Still Sleepless in the Suburbs

More than a year ago, I posted an essay titled Sleepless in the Suburbs, whining about my prized ability to fall asleep and the sad inability to remain unconscious for any duration approximating a good night’s sleep. “Sometime between 2:30 and 3:30 on these dark and frigid mornings, my marvelous journey into the night comes to an abrupt halt. The alarm might be the clarion call to the bathroom or nothing at all. But I am awake. When that dreaded status registers, my mind jumpstarts itself, and that unquiet mind begins the race.”
Little has changed, except that the expectation of levitating into an unwelcome, upright position at an awful hour has been written into the software in my head. I expect to wake up. I am chagrined to admit that I have become predictable. Perish the thought. I resisted sleep medication until my nerves were so frayed I was chewing the blanket. Now when I awaken and cannot get back to sleep, I feel slightly punch drunk. This has to stop. Right.
Frequently I am told that sleep deprivation and MS fit neatly together. Aging must have something to do with it. Tossing and turning like a machine probably correlates to personal craziness. Sane souls do not write books, which can keep the mind racing. There is no known cure for the beasties that come out at night and dance in your head.
We have debated whether acceptance of an illness amounts to surrender. I am waving a white flag on sleep deprivation, as unhealthy as it is. I do not know what else to do. . This just may be who I am, and I am too tired to fight. Unless you possess some elixir that will swoon me to sleep, don’t bother. It is too late for your great aunt’s guaranteed sleep solution. I so want to dissolve in a snore.

59 Responses to Still Sleepless in the Suburbs

  1. Christopher March 9, 2015 at 11:44 am #

    I empathize with your plight, sir. Sometimes at work I have episodes not too unlike narcoleptic fits. So obviously something ain’t workin right. I too will wake up for some godawfully stupid reason at least twice a night, always at the same times. Usually it’s my bladder doing its inflammation dance. But sometimes it just seems to be a sadistic way of yanking me out of a peaceful dream-state, only to see my clock remind me: either I get an early start, or end up waking an hour past my alarm and late for work… again. When I try to get an early start, I’m wall-eyed and usually end up falling over and/or into stuff in my studio. Just can’t win for trying.

    • Richard M. Cohen March 9, 2015 at 12:33 pm #

      Waking up exhausted is the best part. I am sure you know that fatigue is the most common MS complaint. And the answer? Just suck it up. Useful.

      R.

  2. Eliz March 9, 2015 at 1:07 pm #

    I hope you don’t mind me using your post to get some feedback on something that has helped me. When I had my first course of steroids I was a mess. I already had insomnia but that put me into an ugly place. The steroids were subsiding but I started Low Dose Naltrexone. Within about a week, I was sleeping. I went from insomniac to sleeping from 11:30 pm to 8am like clockwork. I could get up earlier or go to bed later but the point was I felt rested. My energy increased. I felt great.

    Then the benefits I was getting seemed to fade more and more (2 years later) until I wondered if it was really working for me or against me. I stopped taking it. I don’t feel any different. Anyone else have experience or thoughts about LDN? I’m curious how many are on it.

    • Richard M. Cohen March 9, 2015 at 2:55 pm #

      You don’t have an aging prostate. Once I am up, I’m up.

      R.

      • Eliz March 10, 2015 at 11:21 am #

        No Richard, but you reminded me that was another lasting effect of the LDN. When I started sleeping through the night, it allowed me to ignore the bladder spasticity. I don’t think I’ve gotten up in the middle of the night more than two dozen times in the last year compared to one or two times a night before that.

        Now when I’m awake, that’s another thing. I am lucky to keep it to once every hour. It sucks.

    • Betty March 9, 2015 at 3:35 pm #

      MS aside I can relate to all of the above; the normal, abnormal sleeping patterns of the 55+ Club, the bladder alarms, and the overactive mind. My night cap for the past three years has been 3 mg of LDN, 500 mg of magnesium citrate, and 10 mg of Baclofen for spasticity when needed. The LDN calls in extra endorphins which (for me) deliver active, and memorable dreams. The only other thing that sends me faster and deeper into Snoozeville is watching baseball on TV, which is not always an option.

