Some Rambling about Insomnia, Melatonin, Nightmares, Anxiety and Autism

Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:

Sleep Study

In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.

The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:

sleep_nomelatonin
Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping
Dark gray areas=sleeping;  Light gray areas=lying down, not sleeping;  White areas=not lying down/sleeping
Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping

I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.

Some statistics:

Sleep efficiency (time spent sleeping/time spent lying down)

  • with melatonin: 82%

  • without melatonin:  80.5%

Average hours of sleep per night

  • with melatonin: 7 hours 10 minutes

  • without melatonin: 6 hours 45 minutes

I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.

So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.

Melatonin

Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.

If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:

  • Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.
  • High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.
  • In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.
  • Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.
  • It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)
  • Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.
  • If you feel groggy in the morning, try reducing the dosage.
  • Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).
  • Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.
  • Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.

My Nightmare Journal

When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.

According to my log, here is # of nights that I had nightmares each month:

  • Nov 15th-30th: 4 nights
  • December: 10 nights
  • January: 3 nights
  • February: 1 night
  • March: 0 nights
  • April : 0 nights

I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!

Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this.  And hey, the nightmares disappeared!

Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.

The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.

In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.

This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.

That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run  but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.

I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.

All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.

I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.

If they return, I’ll be back to ramble some more.

—–

A related link about sleep disturbance and ADHD that talks about melatonin and light therapy as ways to lessen insomnia: findings from a study about ADHD and sleep dysfunction

30 thoughts on “Some Rambling about Insomnia, Melatonin, Nightmares, Anxiety and Autism”

  1. Interesting!

    Note that you can also get melatonin over-the-counter in Canada. It’s definitely available from Webber Naturals in 3mg dosage sublingual tablets; not sure about other brands or dosages. (How do I know? I’ve got a bottle here in my bedroom that my middle sister recommended for me; she uses it with her son, though she cuts the tablet in half for him – he’s 3.)

    I didn’t think about taking it only every two days. And I found that taking it meant it disrupted my usual means of getting to sleep (imagining myself in a fiction scenario), which is one of the ways I bring myself down from a “high alert” state. (Or try to, at least. Have been having minimal luck with that lately, as per my latest post: Meltdown of Frustration @ http://tagaught.net/meltdown-of-frustration/ .)

    But perhaps taking it every two days, and / or cutting the dose down, will help. A thought! Thank you, Musings!

    😉 tagAught

    1. That’s good to know. I think there are some countries where you need a prescription for melatonin.

      Also, I know exactly what you mean about how you fall asleep. I’ve mostly lost this ability to since starting the melatonin. It seems to make me to drowsy to concentrate or something?

  2. I have had very little luck with Melatonin. There is a fine line of what is too much for me and what is too little and trying to figure out the correct dosage is difficult. In the two time periods that I have tried using it, it seemed to help me sleep for a few days, but then stopped. I also had disturbing dreams while taking it. These dreams were different than the ones I usually have.

    I feel my stress levels and pain play a big part in keeping me from sleeping well. I toss and turn all night. I have considerable stress in my life and I also have chronic health problems and I hurt all the time. I do not tolerate narcotics and I have not found anything else that has any affect. My natural rhythm is to stay up later and sleep in later, but as a teacher and a parent, I am not allotted that. I sleep better during the time that I have to get up in the morning. I never feel rested.

    We have had some luck with my son. When he gets in to bouts where he is waking up at 3AM, we give him Melatonin before he goes to bed for a few nights. It seems to jump start a regular sleeping cycle for him. We don’t have to give it to him every night.

    I also have reoccurring bad dreams. Luckily I haven’t had any nightmares for sometime. In the reoccurring dreams, I am back living in a place that I lived as a child (my parents moved around a lot when I was growing up). There is either a volcano erupting, or some viscous storm brewing (tornado, lightning), sometimes there is an erupting volcano and a storm. There has even been a massive tidal wave. In the dream I have the overwhelming need to run, but I have to save people first (usually my sister or my children or my pets). These dreams have been happening to me for as long as I can remember. The reoccurring nightmares that I was having for years dealt with a period of prolonged trauma. Those dreams would ruin the next day for me.

    I feel these dreams happen because of the stress in my life. I want to run away and hide, but I can’t. I have to be responsible, I can’t just think of myself. I feel overloaded much of the time. The stress ends up manifesting itself as the volcanoes and storms in my dreams and I end of feeling that I have to do what I can to save the people around me, I just can’t run away.

    1. I’ve heard others say that the melatonin isn’t continuously effective and that it can cause very severe nightmares (in both children and adults). I’d say that it works for me 6 nights out of 7. I still have some rough nights but overall my sleep patterns are better.

