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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: Oct 23 10:20am | Replies (3405)

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@tahiristan

Hi Gabe,

well 8 years ago, I didn't get much of an answer from Doctors. Fast forward to today, I am having a hard time finding a doctor. They're all so busy. I do have a SLP, so that's nice and I am seeing her again in 2 weeks. So it's not Asthma. I had asthma as a teen/child and when I lost over 100 lbs, my asthma pretty much disappeared. The reason it's not asthma is three fold: 1) inhalers don't work, they make me shaky but that's it. 2) my tightness is always in my throat and I struggle to inhale, whereas Asthma is a struggle to exhale and it's in the chest. 3) I have monitored my Oxygen for over 2 months and not once has it gone below 90. Plus this breathless feeling is constant, that's not Asthma.

I was looking into that specific breathing technique but as I started doing it, it made my symptoms worse. so I will have to try again, but right now it's the worst it's been since 2013. The lumber definitely triggered it but I can't help but wonder if is Psychological.

I want to add that I have Dystonia too. My Dystonia is mostly in my eyelids but it can also be triggered by misuse of certain muscles (like abdomen spasms, or writer's cramp). I saw an SLP 3 weeks ago and she did a Laryngoscopy. I am just upset because when she did that, I was having mild symptom day (just my luck eh?). She said her ENT said that there was no visible Paradoxical Vocal Fold Movement (or Vocal Cord Dysfunction). She then mentioned it could be related to my Dystonia but why would it come on suddenly after that very specific event? Before that, I was a big runner. I would run 4-6 miles 4X a week and never feel breathless. I miss those days. My Dystonia symptoms started in childhood/teens but I went undiagnosed most of my life. It sucks because running, hiking, climbing is my life. It makes me feel better than anything else does.

Anyway, I want to thank you for starting this thread. I looked into CrowdMed and I plan to post my issue there. Did you have any luck on that?

Tahir

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Replies to "Hi Gabe, well 8 years ago, I didn't get much of an answer from Doctors. Fast..."

@tahiristan, I hadn't posted on CrowMed, at least not that I remember. This forum has definitely been the most helpful for me, since I've gotten a lot of response here. I posted on Reddit and another medical forum but didn't get much response on those years back.

I was also a big runner before all this, and I wonder if pushing ourselves too hard might have something to do with it, since I remember having a bad episode back in 2017 right after a hard run. Sorry that the breathing exercises didn't help. I noticed for me to just do as much as my body will allow and not push too hard. The Buteyko method can be tailored to the individual and the breath hold exercises can be done as little or as much as the body will allow.

Do you plan on exploring the possibility of it being psychological? My doctor recently recommended I read a book called "Breathe" by James Nestor. He said it was really interesting so I'm definitely going to pick me up a copy and see if I can learn anything from it. Maybe we just forgot how to be breathe properly, LOL.

Let me know if you get any response from CrowdMed. It'd be interesting to hear of responses from there.