    • Jan March 9, 2015 at 9:04 pm #

      Elizabeth, early on I tried LDN. I keep a monthly health log, a short paragraph (yes, I know, really short, believe it or not) and just looked back. I’m at year 10; tried LDN 3x during years 3-4 and never could make it to 4.5 mg from 3 mg. Log said I was done with it after it making my vision worse and my legs more stiff (and I was a whole lot better then). I had wondered if it triggered the EM/pain issues: who knows.

      The compounding pharmacy (new term to me at the time) I got if from is in FL, and the guy there takes it just to take it. They do annual conferences on it.

      My body was just not made for meds, I guess. After my recent worst-ever MS attack, I requested 3 days of Solu-Medrol infusions. Saw no real benefit. First try a few years ago-great (but some trouble sleeping and also a wind-down 7 day pack); 2nd try; fair. This one, nothing that I could empirically see, though I slept okay. The only value was in chatting with the nurses and fellow patients.

      Am somewhat better after a month (would have expected results sooner, so I think time is what worked). But, as with MS in general, I think that everyone reacts differently.

  3. Suzanne March 9, 2015 at 1:10 pm #

    When I can’t sleep, I find it best to “redirect” my thoughts, whether it’s plugging in my iPod, putting in one earbud (not the side I’m sleeping on), and listening to some form of meditation, be it healing bells, Eckhardt Tolle, or whatever causes you to focus, and you may find it’s almost impossible to listen to the other chatter going on, AND – it does soothe you back to sleep….just a thought. If that doesn’t work, record some nature programs on TV (sorry Meredith). Ocean documentaries are the best! I don’t have MS but I have had cancer. So I am familiar with the type of chatter it is…Good luck!

    • Richard M. Cohen March 9, 2015 at 2:57 pm #

      Now about that prostate.

      R.

      • Hannah March 9, 2015 at 6:02 pm #

        I’m sorry, did you say you had a prostate?

      • Hannah March 9, 2015 at 6:07 pm #

        Sorry that wasn’t fair or nice. My dad had prostate cancer. I was just being a turd.

  4. Jeff March 9, 2015 at 3:48 pm #

    Getting a good night’s sleep has been a struggle for much of my adult life, but it kicked into high gear a few years back. I went to the medicine cabinet for help and quickly found myself “addicted” to Ambian – soon not able to fall asleep without taking one. This continued for the better part of a year until I realized it was not the solution. I was still getting crappy sleep and now my daytime hours were becoming more and more foggy.

    I started meditating about 8 months ago with mixed results until something clicked in November of last year. Now, I meditate daily and I must say my sleep is better. No drugs, and I usually fall asleep in a half hour or less and only wake a few times a night – gotta love the MS bladder. I am usually able to fall back asleep pretty quickly and, all in all, my sleep is better.

    Is it the meditation, or the elimination of drugs as a crutch? Not sure, but I’ll take what I can get!

    • Jeff March 9, 2015 at 3:50 pm #

      BTW, for those struggling with meditation, here is what did the trick for me – http://www.headspace.com/ – I find this guided meditation to be exactly what I need. There is a cost after the first 10 sessions.

    • Richard M. Cohen March 9, 2015 at 7:39 pm #

      Absolutely. Take yes for an answer.

      R.

  5. MB March 9, 2015 at 4:57 pm #

    I have a love/hate relationship with waking up in the middle of the night, which I thankfully don’t do very often. When I dream I am usually able-bodied. When I wake up I realize it was only a dream.

    Strange that the “beasties that come out at night and dance in (my) head” are just the vestiges of my former self.

    Whoever said “pain of mind is worse than pain of body” probably had a debilitating chronic progressive illness.

    • Richard M. Cohen March 9, 2015 at 7:40 pm #

      Good phrase and true.

      R.

