MS makes sleep difficult — and sleep studies, too
I've just completed my third overnight sleep study in three years
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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.
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.
Lisa Bowser
Thank you for your article. I also have some trouble with sleep. If I wake up, it's pain that wakes me. Usually it's my upper right leg. Always the same one. Though now, I suffer from charlie horses when I try to flex my way out of the pain. I used to be able to stretch, and it would feel better. Now, I can't stretch because it sets off extremely painful charlie horses that you would not believe. My leg pain has gotten worse with my secondary progressive MS. I also now have back pain. And that's getting worse with time. I'm hoping some of this is the horrible Winter weather. I do have some nights when I can sleep straight through to morning which I'm so grateful for every time it happens. Stay blessed and continue to be a blessing through your writing.
Vadzim
Hi Benjamin, I’ve struggled with sleep most of my life. For two years it was especially bad—endless insomnia, 4–5 hours of sleep, and constant anxiety about not falling asleep or not getting enough rest. It’s very stressful when you realize how essential sleep is.
I was convinced this problem was permanent, until I started following a simple rule: wake up at the same time every day. No matter how badly I slept, how little I slept—even just one hour—even on weekends, even after staying up late. The adjustment took about a week.
This rule changed my life. For the past year, I haven’t had a single bout of insomnia. I fall asleep quickly and sleep well. Every morning I’m amazed at how simple it was, and how foolish I was not to do this earlier.
I hope this comment helps someone. Thank you.
Jeff Bowden
I resemble your remarks. About ten years ago I just stoped sleeping. I'd fall asleep for an hour or so and just become wide awake. I'd toss and turn and finally just get up and watch TV. I'd eventually just start to doze off and then go back in bed, hoping I was ready to sleep. Sometime's I'd get back to sleep, but usually not. Long story short eventually I just slept in the recliner with the TV on low and just lived with sleeping for an hour or so at a time. This went on for about two years.
I discussed this with my doctor and he recomended Restoril (temezepam). It's designed for very short periods of ten days to reset sleep paterns. It worked!!!! After the ten days I slept better for a while but eventually fell back in the old pattern. He cautioned me against addiction but I take it nightly and I sleep, usually about six hours consistently. I did notice the very few times I didn't take it I just went back to my old sleep pattern. I seriously don't care if I'm addicted or not; I sleep!
As thay say: better living through chemistry. That's the one drug I make sure I don't run out of. Discuss this with your doctor.
Brian Stewart
Stay strong my friend, I have sleep apnea and obstructive sleep apnea as well. My sleep is not as good as it once was as well. I am a 57 year old Marine Corps combat veteran, similar to you. Having the VA is a blessing and being proactive with one's care, regardless if it is private or the VA makes all of the difference. I use my machine nightly and like anything else it just takes time to adjust and get used to the mask and cpap machine. This disease is humbling and it takes strength and resilience, which I know you have and most of us in this forum have. Best strong and thank you for writing this column. Regards, Brian