My Air Hunger has improved dramatically !!

[mmzzk]

Hi all,

I've been living with ME symptoms for just over a year now. I am lucky enough to have had my fatigue symptoms subside slowly but entirely after removing myself from the environment which I am convinced is responsible for the onset of my illness in the first place. Having spent much time on this forum reading other people's posts, I understand the potential severity of this illness and am very grateful that for whatever reason, the reoccurring and devastating episodes of fatigue seem to have stopped.

Incensed by my illness, I have done lots of research and tried lots of different things to mitigate some of the more debilitating symptoms. Most of the research i've done has led nowhere, and there is no panacea I can offer to anyone regarding any of hte symptoms.

As someone who greatly values meditation and bodily awareness, one of the most devastating symptoms for me has been a persistent air hunger - otherwise known as dyspnea. I have seen doctors about this and had my lung functioning tested, and have been prescribed antacids for what was believed to be GERD. The theory was that the excess stomach acid was somehow oxidizing and damaging my aero-digestive tract, thus leading to the air hunger. Sadly, no dose of antacids would work to alleviate my air hunger, and my appetite and digestion both suffered simultaneously.

Recently, I came across a post on a website talking about treating acid reflux with a supplement known as Betaine HCL. The theory was that acid reflux resulted not from an excess of acid production, but a general paucity. The post described how blood cells in the respiratory tract could stack in what is supposedly called the "rouleaux formation". This results from an absence of certain compounds necessary for digesting proteins, if i'm not mistaken. My dim awareness of the science notwithstanding, I am pleased to report that in less than a week of self-medicating with Betaine HCL, a cheap probiotic complex, and some standard digestive enzymes, my breathing capacity has improved (i'm guessing) 60-70%. Simultaneously, my appetite has improved tremendously and I am now confident that I will be able to eat enough calories to build muscle (concomitant with a rigorous work-out schedule, of course).

I wanted to share this information as soon as possible for those of you who are suffering from air hunger. In my experience, it was a very upsetting and distressing symptom. I still remember the first morning in which i experienced air hunger, and the fear and anxiety that wracked me as a result of not being able to breathe properly. I would wake up many mornings and notice immediately my inability to get a full breath, and it would put me in a very negative space of mind.

The supplements combination I found to have worked for me is as follows:

Life Extension Enhanced Super Digestive Enzymes
Healthy Origins Probiotic 30 billion CFU
Now Foods Betaine HCL 648mg

I personally believe it would be fine to substitute another brand for any of these three supplements - I just happened to pick the cheapest ones I could find. I gladly encourage individuals to *carefully* experiment with these supplements and see if they notice any improvement.

I take one cap of betaine once in the morning, once before every meal, and once before I go to sleep.
I take two caps of the super digestive enzymes before every meal, with the betaine hcl.
I take one cap of the probiotics before lunch and dinner (when I eat the most) with the betaine hcl and super digestive enzymes, and once at night before I go to sleep with the betaine hcl.

I really hope that this helps somebody out there. My only interest in typing up this admittedly lengthy post is to provide some information that might help someone suffering from air hunger. If you do try this out, I hope it helps with your symptom as it did with mine.

best of luck!

 

[Hip]

Thank you, Ramesses, for posting that information about betaine HCL helping your air hunger symptoms.

Can I just ask: what does it actually feel like to have air hunger (shortness of breath)? I don't think I have this symptom as part of my ME/CFS (though often I feel like I am not getting enough oxygen to my brain).

However, I think I may have an inkling about what air hunger feels like, as when I eat too much stodgy food (like bread) too quickly, and it sort of gets stuck in my gullet, this then creates a sensation of lack of oxygen and shortness of breath.

 

[Mattman1]

Air hunger is never fun, so it's great that the digestive enzymes have made such a dramatic improvement.

Ramesses, did you by any chance have a flu-like illness occur which you think could have triggered your symptoms in the first place? Always curious about the onsets in those who have substantial recovery.

