air hunger/shortness of breath

[Scarlett]

I have trouble with gasping for air, short breaths and breathlessness, particularly when I'm going through a bad spell.

My step mother is a cranial sacral therapist and she explained that when your body is under stress it goes into the "flight or fight" response, and your breathing goes up in your rib cage and is shallower to take in maximum oxygen as quickly as possible. She said if I am breathing shallowly as normal it's sending a message to the brain that my body is under stress. She explained about how new born babies breathe from their stomachs, pushing the diaphragm out, and it sends a message to the brain that they are relaxed and safe, and that this is the natural state for when you sleep.

If you concentrate to take some breaths with your hands on your stomach, and you feel them go up and down, it calms the system down. I've been doing these breathing exercises for the past couple of weeks and it's made a significant difference to my general condition I think, I have certainly felt a lot less anxious too. I can't breathe like this without concentrating at the moment, but being aware of my breathing all the time and trying to breath from the diaphragm as much as poss seems to have helped.

 

[Carrigon]

I get this alot and I'm advanced lyme. The POTS also gives it to me. I have trouble breathing just trying to put my clothes on. It's an awful thing.

 

[Anika]

Hello Tammie,

I just came across this thread, and I don't have any more suggestions from my own experience - breathing exercises and addressing the orthostatic intolerance issues have been the main things I've tried. I've tried Benadryl for allergic symptoms, not breathing, but that's a good thought.

Which leads me to a question - you mentioned you also used your inhaler - which I tend to think of as for asthma or respiratory infections. So I wonder if that's what you're inhaler is for, and if it provides relief for some breathing problems? I'm curious because the first time I used an inhaler was for a severe respiratory infection - and there were two different types, one was supposed to be fast acting, and one was more anti-inflammatory, which I needed for while after the main symptoms from the respiratory infection cleared up.

Some recent episodes I've had with breathing feel a bit more like it might be lungs instead of the usual - but I'm not sure how to tell. It does feel like I can draw air in, but am not getting the oxygen from it. Something I'll have to bring it up at my next Dr visit. Maybe an inhaler would help.

And I do remember some episodes of feeling I needed to consciously breathe - and it was rather unnerving, but definitely as you said, not resulting from panic. It took too much concentration to breathe to panic afterwards, although after a bit I wondered if I needed to start panicking! Something I'd forgotten about, gladly. I hope you haven't had that symptom again.

Anika

 

[susan]

What you are explaning is peculiar to CFS. Ii will be ever grateful to the Gupta program for starting me on a new path with my breathing. I too was stopping breathing....holding my breath. I was breathing 23 breaths per minute while my husband was doing the healthy 10 I did a Buteyko home course and the breathing they teach allows you to throw away inhalers.

I have now switched to Pranayana breathing. When I wake in the morning I lay there and just concentrate on breathing sloooooowly for about 40 mins. Buteyko says it takes time for the breathing part of the brain to catch on....to "get the new idea of breathing" i just sit and breathe for hours now as it has becomes a habit. When you shallow breathe you use up magnesium.
All us CFSers have adrenaline overload, so shallow breathing is getting us ready for an adrenaline response...like there is an emergency. With breathing exercises, this slows considerably. I have worked so hard to achieve this and is one of the most important keys to getting well as it turns down the sympathetic nervous system and lets the parasympathetic system take over which is the calming one and allows detoxing system to happen.......less carbon monoxide to pollute ourselves.

 

[Luke]

A very simple technique I've found useful for these kind of symptoms is to touch the tip of your thumb to the tip of your ring finger ( can be done with just one or both hands), or to wrap the fingers of of one hand around the ring finger of your other hand.

These techniques always calm and deepen my breath and incease my sense of oxygen satiation. I was taught this by someone who practices Jin Shin Jyutsu who said she used it to increase her oxygen intake so she could outwalk her teenage sons.

I've also found the breathing technique below that's recommended by Dr Cheney to be helpful. It's supposed to make our bodies think we're at a higher altitude and improve oxygen transportation, link to full article here.


1,Inhale through your nose for four seconds
2,Hold your breath for seven seconds
3,Exhale through tightly pursed lips, creating "back pressure," for eight seconds.
4,Do this eight times, twice a day, everyday.

 

[Lotus97]

Sometimes when I'm short of breath I am able to breath slowly and take in a lot of oxygen, but it doesn't feel like I'm able to take a deep breath. It's as if the air isn't actually getting into the places where I need it. I don't know if this makes sense and do other people experience this too or is it something different that what's being discussed here?

