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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: May 27 5:58pm | Replies (3353)

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@anrw2018

That is how it is for me - I am so tired of it!

Started when I was around 15, I would be falling asleep and then suddenly jolt awake, sit up and gasping for air. Sort of like my body just forgot to breathe. It would come and go, not much pattern to it. Usually at night. It’s definitely worse when laying down, not quite as bad when sitting up, better when standing and able to brace myself.

On bad days, it’s constant. I feel like I can’t get enough air, I try to force a yawn, take deep breaths, it’s always *just* out of reach. It’ll last about 6-10 minutes of not being able to catch my breath, then it’ll suddenly happen. Sometimes a big yawn, sometimes just a breath, sometimes it’s like I hold my breath for a second at the end of inhaling. And I’ll be ok for a few seconds, then it starts all over again. When it goes on for a while (like it’s been 5+ minutes and I’m restrained in the car), I have some akathisia. Sometimes, it feels like I have too much air in my lungs; sometimes, not enough.

And eventually, I’ll wake up in the morning and I’m fine. For months, sometimes. Until suddenly, I’m not anymore.

It wears me out to be breathing so deeply all day long, and nights are worse. This last time, I started taking ambien at night. Doesn’t do anything for my breathing, but it usually knocks me out enough that I can sleep. Otherwise, I’m up all night.

I’ve seen cardiology, pulmonology, allergy, otolaryngology, urgent care, primary care, emergency room... nothing. Pulmonary function test, O2 says, EKG, echocardiogram, blood work...all normal. Sleep study showed minor apnea, but I lost weight and that stopped.

I’ve tried inhalers, allergy meds (I do have some allergies, and I’ve noticed when it’s bad at night, my nasal passages feel very swollen), benzodiazepines. Emergency room said it was anxiety/panic, except it happens when I’m feeling fine otherwise. Also? I am a psychologist. These weeks-long episodes absolutely do *not* meet criteria for panic attacks or anxiety. But I tried everything, including the benzos. Nothing.

I see a lot of suggestions. The one that fits the most symptoms is silent reflux - I do have a chronic “cough,” feel like there is a lot of mucous in my throat (I don’t actually cough it up), clear my throat often, have post nasal drip...But I have lost weight, and I wasn’t overweight when started when I was a teen.

I’m in my 40s now, I’d love some answers. Any recommendations on where to start?

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Replies to "That is how it is for me - I am so tired of it! Started when..."

@anrw2018- I suggest that you see a Gastroenterologist for decisions concerning your stomach. Make sure that your tests are from specialists. II would also make sure that you have a CT scan of your lungs. There are so many reasons for SOB it's really a hit or miss for early diagnoses.

You might not be aware of inner stress if you are very active and aren't paying attention to your breathing. Do you also have restless leg syndrome with akathisia?

Do you a breathing machine for your apnea?