Scenario 2: My doctor prescribed supplemental Oxygen (O2) for use at night with my vent, but I feel worse after using it (heart palpitations, dizziness, headaches, and nausea along with some pretty significant drops in Oxygen Saturation).”
We are NOT medical doctors, and we advise anyone in this scenario to promptly seek medical care from their Neuromuscular Disease (NMD) care team. That being said, we have conversed with individuals living with NMD who have had this same negative experience with supplemental Oxygen, some even sharing their experience in our Breathe with MD Support Group. It is critical that anyone with NMD use bi-level ventilation while receiving supplemental Oxygen, because if used alone, (without ventilation), it can be dangerous, even deadly for those who have weakened breathing muscles. Below are a few quotes about this.
“Supplemental Oxygen should be administered to an individual with Neuromuscular Disease, ONLY IF ALL FOUR CONDITIONS ARE MET.
1) An additional pulmonary condition is present (pneumonia, COPD, or pulmonary embolism), and...
2) Oxygen saturation is below 90% and...
3) Secretion management with a device such as Respironics CoughAssist or air stacking has failed to improve oxygen saturation levels and...
4) Mechanical/assisted ventilation is securely in place.”
Reference: https://www.ventnews.org/tcnc.
Note: Some have asked what is meant by "securely in place." This is referring to a secured noninvasive mask interface that is free of excessive leaks.
"Supplemental oxygen therapy should be used with caution because oxygen therapy can apparently improve hypoxemia while masking the underlying cause, such as atelectasis or hypoventilation. Oxygen therapy might impair central respiratory drive and exacerbate hypercapnia.91,95,103 If a patient has hypoxemia due to hypoventilation, retained respiratory secretions, and/or atelectasis, then manual and mechanically assisted cough and non-invasive ventilatory support are necessary. Substitution of these methods by oxygen therapy is dangerous.” Reference: https://www.thelancet.com/journals/laneur/article/PIIS1474442209702728/fulltext.
“Since nocturnal hypoxemia is caused by hypoventilation in neuromuscular weakness, oxygen should not be utilized without ventilatory support. Patients with chronic hypercapnia are dependent upon hypoxemic respiratory drive, and oxygen alone could further blunt the hypoxic drive to breathe, raising the risk for severe hypercapnia and respiratory failure.” Reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5034932 Page 3.
Also see Oxygen Caution.
It is likely that some are more sensitive to supplemental Oxygen than others. In this scenario, it is also possible that the amount of supplemental Oxygen is being administered at too high of a dose and/or bi-level mechanical ventilation settings are inadequate to prevent hypoventilation (under breathing). In either case, adding supplemental Oxygen could decrease the drive to breathe and lead to hypercapnia, elevated Carbon Dioxide (CO2) in the blood and lungs. This is why it is important for the individual to have their CO2 level monitored at all times while receiving supplemental Oxygen. Options available for home use could include continuous transcutaneous CO2 monitoring (through sensors on the skin) or capnography (end tidal/exhaled breath CO2 measurement).
If you experience a worsening of your symptoms while using supplemental Oxygen with mechanical ventilation, you need to discuss this as soon as possible with your NMD respiratory care team, even if that means contacting them after hours when an answering service takes your call or going to the Emergency Room. For some, a change in their mechanical ventilation settings to provide additional breathing support is all they need in order to normalize their blood gases, and supplemental Oxygen is not needed. What kind and degree of settings change will vary from person to person. It could mean increasing the IPAP (Inspiratory Positive Airway Pressure), decreasing the EPAP (Expiratory Positive Airway Pressure), increasing Tidal Volume, slowing the length of time for each delivered breath so that it may have time to more fully fill the lungs, altering the respiratory rate/breaths per minute, changing from one mode of ventilation such as BiPAP S/T to an AVAPS or IVAPs mode (pressure support with a target tidal volume), or a volume support mode, etc. that may necessitate an equipment change. Some may even see an increase in Oxygen saturation when using mechanical cough assistance consistently throughout the day if their issue is an accumulation of secretions (mucus). See also Cough.
