Treatment for shortness of breath (air hunger)?

[Rufous McKinney]

Sharing a recent observation on air hungar


When in a far worse acute state (like now I'm sick with an actual flu maybe) I experience EXTREMELY BAD air hunger.

so if my PEM is extremely bad, that gets very bad too.

I noticed that lying on my stomach to rest in fact substantially reduced my otherwise severe short term air hunger.

Like they found out since the COVID outbreak.

My air hunger will reduce alot if I can take a pain killer.

 

[SlamDancin]

@Rufous McKinney Do benzos affect your air hunger?

 

[Rufous McKinney]

Do benzos affect your air hunger?

yes I think its better on those, too.

I literally am gasping for air like a guppy on a beach, when it happens in an acute downfall. Its debilitating and I am swearing: can I buy oxygen somewhere for when this occurs next time?

 

[DomSaxum]

From what I can tell - and what I understand - additional oxygen would do no good. My blood gasses (oxygen level) always runs 97-99 - great for a 70yo. It is an issue with the cells not being able to utilize the O2 from the blood, not one of getting O2 to circulate around the body. Because your cells are "screaming" for more O2, your brain interprets that to mean 'breath harder'. So we pant, and it continues for a lot longer than if we were actually short of air because the cells don't stop calling for more O2. I think it is a case of the body responding to what should be a normal issue, but that doesn't relieve the problem.

 

[Rufous McKinney]

From what I can tell - and what I understand - additional oxygen would do no good. My blood gasses (oxygen level) always runs 97-99 - great for a 70yo

Yes I'd agree with that.....

I show high blood oxygen, the nurse is so impressed? No moons exist on my fingernails.

You just really want some oxygen. You figure it HAS to be better to get a few more molecules of the oxygen.

Gasp Flail.

 

[DomSaxum]

Infection and air hunger

At 2am I was in an ambulance on the way to the hospital – temp of 106. Turns out I have a UTI.

But my point here is that I began some rather violent shivering due to the fever, which led to gasping for air to the point I felt I was actually suffocating. When every muscle in my body was ‘convulsing’, it was the equivalent of my trying to run a 3 min mile – and my ME responded as it does. As if ‘decondition’ can leave you gasping for air like a fish on the beach from shivering from a fever.
(And yes, I had the head heart doctor at the Mayo Clinic tell me my problem was only deconditioning, which I take to mean I'm just fat and lazy.)

 

[bensmith]

Niacin seemed to help a tiny bit, and getting my heart pumping(walking a bit)

 

[Lalia]

I got to bottom of my air hunger.
Bizarrely....like everything in this disease its not easy path.
So it increased with gluten but after gluten omission still it can persist.
Then it still comes with vodka or whiskey (supposedly gluten free as its distilled out). Also yeast extract can cause it.
So anything that began life in a wheat field is eligible....or a barley field or rye...any grain.
Safe list rice and potato.

Missing a grain breakdown enzymes? Who knows.

Whatever is taken out is not enough still react.

All the science of the day can say gluten out...gliandin out...still the trigger is pulled.

Grain out. Whatever form she takes.

Could it be the phytic acid in grains is causing mineral deficiency? Just a thought, more information on the web: https://www.healthline.com/nutrition/phytic-acid-101

 

[DomSaxum]

@Lalia Interesting - thanks for posting!!

 

[Methyl90]

I continue to experience the greatest discomforts of air hunger when I have a block in the folate cycle ... so I put folate first, B1 second, potassium third ... always considering a regular saturation and none lung disease ... in ALS a blocked diaphragm is experienced even with normal saturation ... because it is a muscle controlled by motor neurons.

 

[Lalia]

I continue to experience the greatest discomforts of air hunger when I have a block in the folate cycle ... so I put folate first, B1 second, potassium third ... always considering a regular saturation and none lung disease ... in ALS a blocked diaphragm is experienced even with normal saturation ... because it is a muscle controlled by motor neurons.

Would you mind explaining more about the folate cycle and the role B1 and potassium play? I don’t know much about this at all. Many thanks 🙏