Mysterious shortness of breath: What has helped you?

Hi @christmaseveryday, I know how you feel! Sorry about your mom. Does any deep breath satisfy the feeling of a need of air? In other words do you get the satisfying feeling every so often, or do you never get the satisfying feeling even with yawns?

Hi Gabe, yes I get a satisfying deep breath about 1 in every 5-8 attempts. It is such a strange experience because after so many failed attempts I am not sure how I keep breathing. I am exploring a possible connection to a food allergy and using a steroid inhaler. I suspect hormones are involved.

Mayo Clinic won’t allow me to post my full comment, so I will post this in sections:

1/5

Hello,

I have been following this thread on and off for 4 months, and I’ve decided that I want contribute to the collective investigation. The medical field is failing us, so I appreciate that so many of you are stepping up.

I’ll start with the disclaimer that this is long because it is thorough. The only way to solve a mystery is to consider every variable. And that’s essentially what we’re all attempting to do: solve a medical mystery. So, please bear with me while I try to be as detailed and thorough as possible.

I have a long list of medical issues that I’ve typically had to diagnose myself and then confirm with a doctor because my doctors have never taken me seriously. These issues include, but are not limited to, a baseball-sized ovarian tumor, a tiny stroke in the small blood vessels of my left eye that caused a permanent blind spot (this is extremely rare in my age group, and the cause was never determined), interstitial cystitis, IBS, GERD, fibromyalgia, and chronic migraines with aura. Every single one of these conditions was originally diagnosed as “anxiety” because I am a woman. But I became a whiz at amateur medical research and successfully diagnosed myself (with later confirmation from doctors) every single time. I have rarely met a health mystery I couldn’t solve—until this one.

My symptoms began suddenly on the evening of August 10th, 2021. I was sitting in a chair watching television, and I began yawning, over and over again—and I never stopped. Since then, I’ve been yawning excessively every waking moment for the last six months.

The yawning immediately felt strange, and this is very difficult to describe. (I’ve since learned that yawning is still quite mysterious and poorly understood by modern medicine.) But the yawns felt triggered by something different than normal yawns. I used to yawn and stretch maybe once when I woke in the morning, and I would yawn occasionally if I was very tired. These yawns don’t come from a place of exhaustion, and they seemed to be linked to my gut, somehow. I feel pressure and almost a pulling sensation in my throat, a gag reflex, a pressure in my chest near my stomach, and a painful stretching of muscles in my upper back. I’ve told my doctors that it feels almost like I have to burp or throw up, but I yawn, instead.

Yawning is only part of the condition, and that’s why I’m here. At first, all I noticed was the yawning. It wasn’t until the next day that I realized I was short of breath. I’ve been short of breath every waking moment since. I’m in my early 30s, I’m thin, I exercise regularly, I eat pretty well, and I don’t smoke. But constantly, since 8/11/2021, I have felt air hunger. The yawns came first, but maybe that was just my body’s initial response to the sudden onset of air hunger. I feel like I have to take deep breaths or yawn approximately every 15-60 seconds. I feel a distressing sensation of asphyxiation if I don’t, and if I suppress it long enough, I will yawn involuntarily. The yawns came first, but it’s like my body learned how to reach the same “satisfaction” by taking in a huge gulp of air in a deep breath. (A breath so huge and deep and frequent that I have torn the muscles in my upper back, and they are constantly in pain.)

2/5

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.

3/5

TESTS I’VE HAD:

Since this all began, I’ve had a “suboptimal but normal” pulmonary function test, normal chest x-rays, a normal brain MRI (which was performed because the phantosmia can be an indicator of a brain tumor), normal bloodwork, including iron levels, and a normal neck ultrasound (I have hypothyroidism).

