It took thirteen years to convince my cardiologist to do a walking oxygen level. After approximately 15-20 steps my O2 level was in high 70s. My pulmonologist said most people would be suffering with life threatening situation or possible death but my body has learned over time to compensate for my increasing hypoxia. I am now on oxygen 24/7.
Thank you for sharing. It is highly unusual for oxygen to be required 24/7 for the type of dyspnea associated with most forms of dysautonomia, as well as hypoxia that increases over time. Sometimes deconditioning can cause increased dyspnea because naturally the body isn't working at its most efficient if your other symptoms are preventing normal movement and activity.. Can you share the type of dysautonomia you are living with or if you have other underlying illnesses impacting your oxygen levels?
Unfortunately, that is fairly common. We do encourage people to be sure to discuss it with their PCP and to follow up with a pulmonologist if indicated. There are so many other things that can cause dyspnea that you want to be sure that yours is solely being caused by dysautonomia. Thank you for sharing your symptom with us all. Take care.
@@DysautonomiaInformationNetwork I have had numerous chest CTs, And Pulmonary function tests that come back perfectly normal.. I am still pushing for more testing though!
@@lessons9745 So glad to hear that your doctors are being thorough. I always mention testing to people because it can be easy sometimes for doctors to chalk everything up to dysautonomia symptoms and not look further. Once they have come back normal on your pulmonary tests, then it is probably safe to assume it is a symptom of dysautonomia. One of my most difficult symptoms as well, so I sympathize. Good luck
Thank you Lauren 😊
You're so welcome!
It took thirteen years to convince my cardiologist to do a walking oxygen level. After approximately 15-20 steps my O2 level was in high 70s. My pulmonologist said most people would be suffering with life threatening situation or possible death but my body has learned over time to compensate for my increasing hypoxia. I am now on oxygen 24/7.
Thank you for sharing. It is highly unusual for oxygen to be required 24/7 for the type of dyspnea associated with most forms of dysautonomia, as well as hypoxia that increases over time. Sometimes deconditioning can cause increased dyspnea because naturally the body isn't working at its most efficient if your other symptoms are preventing normal movement and activity.. Can you share the type of dysautonomia you are living with or if you have other underlying illnesses impacting your oxygen levels?
Air hunger is one of my most persistent and debilitating symptoms.
Unfortunately, that is fairly common. We do encourage people to be sure to discuss it with their PCP and to follow up with a pulmonologist if indicated. There are so many other things that can cause dyspnea that you want to be sure that yours is solely being caused by dysautonomia. Thank you for sharing your symptom with us all. Take care.
@@DysautonomiaInformationNetwork I have had numerous chest CTs, And Pulmonary function tests that come back perfectly normal.. I am still pushing for more testing though!
@@lessons9745 So glad to hear that your doctors are being thorough. I always mention testing to people because it can be easy sometimes for doctors to chalk everything up to dysautonomia symptoms and not look further. Once they have come back normal on your pulmonary tests, then it is probably safe to assume it is a symptom of dysautonomia. One of my most difficult symptoms as well, so I sympathize. Good luck