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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Air Hunger

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The heart probably has more mitochondria than any other organ, though I do not know how it compares to the brain. It needs the mitochondria working. CoQ10 can help with that, as can carnitine. Magnesium has other purposes, and I am less sure about d-ribose though many have benefited from it.

Bye, Alex
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
I just came across a quote from Dr Afrin (a leading MCAS researcher) that described my experience with air hunger. You can see this quote and a bunch of fascinating (to me) mast study disease case studies at http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slides.pdf. The pulmonary comment is from slide 54. Slide 55 is about POTS.
There’s a broad range of pulmonary issues that can be seen in MCAS, but what these
patients will most commonly complain about in the pulmonary area is something they
struggle to find the words to describe. You have to give them the time to figure out how
to tell you this, but what they will say in the end is “I just can’t get a really deep breath
any longer”. Extensive pulmonary function testing will be normal, and they’ll still tell you,
“There is something wrong with my breathing”.
The good news is that he has had some success in treating MCAS, and sometimes symptoms go away rapidly.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Since this is my most bothersome symptom and the one that most negatively impacts my quality of life, I'm curious how prevalent it is within this community. I've chased down a lot of rabbit trails trying to find the source but, as yet, to no avail. If you have it, what things have you tried that helped? Also, what are some of the most likely causes? Right now, I'm looking at adrenal fatigue and playing around with hydrocortisone dosages, but it's not looking like that is it. Help!

can you describe what happens. I have something but not sure it would be called air hunger.
 
Messages
13
The best way I can describe it (at least for me) is feeling like I need to take a deep breath but not being able to. It really is different from being short of breath. I guess it's a type a shallow breathing and when at its worst, I get desperate for a good full breath but struggle to get one. It's awful to have to be so aware of your breathing that it takes over your life at times!
 

triffid113

Day of the Square Peg
Messages
829
Location
Michigan
One theory I have seen several times is that air hunger is related to GERD. I know my air hunger is worse when my sinuses and acid reflux are bad.
If this is so I suggest considering that your gut problems are due to HYPOchlorhydria rather that HYPER. Hypo hurts too because food ferments and irritates the gut and also low HCL allows proliferation of bad gut bacteria and the like. If you have low stomach acid you will have trouble absorbing iron.

I also have periodic problems feeling short of breath and anemic even though I am past menopause. Since I am already aware of and treating hypochlorhydria (with zinc primarily as zinc and P5P are required to make HCL), I looked into Vitamin A. I have a Vitamin A deficiency (could be absorption problem?) and it causes low ferritijn. You can have regular hemoglobin but low ferritin and it can cause such issues.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I describe my experience as a quick involuntary diaphragm movement that causes me to suck air in deeply and quickly. It is not a yawn, it is not trying to catch my breathe but litterally at any moment I take a quick inhale of air as my diaphragm appears to be triggered.
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
The best way I can describe it (at least for me) is feeling like I need to take a deep breath but not being able to. It really is different from being short of breath. I guess it's a type a shallow breathing and when at its worst, I get desperate for a good full breath but struggle to get one. It's awful to have to be so aware of your breathing that it takes over your life at times!

my case sounds somewhat like yours dsnrbec. I have to sleep with many pillows to elevate upper body to 45degree angle. Also sleep on right side. When lie with less pillows can't breathe deeply and feel heart tight in chest/chest pressure. Did echocardiogram and ecg all fine though trace valve regurgitation. Thought they would see enlarged heart but they did not. Also feel better when raise legs in bed, I think Cheney said that eases pressure off the heart. I know stress definateyl makes me feel more heart pressure, and the breathing issue got worse after panic attack in hyperbaric oxygen chamber, feels like strained heart muscle. But problem already started at onset cfs. Also have adrenal fatigue, other issues. I think perhaps just being so weak makes my heart too weak to work optimally (I am pretty much bedroom bound).
 
Messages
20
Since this is my most bothersome symptom and the one that most negatively impacts my quality of life, I'm curious how prevalent it is within this community. I've chased down a lot of rabbit trails trying to find the source but, as yet, to no avail. If you have it, what things have you tried that helped? Also, what are some of the most likely causes? Right now, I'm looking at adrenal fatigue and playing around with hydrocortisone dosages, but it's not looking like that is it. Help!

Hello have you received a proper diagnosis or treatment for this I've been suffering and would appreciate some help.
thanks
 
Last edited by a moderator:
Messages
13
Hello have you received a proper diagnosis or treatment for this I've been suffering and would appreciate some help.
thanks
I was diagnosed earlier this year with Lyme's and Babesia. Air hunger is one of the symptoms of Babesia but so far, treatment has not provided relief. It has over time become more sporadic but continues to be bothersome. I wish I could offer you more encouragement.
 
Messages
20
I was diagnosed earlier this year with Lyme's and Babesia. Air hunger is one of the symptoms of Babesia but so far, treatment has not provided relief. It has over time become more sporadic but continues to be bothersome. I wish I could offer you more encouragement.

Thank you for responding. Did you have any other symptoms besides the air hunger? How did your doctor finally test for that?
 
Messages
13
Thank you for responding. Did you have any other symptoms besides the air hunger? How did your doctor finally test for that?
I wasn't tested for 3 years because my symptoms weren't typical because I had no pain. I mainly had the air hunger, fatigue, insomnia and dysautonomia. I was tested by Igenex after a Lab Corp test was inconclusive.
 
Messages
20
I wasn't tested for 3 years because my symptoms weren't typical because I had no pain. I mainly had the air hunger, fatigue, insomnia and dysautonomia. I was tested by Igenex after a Lab Corp test was inconclusive.

I can imagine having air hunger for 3 years.. how do they test for dysautonomia? I notice I'm having trouble swallowing, not water but like saliva in my mouth.