Unraveling the Gordian knot of sleep issues and CMT health

You might’ve noticed that it’s difficult to perform or feel your best without a restful night’s sleep. In fact, it’s fairly well-documented that poor sleep is bad for your health and comes with some pretty serious risk factors. Folks who don’t sleep well may be at higher risk of Alzheimer’s disease, strokes, heart disease, and pulmonary hypertension. These are certainly serious concerns, but until recently, I hadn’t paid any attention to them.

As someone with Charcot-Marie-Tooth disease (CMT), I’ve understood for most of my life the importance of monitoring the progression of my CMT symptoms. Yet as I’ve grown and learned more about my disease and its effects, I view my health more broadly and holistically. Recently, that’s included taking a second glance at my breathing and sleep.

My newfound focus on these two things began after researchers found increasing evidence that CMT can sometimes result in neuromuscular weaknesses, which can manifest in shallow breathing, obstructive sleep apnea (OSA, typically caused by throat tissue in a relaxed airway), and central sleep apnea (CSA, when the brain doesn’t tell the lungs to breathe). While that’s all concerning in and of itself, a secondary thought wormed its way into my head: If CMT can increase the chances that I may experience breathing problems, including OSA and CSA, do I and other CMTers need to worry about those conditions as well?

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Calling in an expert

To prevent myself from catastrophizing from this thought, I reached out to Kenneth Raymond, who’s the founder of Experts in CMT, a consultant for the Charcot-Marie-Tooth Association, and a published expert in CMT-related respiratory problems.

During our phone conversation, Raymond told me my concerns weren’t unfounded, but also sympathized with my desire to not always assume the worst; not everything that can go wrong will go wrong, he said. Not all the potential negative results of chronic poor sleep and breathing are the direct effects of CMT; at most, they’re potentially tertiary effects.

“It’s not necessarily the case that CMT causes pulmonary hypertension, for example,” Raymond said. “CMT, by itself, is not going to cause pulmonary hypertension; we know this. But we are at a higher potential risk of OSA than the general public, so then stuff like pulmonary hypertension becomes something to consider.”

Problems with sleep and CMT are a bit like a Gordian knot, Raymond said.

“Sleep itself is so critically important to overall health,” he noted. “And maintaining overall health is so critical to maintaining overall neuromuscular disease health. They are inextricably linked together. And one absolutely impacts the other. If you’re getting poor sleep, your overall health is going to suffer, your rare disease is going to worsen, which is going to impact your overall health, which is going to impact your sleep.”

So it’s true that the link between poor sleep and some CMT symptoms can form a cycle, with each health problem spurring on the other. That can spiral into toppling our equilibrium, the balance between all of our body’s various interdependent systems.

But what can we CMTers each do with this information? I don’t believe despair or fatalism are appropriate responses.

Raymond, who experiences problems with sleep, OSA, and CSA, tries to channel his energy into being proactive. When it comes to breathing and sleep, Raymond tries to maintain good sleep hygiene. And after consulting with his healthcare team, he began using an iVAPS (intelligent volume-assured pressure support) machine to help with his breathing and sleep apnea.

Raymond has also found some benefit in the Wim Hof breathing method, an intentional breathing practice Raymond appreciates for its capacity to exercise his respiratory muscles in their full range of motion.

Raymond’s biggest piece of advice, however, is to consider each of our own experiences with CMT, sleep, and breathing; to listen to our body and seek help when we notice something amiss.

“For anyone who doesn’t wake up feeling refreshed, talk to your doctor about it and don’t take ‘no’ for an answer,” Raymond said.

Note: Charcot-Marie-Tooth News 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.