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Pain + Insomnia = Painsomnia

Pain + Insomnia = Painsomnia

Whether it is because of medication side effects, pain itself, or just life, a lot of us with migraine also deal with occasional insomnia.

For me, it happens most frequently when I’m having a couple of days in a row with fewer migraine symptoms. Because I haven’t had to take the medications for pain and nausea that tend to cause drowsiness, even if I feel fatigued I can find myself lying awake at night with my eyes wide open. My iPhone switches at 7 pm to the new “Night Shift” setting to diminish sleep issues, but I still force myself to put it down, out of reach, and try to breathe deeply, calm my brain, and just lie there until sleep comes.

But, so very often, it doesn’t.

One of the important lifestyle adjustments doctors suggest those of us with migraine disease make is to go to bed and rise in the morning at regular intervals, the same times every day. Lack of proper sleep, or too much sleep, can trigger a migraine. Unfortunately, knowing exactly what the results to my illness will be from too much wakefulness causes me to feel extra anxious about it, which obviously doesn’t help the situation. After a reasonable amount of time trying to relax in bed, I’ll scroll through Facebook again, or read part of a novel, and get more and more frustrated and agitated each time I try again to close my eyes and let the drift happen.  This is when I begin to toss and turn, possibly develop restless leg syndrome, and invariably, the allodynia I often experience in my arms and legs will make its appearance and the sheets will begin to feel like sandpaper against my skin.

For me, this is what “painsomnia” truly is. In online support groups for migraine and other illnesses, you will see much discussion of painsomnia, a term coined by “spoonies” (those in the chronic community). I have seen many creative memes and graphics depicting this unpleasant combination of pain and sleeplessness, which is loosely defined as chronic pain being too severe to allow for normal sleep. However, I find that for me, the insomnia tends to come first. The frustration and agitation lead to restlessness, allodynia, and eventually headache. On these nights, I may finally drift off into a light, unsatisfying sleep between 4 and 6 a.m. When I wake up from that at around 8 or 9, I will have a full-blown migraine with increased fatigue, significant pain, balance issues, and nausea.

What a fantastic way to start the day.

It happened to me this past weekend, which at least is slightly easier in that I don’t have to prepare the girls for school and drive them there at predetermined (early) times. But last night was Sunday, so I prepared in advance for possible painsomnia so that Monday morning would go as smoothly as possible. Fortunately, I entered a fairly solid sleep before midnight, which could have been coincidence, or maybe because I followed these steps throughout the afternoon:

  • No caffeine after 1:00pm. I love Cherry Coke, but yesterday I made sure I was drinking water or Gatorade in the afternoon and evening. I also made sure to not take any medications which contain caffeine, or those which can cause sleeplessness as a side effect, such as Sudafed.
  • Slowing down before lying down. Now and then throughout the evening, I made sure to pause and sit quietly, breathing deeply. Practicing meditation or yoga before bedtime can help calm the brain, heart rate, and blood pressure so that when you do lie down to sleep, your body is ready.
  • No snacking before bed. Going to bed hungry doesn’t help, obviously, but I find if I eat right before I try to sleep, I have a harder time drifting off.
  • Putting screens away. I do keep my phone near my bed at night, but I last night I plugged it in and silenced it before the girls’ bedtime and didn’t pick it up again. Even with settings that reduce melatonin-affecting blue light exposure, seeing your uncle’s angry political Facebook post or reading a news alert about a disturbing world event will not exactly invite relaxation. (If you haven’t yet discovered “Night Shift,” it can be activated on iPhone through Settings > Display & Brightness. For Android devices, there is a free app called “Twilight.”)
  • Preparing completely for morning. One way or another, morning will certainly arrive. If the girls’ clothes are laid out, lunches at least partially made and backpacks ready to go, it is much easier to shuffle through my morning routine even if sleep has been evasive.
  • Listening to quiet music. I find if I have something to listen to, my mind doesn’t become caught in repeating anxious thought patterns as I try to go to sleep. I love Radiohead for this. I also sometimes use an app called “Relax” which plays white noise, nature sounds, or soothing music.

In addition to the above steps, I also always take 5 mg of Melatonin with my night meds, which helps regulate sleep naturally and can be beneficial for migraine prevention too. If you feel lack of sleep is adversely affecting your health or state of mind, do make sure to talk to your doctor; and certainly do so before adding even over the counter supplements or sleep medications to your regimen. Feel free to share any of your own methods for sleeping more successfully in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jojiieme
    3 years ago

    Oh, another thing: I’ve just completed an online course on How Medicines Work, from Monash Uni via futurelearn.com There was a really good module on pain and how morphine and codeine work. When you know the chemistry, you can see the connection with other things we don’t even think about – and suddenly the connections with anti-inflammatories, or with the cheese and fermented/aged/preserved foods becomes clearer.
    If you have painsomnia, you might want to consider not eating pizza or lasagna or similar dishes at night, nor having anything marinated even a little bit, nor vinegared dressing on a salad…

