Dyspnea in spite of good values

Question

Hello,
I am 28 years old and suffer from CF. At the moment I am mostly doing quite fine, can do sports and the FEV1 is about 70%.
In spite of the good FEV1 value I have partly severe problems, if I do not cough up for a longer time. This is true mainly in the mornings, as I do not have to cough during the night fortunately, and it turns worse, when I have slept longer. During the week I seem to get up early enough, however at the weekend I sleep longer and weak up often with extreme dyspnea, so that I partly lay on the sofa for 1-3 hours bending the body forward and try to breathe properly. Salbutamol and ipratropium bromide do not help at all, independently how often I use them; only fluticason plus salmeterol helps a bit, however it takes the 1-3 hours, that are really not agreable, until I feel that it is going better.
In the CF center, diverse blood values concerning allergy have been tested without success, in the sputum there was nothing, either, which is normally not common for me. Only the MEF 25 value is with 13% and the residual volume with 230% not so good.
The CF center is unfortunately not doing anything against the dyspnea or is trying to find the reason. As I do not know what to do, I increased the dosage of fluticason on my own. This brings a bit of relief, however I do not know if this is a long-term solution.
The last possibility would be, that I wake me up at night and do my inhalation, in order not to have dyspnea in the mornings, however by this quality of life is not really increasing. Do you have an idea, where such dyspnea could come from and what could be done about it?
Many thanks and best regards,

Answer

Hello,
fortunately your problem is relatively seldom, however is more common in patients with e.g. COPD. Probably at night during sleep much mucus is collected, that cannot be transported properly upways due to the narrow airways. By this dyspnea in the mornings occurs, as in the mornings not all bronchi are ventilated well.
One option would be for sure, to widen the airways by fluticason plus salmeterol, even with a higher dosage. An alternative would be to take in the evenings e.g. tiotropium bromide, olodaterol or glycopyrronium bromide plus indacaterol, all long acting broncho-dilators. Additionally I would recommend, to inhale relatively late in the evening with hypertonic saline 6% or 7%, in order to get as much secretion as possible out of the lungs before the night. Probably also the intake of amitriptylin 20mg in the evenings makes sense, in order to have a certain suppression of inflammation (this can however make you quite sleepy during the day).
Please discuss this with your CF-center, as only the treating physician knows you, the course of your illness and all your findings in detail
Best regards,
Rainald Fischer

28.09.2016