      It sounds like your reasons for not sleeping well are related to stress and pain, whereas I think mine are more related to underproduction of melatonin. I haven’t slept well since childhood and like your son, my sleep patterns can fall into weird cycles. In my original post about insomnia I wrote about how our circadian rhythm isn’t naturally 24 hours and needs to be constantly reset by environmental cues. Some autistic people seem to have problems with naturally resetting and I think that’s where the melatonin is effective.

      It’s interesting that you dream of weather/natural disasters so frequently. (My husband does too and I never do so it’s a topic of conversation at our house occasionally.) It makes sense that your natural disaster dreams are stress related because a natural disaster is such a massive threatening uncontrollable event.

  3. Awesome study and even “awesomer” results! I really believe we do a lot of work in our sleep. I do. I have had too many dreams that were part of a progressive series and helped me deal with something I was contending with in my waking hours. I think the “Fuck you!” really helped. You shined the light on it and stripped the bully of its power. I have one reoccurring anxiety dream, it has replaced the final exam but never went to class dream. The new anxiety dream is I am pregnant. Yes, on the eve of my youngest going off to college I have this dream that I am pregnant and the whole child raising clock gets reset. Our minds are powerful, powerful places! 🙂

    1. Yeah, I think shifting my fundamental thinking was more powerful than any number of hours I could have spent trying to–I have no idea–whatever one does when one processes things. 🙂

      Oh, also I’ve been dreaming about being pregnant and/or having a baby a lot lately. I’m chalking it up to the start of perimenopause. Tons of fun.

  4. p.s. My youngest, the one that is about to go off to college, she takes Melatonin and swears by it. She too experiences a lot of anxiety (just don’t know where my kids get it!!!) and it helps her settle down and fall asleep.

    1. That’s great that it works for her! My husband occasionally uses it too, but much less often than I do because I think he’s more of a garden variety insomniac than a faulty brain wiring insomniac and doesn’t get as much of a consistent effect as I do.

  5. I wonder if your nightmares could also be seasonal/holiday related.

    I have always noticed that the world is an anxious, unsettled and often guilt laden place during Christmas time unfortunately.
    Could external stimuli be contributing to your dreams?

    1. They may have been, or perhaps the holidays made them worse/more frequent. Historically I have nightmares year round. They tend to come in batches: a week or a few weeks where I’ll have them more nights than not, then they’ll disappear for weeks. I could be in a very long “off” cycle. I’m not completely ruling that out. We’ll see what the future brings.

  6. Melatonin saved our lives in this house…no-one could ever fall asleep (except for my non-ASD hubby) the rest of us would just lie there staring at the ceiling! With melatonin all of the kids are falling asleep AND for the most part staying asleep (usually). As for me, since I am preggo now no melatonin for me and my sleep sucks once again. I lie there for hours on end trying to fall asleep and become irritated because I am not sleeping…and YES YES YES the nightmares..what is up with the nightmares??? Even they calmed a little when i was sleeping better. My poor little ones have night terrors too… not fun.

    1. Yes, the melatonin has been amazing. I sympathize with you not being able to take it right now, especially with how hard it gets to sleep anyhow as the pregnancy progresses.

      The nightmares. I have no idea. I wonder if in part it’s because we’re constantly experiencing all sorts of cognitive dissonance and our brains are in such a constant state of “WTF world?” 🙂

  7. I use an iPhone app named ‘Sleep Cycle’. I use it because it wakes me up more gently (I hate to wake up with a shock).

    The Sleep Cycle alarm monitors movement activity via the touchscreen and wakes me up at the time where I sleep lightest within the time frame I have specified. The alarm sounds to choose from are gentle (and own music can also be chosen).

    Sleep Cycle also makes sleep statistics a bit like your arm band – just simpler and probably not as reliably. It provides a curve over each night’s sleep (movement) pattern, measured from ‘Deep Asplep’ over ‘Asleep’ to ‘Awake. Additional information includes the ‘went to bed/woke up’ times, total sleep time for each night, and average total sleep time across all nights measured.

    My average total sleep time per night over 144 nights is 5 hours and 43 minutes. I don’t think that is correct though, because I sometimes take a nap during the day and snooze after the alarm rings, which isn’t counted – so I think I sleep more, maybe an hour more on average. Very short sleeps (less than a few hours or so) are also not counted in the average. Most important reason I don’t trust the statistics: I don’t sleep alone and I presume it measures any vibration from movement in the bed, not just mine (although it is put in my side). My sleep appears very interrupted (the curve goes abruptly up and down a lot). I actually thought that was normal. And also, as mentioned, I don’t think it measures my movement only.

    1. You got me curious about just what normal sleep is so I did some reading. Apparently adults need about 90-120 minutes to complete a full NREM-REM sleep cycle and we’re supposed complete 4-5 sleep cycles in a night. So on the nights where I’m sleeping in 30 minute intervals or only getting 1-2 extended periods of deep sleep, I’m probably coming up short in terms of sleep quality.