  • Jojiieme
    3 years ago

    I’ve given up fighting 🙂
    My mother used to have really broken nights, my older sister goes through periods with broken nights, my brother has rough nights…. Seems to coincide with all kinds of pain, not just migraine (osteoarthritis, psoriaritic gout, asthma, PMS etc).
    I’ve done the sleep workshops, the meditation workshops, the bodywork workshops; the melatonin didn’t work for me as I reacted to the medications. I don’t drink caffeine any more apart from one cup a day, so that’s not an issue.
    What does work is simply not fighting.
    I get out of bed, go to another, quiet, dim room. I sit quietly. I do a full body scan, as for a meditation, starting at toes and working up, relaxing any tension I find. Breathing easily, I clear my mind. (Mindfulness stuff) if I don’t doze where I am, after an hour, I’ll do some quiet study or chores. (If I doze, when when I wake I go to bed)
    If the clock hits 4am, I give up: I wake at 5:30am anyway, leaving for work at 6:30am. I manage worse with less sleep than no sleep. Instead, I make sure I’m completely ready for work, have things defrosting for dinner, ready for an easy evening. I’ll get washing on, or polish something; study some more. I’ll do some stretches and have a good shower, make sure to eat a good breakfast.
    If the migraine hits later, it’s usually much later in the day, so I can get home alright.
    So I don’t know if this helps or not. It’s more peaceful inside me 🙂 I can car-pool on days I can’t drive anyway, which helps, and I have supportive staff for ‘bad head days’. Since my work is based on health advocacy, it doesn’t hurt to show the clients that staff are human too.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Like Brooke, I am also really impressed by your self-acceptance as well as the steps you’re taking to handle insomnia! I also love the fact that you have support at work and that you’re not afraid to show clients your human, hurting side. I don’t know if you read this piece: https://migraine.com/living-migraine/it-is-a-river-coming-to-terms-with-my-chronic-illness
    but your first line “I’ve given up fighting :)” definitely called my river analogy back to my mind. Thanks so much for your suggestions (about the food, as well – fortunately I tend to avoid those things anyway)! ~elizabeth

  • Brooke H moderator
    3 years ago

    Hi JOJ,

    Thank you so much for taking the time to share your experience with migraine and insomnia. It’s sounds like you’re utilizing a wonderful amount of acceptance and self-compassion in coping with the ups and downs that can come with both. It can be very hard to go against our human tendencies towards control for sure. Your words make me think of this article by one of our contributors on radical acceptance:https://migraine.com/blog/radical-acceptance/. It’s also good to hear you work with others that are understanding and supportive. Thank you again and we’re glad to have you as part of the community!

    Best,
    Brooke (Migraine.com team)

  • Tamara
    3 years ago

    This is a huge issue for me as well so I have a few suggestions. First is the following website that covers A LOT about proper sleep hygiene (which you need to do EVERY night whether you are painful or not. This online course is a seminar I did through CHAMP – the headache specialist management team in Calgary, AB (so I hope they know what they are doing).

    https://myhealth.alberta.ca/Learning/sleep-strategies/before-you-start

    You are already doing a lot of those so great!!

    The big one that helps for me was not lying in bed when I couldn’t sleep, after 20 minutes you are suppose to move to another room, get vertical but do NOT play on your phone, read a book or anything stimulating (I either stare at the wall, outside or listen to an extra relaxation recording). Only try again once you are tired. No reading, watching TV, phone or anything in bed or for an hour before.

    I also double my melatonin (up to 10mg) on days I think I will have problems. Hope that helps!!

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Thanks so much for your suggestions! I have actually found that increasing the Melatonin to 10mg definitely helps with sleep, but at that dose I *always* wake up with a migraine and stumble through the day with more fatigue than usual. I definitely am not good about getting up after 20 minutes of trying! Thanks again and take care!

  • Mr FBP
    3 years ago

    There is good evidence that people used to naturally sleep in two “shifts”, and this ended after the invention of better and more affordable lighting (around the eighteenth century) which allowed people to stay up later. Lots of older literature refers to people being active for up to an hour “after the first sleep”

    There is a BBC article on it here:

    http://www.bbc.co.uk/news/magazine-16964783

    Not to say people shouldn’t aim for a good long sleep, but they certainly shouldn’t panic about a wakeful period in the middle of the night.

    I’ve been known to put on a load of laundry in the middle of the night (ready to hang out in the morning!) or just do some other low level activity and then go back to bed when I’m feeling sleepy again.

  • Maureen
    3 years ago

    Which came first? The chicken or the egg? I often wonder if the insomnia sparks the migraine or is the prodrome signalling the onset. You might try one of your non-triptan medications at night. I use phenargan. It is sedating and also helps with my “weird” symptoms. My doctor recommended it for when a migraine seemed to be broken by the triptan but then was recurring the next day. It might help when you suspect one might be on the horizon due to painsomnia.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Hi Maureen! Thanks for your comments. I’m glad you have found something that works for your insomnia issues! I can’t take phenergan for sleep because it tends to exacerbate the restless leg syndrome. I used to have Zanaflex, a muscle relaxer, but the side effects of that became too severe also. Honestly I take a lot of Benadryl and Dramamine which I *don’t* recommend. And they don’t always work. I’ll be getting a new primary care physician soon, and I plan to talk to him/ her about it. It’s definitely not a good problem to have! Take care 🙂

  • Mr FBP
    3 years ago

    “Music at the threshold of hearing” was a description on one CD I owned, but I find setting music at a volume I can just about hear helps me drift off. I work away from home a lot, and find I need familiar soothing music to relax and sleep properly. I have “from Sleep” by Max Richter as my current drift off music. It was written with support from a neurolgist/sleep specialist and seems to work. from Sleep is an hour of extracts from and 8 hour work “Sleep” that is meant to accompany a whole nights rest. I don’t have the full version though!

    The caffeine cut off rule – for me it’s 3.00pm, and really helps. I like Rooibos tea as a substitue for regular tea. Again working away from home, there is often a never ending supply of coffee, which it took me a few trips to realise I was overindulging in. I have a drinks kit I take with me now as the complimentary drinks at hotels are rarely caffeine free.

    Thanks for the tip on the twilight app. I’ll give it a try.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Wow, thank YOU so much for the tip on the Richter piece! I’m going to look that up, as well as Rooibos tea. Thank you so much for your detailed comment. I’m glad you’re here 🙂 take care ~elizabeth

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