I find that being exposed to certain smells causes shortness of breath for me. These include fragrances (both natural and synthetic), lighter fluid from BBQs, and cooking smells (onions, collards, beans, popcorn, and many other things). I find that even if I can't actually "smell" these smells they still affect me. I get short of breath sometimes and don't know why, but then I open the door to my room and realize my parents have been cooking something.

In another thread about shortness of breath, Rich mentioned that mitochondrial dysfunction and glutathione depletion could be a cause. I know some people with MCS get relief from their symptoms from taking nebulized glutathione. There are better ways to raising glutathione besides taking glutathione, but this would go along with his theory. I was reading that you can get a prescription for an NAC inhaler which might be better than taking glutathione itself although there are still better ways to raise glutathione such as through methylation and improving mitochondrial function as Rich says.

Here's another possible mechanism for air hunger in ME/CFS:

The respiratory center in the brainstem regulates the rate and depth of breathing for the body by monitoring the level of CO2 and the pH in the blood it receives. If CO2 drops, it slows and shallows the breathing, so that less CO2 is exhaled, and that normally brings its level in the blood back up to normal.

In ME/CFS, there is mitochondrial dysfunction in the skeletal muscles and the heart muscle. These represent a large fraction of the body's total cellular mass, and they normally produce a large fraction of the CO2 produced in the body. Because of the mito dysfunction, their production of CO2 is decreased in ME/CFS, lowering the CO2 level of the blood in the general circulation. The respiratory center tries to raise it by slowing and shallowing the breathing, but it does not come up as readily as normal, so the breathing remains slower and more shallow than normal. During sleep, the breathing sometimes stops (sleep apnea). Some PWMEs say that they have to "remind themselves to breathe" even while they are awake.

The shallow and slow breathing also results in a lower oxygen level in the circulating blood.

The problem with this is that all organs of the body are served by the same circulating blood, but not all have mito dysfunction. So the ones that still need oxygen at a normal rate, including probably the brain for the most part, are not able to get enough. I think this is what produces the sensation of shortness of breath.

I think that the longterm solution is to correct the mito dysfunction in the muscles, and the way to do that is to lift the partial block in the methylation cycle, which will raise glutathione and lower the oxidative stress, so that the mitochondrial can operate normally again.

Best regards,

Rich

 

[Cynthia Robins]

Sometimes when I'm short of breath I am able to breath slowly and take in a lot of oxygen, but it doesn't feel like I'm able to take a deep breath. It's as if the air isn't actually getting into the places where I need it. I don't know if this makes sense and do other people experience this too or is it something different that what's being discussed here?.

I'm having the same experience exactly - I feel like I need to take a deep breath, but I can't get the air to go all the way in. After about six or seven tries, sometimes it works; sometimes yawning helps. I have noticed that it's much worse if I have done too much and brought on other symptoms. Went out for a little bike ride on Saturday and definitely went too hard - been having my flu-like symptoms ever since and my breathing is horrible. Not sure if that's what folks mean by "air hunger," but, Lotus, I definitely understand your description.

 

[Susan Murphy]

Ok, something new and really bazaar to add to the breathing issues....last night I woke up and it felt like the involuntary action of breathing had become voluntary (& extremely difficult).....I know this sounds nuts, but it was seriously like my body was refusing to breathe unless I told it to and even then I had to really struggle to get my lungs to take the air in and to let it back out - and I could only manage that when lying on my back (which is really uncomfortable for me, but on my side it felt like I was suffocating & I was too tired to sit or stand)....this is not sleep apnea or anything that I have heard about before....was unbelievably scary, though.....got up and used my inhaler and took Bendryl (thinking it could be an allergic reaction and even if not, the benedryl could help with the panic I was starting to experience - note that the panic came AFTER the breathing problems started - this was not a panic attack- I am fortunate not to have those, but my counseling degree did teach me what they are like, so I would recognize one)....I tried to distract myself by reading, thinking that focusing on it was making it worse and if I wasn't paying attention, breathing would become automatic again....it didn't work....went on for a few hrs before finally subsiding enough I was able to go back to sleep.....seriously it almost felt like my lungs were just too exhausted to work rt

I have this same thing with my CFS. Heat is the main instigator. I have also had it bad since menopause began 3 months ago. My heart rate is always slow during these times, so it is NOT anxiety! Since perimenopause began, I have had no noticeable adrenaline. I believe the shortness of breath is due to low epinephrine. Is your heart rate low when you start these episodes?

 

[Susan Murphy]

What you are explaning is peculiar to CFS. Ii will be ever grateful to the Gupta program for starting me on a new path with my breathing. I too was stopping breathing....holding my breath. I was breathing 23 breaths per minute while my husband was doing the healthy 10 I did a Buteyko home course and the breathing they teach allows you to throw away inhalers.