TREATMENTS I HAVE TRIED:

-Buspar (Anxiety med. Did absolutely nothing except make me feel slightly more anxious.)
-Amitriptyline (Old tricyclic antidepressant used at low doses to treat many different pain and neurological issues. May have reduced breathing issues slightly, but I was so heavily sedated on a low dose of this medication that I could barely see straight.)
-Klonopin (Benzodiazepine. Improves my mood and make it easier for me to deal with this horrible condition emotionally, but it doesn’t reduce my symptoms much if at all.)
-Flexeril (This is a strong muscle relaxant with a long half life. It is meant to be used short term—about 2-3 weeks, because it stops working over time, and is hard on the liver. I took one at night for two weeks and had the best days I’ve had since this breathing issue began. My symptoms were reduced by 50-75%. Then it stopped working. Maybe it never worked and it was just a coincidence. I’m going to experiment again in the future.)
-Tizanidine (This is a muscle relaxant with a very short half life. I noticed no improvement with this one.)
-Clonidine (This is a blood pressure medication that is also used to treat tics and anxiety. It seems to reduce the frequency and urges somewhat, but it’s also *heavily* sedating. Interestingly, on Clonidine, I have more frequent episodes of feeling like I am suffocating while also being unable to complete a yawn or get a full, satisfying breath. While Clonidine can reduce the urge to yawn and breath deeply, it almost seems as though there’s still some underlying cause that Clonidine can’t treat, so it doesn’t reduce the problem so much as it just hinders my body’s mechanism to cope with the problem. The results have been confusing, underwhelming, and inconclusive, so my doctor can’t conclusively say, based on the results, whether or not this is a tic.)

4/5

POSSIBLE SUSPECTS:

-Tic disorder. I’ve never had a tic before, but some people, including doctors, think that this may in fact be a tic. I’m very curious. However, I sincerely hope that this is not a tic disorder, because tic disorders are so resistant to treatment, and the treatments tend to be strong antipsychotic drugs. The thing about yawning is that normal yawning is very close to a tic, anyway. Like tics, Yawning is involuntary, but can also be suppressed, or forced, or elicited by seeing another person yawn. Like tics, there’s a physical and emotional discomfort that comes with suppression of a yawn, and this can build until it becomes unbearable or the yawn happens involuntarily. Like a tic, when a yawn is suppressed, people tend to yawn more once they finally stop suppressing the yawn. Like a tic, there is a physical and emotional feeling of relief, satisfaction, and even pleasure when the yawn is performed. I don’t know how a doctor could differentiate between a yawn and a yawn caused by a tic disorder.

-Breathing pattern disorder. Maybe getting covid or breathing through thick, N95 masks for two years has triggered breathing pattern disorders in some people. As I understand it, breathing pattern disorders are both physical and psychological, and can be treated or cured by retraining the brain and body.

-An actual, physical lung condition of some kind. I don’t know how this would evade standard testing, but who knows.

-GERD, or something else connected to the digestive system, like a hiatal hernia or gastroparesis.

-Some kind of longterm muscle spasm near or around the lungs and/or trachea and/or esophagus. Muscle spasms of the smooth muscle around organs are possible, and are a major component of IBS. There’s a common misconception that these spasms can only be brief spasms, but the colon can also get stuck in longterm spasms that last for days, weeks, or even months. This is what contributes to the chronic pain form of IBS, IBS-C, and the narrow stools so common with IBS. Maybe something similar is possible near or around the lungs…

-A symptom of some kind of as-yet-unknown neurological disorder OR symptoms of neurological “miscommunication” and “excitability” similar to what is witnessed in fibromyalgia, IBS, or bladder pain syndrome. The burning mouth syndrome and heightened gag reflex are strong indicators that there’s a possible neurological component.

-Anxiety. Of course all of my doctors immediately diagnosed this as anxiety like they do with everything else that ever happens to me. I have really tried to be open to this diagnosis as a possibility. I’ve tried anxiety meds. I’ve been in therapy for months. But every fiber of my being is telling me that this is something else. I have anxiety. I’ve lived in my body with anxiety for 34 years, and I know what it feels like. It fluctuates, it’s influenced by environmental factors and changes in my mood. I’ve experienced panic attacks. I’ve experienced periods of heightened anxiety. They can be pretty crappy, but they don’t persist as constant, unchanging symptoms, impervious to shifts in mood and environment, nonstop for 8 months. They aren’t reduced by a muscle relaxant, or swallowing food. I strongly suspect that there’s more to this than anxiety.