      • MB March 10, 2015 at 9:40 pm #

        The pain of mind is worse because we inflict it upon ourselves whereas the pain of body is caused by this disease. The MS version of S and M with no one getting off except maybe Big Pharma!

  6. Jan March 9, 2015 at 9:18 pm #

    Ah, the writer’s trick. Keep a pen and pad of paper tucked just under your bed, but within reach. When you awake in the middle of the night with an “aha moment,” reach down and scribble it in the dark (so as to not interrupt your sleeping spouse).

    And then, try to read your writing in the morning. If you’re fortunate, you can. Sometimes I can; sometimes not (very frustrating, and then I spend time trying to figure out what the heck my so-called brilliant thought was all about).

    I was not blessed with the power-nap gene. In fact, I fail miserably at resting. Oh, how cool that would be!

    A friend said to take Melatonin at bedtime, esp. after the time change. I think that a decent Cab worked better (though it maybe made inflammation worse). Hard to tell… I tried both, and my husband was out-of-town on business, so who knows if I snored! And that’s a whole topic in itself… never did that before!

    • Hannah March 10, 2015 at 9:34 am #

      Melatonin works well for me when I need it. Anxiety keeps me up at night. In general I avoid any exercise after 5PM, and I try to avoid caffeine. I love coffee, so I try to drink decaf after 12PM…only 1-2 cups of regular in the morning, or I drink black tea. I also limit alcohol intake at night because although you fall asleep faster when you have had alcohol, apparently you don’t get as deep or restful sleep. Who knows.

      Just heard this piece on Circadian rhythms on NPR. Seemed applicable.

      http://www.npr.org/blogs/thesalt/2015/03/10/389596946/circadian-surprise-how-our-body-clocks-help-shape-our-waistlines

    • Richard M. Cohen March 10, 2015 at 4:09 pm #

      I have no writer’;s tricks up my pajama sleeve.

      R.

  7. Yvonne March 9, 2015 at 10:19 pm #

    I finally gave in and started taking sleep meds. Between the restless legs’ tingling nonstop and ghost pain that happens sporadically in my lower jaw, yes another strange MS occurance, my sleep cycle was reduced to about 4 hrs. Nothing else was working and walking is difficult enough. Sleep deprived mobility was worse. My doctor finally went along with my request for sleep meds and I get 6-7 hrs depending on my liquid intake. I try not do drink after 8:00pm to curve bathroom interruption of sleep. Guess it’s like everything else. Whatever works and gets you through the night.

    • Richard M. Cohen March 10, 2015 at 4:11 pm #

      Right about that.

      R.

    • Richard M. Cohen March 10, 2015 at 4:12 pm #

      Right about that. Anything that works is a keeper.

      R.

  8. Jan March 9, 2015 at 11:15 pm #

    Music therapy.

    Mine is in the car while driving on errands. Loud; 70’s, 80’s variety. KC and the Sunshine Band. Bee Gees. Elton John–but The Lion King can bring tears (any former skating, “emoting-type” songs can).

    I want to be sensitive to those of you who cannot drive, so please know that it can still work at home, too. Revving up before sleep is likely not wise, but calm music may be.

  9. Eliz March 10, 2015 at 11:26 am #

    Oh Ambien and I are not friends. I’m one of those that lose memory of any events from about five minutes after taking 1/2 a dose to the 30 minutes it takes me to fall asleep. Apparently it was very amusing for my husband. I’ll let you use your imagination. 🙂

    • Richard M. Cohen March 10, 2015 at 4:14 pm #

      I would rather imagine.

      R

  10. Jan March 10, 2015 at 5:26 pm #

    Eliz, Ambien? (I’m chuckling at the responses from you and Richard)… Never tried it–stories of people going to the bathroom in the middle of the night, I mean still totally in their PJs, scared meds-sensitive me too much to try it!

    Richard, did you see today’s WSJ (all New Yorkers read that paper, right?) section D1 article, “Changing the Clocks Wasn’t Good for Your Relationships?” Mentioned in the article, melatonin worked for me the past two nights. (Or maybe just staying up way too late for my own good, so tired that I could no longer think—likely it was that).

