‘Mucus of the Night’: Dealing With CF-related Sleep Issues
For those unfamiliar with the Broadway sensation “Phantom of the Opera,” one of its most famous songs is called “The Music of the Night.”
I was enjoying Sir Andrew Lloyd Webber’s music the other night when I realized it was 3 a.m. It made me think of all the nights that my cystic fibrosis (CF) or CF-related medications kept me awake until the wee hours of the morning.
Insomnia is the first issue that comes to mind. I’ve never had a proper sleep schedule. Sometimes medicine was the culprit behind my tosses and turns. Trikafta (elexacaftor/tezacaftor/ivacaftor) is known to cause this, but other medications like prednisone can have the same effect.
Out of desperation, I asked my doctor if I could swap morning and evening pills in an attempt to regulate my schedule. It worked for a period of time, but the effects soon wore off.
My doctors also tried to distinguish between mental health concerns and medication side effects when my sleep schedule was off. Stress and anxiety were definitely factors. I’d panic if I started to fall asleep before completing my nighttime routine of nebulized medication, chest physical therapy, nasal rinse, and pills. Naps were short-lived because I’d cough myself awake, and getting up early meant I had a long morning routine ahead of me.
The peace of nighttime was the third culprit. Insurance companies don’t call at 3 a.m., nor do staffers scheduling appointments for doctors’ offices. There are no prescriptions waiting at the pharmacy or messages in my patient portal. Turns out, the peace and quiet of 3 a.m. is worth staying up for.
I don’t always get a fever, but when I do, it happens at 3 a.m. I don’t know of any studies that can explain my late-night fevers. Perhaps it’s the timing of my night medication mixed with the warmth of my weighted blanket. Regardless, all trips to the emergency room begin at 3 a.m.
The 104-degree fever I had three years ago, just months before my bilateral lung transplant, was the highest fever I recall having. I remember my mom’s widened eyes peering down at the thermometer as she wiped the sweat off my head. She loaded me up with Tylenol before driving me to the emergency room in the pitch dark. It turned out I had the flu in addition to end-stage CF.
At the beginning of my relationship with my husband, I would do twice as many nebulizer treatments in the hopes that it would suppress my nighttime cough. No one wants to be awakened from a slumber by the sound of a partner’s nasty cough followed by an urgent trip to the bathroom.
Every nightstand required a full pack of tissues in the event that my mucus wanted to make an appearance. This made sleepovers, hotel stays, and other destination sleeps inconvenient at best. Plus, I have acid reflux, and like most people with reflux and breathing issues, I’ve been advised to sleep at a 45-degree angle. Unfortunately, I must be lying flat to fall asleep.
There’s one lyric in “Music of the Night” that inspires me:
“Sing once again with me
Our strange duet
My power over you grows stronger yet.”
I always say the phrase to myself before I fall asleep, like a power move over the always threatening nighttime. I know my medications will eventually adjust and my insomnia will linger. At least my mucus of the night hasn’t made an appearance in a couple of weeks. I wonder what excitement tonight will bring.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
What happens to your mucus problem if you avoid sugars in all foods, and also avoid wheat, oats, and all dairy foods?
Have you tried it? I have learned to avoid these, since I for some reason have mucus problems some hours after consuming any of these. Without these, my body recovers, and I can breathe again without medication.
I am a wandering undiagnosed dilemma. There is no "sugar allergy" says doctors in Norway.
Paul & Debbie
Trikafta/Kaftrio does not make one sleep better indeed. I think it is also a function of having more energy because of the medication and the body needs to adjust to that. It starts with needing less sleep. And there is also the more active brain that produces thoughts of activity in the middle of the night, which is not conducive of falling asleep again after being awake for a visit to the bathroom. But I use meditation to fill in those hours at night, and if I need to, take a short siesta the day after - although since Kaftrio, this happens less and less. I use music as well: I try to play a difficult piece of piano music in my head. Usually this makes me so sleepy and stops all other thoughts, that I eventually fall asleep.
The mucus of the night used to bother me a lot indeed before Kaftrio, but this has now stopped completely.
Acid reflux, yes indeed. I tried raising the bed also, didn't do much good for sleeping better. I rely on omeprazol completely to deal with the reflux. And I try not to have an empty stomach for too long. So I finish a bottle of Nutridrink with the ivacaftor in the evening (also supplies the fat to solve the thing). I tried swallowing it with less fat (sandwhich with cheese) but that often causes pain in the lower belly,
And on the nightstand there is always another little bottle of Nutridrink and two Creons, that I mostly finish in the course of the night. It sleeps better on a partly filled stomach. The digestion process also takes away some bloodstream to the brain and redirects it to the belly.