MS makes sleep difficult — and sleep studies, too

Like many of my peers in the military, I developed the ability to fall asleep in any position or place and at any time that I wasn’t actively engaged in something. On one occasion, during a particularly loud and turbulent flight, I managed to stay awake just long enough to see an Air Force loadmaster shake his head at a group of us. He saw that I was still conscious and asked if the Army installed buttons in our rear ends because it seemed like anytime we sat down, we fell asleep.

If the Army installed that button, multiple sclerosis (MS) must have removed it, because I spend the majority of each day sitting in my wheelchair and rarely sleep. MS didn’t relocate it to a higher location, either. Even when my head is pressed against a pillow at night, sleep only comes in intervals and almost never seems adequate.

Instead of young soldiers, my peers now are other people with MS. And like so many of them, I have problems getting a full night’s sleep.

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Another sleep study

I just had my third overnight sleep study in three years. I haven’t seen the results yet, but by all accounts, I’ll probably end up trying yet another method of getting my central sleep apnea (CSA) under control.

Five years ago, I was pleasantly surprised when my intrathecal baclofen pump relaxed my spasticity enough to allow me to sleep deeply again. Unfortunately, it seems that, as my MS progressed, so did my sleep issues. Four years later, I had my first overnight sleep lab experience.

It didn’t feel like I’d been asleep at all when the technician woke me to fit me with a mask and try continuous positive airway pressure, or CPAP. Within an hour or two, that seemed to get my obstructive sleep apnea under control, but didn’t affect my CSA, so I was switched to bi-level positive airway pressure, or BiPAP. I was provided with the proper equipment for home use. Data from that, as well as a second study a year later, showed that my CSA still wasn’t under control, and a pressure increase was recommended.

This latest study was done almost entirely on adaptive support ventilation. Rather than just maintaining inhalation pressure, or both inhalation and exhalation, in my case, this machine senses when I’ve stopped breathing and delivers a breath of air — without waking me, somehow. I hope this does the trick, but I’m not holding my breath (bad pun fully intended).  I’m not sure what comes next if it doesn’t, and it would be nice if I never have to find out.

It will also be nice if I don’t have to do any more sleep studies because, while I’m sure they’re difficult for everyone, they are especially difficult for someone with MS. I can’t drive, walk, or transfer into bed, so my caregiver wife has to accompany me to my appointments and stay with me through the night. While levels of disability with this disease certainly vary, no one is unaffected. For instance, I can’t imagine having the strength and balance problems of my past and trying to navigate an unfamiliar room in the dark on the way to the bathroom.

It often feels like MS makes us creatures of very unwanted habits, and for me, many of those routines are centered on going to bed. The sleep lab at the Veterans Affairs hospital is comfortable and well set up, but it isn’t my bedroom, my bed, my blankets, or even the exact setting on my ceiling fan. Not too long ago, those would have all seemed like very trivial things, but with sleep difficulties from MS, I’ve found that getting and staying comfortable is anything but.

In yet another of the cruel twists that MS inflicts on its sufferers, it seems to have turned my waking and sleeping completely around. For most of my life, I did plenty of things in the day that made me tired enough to nearly always get a good night’s rest and recovery. Now, my norm is to wake up tired and spend my day trying and usually failing to recover from not getting adequate rest the night before.

Frustrating doesn’t come close to describing it, but I’m too tired to think of a better word. I think I’m on the right path to getting relief, though. I’ll let you know how it goes.

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.