    Also from the article, “If you sleep poorly, you’re prone to being self-centered.” Well, hmm… We who deal with MS/pain/health stuff very likely have a one-up there (as in sleep issues most of the time that we have learned to contend with most of the time). Health stuff, gray days, lots of snow and cold, DST—maybe it’s just really okay to let yourself feel miserable for a few days. I mean, sounds like you do, so maybe it’s okay to let yourself?

    But not for too long… we’re all expecting to see that book!

  11. Jan March 10, 2015 at 5:34 pm #

    Well, and now isn’t this cute? The bolded headline of the article just to the left of that is, “What Autopies Can Teach.”

    Yep, perspective, I keep telling myself!

  12. Jan March 10, 2015 at 5:35 pm #

    Autopsies (apparently I can’t spell too well when it’s icky outside).

  13. dale March 10, 2015 at 9:53 pm #

    Reading in bed has always been my sleep cue. But the Iditarod just started and the little Kindle beside my bed is great to check up on the race if I wake and can’t sleep. Online bridge too. Nothing like making that 4 no-trump bid.

    The ‘blackboard’ was always sure fire, old tool at sea or in the field when you only have a couple hours and HAVE to fall asleep fast. Imagine writing 100 on a blackboard and slowly erasing. Then same with each number going down. I usually don’t make it past 85 or so.

    But some days when the day can’t be over soon enough, that bed is a great escape from reality. It’s easier to forget what I’ve lost laying in bed with that little Kindle following my favorite mushers on the trail, waiting for the predictable PETA wackos to show up in Facebook comments, and having fun with others around the world following the race. There’s always someone up somewhere. And none of these folks see my walker. It’s a great feeling when folks think your wicked cool just for your knowledge.

    When the Red Lantern makes it to Nome I guess I’ll go back to the blackboard. But sometimes I actually treasure those middle of the night escapes.

    • Richard M. Cohen March 11, 2015 at 6:38 am #

      I have tried all; kinds of sleep aids, though never the Iditarod. Now that is thinking outside the box. Are you from Alaska?

      R.

  14. Rob March 11, 2015 at 10:22 am #

    Hi, I’m new to the site and find it very helpful. Thanks. I was diagnosed with MS in ’96. Been struggling with bad sleep for the past few years–perhaps a combination of anxiety from work and the MS. Fatigue hits me hard around 9 pm. If I fall asleep I’m definitely wide awake at 2:30 and it’s hard to get back to sleep. Then I’m in a brain fog for most of the next day. Sometimes 15 minutes on the stationary bike later that morning helps clear up the fog. If I can slog through the fatigue and get to bed by 10:30-11:00 I may get a decent six hours. I self cath and watch my liquid intake after 6pm, so the bladder isn’t usually an issue. My latest approach to the 2:30 wake up call has been either to read a book which may help me doze back to sleep or get myself into a relaxed meditative state by trying to keep my mind clear and repeat something like “Peace, rest.” Sometimes it works. My doctor prescribed a low dose (10mg) of Sonata/zaleplon which puts me out for about 3-4 hours, but I use that sparingly because I don’t want to get addicted and you wake up feeling foggy.

    • rm cohen March 11, 2015 at 1:39 pm #

      I do the Sonata thing occasionally and it works. I used to avoid meds because I too did not want to get addicted. Then I came to my senses. Sleep deprivation is dangerous for us. Why am I so afraid of addiction? I don’t think I am going to knock over a grocery store.

      R.

    • rm cohen March 11, 2015 at 1:40 pm #

      I do the Sonata thing occasionally and it works. I used to avoid meds because I too did not want to get addicted. Then I came to my senses. Sleep deprivation is dangerous for us. Why am I so afraid of addiction? I don’t think I am going to knock over a grocery store. Go for it.

      R.

