My PALS anxiety

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pittsburghgal

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My PALS has been having episodes where he feels like he can't breathe normally. When he is experiencing this he has repeated swallowing but does not seem to be gasping for air. He says that it is "in his head" and asks me to open the window (even if it is below freezing outside). This usually causes the feeling to go away. These episodes happen mostly at night and he has been sleeping poorly for the past 5 months. Strong odors such as when I was making homemade soup can also bring this on.

He told me today that he has been having these episodes for the past 2 years but did not want to tell me. Now they are happening more frequently. Is this air hunger?

Sharon
 
Ordinarily, I would think of airway collapse when wanting to cough/gag with odors/supine position but I am not as familiar with the feelings of having a trache esp. without a vent, so punt this over to Diane...
 
Having the trach shouldn't cause this, and I am sure he knows when it is a matter of needing suctioning. So that leaves anxiety/ mini panic attacks, and air hunger. The difference can be hard to tell because air hunger is intended to trigger anxiety and even panic, and the reverse can be true as well. A check of O2 Saturation with a fingertip monitor (about $50 at CVS or Walgreens) would indicate low O2 as the problem.

I had those problems before the trach and vent and they were accompanied by definite anxiety and even all out panic. Being in small stuffy room or just in the van or full stomach or even a full bladder set them off as did being alone for even a few minutes with no way to call for help. Fresh cold air helped. Zoloft ended the problem. As time went on the shortness of breath became common but the panic attacks didn't return. Increasing BiPAP use during the day became necessary. Then a cough and cold put me on the vent. Major improvement!
 
Correct me if I'm wrong, Diane and others. I thought air hunger was a typically later development where the patient can not adequately obtain oxygen, and so is panicked and trying desperately to get air. (Relieved either by forced oxygen or by morphine.) It's been described to me as dry-drowning. What I saw in my wife's case was somewhat mild, because we were very fast with the morphine.
 
Air hunger in ALS is most pronounced in the late stages and that is how those of us living in the world of ALS associate it. But it is just semantics. Air hunger is just an easy to understand and relate to word for dyspnea. Anything that affects the ability to breathe can cause the restlessness, anxiety, and then panic of air hunger. It can be a fast reaction to a stuffy room or hyperventilation or asthma or choking -- or the big uglies like strangulation or drowning. But it does bring to mind more a situation of prolonged distress. More starvation than hunger.
 
Thanks, Diane.
 
Thanks, Diane.

It really does seem to be anxiety. He describes it as feeling like there isn't enough air in the room and always resolves quickly with opening the window. I do see a connection to it happening when the room is somewhat stuffy or when there are strong cooking odors such as when I was cooking a lentil soup for several hours on the stove. Last night I put on the overhead fan all night and he said that helped a lot. It was just too cold here to leave a window open all night and he really is very cold intolerant. He says that he used to be able to talk himself out of these feelings before but now he is not able to do that as easily.

Another thing-- the past 2 days he has been coughing a great deal when on the BIPAP. We actually had to stop using it after 3 hours yesterday. I think he may be getting a cold because he had a runny nose much of yesterday but I can't figure out why the coughing seems to be only happening on the Trilogy.

Sharon
 
Just a guess, but the air pressure of the Trilogy BiPAP could be pushing his nasal drainage back up somehow -- can't quite picture it with a Trilogy on a trach -- and making him cough. Try a cold med that stops a runny nose. If that doesn't help, back to the drawing board, maybe looking at humidification of the air supplied by the Trilogy. Drying out of the trachea and bronchi could cause a cough.
 
Mike,
Late/end stage air hunger when BiPAP is insufficient because the volume of air needed no longer fits into the lungs isn't the same as early-to-mid stage air hunger that signals a need for different BiPAP settings, or, as Diane points out, the need to address other causes/exacerbating factors like congestion, anxiety, odors, lack of circulation.

I just wanted to clarify so anyone not at "the end" can see "air hunger" as a need to take action, not to suffer needlessly. "The end" is usually pretty clear.

Best,
Laurie
 
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