How sleep apnea and multiple sclerosis cause me relentless fatigue

I feel like I’ve written a lot of negative, maybe even depressing, columns lately. While multiple sclerosis (MS) can be a pretty negative and depressing subject, I’m normally a bit more upbeat. We’ve been having cold and gloomy weather lately, and I’d like to blame my low spirits on seasonal affective disorder (aka the winter blues), but that’s not it. I’ve just felt more fatigued than usual, and it’s showing in my mood.

Fatigue has probably been the most consistent part of my MS journey in the years since my diagnosis. But for the past six months, it feels like it has shifted into overdrive, plaguing my life daily. It’s come with all the usual symptoms like tiredness, brain fog, heavy limbs, and a depressed mood.

A number of factors may contribute to fatigue in MS, but one in particular caught my eye: poor sleep quality. I haven’t been getting the best sleep lately, and I think it has been affecting my waking hours.

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A while back, I wrote about getting a full night’s sleep after having an intrathecal Lioresal (baclofen) pump implanted. That helped to get my spasticity (mostly) under control, which allowed me to sleep through the night for the first time in a while. I still experience some leg movement while I sleep, which could mean it’s time to adjust my Lioresal dosage.

In the past year, though, I’ve started waking up in the middle of the night again, often with an extremely dry mouth, which also is common when I wake up in the morning. My wife told me that while I only occasionally snore, I periodically stop breathing and then gasp and breathe heavily for almost a minute afterward.

Ben Hofmeister settles in for his first sleep study. (Photo by Michala Hofmeister)

That’s when I started noticing my worsening fatigue and depressed mood. Others noticed it, too, so I decided to do three sleep studies, the last of which was last month.

Five or more apnea or hypopnea events an hour is the threshold for diagnosing sleep apnea. During the first sleep study, I had 44 such events. Those who administered the test assured me that I hadn’t come close to a record, but my number was far from ideal. I was diagnosed with both obstructive sleep apnea (OSA) and central sleep apnea (CSA), which also isn’t ideal.

OSA is exactly what it sounds like: Throat muscles relax and block the airway, restricting breathing. In CSA, brain signaling to muscles that control breathing doesn’t work, causing a person to stop breathing during sleep.

While it’s still poorly understood in people with multiple sclerosis, those with MS are at a higher risk of having both OSA and CSA, according to the Multiple Sclerosis Foundation. CSA in people with MS is thought to be linked to lesions that form in the brainstem, which controls the muscles that maintain an open airway during sleep.

Sleep studies aren’t much fun. I usually sleep on my back, so I didn’t mind that part, but the procedure involves a lot of wires and sensors. Add in a mask or nasal plugs for the positive airway pressure devices and sleep is — difficult.

A chin strap kept my jaw from sagging and made me look like someone with the mumps in an old photograph. This was my least favorite part but was necessary because, apparently, I’m a mouth breather. Yes, those exact words are in the study’s notes. I wasn’t offended because I was already aware of it, and besides, how else would you phrase it? My wife and I got a good laugh out of that one.

The first study diagnosed the problem and determined that the same airway pressure from a CPAP machine for both inhalation and exhalation wasn’t the solution. During the second and third studies, they tried different pressure settings using a BIPAP device, adjusting them to fit my breathing pattern.

The entire process has taken about five months, and there’s no guarantee it will be a perfect fix. If CSA continues to be a problem for me, we may have to try a machine that detects a halt in breathing and delivers a breath to get the cycle going again.

We’ll see how it goes. No matter what, I feel like it’s a step in the right direction. And that’s what a journey with MS is: lots of steps. Maybe I’ll sleep better after this step and feel less fatigued when it’s time to take the next one.

Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.