hi @dovey, I read through your posts and can relate to so much of it. I went through a period of about two years where I wondered how I was going to deal with this for the rest of my life. So it brings you any consolation, I have found ways to manage it and can function day to day with periods of ups and down, but it's been fairly stable. This was back in 2012. I'm in my mid 30s now.

I remember trying as hard as possible to resist the urge to take a deep breath or yawn every time I felt the need to. After about 2 days of resisting as much as possible, the breathing problem went away entirely. It came back about a year later. Then more breathing exercises and exercise helped it go away again for another year. Then, as you described, I would push myself with exercise and one day pushed myself too hard in 2017, then it came back and has remained ever since, though it's been manageable through breathing exercises.

I didn't see in your posts if you had done any research on breathing exercises. Have you looked into any? Also, have you had any bloodwork done to test for nutrient deficiencies?

Hang in there...it's a journey but together I think we can make progress in helping each other and many people manage and maybe one day cure this issue!

Hi Dovey,

I read all your posts. Thanks for sharing! . We have a similar but also different issue going on here. I have done a ton of research as well and I have pages full of Google Docs. I have seen doctors both at the University of Utah where I live and more recently, the Mayo Clinic in Arizona. I am going to the National Jewish in Colorado and continuing to do whatever I can until this mystery is solved.

Would you be open to speaking one on one? I am looking to talk to people one on one and brainstorm things. I feel like this is more effective than writing on this thread (even though this thread is very helpful).

I will DM you and we can go from there. But Basically I have the same thing.. Mine goes as follows: (I am copy/pasting this from my google doc)

What does it feel like?

Every few minutes, or every few seconds (especially during an “episode”), I start getting this sensation that I am not getting enough air in. I don’t know how to describe it, except that it is a sensation that tells me I need to yawn, or take a deep breath. Then, I try to take a deep breath, a really deep breath where I can feel my stomach and to a smaller extent, my chest rise and then fall. (I am a diaphragmatic breather). Then there is a millisecond between the inhale and exhale where I can feel as if the air went all the way down into my belly. And then I let out a strong exhale, which can sound like a sigh. This satisfies my breath for the time being and then the cycle repeats, minutes later, sometimes seconds later. Sometimes not until hours later. This can be accompanied by tightness in the throat, which massaging it can help a little.

However, The scariest thing is when I am having an “episode”, and I try to take a deep breath, it doesn’t always satisfy the feeling or help relieve the tension. Then I will try again and it still won’t satisfy. This is where I need to keep calm and breathe in my nose and out my throat. Eventually I will get a breath in and I will shudder or feel a huge relief but also it scares me. In this case, I usually try to lay down with two pillows and try to distract myself with something else or meditate and calm down. I can’t always calm down (so I wonder if it is anxiety related).

And in rare instances, the sensation goes away but then I start feeling like I am no longer breathing. And I know this because I am still not satisfying a deep breath, but the urge to take a deep breath or yawn goes away. This is also where I have felt like passing out in the past, but this is very rare. I try to then force a yawn or deep breath but it doesn’t help. I try to lay down and breathe calmly and this kind of helps. Eventually it just resolves.

This sensation can also happen as I am falling asleep and I will get scared, but I have monitored my O2 through the night before, and it stays above 90 almost the whole time. So I need to remind myself it won’t kill me.

During the poor air quality winter days of 2022, I had this above sensation a lot and I couldn’t satisfy. I would keep trying and I can feel how the abnormal breathing took a toll on my muscles, even in my back, the muscles would ache because I was doing this constantly. I couldn’t make it stop

Basically it all started in 2013, got better from 2014-2021 and came back with a vengeance in Nov 2021. in 2013, it started after I cut pressure-treated lumber (I was warned never to because it has chemicals in it that can ruin your lungs).

I want to add that I recently have been diagnosed with Tourette's Syndrome (on 2/14/22). Also, recently I have been having this painful abdominal spasms, usually after I get a deep breath in and then exhale.

I have a friend who experiences what you describe. She is very concerned too. She is 75 years old. Her doctors have not been helpful and are constantly telling her it's just anxiety. She strongly believes that is not the answer. Please hang in there and keep researching! You are not a lone ranger with this affliction.