      • Yvonne March 14, 2015 at 9:26 am #

        My sentiments exactly. I am addicted to sleep and Ambient helps me satisfy the addiction. I have no sideeffects like sleep walking talking eating or driving.If I forgot to refill prescrpion it doesn’t t make me anxious break out in cold sweats or hives. I just don’t get to sleep until i refill it. More importantly I feel no need to knock over a convience pharmacy or liquor store. Addiction to sleep means getting it by any means necessary, except propoful. Didn’t work well for Michael Jackson 🙁

  15. Mike J March 11, 2015 at 6:28 pm #

    I have come out of hiding to reply on this one! I can not remember the last time I got anything close to a good nights rest. I have tried all the drugs, meditation and every other possible solution. My best sleep comes when I should be awake. I will be 40 in September and have had MS for almost half of my life. Sure I get up to use the restroom 5, 6 or 9 times. I was told a “bag” would improve the situation, I’ll keep getting up thanks. Maybe when or if I see 79 I will consider it. At 39 there is no way. I would get up every hour before I go there. I have very little left that MS hasn’t taken. I’m not giving this up. How does the saying go “I’ll sleep when I’m dead”. I know it sounds morbid but some things are non negotiable.
    Subject change- I know this winter has been awful so I understand the desire to stay close to home. However when it does warm up we would love to have you come to Hartford and visit with the guys. It has been a while since New York. If you think those 15-20 minutes were fun, you should see what fun we have with a few hours! Feel free to email me to discuss. Hope all is well.

    • Richard M. Cohen March 12, 2015 at 10:49 am #

      Mike-

      Good to hear from you. 6 or 9 times? Geez. Isn’t there medication that will ameliorate that arrangement.

      Be well.

      R.

  16. Karen March 12, 2015 at 10:39 am #

    I strongly recommend being tested for sleep apnea, which is common amongst ms’ers. If you bolt upright gasping for air, or wake up tired, it’s a sign. Check with your doc, get a referral to a sleep clinic

  17. Geof March 12, 2015 at 10:45 am #

    I sleep for 5.5-6 hours a night. I I go longer, my pain meds wear off, and the morning sucks. I joke with my wife that I don’t care what she puts on the TV in our room because I’ve never seen a second commercial. When I was having trouble training my body to sleep on demand, I used to count down with each breath starting from 100. Then I realized counting down did not stop my mind enough to allow sleep, but I realized counting down by 2.5 uses just enough of my attention to block out any thing else and allow for sleep. Now I rarely reach 60. I tell my wife it is the great power MS has given me, but it is a crappy trade.

    • Richard M. Cohen March 12, 2015 at 10:51 am #

      I think all of us take what we can get.

      R.

  18. Christopher March 12, 2015 at 10:48 am #

    Sleep apnea would be a relief. It’s the knocking at the bladder door, or the brain just lighting up for no apparent reason that’s really hard to deal with. I took a sleep test before, and suffered terrible insomnia through the entire test. Now my insurance won’t pay for another one. I believe MS has a sadistic personality. I nicknamed mine “Stalin.”

    • Richard M. Cohen March 12, 2015 at 10:54 am #

      A urologist once told me I should train my bladder. I am teaching it to roll over and play dead.

      R.

      • Eliz March 12, 2015 at 8:25 pm #

        Now that’s funny! Especially with your affinity for dogs.

      • Christopher March 13, 2015 at 1:17 am #

        LOL! Perfect.

  19. David March 12, 2015 at 12:48 pm #

    Waking up exhausted, one of the many gifts that MS keeps giving us.Its so much and so obvious, loss of control and independence.

    You just have to laugh or cry, this disease really sucks, like most diseases do.

    So we do both, laugh and cry,and try to ease someone else s pain ,now I feel normal for a while

    I like the comment about your urologist,of course ,just train your bladder,no problem,I want mine to play the piano.

    Keep writing Richard,I think the lack of sleep just makes you stronger and wiser, sounds good anyway!