 

[golden]

what i experience air hunger to be is a heavy, laboured chest followed by breathing but feeling like i am not getting any air at all.

i no longer panic but i watch my breath and there is movement of my chest in and out but my body is by this time feeling desperate for air.

after a while i finally am able to take a deeper breath (which comes in its own time and i can not force it - much like a yawn that wont come versus a satisfying yawn)

and there is air and relief in that breath.

i dont know if that is anything like what others experience.

 

[Mark]

I've had trouble with this twice, each time lasting about a month or two, and I've had quite a lot of it in the last few weeks (it seems to be easing now). I also have acid reflux issues, on and off.

These two problems are a couple of areas where the regular advice from your GP should be helpful, even if he will probably not know how these issues may relate to your ME/CFS or what the underlying cause is. These symptoms are very common and I've found the basic advice very helpful for managing them.

For acid reflux, a few rennies are normally enough to sort it out for me, and being aware of which foods are acidic is also helpful (I don't drink fresh orange juice any more, it always sets me off now). Acidity and pH balance issues are at the heart of how 'air hunger' and 'hyperventilation' work, so they do seem likely related and an awareness of acid and alkaline food and drink is fairly likely to help in managing what precipitates the air hunger as well.

For 'air hunger', I think the first thing to understand is how hyperventilation works. The key thing is that, although it feels like one is not getting enough air or oxygen, actually what is happening is that the CO2 concentration of the blood has fallen below its normal level. This may happen for a number of reasons, but one of the most common problems is that the intuitive reaction to this situation is dead wrong, and a vicious cycle of feedback can then come into play. We feel like we aren't getting enough oxygen, so we try to breathe more deeply and more often - lots of deep breaths. This makes the situation worse, it's the worst thing we can do, because we're then expelling even more CO2 when we breathe out and making the CO2 imbalance even worse. The experience can sometimes become quite frightening, and automatic anxiety responses can kick in because our bodies are sensing that we can't breathe. This can send us into a worse hyperventilation situation as we try to correct the problem in exactly the wrong way. Hence the association with anxiety - there are negative feedback loops here...

Typical solutions to this are to breathe into a paper bag (covering your mouth and nose, so that you get to breathe back in some of the CO2 you're breathing out), to take lots of shallow breaths rather than deep breaths (this helps a lot for me), and to try to relax and eliminate any panic or worry (but again the paradox is that you need to do this without the usual meditation/relaxation trick of breathing deeply - shallow breaths are better when in this state).

The association with acid reflux is interesting, I wasn't aware of this before but it does make sense given what the wikipedia article says about hyperventilation.

None of the above addresses the original or underlying cause of the pH regulation problem that creates this 'air hunger' situation, but I've found it's been helpful to understand all this in order to best manage my symptoms. Any decent GP should be able to help more with this so it's worth talking to them about it. Even though the associations with anxiety might confirm a sceptical GP's ideas about psychomatisation, and CBT might even come into play in persistent cases (CBT can sometimes be quite appropriate in this circumstance actually), they should be able to give some helpful advice on how best to react when you experience this problem, and they will hopefully have more ideas beyond what I've mentioned above.

 

[golden]

i dont breathe faster or deeper - so i guess its not hyperventilation.

the only deeper breath is that final last breath when i get some air and then its over. the whole thing only lasts minutes.

i believed it was connected to hypothyroidism.

i am shocking at not being very aware of my symptoms and find it difficult to describe. maybe this air hunger isnt the same as other peoples air hunger.

 

[alex3619]

I have had severe air hunger only once, and it lasted for over a month, and then slowly faded away for months. During this time I could not sleep lying down. This was directly after a flu-like infection. It is highly likely, though I cannot be sure, that this may have been about viral infection of the heart. That is why lying down is impossible, it prevents the heart from working properly, and that is what feels like air hunger. Fortunately it resolved on its own completely, it just took a while.

 

[overtrain]

Just wanted to thank you for this. Basically cured my air hunger. Used to wake up middle of night gulping like a fish when I tried to drink water. I'd pant, & barely get thru a sip before having to breathe again. Also during the day, but not as dramatic. I still sometimes have to take a few deep breaths before downing liquid, but compared to how it used to be? MIRACLE!