Not everyone responds poorly to supplemental Oxygen used with their mechanical ventilation, but it is wise to discuss all options in detail with the clinician who manages your breathing muscle weakness and consider alternatives to adding supplemental Oxygen that we have described here.
We are NOT medical doctors, and we advise anyone in this scenario to promptly seek medical care from their Neuromuscular Disease (NMD) care team. That being said, we have conversed with individuals living with NMD who have had this same negative experience with supplemental Oxygen, some even sharing their experience in our Breathe with MD Support Group. It is critical that anyone with NMD use bi-level ventilation while receiving supplemental Oxygen, because if used alone, (without ventilation), it can be dangerous, even deadly for those who have weakened breathing muscles. Below are a few quotes about this.
“Supplemental Oxygen should be administered to an individual with Neuromuscular Disease, ONLY IF ALL FOUR CONDITIONS ARE MET.
1) An additional pulmonary condition is present (pneumonia, COPD, or pulmonary embolism), and...
2) Oxygen saturation is below 90% and...
3) Secretion management with a device such as Respironics CoughAssist or air stacking has failed to improve oxygen saturation levels and...
4) Mechanical/assisted ventilation is securely in place.”
Reference: https://www.ventnews.org/tcnc.
Note: Some have asked what is meant by "securely in place." This is referring to a secured noninvasive mask interface that is free of excessive leaks.
"Supplemental oxygen therapy should be used with caution because oxygen therapy can apparently improve hypoxemia while masking the underlying cause, such as atelectasis or hypoventilation. Oxygen therapy might impair central respiratory drive and exacerbate hypercapnia.91,95,103 If a patient has hypoxemia due to hypoventilation, retained respiratory secretions, and/or atelectasis, then manual and mechanically assisted cough and non-invasive ventilatory support are necessary. Substitution of these methods by oxygen therapy is dangerous.” Reference: https://www.thelancet.com/journals/laneur/article/PIIS1474442209702728/fulltext.
“Since nocturnal hypoxemia is caused by hypoventilation in neuromuscular weakness, oxygen should not be utilized without ventilatory support. Patients with chronic hypercapnia are dependent upon hypoxemic respiratory drive, and oxygen alone could further blunt the hypoxic drive to breathe, raising the risk for severe hypercapnia and respiratory failure.” Reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5034932 Page 3.
Also see Oxygen Caution.
It is likely that some are more sensitive to supplemental Oxygen than others. In this scenario, it is also possible that the amount of supplemental Oxygen is being administered at too high of a dose and/or bi-level mechanical ventilation settings are inadequate to prevent hypoventilation (under breathing). In either case, adding supplemental Oxygen could decrease the drive to breathe and lead to hypercapnia, elevated Carbon Dioxide (CO2) in the blood and lungs. This is why it is important for the individual to have their CO2 level monitored at all times while receiving supplemental Oxygen. Options available for home use could include continuous transcutaneous CO2 monitoring (through sensors on the skin) or capnography (end tidal/exhaled breath CO2 measurement).
If you experience a worsening of your symptoms while using supplemental Oxygen with mechanical ventilation, you need to discuss this as soon as possible with your NMD respiratory care team, even if that means contacting them after hours when an answering service takes your call or going to the Emergency Room. For some, a change in their mechanical ventilation settings to provide additional breathing support is all they need in order to normalize their blood gases, and supplemental Oxygen is not needed. What kind and degree of settings change will vary from person to person. It could mean increasing the IPAP (Inspiratory Positive Airway Pressure), decreasing the EPAP (Expiratory Positive Airway Pressure), increasing Tidal Volume, slowing the length of time for each delivered breath so that it may have time to more fully fill the lungs, altering the respiratory rate/breaths per minute, changing from one mode of ventilation such as BiPAP S/T to an AVAPS or IVAPs mode (pressure support with a target tidal volume), or a volume support mode, etc. that may necessitate an equipment change. Some may even see an increase in Oxygen saturation when using mechanical cough assistance consistently throughout the day if their issue is an accumulation of secretions (mucus). See also Cough.
Not everyone responds poorly to supplemental Oxygen used with their mechanical ventilation, but it is wise to discuss all options in detail with the clinician who manages your breathing muscle weakness and consider alternatives to adding supplemental Oxygen that we have described here.