Rapid breathing

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starente15

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Hi everyone. I was wondering if anyone here has experience rapid breathing. My dad's respirations are high (30's) but considered the new 'normal'. He always says he needs to calm down to get his breathing under control but seems unable to do so.

I've noticed that when his mind is occupied he breathes more slowly. He admits that it speeds up when his mind is on it. Unfortunately, he is depressed and has lost interest in doing anything even though we've given suggestions for things that could occupy his time. I've also suggested listening to music and counting backward to try to slow things down.

Has anyone experienced and been able to deal with it on a daily basis. For him, the only thing that really helps is going on the bipap. TIA!
 

gooseberry

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That is what helps Steve, the bipap. I think it is a function of the muscles to breathe getting weaker.
 

lgelb

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What is his resp rate on the BiPAP? Normally, it would not exceed 20. Yeah, it sounds like he needs to stay on it. An RR in the 30s is only going to weaken him further all the way 'round. And it wouldn't be surprising to be "depressed" and "anxious" when it's harder and harder to breathe, and vice versa. I presume you've already thought about antidepressants.

Is there some reason he is taking it on and off?
 

starente15

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He doesnt want the anti anxiety or anti depressant meds. Prefers to power through as with the breathing. He probabLy needs to be on the bipap more than he is but he views it as a crutch and doesn't want to become dependent on it. Nothing we can do I guess :(
 

lgelb

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Dare/bribe him to keep it on for a whole movie or other chunk of time during the day, just to see what happens. Try the analogy that we are dependent on food and drink, climate control and other niceties, too, but we don't try to forego them in the name of independence. Of course, the scary flip side argument, which happens to be true, is that fewer hours on BiPAP = sooner a point of no return for his respiratory function.
 

tripete

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lgelb, are you saying that at some point we will need the bipap on all the time?
 

gooseberry

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All I cansay Pete, is that as Steve's muscles weaken, he is sleepi ng longer with the bipap and using it more during the day.
 

Graybeard

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I just went from bed only bipap to full time. Hate the mask and welcome the relief. A month ago my blood CO2 was 55, with 20-40 being normal. It's hopefully better now. I still have to hyperventilate after some effort, before putting the mask back on.
 

lgelb

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GB, have you tried the Circadiance nasal cloth mask? Much lighter/cooler than plastic to wear all the time. They also make a FF version if you need that. You can order on line w/ return insurance in case you don't like it.

Tripete, as you can tell by reading these threads, everyone's course differs but many people do need BiPAP more and more, and do get to 24/7. In my husband's case, he went from nights only to ~22h a day virtually overnight. But he only went to 24/7 in his final days. For other people, it has been more gradual. And some people never get there. It depends on the muscles involved and what else is going on.

It makes sense if you think about it, that once your limbs can't move, that's just it -- But if you're not getting air, you die. So we use machines to "support" the breathing muscles if/as that can still happen. When the muscles can't be supported any more, some people choose to get a trach--a surgical opening to permit air to go directly into the lungs without any effort (a.k.a. "invasive ventilation" or colloquially, "vent") at that point, to essentially bypass the muscles that have failed. Most do not.
 

kamkaro

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Is there some reason he is taking it on and off?

______________
kamkaro
 

tripete

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I guess I knew that I would eventually need it more and more. As my ALS presented with breathing issues I suppose it will happen sooner than later. My Doctor has already suggested I use it during the day.

I had been mentally coming to grips with the limb weakness and what it would mean but had really never considered the need to drag the box around with me every where. It would be nice if there was some guide of expected progression, but I know it is different for everyone.

Man, do I hate this.
 

gooseberry

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Pete, steve has sensitivity to heat. On warmer days he can't breathe outside without it. So if we have to go out he uses it nonstop. Other days it is very little during the day. It varies greatly depending on how rested he is, the temperature, humidity, etc. He is losing his accesory nuscles now so he is requiring it more. We have a car charger adapter so we can plug it in when we are driving. I know you can use the batteries but we try to save those for times when we can't plug in .....like a day trip at the corvette factory!
 
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