I stay close indoors in the air-conditioning, if I venture outside, breathing becomes labored in the heat.
Another thing that might be a factor; I have found that my allergies express themselves more intently since I was diagnosed with ALS. Certain smells can trigger a tightness in my chest. It used to not bother me but when my wife refreshes the room deodorizers, the smell triggers and brings out the "SOB" in me. (Pun intended). Some of her body creams (although fragrances I used to enjoy) can also trigger a tightness or shortness of breath.

Sometimes the solution to these problems may not always be drastic measures. Sometimes it just takes unawareness of the surroundings and paying attention to what seems to be insignificant changes that accompany the shortness of breath, or prelude to trigger the event. When the shortness of breath becomes evident, perhaps you can investigate what has changed just prior to the event. Maybe it takes a few minutes or as much as a half hour for the trigger to become evident. Evaluate changes in the environment each time SOB becomes significant.

Hopefully you can find some of these preventable factors or can make adjustments to avoid occurrences. Perhaps the nebulizer may be something you could discuss with your doctor{s}.