MS-related Insomnia is Exhausting

MS-related Insomnia is Exhausting

Jennifer Silver LiningsI do not sleep well. Ever. I have tried a myriad of meditations and medications, yet sleep evades me. It is 2:30 a.m. and infomercials are taking over the airwaves. My knowledge of everything Ginsu knives is overrated. (Pro tip: If you wait until the end they always offer two for the price of one.)

I have learned to navigate life in a constant state of exhaustion. This is not necessarily a good thing, but a necessary evil. I always do the best with what I have, and this is no different.

As a funny aside, I often nod off while writing. I wake up to find a line of zs or 54 additional blank pages. Perhaps I should count words and not sleep? Hey, whatever it takes!

I do have sedating medications that I take in the evening, as well as the option for a prescribed sleep medication. I fall asleep easily, but never sleep past 1 or 2 a.m. While pain accounts for some of my wakefulness, the majority of the time I just cannot sleep. After several unsuccessful attempts, I get up and go downstairs. At this time, I am reluctant to take any sleep aid as my days start early. My golden retriever is wagging her tail, and ready by 5 a.m., so I am, too. There is nothing worse than trying to function in a medication-induced stupor. Hence, I choose to be tired.

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I also sleep-eat on medication. Bizarre, I know. Once I broke into a package of Jolly Ranchers. A dangerous thing to eat when you are on the precipice of sleep. Upon waking, I had zero recollection — save for two Jolly Ranchers knotted in my hair. Classy.

I have explored many techniques in vain attempts to find the Sandman. His presence evades me. I have come to understand so many with MS have similar struggles. The ultimate juxtaposition is that I am often so tired. One would conclude I would be able to sleep. Alas, that’s a far-too-simple equation.

Much of MS-related insomnia is associated with secondary symptoms as opposed to the MS itself. While lesions in parts of the brain associated with sleep can definitely play a part, so too can stress, spasticity, numbness, pain, bladder problems, and restless legs (RLS). I wake with deep pain in both thighs, as well as a leaden and painful numbness in my limbs. Additionally, I have lesions in my spine that exacerbate restless legs. I have had severe bouts of RLS that have sometimes lasted three days. Three days and three nights with no sleep.

As with our disease, treating MS-related insomnia is individualized. I rub a gabapentin-ketamine-lidocaine compound cream on my thighs after dinner. This helps mitigate the pain so I can fall asleep. I place my heating pad across them, and the two work well together.

I block time out of my day to just rest and watch TV, play Words with Friends, or read. Sometimes I will nod off, but more often than not I will just enjoy the downtime. I create an environment conducive to my needs.

I have learned the hard way not to keep Jolly Ranchers in the house. If they are missing, I probably will not remember taking them. I’ll check my hair.

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10 comments

  1. Jagannadha Avasarala says:

    Regardless of the cause of insomnia, it pays to remember that MS patients can also have OSA (obstructive sleep apnea), secondary narcolepsy that can impact sleep. Lesion location can also influence sleep, as in hypothalamic lesions, for example. In any event, sleep-related issues need a ‘collective’ approach to the problem consisting of MS specialists, sleep specialists as well pain specialists, physical therapy personnel and psychiatrists, depending on whether patients have co-existing mood/anxiety or depression.

  2. Wanda Tylicki says:

    I feel your pain, I occasionally wake covered in stir fry I made the night before, When my children lived here they would snicker and video me. The worse is the chocolate. I have ruined quite a few pillows. As I look at this it’s the humor that keeps me safe. Glad you are in my boat. I also am better at words with friends at night. Believe me, I keep all of you in my thoughts. Thanks for the humor Jennifer.

  3. Kim says:

    I have had MS for over twenty years. Up until a few years ago I was an 8-9 hours a night girI. Then, Something changed. I fall asleep fine. I usually get five Maybe six hours of sleep a night. My neurologist says MS doesn’t cause insomnia! (imagine my surprise when I saw this article!😱🤯🤔😖.) I am a 49 year old female; ladies, do you get me? Is that causing insomnia?🤔

    I’m a doctorate student. I Need my Rest! I also just started taking Adderall for my ADD. That has never been a problem until this year. I’ve received three Master’s degrees with these lovely afflictions. If that keeps me awake, then I take Benadryl which doesn’t always work. Neither does meditation.

    Even when my leg was jerking at night, I was able to get 8 in. In my vanity, I hope🙏🏾, I don’t start looking worn out.

    Sweet dreams!😴

  4. Laura Norris says:

    I have had insomnia since my first MS attach 4 years ago. I can not fall asleep or stay asleep. It’s hard to explain why I can’t nod off, just my brain feels completely awake. I feel like it has destroyed my life because I can not plan anything. I go to bed and lay there for about 2 hours till I finally get up and read in another room. If I do fall asleep it’s a light sleep that usually lasts for about 30 minutes.

  5. Michelle lalonde says:

    Have ms 30yrs no sleep life’s hell friends family don’t get it always making fun at how I can sleep in until 1 but I never slept till 5,0r 6 been on amitriptylin30yrs for pain it is sedating at night so I just up and up but wish there were another way ???

  6. Kevin Lipetzky says:

    Mystery enjoys company. Knowing I am not alone might help me sleep better. My best sleep is in my lazy boy recliner between 7 & 9 p.m. Then I am supposed to hit the hay later? ? ? I find my best sleep in the early morning. I think I wear myself out trying to sleep. I am a miserable man. Miserable in more ways than one. Although I am married, I am lonely. My wife is healthy & enjoys walking & yogi. I can’t even enjoy a walk with my wife. So much about me. Life goes on.

  7. Russ Hicks says:

    Fascinating to read all of the above issues. I thought I was having trouble sleeping, but now realise I have little to complain about! My sleep tends to come in 2 to 3 hour bursts before the need to empty the bladder . . . even though I take a bladder med and try not to drink anything much in the evening – a few sips of water at most. I generally wake at 6:00 to 6:30am and that’s it, but, of course, am worn out again by mid-morning, then again after lunch, and then almost totally out of battery after dinner in the early evening. I do still long for a through the night sleep, but that is a dim and distant (about 10years!) memory.

  8. Birgitta says:

    I did not know that i had sleep apnés during night and I wake up several times. I was disturbed by pain Also. I have now a Resmed cpap and I sleep 6-7 jours Every night. It i very good for me.
    At first it was a try to accept ”the respetory mask”. But now it is not a problem.

  9. Seppe says:

    Seizures at 10/16-17y/o.

    Pain begins 11y/o with a peripheral neuropathy diagnoses.

    1970 army calls/withheld my medical info.

    1962 to present … intractable pain!

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