Back in May of this year i was sitting up and realized i could only take a very shallow breath will sitting on the sofa.
I then came to the realization that if I lay on my back or bring my knees to my chest my breathing literally STOPS. I am frequently out of breath through out the day as well. This is even while being on Spiriva, Symbicort, a nebulizer and combivent as a rescue inhaler. The slightest physical exertion leaves me winded. I have taken many tests including but not limited to: Pulmonary function test X2, Blood work X2, a heart echo, a stress test, an at home sleep study, Lung x-ray (2 kinds), a diaphragm x-ray, a CT scan of my abdomen and most recently went to see an ENT. All tests have come back normal with the exception of my pulmonary function(I breathe similar to a man in his 80's . . . I am 32) and my at home sleep study shows "moderate to severe sleep apnea" They sent me a CPAP which is very restrictive even with the smallest mask. I feel like i am suffocating with it on and even on the lowest setting i cannot put enough pressure to breathe back into the machine and as a result it forces my mouth open and drys me out. i am a light sleeper to begin with. If I can't use the machine what am I supposed to do? I am getting desperate. Does not make since to me to use a machine to help me breath when sleeping if I can't sleep while wearing it. Please help.
The most basic information that I derive from your message is that you have shortness of breath with minimal exertion or even at rest and that you have abnormal pulmonary function tests. The good news is all the normal/negative testing you’ve had that excludes heart disease and a number of different types of lung disease, as a cause of your shortness of breath. The not so good news is that you have, thus far, unexplained shortness of breath and, for this, you desperately need to see a first class lung specialist (pulmonologist) to find the cause. Until you do you will be left in limbo with chronic anxiety regarding what is going on and the anxiety is likely to be a contributing factor to shortness of breath.
Two possible causes that will need to be ruled out are recurrent clots to your lungs (emboli) and a condition of abnormal vocal cord movement called Vocal Cord Dysfunction (that may or may not have been tested for or looked for on your PFT’s).
As for the ineffectively controlled obstructive sleep apnea the best advice I can give is that you and your caregivers find ways to make it work. Living with uncontrolled sleep apnea can lead to a number of health problems, so you will have try hard to make it work. That means some one on one work with and experienced sleep therapist and that might involve the use of devices other than a mask. It is highly unlikely that you will be able to overcome your difficulties with the sleep apparatus on your own.
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