I have now switched to Pranayana breathing. When I wake in the morning I lay there and just concentrate on breathing sloooooowly for about 40 mins. Buteyko says it takes time for the breathing part of the brain to catch on....to "get the new idea of breathing" i just sit and breathe for hours now as it has becomes a habit. When you shallow breathe you use up magnesium.
All us CFSers have adrenaline overload, so shallow breathing is getting us ready for an adrenaline response...like there is an emergency. With breathing exercises, this slows considerably. I have worked so hard to achieve this and is one of the most important keys to getting well as it turns down the sympathetic nervous system and lets the parasympathetic system take over which is the calming one and allows detoxing system to happen.......less carbon monoxide to pollute ourselves.

 

[Susan Murphy]

You mentioned that all of us cfsers have adrenaline overload. This is not true! I used to have too much adrenaline at times, but I don't have enough now. When I have air hunger it's because I don't have enough adrenaline! My heart rate is slow and weak during these times. Adrenaline is what expands the lungs.

 

[Horizon]

I also experience air hunger, SOB and I attribute some of it to my reflux because when that's better so is my breathing, same with iron levels. Otherwise i really don't know why else I have it? Would a Dr prescribe oxygen therapy to see if it helped? I'd love to be able to have a pure oxygen inhaler to take a whiff here and then but that probably sounds nuts.

 

[me/cfs 27931]

I posted this on a related thread, and I hope it might be helpful here as well.

From the American Thoracic Society:

Update on the Mechanisms, Assessment, and Management of Dyspnea

It mentions quite a bit about air hunger throughout the document. It certainly was interesting for me to read after having been told by at least 5 doctors over the past decade that my air hunger symptoms couldn't possibly be real.

 

[Gingergrrl]

@Webdog I cannot remember if I already thanked you in the other thread but the article you posted from the American Thoracic Society was very helpful and I read it and even showed it to one of my doctors. Thanks again for posting it the link.

 

[Horizon]

I skimmed through and its interesting that opioids can help air hunger in some patients? What about anti anxiety meds that depress the respiratory system? If you are more at ease, and more sleepy you likely don't need as much. I just took some klonopin to see if it will help my air hunger now.

 

[Gingergrrl]

I skimmed through and its interesting that opioids can help air hunger in some patients? What about anti anxiety meds that depress the respiratory system? If you are more at ease, and more sleepy you likely don't need as much. I just took some klonopin to see if it will help my air hunger now.

My issue is not "air hunger" per say as much as that I cannot inhale a full breath due to a pulmonary restriction that we now believe is neuromuscular (plus my autonomic problems.) Any standing/walking leaves me completely breathless as if I'd run up a flight of stairs and pushing it leads to spasms and chest pain. It is my #1 problem (short of severe MCAS flare-ups with anaphylaxis.)

In any case, I tried Klonipin in the past both for insomnia and as a mast cell stabilizer (believe it or not benzos are often used as mast cell stabilizers b/c they reduce mast cell degranulation) but it had absolutely zero affect on improving my breathing. I stopped taking it over a year ago as a mast cell stabilizer when I found better meds for this. But we are all so different, I do not know if it might help someone else with breathing issues.

However, on the flip side, opiates greatly improve my breathing. Not to the point that I could stand and walk without a wheelchair or even close, but they allow me to transfer from wheelchair to bed/table/toilet, etc, without dyspnea and make it easier to breathe taking a shower with shower chair, make it easier to talk for extended periods of time, etc, and reduce the actual pain and weakness that I feel in my lungs. And I am talking a very low dose like 1/2 of a Norco 5/325.

My doctor said this is a well known mechanism (even though I admit I do not understand it) and opiates are used to improve breathing in someone who has had a heart attack or for hospice patients (for the breathing aspect, not for the pain.) This doc supported me and was thrilled that anything improved my breathing and said I can take up to 1/2 pill 3x/day for dyspnea. So far I have not needed to do this and taking 1/2 pill 1-2x a day is enough. Otherwise, it is often challenging just to transfer from the wheelchair and I am more of a risk of falling vs. with it, I can breathe better and my lungs feel stronger with less pain and less risk of falling from muscle weakness.

I took them initially for severe period cramps and thought I'd discovered a new mechanism unknown to science when it helped my dyspnea but my doc assured me that it was well-known and not new! I hope to understand this mechanism better in the future.

I realize it is a palliative care measure to reduce suffering and not a cure. I am about to try another treatment very soon that we are hoping can improve some of my autoimmune issues which may be the cause of my breathing weakness (in addition to the dysautonomia and MCAS) but I feel that they are all related. I am posting this in case it can help someone else down the line.