    • Geof March 12, 2015 at 1:12 pm #

      Well being a guy, at least training it to write in the snow can be a small consolation. Unfortunately even this trade has a down side as the hesitancy to come out after the rush to enable relief can be a little on the chilly side when trying to write in the snow.

      **I am now trying not to envision George from Seinfeld after skinny dipping calling out to the women “It was cold.”

    • Richard M. Cohen March 13, 2015 at 8:13 pm #

      Let’s all keep marching.

      R.

  20. Marla March 12, 2015 at 11:25 pm #

    As a fellow MSer, insomnia caused by a brain that just won’t shut-up has plagued me for over a decade but I recently found my solution. During the holidays I purchased an electric blanket. I swear, something about the electric heat makes me so lethargic and sleepy that I can doze the night (or day) away. I read online that some say having electricity so close to your body isn’t good for you and saps your energy. Well, in my case the sapping of my energy at night is exactly what I need. It also feels very soothing to my “jumpy” MS legs.

    • Richard M. Cohen March 13, 2015 at 8:14 pm #

      Then do it. What happens when it is not cold?

      R.

  21. Jan March 13, 2015 at 10:14 am #

    That blanket sounds nice–I don’t like to be cold anymore. The weather is rainy, cold, and horrid today, not a good mix for me.

    Pain affects my sleep; in the morning, I do not awaken rested. (Oh, after 10 years of MS, so THIS is really what MS fatigue is all about. The epiphany is finally truly hitting).

    But at breakfast with a read of the newspaper, a reminder about Richard’s earlier comment re “perspective” that is giving me an emotional boost: http://goo.gl/qMdTla, food for my thought likely better than breakfast?

  22. Jan March 13, 2015 at 1:43 pm #

    I should likely mention that the link first came from the newspaper read and then http://www.latimes.com/local/obituaries/la-me-michael-graves-20150313-story.html#page=2

    Time for tea.

  23. DianeT March 13, 2015 at 3:30 pm #

    Thanks, Jan, for those two articles about the architect Michael Graves. I wouldn’t have seen them otherwise, and found them very inspiring.

    • DianeT March 13, 2015 at 4:53 pm #

      Oh, and back to the original topic of sleep, there is a good free app called “Rain Rain” that I like which has a number of nature sounds to help put you to sleep like ocean waves, summer rain etc. A nice feature it has is an automatic timer that you can set so that the sound goes off by itself after you have fallen asleep.

      • Richard M. Cohen March 13, 2015 at 8:16 pm #

        Does it have a pit bull snoring?

        R.

  24. Jan March 13, 2015 at 6:14 pm #

    Thanks, Diane… that could even be good inspiration for a daily rest time 🙂

  25. Dale March 13, 2015 at 11:42 pm #

    Hey there Richard as to your question, no not from Alaska but northern lights is on my bucket list. I spent many seasons in Antarctica on research but can no longer pass the physical.We have a facebook group called the Mushaholics that follow the races and support some of the mushers. A favorite of mine is Jodi Bailey born on Martha’s vineyard which we can see from our roof. But the races are all about the dogs and some truly amazing people. Iditarod and Yukon quest are great teaching tools for all sorts of things. Iditarod.com has tons of things to explore. I’ve been trying to find time to finish an Iditarod math program for kids.
    You really should read Winterdance by Gary Paulsen. Just a funny and wonderful book about ‘the fine madness of running the Iditarod.’ I re-read it often, it takes my mind off my troubles.

    • Richard M. Cohen March 14, 2015 at 9:51 am #

      Exotic.

      R.

  26. michael March 14, 2015 at 12:24 pm #

    When I decided that sleep was overrated I started sleeping better. Weird but true.

  27. Cassie August 16, 2015 at 8:46 pm #

    Just going back and reading all your posts…

    I have a lot of sleep issues and my magic cocktail is this. (not healthy, but I sleep and at least don’t wake up with night terrors) 5 mg Ambien plus 25 mg of Elavil plus 1/4 Valium about 15 minutes after those. OUT like a light.