This is an old thread but SO relevant to me!
I have multiple breathing problems:
Since I was a kid, I have this barking, tight cough when triggered by a cold, allergy (inc food), perfumes, or reflux. My throat will swell to the point that I can't talk. I also produce a huge amount of 'gunk' in my lungs during an attack, much like asthma. However, I can exhale 150% of the normal volume on a good day, and about 80-90% during a mild attack. My allergist said that 80% does not constitute asthma. He says it's more like an overly sensitive muscle spasm in my upper airway. I take Symbicort (long acting reliever plus a steroid) every day. My daughter has exactly the same - sounds identical. She has been diagnosed with asthma. My son has been diagnosed with asthma too - different sounding cough though. None of us wheeze. We all take preventer and reliever inhalers and they really help to reduce the length of a cough after a cold. I used to regularly get bronchitis, but after quitting smoking for 20+ years that seems to have largely gone away
although, now I think it may have really been the upper airway sensitivity and not bronchitis half the time.
A couple of people mentioned that they wake up in the middle of the night with a choking feeling and coughing, it may well be reflux - it's very common time for it to happen.
If I lie on my back it feels like I can't breathe, and have to force it, especially if my neck isn't fully supported. At other times it feels like I'm craving cold, pure air, that my lungs just can't get a deep breath. Doesn't happen at particularly emotional or stressful times, just seemingly randomly.
I get attacks (presumably migraine) where I get a weak chest muscle - I get so tired I have no option but to lie down and I feel like I have to force every breath.
When I had an EEG, they got me to hyperventilate after which I totally forgot to breathe - guess my body had enough oxygen already. I also had some weird results on the EEG from the hyperventilation. Same after I've inhaled oxygen - my chiropractor measured my O2 saturation levels last night and they were a little low, and he gave me some O2.
Sometimes my heart races then "stumbles"; until it starts again I seem to have no air in my lungs and end up having to take a huge gasp once my heart starts beating normaly again. I've tried to ignore it and carry on a conversation but I literally ran out of air and couldn't speak until my heart caught it's normal rhythm again.
I wonder if a pulmonary specialist have ever investigate EDS? Was there anyone at any of the EDS or similar conferences?
Diagnosed EDS - Hypermobility 2004. Severe Hemiplegic Migraines. Both kids show hypermobility but haven't been tested.
A Scot living in Canada