I do not have traditional fatigue or PEM no matter how much I try to put myself in that box but am completely disabled by the breathing issues which continue to worsen at an alarming rate.

 

[Susan Murphy]

I also experience air hunger, SOB and I attribute some of it to my reflux because when that's better so is my breathing, same with iron levels. Otherwise i really don't know why else I have it? Would a Dr prescribe oxygen therapy to see if it helped? I'd love to be able to have a pure oxygen inhaler to take a whiff here and then but that probably sounds nuts.

Lol, you definitely don't sound nuts. If we were "nuts" we could all just take a pill and be better! Oxygen would not help because you are not lacking oxygen. When I had to go to the emergency room a few years ago for something unrelated, I was given oxygen because I said I was sob. My oxygenation was great before getting the oxygen and great after. I received no relief from the air hunger. For me, air hunger happens when cortisol is high and adrenaline is low. Tests support this theory. An integrative doctor at mayo said air hunger happens because of a predominate sympathetic nervous system. So the sympathetic nervous system needs to simmer down or the parasympathetic nervous system needs to increase. If you look on health rising.com, cort Johnson talks about research pointing to cfs as resulting from a predominant sympathetic nervous system. Stimulating the vagus nerve activates the parasympathetic nervous system. They talk about transcutaneous vagus nerve stimulation, which involves the ears. There's also an autonomic specialist, dr arata, that resets the autonomic system. So eliminate caffeine and anything else that may raise cortisol and maybe add supplements that lower
Cortisol. I can tell you about the "resetting" breathing exercise mayo told me about that transforms one from fight or flight to rest and digest if you would like.

 

[Horizon]

Lol, you definitely don't sound nuts. If we were "nuts" we could all just take a pill and be better! Oxygen would not help because you are not lacking oxygen. When I had to go to the emergency room a few years ago for something unrelated, I was given oxygen because I said I was sob. My oxygenation was great before getting the oxygen and great after. I received no relief from the air hunger. For me, air hunger happens when cortisol is high and adrenaline is low. Tests support this theory. An integrative doctor at mayo said air hunger happens because of a predominate sympathetic nervous system. So the sympathetic nervous system needs to simmer down or the parasympathetic nervous system needs to increase. If you look on health rising.com, cort Johnson talks about research pointing to cfs as resulting from a predominant sympathetic nervous system. Stimulating the vagus nerve activates the parasympathetic nervous system. They talk about transcutaneous vagus nerve stimulation, which involves the ears. There's also an autonomic specialist, dr arata, that resets the autonomic system. So eliminate caffeine and anything else that may raise cortisol and maybe add supplements that lower
Cortisol. I can tell you about the "resetting" breathing exercise mayo told me about that transforms one from fight or flight to rest and digest if you would like.

Yes, that would be great. I think I'm always in panic mode and need to learn to relax.

 

[Susan Murphy]

Yes, that would be great. I think I'm always in panic mode and need to learn to relax.

This breathing exercise was suggested by dr bergstrom at mayo clinic. You can download a 15 minute meditation ap from mayo clinic to help pace your breathing. Start by breathing out to a count of 5, forcefully, then pause for a moment, then breath in to a count of 5 as much air as you need to feel not short of breath, then pause for a moment, and do it again. Breath air into your belly, not your chest. Start the process by breathing out. I think you should try to have 6 breaths or less. Do you take a good quality fish oil? It's suppose to lower cortisol. Do you have cfs or fibro? I have cfs with virtually no pain.

 

[Horizon]

This breathing exercise was suggested by dr bergstrom at mayo clinic. You can download a 15 minute meditation ap from mayo clinic to help pace your breathing. Start by breathing out to a count of 5, forcefully, then pause for a moment, then breath in to a count of 5 as much air as you need to feel not short of breath, then pause for a moment, and do it again. Breath air into your belly, not your chest. Start the process by breathing out. I think you should try to have 6 breaths or less. Do you take a good quality fish oil? It's suppose to lower cortisol. Do you have cfs or fibro? I have cfs with virtually no pain.

Thank you. Do you know the name of the app? I find breathing exercises hard not only because i feel i can't inhale enough but also hard to get my mind off of stuff. I'll try it though.

 

[Susan Murphy]

Thank you. Do you know the name of the app? I find breathing exercises hard not only because i feel i can't inhale enough but also hard to get my mind off of stuff. I'll try it though.

I think it's called mayo clinic meditation. It's purple! Try doing the breathing part without shutting your mind off, perhaps while watching tv. Have you had cortisol testing while your breathing symptoms are bad?