      I’ve seen the sleep apps for phones but didn’t know how they worked. (I can also see how it might pick up on the movements of a bedmate.) The alarm option sounds awesome. I don’t use an alarm to wake up in the morning but if I needed to, I”d definitely try that out.

      Do you find that the amount of sleep you get is enough? I seem to function best if get about 7 hours of sleep. Less than that and i get fuzzy brained in mid-afternoon. But my husband can get by on very little sleep for days in a row and seems to be able to catch up with just an hour’s nap.

      1. I don’t know, I often feel tired… And I am always fuzzy-brained in the afternoon:-). My sleep needs vary, and I suspect the quality/depth of sleep matters more than sleep length. Sometimes 3-4 hours of sleep can be enough, and other times I can sleep 17 hours in a row (not kidding). Being physically exhausted can actually improve the sleep quality, so it can sometimes break a vicious poor-sleep circle to skip a night’s sleep and then sleeping a lot the next night + maybe some of the day. The previous night I didn’t go to sleep (because I was busy with something and needed a break – I worked over the weekend), and then I slept extremely deep the next night + some of the day and feel quite restored now, mentally and physically.

        Otherwise, consistent, proper bed time routines are crucial for a regular everyday sleep pattern, I think. I’ve introduced it recently (skipping sleep is the exception) to reduce nightmares, poor sleep and erratic everyday energy fluctuations… But I suspect you already have proper routines, you seem like a very well structured person.

        120 min x 5 sleep cycles = 10 hours, and 90 min x 4 = 6 hours… So proper sleep takes between 6 and 10 hours depending on the person.

        1. That makes sense as an explanation for how some people can sleep less and still feel well rested.

          I have catch-up days sometimes. At most I’ll sleep 12 hours but it really does help make up for some of the deficit that develops over time. One thing I’ve noticed is that being exhausted can actually make me sleep less well, especially if I’m physically exhausted more so than mentally.

    2. So it is the opposite way around for you…

      One thing I have noticed is that it is possible to be so sleep-deprived that the idea of going to sleep is scary. Like ‘if I fall asleep now, I will fall so deeply asleep that I may never wake up again’.

      I can literally sleep for more than 24 hours (with some minor wake-up incidents and falling asleep again immediately after drinking a glass of water et.c). Not that it happens often, but it feels really good afterwards when it does… Like having been thoroughly regenerated, almost like being a new person.

  8. Interesting self study. I am glad you feel better with it…I have heard people raging about the benefits of melatonin for their children w asd but I am not ready to take that step… My son sleeps mostly through (understand no nightmares, no semi awake or wakeup phases that are not part of a natural sleep circle) but takes sometimes hours to get to sleep. This depends a lot of his day/week tho, stimuli, exercise or incidents, and I am still trying to adapt how we live and deal with things rather than to just medicate his sleep. I understand nightmares et all called for measures in your case but I think people have to be careful w the systematic longterm use of a product like this on children, as no longterm studies seem to be existing and recommended use is up to 3 months only. I am not at all against modern medicine or synthetic drugs btw, but I think we live in times where people will turn more likely to drugs than to adjust their lifestyle.

    1. Yes, I would be much more cautious with a young child than I am with my (old) self. One thing I want to clarify, which I didn’t in the post above, is that melatonin is a substance that occurs naturally in our body so it’s not considered a drug in the way that other sleep aids (i.e. unisom, zzzQuil) are. Of course, that doesn’t mean it’s 100% safe or free of side effects, especially for people whose bodies already produce adequate levels.

      In terms of adaptations, you might find this post helpful: https://musingsofanaspie.com/2012/11/29/wide-awake-autism-insomnia-and-me/ It includes a list of things that have helped me sleep better (now and as a child). It sounds like you’re already on the right track with paying attention to things like exercise and arousal level during the day.

  9. Interesting to know that I’m not the only Aspie having sleeping problems! Been trying Melatonin (3mg) for a couple of nights, and yes, the dreams are a bit more disturbing than normal. Not quite nightmares, but close.

    Also find that I’m actually yawning right now (22:30) even without taking any pills tonight. It resets beautifully. Usually I’ll be up until 3-4 in the morning, my head buzzing away like a band of squirrels on espresso, bouncing all over the place.

    I find that my mind is “quieter” after waking up from a melatonin sleep, like I’ve taken a mild antipsychotic (was prescribed risperidone briefly, for severe insomnia that other sleeping pills couldn’t touch). Not sedation, just “tranquil”, like the band of hyper squirrels are being under direction by one boss squirrel. Gets “noiser” up there after an hour or two of stimuli.