Organized Medicine, of course, had no answers. They'd never heard of such a symptom.

Hi all,

As someone who greatly values meditation and bodily awareness, one of the most devastating symptoms for me has been a persistent air hunger - otherwise known as dyspnea. I have seen doctors about this...

best of luck!

 

[Allyson]

I have a different kid of issue also related to air / breathing - it feels like I stop breathing occasionally and have to remember to breathe manually - does this come under the same category as air hunger? Does anyone else find this ? TIA

Ally

 

[Allyson]

I should add this is different form other air hunger things I get - one is exertional dyspnea, another is a tightness that may be mild asthma or bronchospasm in top of chest.

Ally

 

[Hanna]

I used to feel this air-hunger symptom. it comes and go, lasting some weeks and then disappear.

But it has return, full-blown now with a new treatment I am taking for babesiose : RIAMET (I am a little more than 24h00 now in this treatment).

Can't lie at all, making my heart pounding in a strange way, and causing my respiration to stop. I am also experiencing tachycardia along with this.
Stangely, I am having some oesophagus tightness with the treatment, which make me think there may be some link here between air hunger and GERD problems...

 

[Gingergrrl]

Does "air hunger" equal shortness of breath and exertional dyspnea?

 

[taniaaust1]

Does "air hunger" equal shortness of breath and exertional dyspnea?

For myself no as that is like when someone has done a lot of exercise eg athletes (or anyone) after a run and get short of breath eg puffed out. Air hunger in my case feels different to that. Fortunately Ive only had air hunger once I think, its a dreadful symptom, Im sorry for anyone who has it as one of their regular symptoms. (I got it after I over did things.. eg peeling the vegatables one xmas brought it on). Its like my very cells themselves arent getting enough oxygen.. to me it doesnt feel like its an issue to do with the lungs thou the first reaction I did to it was to taking long deep breaths to get more air that way as its the thing we naturally do when we feel like we arent getting enough O2.

Its also completely different again to not getting enough blood to my brain (which I get a lot with POTS).

I guess to feel like what air hunger feels to like me.. hold your breath for a while..that feeling where one gets uncomfortable "I need air" feeling (its suffocating feeling to me some). but unfortunately doing anything with my breathing helps it none at all so it can be a bit scary. I start wondering if Im going to die or feeling like I need to go to hospital for oxygen. If it lasted longer and if we werent in the middle of xmas day when I got it, I would of asked to be taken to hospital. (Im still curious if being given oxygen would of helped?)

Anyway..you'll know if you are experiencing "air hunger" as it's really a bad symptom to feel and cant be described as anything else and this is exactly what it feels like.

I'll try to keep this post in mind if I ever get it again.

 

[Susan Murphy]

I've had trouble with this twice, each time lasting about a month or two, and I've had quite a lot of it in the last few weeks (it seems to be easing now). I also have acid reflux issues, on and off.

These two problems are a couple of areas where the regular advice from your GP should be helpful, even if he will probably not know how these issues may relate to your ME/CFS or what the underlying cause is. These symptoms are very common and I've found the basic advice very helpful for managing them.

For acid reflux, a few rennies are normally enough to sort it out for me, and being aware of which foods are acidic is also helpful (I don't drink fresh orange juice any more, it always sets me off now). Acidity and pH balance issues are at the heart of how 'air hunger' and 'hyperventilation' work, so they do seem likely related and an awareness of acid and alkaline food and drink is fairly likely to help in managing what precipitates the air hunger as well.

