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LIST OF SPECIFIC DETAILS ABOUT MY CONDITION:

Here are some important factors that may help differentiate between similar but slightly different breathing problems that we’re experiencing:

It feels like a physical issue that worsens with activity—until it doesn’t. I’ll explain what I mean: I have trouble just walking because the shortness of breath is so bad. But if I walk faster, like 3 mph uphill, and work harder, there’s a point where it almost feels like I can “push through” the sensation, and I feel the normal shortness of breath that one would feel with significant physical exertion, like jogging. This is one of the only moments where I feel like my lungs are working normally. But maybe I’m not, really, because I’ve also noticed that I struggle to catch my breath after working out (or just walking) now, too. And usually I have to lie down afterwards.

I’ve been tracking this for eight months, and I’ve noticed that my symptoms seem to worsen the week of my period.

I experience the shortness of breath when I’m talking. This actually seems to be getting worse with time. It’s getting harder and harder for me to hold a conversation, because I’m gasping for air and feeling that gag reflex sensation in my throat like I’m going to burp or vomit (and yawning instead). Laughing also feels terrible. I feel this physically sickening emptiness in my lungs when I laugh, and it gives me significant anxiety. This yawning “disease” or whatever it is is literally sapping every ounce of joy from my life and destroying every formerly pleasant experience.

I experience shortness of breath before I’m even conscious. I don’t think this is something that just affects me in my waking hours. The first thing I experience in the morning, while I’m still dreaming and not yet even conscious or aware of my surroundings, is that familiar feeling of suffocation and the deep, gasping breaths that it elicits. In other words, before I’m fully awake, I’m breathing as hard as I can. I wake up with my upper back aching, like I’ve been taking those huge gulping breaths and yawning during my sleep.

Conversely, I’ve noticed that once I lie down and begin to fall asleep, my yawning/deep breaths stop and the sensation of suffocation disappears. It’s almost like the hormones my body releases as I transition into sleep can interrupt whatever is causing this chronic breathing problem. However, as we fall asleep, our breathing pattern changes naturally, so it’s possible that it’s just the change in my breathing pattern that interrupts the symptoms. I have noticed that if I lie completely still and peaceful, like one would if they were about to fall asleep, and make no physical exertion whatsoever, my breathing becomes normal. But, the moment I shift my weight, or scratch an itch, or do anything that requires the slightest movement or physical (sometimes even mental) exertion, I’ll feel the shortness of breath again and will need to take a deep breath or yawn. That, to me, suggests that the shortness of breath is real. Right? It’s shortness of breath with physical exertion. I don’t know, lol.

Since this began, I only have temporary episodes where I experience the familiar sensation of needing to frequently yawn or take a deep breath *but also* being UNABLE to “complete” the yawn or satisfy the deep breath. This is something that y’all have mentioned here, too. For me, it is linked to my symptoms, but it’s intermittent. It tends to happen when my symptoms are flaring really badly, and my deep breaths or yawns are faster and more frequent. These moments used to happen more frequently when my condition first began, and they were the MOST distressing, because it truly feels like you’re suffocating to death. I’ve learned over time that I can usually manipulate my body to expand my lungs more and achieve the full deep breath. If I bend forward, put my hands on my knees, round my back, and draw my shoulders forward, I can take a full breath and relieve the feeling of suffocation (for about 15-60 seconds before I have to do it again, of course).

I developed GERD in 2018 and started having brief episodes of shortness of breath after eating. They felt distinctly different from what I’m experiencing now. There was no urgent need to yawn or breath deeply. It felt more like bloating that was pressing on my diaphragm, and when it happened, I coped with controlled breathing.

However, I can’t rule out GERD as a factor. I had a chronic GERD cough on and off for 4 years. I treated it with Pepcid until I had a very bad flare in January of 2021, and had to switch to proton pump inhibitors. The cough disappeared after a few months of treatment. But the last meal I ate before my breathing symptoms began was barbecue, which I eat very rarely because it usually sets off my GERD worse that almost anything else.

What is more, yawning and deep breaths are not the only things that temporarily relieve this feeling of shortness of breath. Swallowing food or liquids is even more effective. My symptoms are temporarily reduced when I eat or drink, and don’t return to full strength for a minute or two afterward.

The week before my symptoms began in August, my sinuses closed up completely one night. (And I’ve been struggling with this ever since.) I kept waking up throughout the night, gasping for air because I couldn’t breath through my nose. I began feeling slightly “off” that week. I remember noticing during a physical therapy session, that I felt like I was unintentionally holding my breath. These may have been subtle indicators of some problem brewing.

Speaking of physical therapy, the reason I was doing PT was that I had an ankle injury at the time. This could be relevant because my normal routine had been disrupted by this injury, and I’d been wearing a boot and mostly unable to walk for over a month when my breathing problems began. (I know what you’re thinking, and my d-dimer was normal, so there’s no indication that my breathing issues are related to a blood clot.)

In December of 2020, I began having episodes of phantosmia (olfactory hallucinations), where I smell overpowering cigarette smoke for about 10 days approximately once a month. This has been attributed to a rare form of migraine, but it doesn’t respond to migraine medication, so no one’s completely sure yet.

In the months since this breathing problem began, I have also developed a chronic burning sensation all over the inside of my mouth, my throat, and my tongue. My lips and nose also tingle and buzz with a tiny vibration sensation. These are typically neurological symptoms known as Burning Mouth Syndrome. Similar symptoms have been reported by people with long covid, but I am almost certain that I’ve never had covid. I’m triple-vaxxed (Moderna), I work from home, live alone, and have been wearing perfectly-fitted NIOSH-certified N95 masks every time I leave my home since March of 2020. Almost all of my relatives have gotten covid at this point, and they’ve either died (Alpha, pre-vaccination) or had very noticeable symptoms (Delta and Omicron, post-vaccination and booster). I haven’t had a noticeable virus since fall of 2019, and, given my genetics, it’s unlikely that I’d have an asymptomatic case of covid.