My Air Hunger has improved dramatically !!

[me/cfs 27931]

What is Pem?

Post Exertional Malaise.

 

[Gingergrrl]

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.

@Webdog this is absolutely false and those doctors do not know what they are talking about. If you have a pulmonary restriction like I do, it is impossible to inhale a full breath by definition. The inside of your lungs can be normal but the restriction can be caused by many other factors like neuromuscular etc and I am dealing with this now.

Also, thank you so much for the link you posted from the Thoracic Society and I had not seen that one before and plan to read it and print it out for one of my doctors.

 

[me/cfs 27931]

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

I had a 4 point saliva cortisol test a few months back. Very low cortisol from morning until early evening. Normal cortisol at bedtime.

No points on my cortisol test were high.

 

[Susan Murphy]

I had a 4 point saliva cortisol test a few months back. Very low cortisol from morning until early evening. Normal cortisol at bedtime.

No points on my cortisol test were high.

Were you having air hunger at the time you did the testing? You might want to consider trying isocort for a couple days. If you truly have low cortisol it will help you. If your cortisol is not low, then you might experience air hunger.

 

[Susan Murphy]

I wanted to add that air hunger is NOT the same thing as hyperventilating. Hyperventilating is fast shallow breathing. The way I would best describe air hunger is that you have to work very hard for each breath until your chest relaxes and you can then breath more freely.

 

[Susan Murphy]

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.

That is how I would describe air hunger too. I believe air hunger is caused by a dominant sympathetic autonomic nervous system. This has been implicated in cfs.

 

[serusaert]

hi @Webdog i was reading your post over on the mestinon thread and realized we had a similar onset with respect to the air hunger. i know yours has improved a lot - and mine too, but i wanted to post here about my experiences in case it helps anyone. essentially, this is about the buteyko method.

just after they had ruled out MS and before i realized it had to be CFS (and the eventual diagnosis), i ended up in the ER twice with what i thought had to be tetany due to onset of parathyroid issues - i was hyperventilating, had air hunger, and had intense fasiculations running up and down my body. (i have not had it that bad since those times about a year and a half ago.)

before ultimately getting away from that moldy apartment and starting LDN (both helped a lot), the butekyo method helped me deal with the air hunger and hyperventilation at the time.

the basic technique is insanely simple: work to prolong the time when you are between breaths by doing counting exercises. test your progress by noticing how long before you feel the first air hunger pang when you hold the pause. as the pause lengthens with practice, the symptoms of air hunger and occurrences of hyperventilation should decrease.

be warned that the proponents of the method have over-extended it's use and turned it into a bit of semi-quackery by claiming it cures a whole bunch of stuff, but the core success of the technique is, imo, due to the fact that it really can reduce the occurrence of hyperventilation and air hunger.

btw, my mom died of emphysema and she suffered from extreme air hunger at the end. air hunger is really another version of pain (as i'm sure you are well aware).

 

[anni66]

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.

This may explain one of my daughter' s symptoms. She says when she breathes it is as if the air is " not getting all the way down". I had thought this may be down to swollen lymph glands- but perhaps not?

 

[Gingergrrl]

btw, my mom died of emphysema and she suffered from extreme air hunger at the end. air hunger is really another version of pain (as i'm sure you are well aware).

That is very interesting @serusaert re: air hunger being another version of pain. I actually was not aware of that and was wondering if you could say more about that (or if I could ask you via PM)?

She says when she breathes it is as if the air is " not getting all the way down".

@anni66 This was my experience for several years and all spirometry and (attempted) PFT tests that I did showed that I had a pulmonary restriction (even though the inside of my lungs are clear on CT scans). I felt as if a tight band or vice was around my shoulders or upper chest and I was unable to take a full breath down to my diaphragm. Since treatment, I no longer have that feeling any more and I was able to get an 84% on a basic spirometry test which is a passing score (my prior scores were upper 60's and low 70's for FVC or "force vital capacity"). I still have POTS/dysautonomia and difficulty breathing when I stand/walk but even this is slowly improving and I can now walk short distances inside of my apt (which I could not do before).

 

[serusaert]

That is very interesting @serusaert re: air hunger being another version of pain. I actually was not aware of that and was wondering if you could say more about that (or if I could ask you via PM)?



@anni66 This was my experience for several years and all spirometry and (attempted) PFT tests that I did showed that I had a pulmonary restriction (even though the inside of my lungs are clear on CT scans). I felt as if a tight band or vice was around my shoulders or upper chest and I was unable to take a full breath down to my diaphragm. Since treatment, I no longer have that feeling any more and I was able to get an 84% on a basic spirometry test which is a passing score (my prior scores were upper 60's and low 70's for FVC or "force vital capacity"). I still have POTS/dysautonomia and difficulty breathing when I stand/walk but even this is slowly improving and I can now walk short distances inside of my apt (which I could not do before).

