What causes air hunger for me as someone with myasthenia gravis?

You take a deep breath but it gets stuck. So you take several smaller breaths to get it unstuck. It almost seems like you’re hyperventilating, but that would require air to actually go into your lungs.

As your body responds to the attempts to take a good breath, you start yawning.

Finally.

Air fills your lungs as you achieve the deep breath you’ve been trying to take for a full minute. Why have you been trying to breathe deeply? Because you started this whole ordeal feeling short of breath.

This is what air hunger with myasthenia gravis (MG) feels like for me.

As with the disease itself, many contributing factors can lead to air hunger. We’re all different, but following are some of my triggers and experiences.

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What seems to cause it

I notice air hunger more when I’m tired in the evenings — especially on days when I’ve forgotten to take immediate-release Mestinon (pyridostigmine bromide) on my normal schedule. By the time evening rolls around, it’s almost like I’m playing catch-up.

The closer I get to the end of my biweekly infusion cycle of intravenous immunoglobulin, the more I experience air hunger during the day while at rest. I could be walking around the house, sitting in my chair, or lying in bed or on my recliner, and begin to feel short of breath.

Illness is definitely a contributing factor. When I’m sick, I nearly always experience air hunger. One thing I pride myself on is being very self-aware of my mental and physical health. This has allowed me to pinpoint when things hurt differently or when my shortness of breath stems from something besides exercise or physical exertion.

Comparing with other types of shortness of breath

This self-awareness enables me to explain how air hunger with MG feels different from the various other types of shortness of breath I experience.

When my air hunger stems from fatigue caused by lack of medication or proper rest, it starts with excessive yawning that falls short of a full yawn. It’s like the yawn gets stuck in my chest. When this happens, I do a series of small, shallow, breathy yawns in an effort to fill my lungs completely.

Also, and this may sound silly, but if I’m having an exceptionally difficult time getting that full-breath feeling, I’ll shimmy my hips from side to side while sitting.

I don’t know if this little movement helps activate accessory breathing muscles that assist the diaphragm or what. All I know is that I discovered one day that it helped, so I use this trick when I need to.

Air hunger resulting from illness feels different from being tired. My chest feels like I’m getting bear-hugged or wearing a corset. Picture a large balloon being blown up inside a small bottle and pressing against all sides. Now imagine the bottom of the bottle being cut out so the balloon can expand fully. This is the kind of relief and release I feel when I can get that deep breath in.

I also experience shortness of breath from when I was sick with COVID-19 in January 2022. I have what my medical team believes to be permanent lung damage that necessitates me using a daily preventive inhaler for chronic obstructive pulmonary disease and chronic bronchitis. When I don’t use this inhaler, my lungs feel full and heavy, which contributes to the shortness of breath. But it’s a different heavy feeling from the air hunger and being unable to get enough air into my lungs.

Air hunger, I’ve found, often looks like hyperventilation because I’m trying to get air into my lungs. With myasthenia gravis, the sensation of air hunger and feeling unable to breathe is usually caused by weakness in my diaphragm and accessory breathing muscles. The quick breaths I take to compensate look like hyperventilation. In my experience, it’s this physical reaction that has led to a misdiagnosis of anxiety when I’m having trouble breathing and am seeking medical attention.

Staying calm and not panicking, as well as finding ways to adequately describe what I’m feeling, have been the biggest help to me and my care team in treating my air hunger.

Do you experience air hunger? What does it feel like for you? Please share in the comments below.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.