Evening breathing issues

[tripete]

Is it normal for breathing problems to get worse toward evening?

I had recently been having more headaches so they bumped my BiPap up. I generally wear it all night but not during the day. Maybe I need to start wearing it more ?

Fatigue sets in very quickly in my legs and hands, could this be because of the breathing?

I also loose my voice when my breathing gets harder. I can still walk (shuffle after just a bit) and use my hands all though they are slowing down and feel clumsy.

 

[lgelb]

Tripete, the answer to your questions is yes, maybe, but the answer to how well your new settings are helping is in your machine's data card. Witnessing headaches, fatigue, voice issues and inferring what's causing them is like driving with the rear view mirror. You could also try putting on the BiPAP when you begin feeling fatigued or losing your voice, and see if/how it helps.

 

[starente15]

Hi Pete. I've noticed my dad gets worse in the evening as well. His voice is stronger in the morning and then seems to weaken. He sleeps with the bipap and uses it for an hour after lunch. If he's having a bad day he will gone on one or two more times for 30 minutes. I also wondered if nighttime had something to do with it getting worse.

 

[tripete]

Star, I had read your string but saw it was closed, and there was no real answer so I started from scratch. Has it helped to use it more during the day?

thanks, Peter

 

[starente15]

Yes, it does help him but he's resistant to using it "too much" which I believe would alleviate some of the struggle. Last week was better and he needed it less frequently but that's not the norm. It almost seems like he's in a stabilized mode. Nothing has gotten worse in the past few months but the breathing is still the main issue and it's bad.

 

[Barbie]

after a full day--it would be normal for you to be more tired in the evening and more prone to fatigue and symptoms. doyou nap during the afternoon? even just resting and watching tv with the bipap would help you for a couple of hours.

 

[zoohouse]

Tripete, how affected is your father's mouth and swallowing? My husband has perfect speech and is still able to eat and swallow, but lost his diaphragm over a year ago. He uses his full face mask bipap at night, and a sip & puff ventilator during the day. He does not have a trache but sips on a mouth piece when he needs a breath, that way he is free of a mask during the day. When he started out he used it only to supplement his own breath, but 1 ½ years later he is unable to take a breath on his own. This is not because his diaphragm got lazy from lack of use, but a progression of the disease. Resting the muscle actually is thought to slow the progression of damage, as the nerve endings produce a protein when used that the ALS body is not able to rid itself of, eventually destroying it.

Paulette

 

[tripete]

Barbie, no I do not nap, I can tell I will soon need to start. Paulette, it is not my father but me. I am still able to eat but have noticed swallowing problems beginning and a decrease in my appetite.

It seems like I might be in a "rapid progression" stage as everything seems to be getting worse. My voice is getting weaker as my breathing does and my hands and legs are getting much worse.

 

[lgelb]

Paulette, Star's dad is a PALS as is Tripete. Both are posting in this thread and both pts have breathing issues.

Star, this may be time for a "use the BiPAP or lose what's left of your breathing earlier" kind of speech. He would be much more comfortable if he weren't waiting to use it as a last resort, and there is a point of no return in terms of CO2 retention that being without it triggers.

 

[zoohouse]

Have you had a recent pulmonary function test? Your voice will get weaker if you are not able to get a big enough breath to vocalize. Also a peg tube is nice to have before pulmonary function decreases too much, and you can get nutrition that way.
Sorry for the mix up, but I haven't been on the site for some time, and don't have much time to read past posts.
Paulette

 

[tripete]

My last test was am month ago. I was at 71% then. I suspect I have declined considerably since then as just sitting here I feel very labored breathing. This sucks.

 

[starente15]

I agree Laurie. We've given the speech many times but he's stubborn. At this point I've resigned myself to let him do things his way.

Pete - My dad naps/rests for an hour after lunch every dad. That seems to help a lot. Might not be a bad idea to start.

 

[MaxEidswick]

>I suspect I have declined considerably since then as just sitting here I feel very labored breathing.

breath stacking:

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Stacked breathing, also known as breath stacking, is a specialized type of exercise that typically caters to people who have respiratory difficulties, but also benefits athletes and virtually anyone looking to improve their lung capacity and breath control during exercise. Practiced regularly, breath stacking produces numerous benefits for athletes.

Technique

To perform stacked breathing exercises, simply sit on the edge of a chair or bed, keeping your back straight and shoulders relaxed. Take a small breath, focusing on filling the base of your lungs, and hold for a second. Without exhaling, take in a larger breath and hold for one more second. Finally, take a big breath that fills your lungs as much as possible and hold for three to 10 seconds. Purse your lips and exhale slowly.

In Your Regimen

For improved breathing during your workout, perform stacked breathing techniques up to four times daily. Ben Peterson, author of "Triphasic Training: A Systematic Approach to Elite Speed and Explosive Strength Performance," recommends following your regular workout with five to 10 minutes of breathing exercises such as stacked breathing and deep belly breathing to improve exercise recovery.

Core Benefits

The process of stacked breathing exercises the muscles of the chest and stretches out the lungs, which helps improve lung capacity and increase oxygen intake. Breath stacking also results in improved airway clearance.


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[tripete]

Thank you Max, this actually something I have done for years as part of triathloning. It is good to know I should continue it.

 

[MaxEidswick]

>Thank you Max