@Gingergrrl air hunger is generally compared to pain - but as a different but similar kind of sensation. it is very subjective. morphine is used for it in palliative/hospice situations (like my mom's). there is a fair bit of literature on it as it occurs as an end-stage symptom in a number of syndromes (like emphysema).

btw, the info on hyperventilation by @Mark is in agreement with my understanding of the issue. the butekyo technique is similar to the re-breathing paper bag technique in that it also re-balances C02 levels. it does this by slowing down the breathing rate. the butekyo method has, in addition, the ability to help us tone down our breathing reflex by increasing our tolerance of air hunger, and, thus, we are more resistant when air hunger might stimulate us into having too many in/out cycles, thus breaking the feedback loop.

i think that it's important to understand that our bodies do not actually focus on oxygen levels. instead, our body senses the CO2 that is a byproduct of breathing oxygen and this is the crux of the issue. when C02 is out of whack, the body responds as if oxygen is deficient (but it generally is not) and the response of breathing more worsens the problem. so, the reality is that this is mainly a feedback loop issue (for most) and it can be dealt with by any technique that reduces respiration rate. it's not a coincidence that the drug of choice for treating this palliatively is morphine - a drug that is infamous for suppressing respiration.

 

[boolybooly]

Dr Paul Cheney has discussed this as blood alkalosis in ME CFS as a compensatory response to intracellular acidosis and consequent failure to desaturate at tissues due to the alkaline blood pH, so the blood is highly saturated with oxygen but it doesnt get to the tissues.

Clinically it looks like hyperventilation as this purges acidic CO2 and raises the blood pH and causes alkalosis that way, but that is not the cause in ME, though the more you try to breath though the worse it gets and the meditational trick which can help is paradoxoically slow breathing, to raise CO2 in the blood and lower pH, then the O2 is released at the tissues and even though there is more CO2 in your system more O2 gets through.

He says the body loads the blood with bicarb in ME so it can be used to neutralise the inside of cells acidified by abnormal metabolic processes. What I do know is if you eat more bicarb it gets worse.

So I have noticed that taking alkaline supps makes it worse and taking acidic makes it better like ascorbic acid or ascorbates which can act as buffers.

It also helps to reduce purified carb intake and shift the balance more towards lipid and protein and complex carb.

This is just my observation and I assumed it was because the carb produces more intracellular acidic metabolic byproducts. If you shift the metablolism away from pure carb a few percent it improves, doesnt have to be absolute denial, just change the balance in the right direction.

 

[Rose91]

That is very interesting @serusaert re: air hunger being another version of pain. I actually was not aware of that and was wondering if you could say more about that (or if I could ask you via PM)?



@anni66 This was my experience for several years and all spirometry and (attempted) PFT tests that I did showed that I had a pulmonary restriction (even though the inside of my lungs are clear on CT scans). I felt as if a tight band or vice was around my shoulders or upper chest and I was unable to take a full breath down to my diaphragm. Since treatment, I no longer have that feeling any more and I was able to get an 84% on a basic spirometry test which is a passing score (my prior scores were upper 60's and low 70's for FVC or "force vital capacity"). I still have POTS/dysautonomia and difficulty breathing when I stand/walk but even this is slowly improving and I can now walk short distances inside of my apt (which I could not do before).

Would you mind sharing what your treatment was for the restricitive lung pattern? My spirometry results also show this mildly and my doctor is trying to treat me with inhaled steroids which I don’t believe are indicated (or working!). Although I do show reversibility to bronchodilator inhalers which is unusual apparently.

 

[Gingergrrl]

Would you mind sharing what your treatment was for the restricitive lung pattern? My spirometry results also show this mildly and my doctor is trying to treat me with inhaled steroids which I don’t believe are indicated (or working!). Although I do show reversibility to bronchodilator inhalers which is unusual apparently.

I did not have any treatment specifically for the failed spirometry tests or restrictive lung pattern. But I have had a long course of IVIG and started Rituximab which has led to vast overall improvements including my breathing.

I can now "pass" a basic spirometry test but I still show a restrictive pattern (just not as extreme). I have never shown an obstructive pattern and bronchodilators were never of help to me (and I actually do not tolerate them and they made me worse).

We believe my case was auto-antibody driven and the reduction in auto-antibodies improved my muscle weakness, including my lungs and diaphragm, as well as my arms and entire upper body. We cannot prove it but there is really no other logical explanation.

 

[frozenborderline]

hi @Webdog i was reading your post over on the mestinon thread and realized we had a similar onset with respect to the air hunger. i know yours has improved a lot - and mine too, but i wanted to post here about my experiences in case it helps anyone. essentially, this is about the buteyko method.

just after they had ruled out MS and before i realized it had to be CFS (and the eventual diagnosis), i ended up in the ER twice with what i thought had to be tetany due to onset of parathyroid issues - i was hyperventilating, had air hunger, and had intense fasiculations running up and down my body. (i have not had it that bad since those times about a year and a half ago.)

before ultimately getting away from that moldy apartment and starting LDN (both helped a lot), the butekyo method helped me deal with the air hunger and hyperventilation at the time.

the basic technique is insanely simple: work to prolong the time when you are between breaths by doing counting exercises. test your progress by noticing how long before you feel the first air hunger pang when you hold the pause. as the pause lengthens with practice, the symptoms of air hunger and occurrences of hyperventilation should decrease.

be warned that the proponents of the method have over-extended it's use and turned it into a bit of semi-quackery by claiming it cures a whole bunch of stuff, but the core success of the technique is, imo, due to the fact that it really can reduce the occurrence of hyperventilation and air hunger.

btw, my mom died of emphysema and she suffered from extreme air hunger at the end. air hunger is really another version of pain (as i'm sure you are well aware).

Have you found good videos for instruction on this? I did download a pdf on buteyko, but when i'm really tired and in pain, can't read something that in depth. I have tried doing some slow pranayama and bag breathing for similar purpose (increasing CO2/bohr effect) but would like to get more serious about it as its something i can do from bed if i get taught how