For 'air hunger', I think the first thing to understand is how hyperventilation works. The key thing is that, although it feels like one is not getting enough air or oxygen, actually what is happening is that the CO2 concentration of the blood has fallen below its normal level. This may happen for a number of reasons, but one of the most common problems is that the intuitive reaction to this situation is dead wrong, and a vicious cycle of feedback can then come into play. We feel like we aren't getting enough oxygen, so we try to breathe more deeply and more often - lots of deep breaths. This makes the situation worse, it's the worst thing we can do, because we're then expelling even more CO2 when we breathe out and making the CO2 imbalance even worse. The experience can sometimes become quite frightening, and automatic anxiety responses can kick in because our bodies are sensing that we can't breathe. This can send us into a worse hyperventilation situation as we try to correct the problem in exactly the wrong way. Hence the association with anxiety - there are negative feedback loops here...

Typical solutions to this are to breathe into a paper bag (covering your mouth and nose, so that you get to breathe back in some of the CO2 you're breathing out), to take lots of shallow breaths rather than deep breaths (this helps a lot for me), and to try to relax and eliminate any panic or worry (but again the paradox is that you need to do this without the usual meditation/relaxation trick of breathing deeply - shallow breaths are better when in this state).

The association with acid reflux is interesting, I wasn't aware of this before but it does make sense given what the wikipedia article says about hyperventilation.

None of the above addresses the original or underlying cause of the pH regulation problem that creates this 'air hunger' situation, but I've found it's been helpful to understand all this in order to best manage my symptoms. Any decent GP should be able to help more with this so it's worth talking to them about it. Even though the associations with anxiety might confirm a sceptical GP's ideas about psychomatisation, and CBT might even come into play in persistent cases (CBT can sometimes be quite appropriate in this circumstance actually), they should be able to give some helpful advice on how best to react when you experience this problem, and they will hopefully have more ideas beyond what I've mentioned above.

 

[Susan Murphy]

I have come to realize that my air hunger is due to a lack of adrenaline. My heart rate is slow during these episodes and there is no panic. A plasma catecholamine test showed decreased epinephrine after standing 10 minutes, which is not normal. Two 24 hour catecholamine urine tests showed zero epinephrine. This makes sense, since adrenaline expands the lungs.. Interestingly enough my cortisol runs high.

 

[Susan Murphy]

My air hunger is much worse when in hot weather. Have any of you noticed the same?

 

[me/cfs 27931]

Never heard the term "air hunger" before, but I can relate to most of the descriptions here. Thanks @ramesses for the supplement suggestions. I'll give them a try.

I have had "air hunger" symptoms recurrently over the past decade, and have described them to about 8 doctors.

Not one doctor has offered any suggestions for relief and repeated requests for a pulmonary function test have all been refused.

Several doctors have insisted it's just not possible for the body not to automatically breathe deeply enough when needed. In spite of my efforts, I have failed to get across how uncomfortable this "air hunger" can be.

I'm reading An Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea, which has some great info.

 

[me/cfs 27931]

My air hunger is much worse when in hot weather. Have any of you noticed the same?

The occurrence seems mostly random to me. Weather doesn't seem to matter.

However, air hunger is more likely to happen during an extended PEM crash.

 

[Susan Murphy]

Never heard the term "air hunger" before, but I can relate to most of the descriptions here. Thanks @ramesses for the supplement suggestions. I'll give them a try.

I have had "air hunger" symptoms recurrently over the past decade, and have described them to about 8 doctors.

Not one doctor has offered any suggestions for relief and repeated requests for a pulmonary function test have all been refused.

Several doctors have insisted it's just not possible for the body not to automatically breathe deeply enough when needed. In spite of my efforts, I have failed to get across how uncomfortable this "air hunger" can be.

I'm reading An Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea, which has some great info.

 

[Susan Murphy]

The occurrence seems mostly random to me. Weather doesn't seem to matter.

However, air hunger is more likely to happen during an extended PEM crash.

What is Pem? I have noticed the air hunger correlates with high cortisol. High cortisol tilts your autonomic nervous system in favor of sympathetic over parasympathetic. You can order a 5 point cortisol test from zrt laboratories. I would bet you will find your cortisol runs high when you are most miserable. You can also try doing what I did unintentionally. I took isocort because I thought my cortisol must be low since I am tired. My air hunger went through the roof!!!