“CF-Somnia” and How We Cope

“CF-Somnia” and How We Cope

by | Feb 18, 2022 | Blog | 0 comments

Getting good sleep has always been an issue in the CF community, but lately, the reasons for it have become a little unclear for many. We know that post nasal drip and acid reflux, which are both common problems for people with CF, are both amplified by lying positions. We know that coughing is a super common sleep disruptor for people with CF. We know that anxiety, which people with CF are # times as likely as the general population to have, often keeps people awake at night. We know that CFRD and blood sugar extremes can wake us up. But what we don’t really understand, is why after starting a modulator drug, and in the absence of all those other issues, people with CF are having so much trouble getting good sleep! You’d think that as the coughing subsided, the sleep would get better — but for many, that’s not the case.

Our first plans of attack should be addressing the possible causes. If post nasal drip is potentially a cause, we can try treating that. If acid reflux is potentially a cause, we can try treating that. We can try elevating our heads (by putting blankets under our mattress where our heads lie, by using a wedge shaped pillow, or by using a fancy adjustable bed). If anxiety is potentially a cause, we can try treating that. If blood sugar extremes are a cause, we can try to prevent those. And of course, we are basically always trying to treat coughing, as a potential cause.

But when all those potential causes are treated, or ruled out — what are we supposed to do? How do we cope?

It’s worth mentioning that we should probably look into our sleep hygiene before we start looking into supplements or other practices. This includes things like: aiming for consistency in our schedules, less screen time right before bed, an adequate amount of physical activity during the day, and getting good nutrition. But as many of us know, sometimes even when all that is good, the “CF-Somnia” still gets us.

There are many supplements that are supposed to help people sleep. Melatonin is probably the most popular one, that lot of people have heard of, but I don’t think a lot of people know that time release melatonin is available. I personally had a lot of success with time release melatonin while I was adjusting to a new antidepressant. (If waking in middle of the night is your main issue, it might be worth trying that out.*) L-theanine and L-tryptophan are amino acids that are suggested to help with sleep. Valerian root, ashwagandha, passion flower, lemon balm, lavender, and chamomile are plants that are suggested to help with sleep.

One plant in particular though, seems to be a favorite among the CF community for helping with sleep: cannabis! I took to Instagram to find out what works best for people with CF who have sleep issues, and I was surprised to find that cannabis was the most common answer.** For a better understanding, I interviewed three women about their experiences:

The first woman I chatted with lives in New Jersey, where medical cannabis has been legal for the past twelve years. She had been experiencing bone pain in her chest, and her CF team suggested she use Percocet to treat it. She had been using that for a few months, until it started messing with her digestive system, and landed her in the hospital. After that, the adult CF doctor in her clinic suggested medical cannabis since it helped some of their other patients. Prior to getting her prescription from a recommended psychiatrist, the woman was sleeping restlessly, constantly woke herself up coughing at night, and would frequently fall asleep in class. She noticed that the cannabis helped with sleep, in addition to helping with her pain. Now she takes a 5mg THC/CBD edible before bed, sleeps well, and doesn’t feel “like crap” when she wakes up!

The second woman I spoke to lives in Colorado, where cannabis is fully legal. She wanted to try using CBD (a non-psychoactive component of cannabis) after reading a bit about how it could help with sleep, so she approached her CF team and her transplant team to see how they felt about it. Both teams gave her the okay, so now she takes a few drops of CBD tincture before bed. She still has some sleep issues, but it’s much better for her now than before.

The third woman I interviewed lives in Arizona, where cannabis is fully legal. This woman had been using opioids to treat her chronic pain, but developed an addiction to them, so she needed to make a change. After overcoming that, she started using cannabis to treat her pain, and then also to help her sleep. She told me about a specific blend called Rick Simpson Oil (RSO), which has been used to help with cancer, chronic pain, and epilepsy. She eats a 1:1 THC/CBD RSO edible before bed, and she is very happy with how it controls her pain and helps her sleep.

*I am not a doctor. Please consult with yours before taking my advice!

**The most popular answer from my followers. Not really a scientifically representative sample.

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