MS-related Insomnia is Exhausting
I 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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Comments
Jagannadha Avasarala
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.
Wanda Tylicki
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.
Kim
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!?
Kyle
Definitely effects sleep. My neurologist says so. May be a secondary symptom but up until my diagnosis I wasn't the best sleeper but slept every night. now 3-4 days a week with no sleep is the norm. ambien worked but had to discontinue. tried variety of others nothing has helped. My record was 2 weeks without sleep on steroids after flare up. Was in hospital psych ward by time I fell asleep. get a second opinion
Jim S
Try medical marijuana! It certainly helped my sleep and other MS symptoms. It might help you too.
Laura Norris
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.
Michele T.
Laura Norris, this is me 100% as far as the sleep issue. Horrible insomnia. This is a very strange disease. I hate it! Went undiagnosed for years. Diagnosed in 2015 at the age of 45, but in reality symptoms started at 29 years old, not sleep issues, just falling here and there, numbness on left side like I had novocane injected on my left side. It went away so I did not think anything of it. P.S. After MRIs and being left untreated for years, I have over 21 lesions in my brain, 1 in my brain stem. Horrendous amount in thoracic spine, and some in cervical. Cognitive issues big time. Very lonely disease. Healthy people DO NOT UNDERSTAND...
Allison
Did anyone figure out any solution I'm going crazy and I dislike prescriptions I heard persons more than 10 years on prescriptions
Michelle lalonde
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 ???
Kevin Lipetzky
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.
Michele Thomson
I feel the same way Kevin. I have over 21 lesions in my brain and one in the stem of my brain. I cannot sleep either. Debilitating fatigue. Anxiety and depressio, forgetfulness, memory impairment. Balance issues. I can go on and on, but the insomnia is the hardest part. A person who does not have MS will NEVER understand how hard this disease is to deal with. My condolences to all of you. I truly understand. This disease makes me feel so lonely as I cannot keep up with things that used to be so normal and easy. Everything is so overwhelming to me. God Bless
Kyle
The comments like just lie down and go to sleep bother me the most. I've been up for 3 days don't u think I would sleep if I could. they don't know what it's like to be awake for that long repeatedly. it's taken everything I've worked for away and nothing really helps.
Sean Neff
Dx'd in 09. First few years were a struggle. Didn't have any sleep issues until past couple nights...I Have rls also which I feel is starting to keep me up because my legs are like I'm running in my sleep. I know your lonely feeling... been on disability since 13...I feel worthless some days..I have 3 sons..2 which are teenagers and one is a teacher...the two here keep me busy and I'm always here for them after school..school functions...sports...my wife is now the angel sent from avove...she said maybe that's what GOD wants me to do..be a parent and of course mr. Mom. I am now used to it but somedays I will get up and ship them to school and work then al fall asleep til 1030-11...maybe u just need to find your purpose...it took me 6 years but I finally feel my worth. I too feel your lonliness..But it is what it is..I feel I was dealt a hand of cards..just playing the cards I am dealt. Sorry for me stuff..just thot a little history and what I've accepted and made my life.
Prayers for you kevin.prayers for this unpredictable disease that we who suffer form will find a cure!
GOD BLESS
Michele Thomson
Kevin, I totally understand. Me too. Best sleep in the morning, and up all night! This is a very challenging, but miserable illness. If a person does not have this illness, they have no clue what MS does to a person.
Russ Hicks
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.
Birgitta
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.
Seppe
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!
Sandy
I resisted a sleep study because I was always a “light sleeper “. Apnea was causing me to wake up 15 times an hour. Also have determined that much of my pain is sciatica, not MS. The urologist got me over a fear of catheters, so I don’t wake up to pee. And I needed to improve my sleep routine.
So while I still wake up at night, I am not waking up exhausted everyday. I had to get outside myself and go for a bigger picture approach. Even though MS is the cause of most of my problems, having it doesn’t make me immune to other problems.
Good luck.
Matan Rochlitz
Friends -
My name is Matan and I am a filmmaker.
I'm currently working on a project with a well established MS Foundation about MS and sleeplessness/insomnia. They understand just how important this issue is for people and together we want to try and make something which can take that insight to a wider audience.
It is still in early stages of development so I'm trying to get a real understanding of the issue and how it affects people.
It would be so great if any of you who are affected by this and wouldn't mind answering a few questions would drop me a line at [email protected]
Just say hi and that you're writing about the MS and Insomnia project and I'll reply with more information about the film and a few questions!
thank you
Bonnie
Hi...it’s 1:33am and here I am ready to hear more about the MS -insomnia project!!!! . Would love if I can help you help me and my fellow MSWarriors!
Deena Harris
Hi my name is Deena and I'm here for the MS insomnia project. More information when you get it please.
Barbara Graves
Hi, my name is Barbara i have all the symptoms but have not been diagnosed. How do i get my doctor to understand and do the right testing?
Susan Meece
I have trouble getting asleep at night. I have had itching so bad, I want to rip my skin open. I take two Hydroxyzine but I'm not sure that it helps. Is there any kind of lotion that I can afford? I just want to be on a normal schedule.
Tyffini Dalton
I have the itching so bad I can’t sleep... but no relief when I scratch. Have you found a solution?
Leah Godsey
I feel everyone's pain. I found my head nodding 'yes' at every comment I read. MS is different for everyone but it's also the same so often. The itching, leg pain and spacticity, insomnia, people not understanding and the list goes on. My dad used to think I was lazy but that wasn't the case. I was (and am) tired all the time. Hang in there guys. Enjoy the good days and manage the bad as best you can.