    Been using herbal sleep aids until decided to give this melatonin a try. The herbals (e.g. Valerian, Hops, Camomile) just makes me feel calmer, but does nothing to help me sleep.

    Now to see if I can have the same quality sleep without it tonight.

    1. I have weird vivid dreams when I take the 3mg pills. The 5mg dose works better for me, but I’ve talked to other people who say it’s too strong and gives them nightmares. But once you find the right dosage, it’s something of a miracle. 🙂 I still occasionally fall into a shift sleeping pattern, about every 4th-7th night for 1-3 nights, but overall I’m sleeping much better than I was without it.

    1. Honestly, I’d rather not promote the company because they require you to subscribe to their service to get the data from the band (it’s useless once you stop subscribing) and I wasn’t happy with their customer service in the end. Since I wrote this, a bunch of new products that do the same thing have come on the market so I’d recommend reading some reviews and choosing something that fits your needs.

  10. Like some time ago to your post on the Aspie quiz (https://musingsofanaspie.com/2012/11/20/taking-the-aspie-quiz/) and my comment on the scientific literature around it (July 1st, 2014) also your case report 🙂 on melatonin prompted me to rummage through the corresponding PubMed references.

    What I found made me more excited by the minute:

    First, there is *a lot* of reports that melatonin levels are significantly reduced in people on the spectrum (Damn, what term to use nowadays? Aspies, my favorite and brief word is out; ASD patients is wrong-wrong-wrong; spectrumites maybe? 🙂 ). Even more, there is quite some biochemical/genetic data on the melatonin deficiency. Hence the strong connection with sleep onset latency and reduced overall sleep duration.

    See e.g.the freely available article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2199264/; Melke, J., H. Goubran Botros, et al. (2008). “Abnormal melatonin synthesis in autism spectrum disorders.” Mol Psychiatry 13(1): 90-98.

    That’s not what made me scientifically-flappy but rather that melatonin works more or less only for Aspies! The numerous studies on NTs, including meta-analyses came up with almost no effect on taking it for better sleep, maximal a few minutes, but there are several ones showing nicely that our tribe profits from this harmless drug!

    Another open-access reference to that: (http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2011.03980.x/full; Rossignol, D. A. and R. E. Frye (2011). “Melatonin in autism spectrum disorders: a systematic review and meta-analysis.” Dev Med Child Neurol 53(9): 783-792.

    The paper is horrible to read for laypersons but, as pointed out, is free for download and contains the beautiful sen-tence in the discussion, quote ‘Overall, sleep duration was 73 and 44 minutes longer during melatonin treatment than with baseline and placebo respectively, and sleep onset latency was 66 and 39 minutes shorter during melatonin treatment than during baseline and placebo respectively’. Although most of the text in this one refers to pediatric studies, the for-pay articles on analyses with adults come to roughly the same conclusions.

    Ha! Nice, isn’t it?

    Not to forget: I the loved the way how you conducted and reported your self-observation experiment.

    1. Thank you for the links and for summarizing the key findings here for those who don’t want to slog through a research paper. I’d seen the meta-analysis but not the genetic study. I’m not at all surprised to see that 65% of the autistic people in their study had melatonin levels at half that of the controls. Melatonin has been a lifesaver for me.

      1. To specify a little further for eventual readers: In the meantime I found 5 (!) meta-analyses on the helpful effects of melatonin for improvement of sleep quality in ASD. These 5 covered 16 individual studies, with some overlap. Although most of the individual ones are quite bad (sample size, selection of participants) the overalll picture is convincing. Moreover, almost no negative side-effects were reported once the proper dose was established, in line with your experience and some of the comments. Thus, apparently, self-medication with melatonin can indeed be recommended for most of us.

        For me, sleep came back with anti-anxiety meds, after lots of trial and error. But that’s a different story.

  11. OMG OMG YOU ARE ALSO FASCINATED WITH SLEEP STUDY!

    I wrote my own software to parse data from the fitbit using their free API for 3rd party software, and I integrate it with data from my BiPap system. I even came up with a formula to quantify my sleep levels and how rested a given sleep likely made me feel.

    But it all went offline when my basement flooded. My storage server survived the sewage flood but my virtual machine server didn’t. I’ve been without my software for 2 weeks and I’m going nuts without it. When it comes back i’ll share screenshots.

    1. I’m so sorry that you had a computer disaster! That sounds very stressful. But when you get back up and running I would love to see our screenshots. 🙂 Since I’ve been taking the melatonin regularly, I’ve been sleeping better though still not anywhere in the neighborhood of what most people consider normal.

  12. This is a great guide.My question is, does insomnia has anything to do with teeth grinding also? My husband is suffering from insomnia, but whenever he sleeps for a couple of hours he grinds his teeth badly.

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