-Depression, emotional trauma, or grief. Once, after my boyfriend broke up with me, I had a lump in my throat for two months, and could barely swallow food. There’s no denying that with the pandemic, we’ve probably all experienced some level of depression, emotional trauma, and grief. I don’t know why it would start randomly, over a year into the pandemic, during a relatively calm period in my life, though.

-Some kind of issue with temperature regulation in the body and/or brain. I have both fibromyalgia and Raynaud’s syndrome, so I already know that poor temperature regulation is a chronic issue for me. Studies suggest that we may yawn to regulate brain temperature. All my life, when I get really tired, my body temperature fluctuates more rapidly, and I can get really hot or really cold, and yawning and shaking tend to accompany this.

-Some kind of neurological sleep disorder, such as narcolepsy.

-Long Covid. Obviously this wouldn’t apply to everyone, but for some people…maybe??

-Nortriptyline or withdrawal from nortriptyline. I began taking this drug for migraines in June of 2021 and stopped shortly before the breathing issues began. It’s an old tricyclic antidepressant, similar to amitriptyline. I suspect that there could be a connection. It is already an established fact that this drug has been known to rarely cause tardive dyskinesia, which is a permanent neurological disorder. There are other psychiatric drugs, like SSRIs such as Paxil, that have been known to cause excessive yawning. I tried Paxil in 2017 and had this reaction. Fortunately, unlike the tardive dyskinesia, it’s not permanent, and stops after the drug is discontinued. I’m not a medical expert, but I’m just saying that maybe it’s within the realm of possibility that, for some of us, this condition could be drug-induced.

-On that note, and I *really* hate bringing this up because I’m DEFINITELY not an anti-vaxxer, but maybe we shouldn’t completely rule out the covid vaccines as a possible cause. I got Moderna, for reference.

5/5

I’ll end this by explaining why I’ve devoted so much time and energy to describing, researching, and trying to understand this issue. It’s not because I’m crazy or a weirdo who loves to waste days of their life reading through medical studies online. I’m doing this because this condition is HELL and it’s absolutely imperative that I figure out what on earth is happening to me so I can stop it.

I’m so overwhelmed by this condition. It is utterly brutal. Physically. Emotionally. I have TMJ and was born with an abnormal jaw joint. Every yawn is agony and puts stress on my jaw joint. I’m worried that it will destroy my jaw completely over time and I will no longer be able to talk or chew food. It has also taken a serious toll on my mental health. I’ve begun seeing a therapist and a psychiatrist because this issue is so disruptive and debilitating that suicide has become a viable option for the first time in my life. I already deal with so many awful chronic health and pain issues on a daily basis. Like interstitial cystitis, for example, which is chronic, incurable, treatment-resistant irritation of the bladder that feels like a raging bladder infection that flares for months at a time. It is so painful that IC patients consistently rate a worse quality of life than people on dialysis. And yet, it doesn’t compare to this breathing issue. Nothing has been more detrimental to my quality of life than this chronic breathing problem. Nothing has left me with suicidal ideations for months at a time, before. And doctors just brush it off like it’s NOTHING. Like I’m just being paranoid and noticing my breath more, or something.

For me, this has become a life or death situation. I must find a cure or effective treatment, because I cannot live the next 40 years of my life this way. It is unbearable.

I hope that you will continue to stay in contact.

Yeah that was my experience too. A satisfying breath ever few breaths but my breathing in general seemed to function normally, just not always having that satisfying feeling. Have you looked into any kind of breathing exercises? That's how I manage my condition, along with moderate exercise. Are you able to do physical activity?

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!