How MS and Aging Have Affected My Sleep
Last updated: October 2023
Multiple sclerosis meddles with our time, dreams, plans, love, self-esteem, form and function. For me, it can also interfere with sleep. Besides that, non-MS related problems such as allergies and soft palate collapse affect breathing and ruin my sleep to the degree that it causes my MS symptoms to worsen the following day. Whether MS causes my sleep problems or is worsened by them, they didn’t just recently appear.
My sleep problems have evolved
My sleep problems have evolved over the past twenty years, spanning my early forties to early sixties, the latter years affected directly by MS symptoms and by the aging process. Starting at the younger end, here are some of the factors that have changed what once was a healthy sleep pattern:
My first MS attack
Age 41: My first MS attack and first-ever round of steroids during my very first hospital stay. Five days and four nights of IV steroids, relatively sleepless nights as I woke each time a nurse replaced the bag or a tech drew more blood. I took an additional month of prednisone pills at home. It caused nightmarish half-slumbers, when I swear I howled at the moon, sprouted fangs and claws, and worse.
Receiving my MS diagnosis
Age 48: The year I finally received an MS diagnosis six years after my first attack. Along with that long-awaited pronouncement, grief hit me afresh and I sought out counseling for comfort and support. But my counselor was a nurse practitioner whose questions focused entirely on my father and ignored my emotions. Downcast, I quit and retreated inside myself, where the instinct to cope with my hurt feelings was to throw myself into something I could control. I was still working full-time and trying to do interior design in my home after hours.
Sleeping only 3-4 hours a night
There were never enough hours to be as productive as I wished, so I decided to turn myself into the kind of person who only needs 3-4 hours of sleep a night. I couldn’t find support, sympathy, and understanding, but I could certainly control how much I slept, and I did. I diligently drilled, painted and assembled my numerous design projects far into the night, until my arms got so numb I couldn’t feel the tools in my hands. Mission accomplished, kudos to me—except I’d turned myself into an insomniac.
I fell into a deep depression
I was abruptly fired later that year. The reason isn’t the important part, it’s the aftermath. I fell into a deep depression. It was like tumbling into a bottomless well, the sides slick with moss. I tumbled fast and couldn’t push at the walls to slow my fall. After eight weeks in bed and crying nonstop, I went to a doctor who gave me trazodone for insomnia and citalopram for depression. My depression lifted within two months and I stopped citalopram, convinced the depression would have subsided on its own. But it took a year more on trazodone to finally sleep through the night without waking up every two or three hours.
More and more sleepless nights
Age 53-55: I was married and spending more and more sleepless nights working through my feelings about my husband’s drinking and subsequent DUI. Those sleepless nights were the safest way to cope with my anger, giving me time to calm down and then rehearse a script for the next day when I would calmly, lovingly tell him how his drinking made me feel. Near the end of 2012, it ended —his drinking and the marriage- and so did my insomnia. For a while.
Age-related sleep disturbances and nighttime nerve pain
Age 59-61: 2017-2019. These past two years reached an apex of age-related sleep disturbances and nighttime MS-related neuropathic pain. For 20 years, I’d experienced the soft tissue in the back of my throat collapse while lying on my back talking on the phone. It would cut off my exhalation for a second and make me pronounce words strangely. An M sound came out sounding like a B, and N came out as a D.
For years, I also snored quite a bit, and as the soft tissue collapsed more and more over time, the snoring became worse. By age 61, I woke several times a night hearing myself snore and feeling the soft tissue thick at the back of my throat. My mouth was open and so dry that I had to drink water to get the saliva flowing again.
Burning pain and other health problems
Over time, I also woke to burning and electrical shock sensations in both legs. The first time burning woke me, I threw off the covers convinced I’d see smoke rising from singed flesh. I spent most of that year with a chronic gland infection. Surgery to remove the gland in January 2019 took care of the infection and the post-surgery swelling in my throat gradually calmed down. By fall 2019, I also consulted my fellow contributor Tamara Kaye Sellman, who is an expert on sleep disorders and who validated all my experiences and suggested a sleep study.
As of December, 2019, there have been improvements. Since I now take gabapentin, 300 mg twice daily, the burning and electrical shocks in my legs are gone completely. I also snore a lot less, having trained myself to sleep on one side or the other. I still need to take a short nap in the afternoon, but I’m more alert and my legs and balance are better during the day now that I’m clocking more sleep time.
Planning to do a sleep study
Despite these improvements, I do plan to do a sleep study to find out if I have Obstructive Sleep Apnea (OSA) and consider the treatment alternatives. At age 62, I am one of many older people that snore as a result of allergies and the breakdown of tissue in the soft palate. Being overweight is a contributing factor too, and I have already lost ten pounds with twenty more to go. So there is light at the end of the tunnel.
What affects your sleep the most?
I was lucky to have found an effective drug for my MS-related neuropathic pain, but I know many of you struggle with it at night along with other things. Please share what affects your sleep the most. So many readers will be able to relate and feel comforted knowing they’re not alone.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: