Hypermobile Ehlers-Danlos (hEDS): Overcoming Insomnia
I’ve suffered from insomnia for as long as I can remember; vivid dreams, nightmares, rushes of nighttime adrenaline, pain, muscle cramps dismissed as ”growing pains”, and unexplained wakefulness have been my normal from my teens into my 30s. As I became worse at sleeping, my stubbornness and coping skills thrived as I somehow managed to achieve a fair bit in a rather unwell state of chronic sleep deprivation: I’d cycle from tired, to burnout, to survival mode, then would crash every 3-4 months. From a crash, I’d crawl back up to a fatigued coping-mode only to rinse and repeat the whole cycle and wonder why I couldn’t stay on top of it. While I was aware that this was not how my peers operated, I was living my reality while keeping pace with life and the demanding work hours therein. I had even- for a time- accepted that this was just how things were and made peace with it as best I could.
In 2016 my insomnia developed into nighttime panic attacks and was at its most aggressive: I slept so poorly that I managed to break teeth (see our podcast with Dr. Bruce about that), and it’s now no wonder I had headaches on waking. It was further compounded by a brain stem & spine injury in 2017 at which point I was lucky to be able to stand on my feet at 7pm, just as I was lucky if I could sleep past 2am: Body pain, adrenaline rushes, an inability to breathe laying on my back, rat-wheel work brain, and everything in between would keep me up. It became a running joke that if any of my friends or colleagues woke in the night, I’d be there to chat because I was usually distracting myself with work by 3am. A colleague at the time informed me that periods of insomnia were normal; I didn’t have the nerve (or energy) to reply that over a decade of worsening insomnia seemed like the last thing that could be described as "normal" human physiology, even if accounting for “normal” variances.
One day, while injured and trying to push through to keep up appearances, I accidentally fell asleep in a closet at work while retrieving some material. I wasn’t asleep for long but I felt ashamed and worried that I’d let my co-worker down. A year or two after that incident, I gained a little more clarity on where I should rest my concerns: If you’re falling asleep mid-stride, don’t apologize for doing so and instead do let go of the shame that does nothing but get in the way. Understand that your system is no longer crying for help but is instead screaming for it.
Throughout 2018, I was forced to put a full-stop to the pace at which I had lived for quite some time. I thought that sleep would come easily but it didn’t. Why? For me, it was because my nervous system (and sense of self), was so used to running a mile a minute over years of adaptation that it didn’t know how to sleep until it hit a crash every few months. In short, it was very well practiced at not sleeping. While there are simple and effective things you can do to improve your sleeping environment, as laid out in our Guide To Better Sleep, there are countless habits done during the day that will dictate whether or not you’re able to achieve restful sleep. How you sleep dictates how you perform the next day but the reverse is also undeniably true. In my opinion, not enough attention is brought to that and we wait until night-time to address the elephant in the room.
While I’m not perfect, I have slept more restfully in the last 18 months than I have in most of my adult years; waking is usually limited to some flare-related cyclical dislocations/subluxations and none of them involve panic attacks or skull-crushing grinding (although the frequent tailbone migration is still just as unpleasant). This article explains some of the things I’ve changed and other successful strategies used with clients. It is by no means an exhaustive list but if we prepare ourselves for sleep during the day, we have a greater chance of achieving it each night, over time and with increasing quality.
2) Move your body
Restlessness can keep us up and cause further muscle twitching or cramping and pain. The right dose of movement is one of the best ways to clear excess adrenaline to combat this at night. Additionally, the brain stem gathers information from both your mental state (stress, emotions, etc), and physical state (energy, tension, digestion, HR to name a few), to determine whether or not to induce sleep.
I can relate to the effort required to move on the days where you feel plastered to the couch/bed/floor with fatigue and discomfort but I can also speak to how much better life gets after some blood flow and change in stimulus takes place.
How:
1. Even if you’re tired, make an effort to move in some way every day: Whatever is within your capacity, do it. Start with moving on purpose 10 minutes 2x/day and gradually increase as you’re able.
2. Head out for a walk or some gentle floor-based exercises to get the ball rolling in the right direction: The worst days and nights are usually the ones following a day or days of immobility (which includes travel). Long term deconditioning can add to the issue.
4) Check your water and caffeine intake
Simply put, everything within our body relies on water. In the person with hEDS, low water intake can contribute to gastro issues and drive inflammation in an already prone system. Relying solely on food intake for water is unwise as was suggested by the study referenced in Dr. Heidi Collins’ talk. While it is recognized that the 8 glasses rule is inaccurate, denying the need for additional water outside of food may be misconstrued in a population suffering from comorbidities such as POTS and MCAS that add stress on metabolic processes. If your body is working hard to digest, move, and live, it’s likely in your best interest to tune into thirst signals and drink some water. As a guide, if you’re forcing water down after having consumed a fair bit, you’re probably overdoing it; research published in 2016 showed we have a natural swallowing inhibition to consider.
On that note, the tendency for many sleep-deprived or low energy people is to have caffeine at all hours (coffee, black tea, green teat). If you suffer from insomnia, high stress, and experience high levels of body tension, avoid all caffeine- from coffee or tea- after 9am. Using it to combat fatigue in the day only serves to run systems down.
How:
1. Avoid all caffeine (if you do consume any), after 9am or try going without altogether for a week at minimum.
2. Start your day with a full glass of water prior to all other liquids and solids. Pay attention to thirst signals and increase water intake with physical output or high sweat days. *If you have POTS, increased water and salt intake is a strategy to help manage blood volume and reduce symptoms.
5) Eat dinner early; really early
Many people with hEDS have GI tract issues related to motility, allergies, permeability, functional dyspepsia, MCAS, and IBS to name a few. Moving the bodily task of eating as far away from the task of sleeping can improve both. Even the average person does not sleep as well on a full system although many have habituated themselves to going to bed somewhat full (and in relative terms, can often get away with it). In the chronic pain population, intermittent fasting has been suggested as a useful strategy in reducing pain sensation and promoting neuroplasticity (brain re-learning). With that in mind, eating early isn’t about controlling weight so much as reducing bodily tasks, promoting higher sleep quality, encouraging GI recovery time, and benefiting from lower inflammation as a result.
This is perhaps one of the most impactful habits that we have adopted in our household and that clients report as being pivotal to managing inflammation, energy, and sleep quality. Social settings often have people eating later and we've collectively normalized this but it does not cater to how our bodily systems function. Making the effort to break a potentially very well established habit takes time but it is worth the effort.
How:
1. Try giving your body a full fighting chance to digest before you sleep by moving dinner 2-4hrs prior to your planned sleep time. Or use sundown in fall and winter as a guide for when to be done eating.
2. Use the 3 day strategy: Move dinner 30 minutes closer to your goal time for 3 days before moving it earlier again for another 3 days until you achieve your optimal dinner time.
Understand that this may not happen 7 days/week due to life factors, travel, etc. but if you are making a conscious effort to eat as early as you can 5-6 days/week you should notice change sooner vs. later.
8) Weighted blankets, bolsters, and pillows, oh my
A weighted blanket serves as sensory modulation, creating a calming effect on the nervous system: This is particularly relevant for those suffering from anxiety, chronic pain, and poor sleep quality. By design, they prevent overheating in a way that piling on heavy duvets cannot. Most companies have suggested weights based on your size and, as such, do not pose risk to a hypermobile structure. During wakeful periods, the stimulus can add comfort and encourage a sense of calm to return back to sleep. Bolsters and pillows can add further structural safety to allow tissue relaxation without subluxations.
How:
1. Consider a weighted blanket and find a pillow that accommodates multiple comfortable positions for your neck and shoulders (and one that doesn’t warp easily with time).
2. Bolsters used by your chest and abdomen can further support your structure and allow your tissues to properly (and safely) relax at night.
I’ve been through countless pillows to find one that wouldn’t force my neck or shoulder into a position that would result in subluxations or autonomic problems and I flip my mattress every couple of weeks for the same reasons. Everyone is different so it may take some experimenting; I personally use a Nirvana blanket, Nite Hood, Casper Pillow, and smaller pillows/stuffies as bolsters for arms, sternum, & hips. It feels silly but it works.
10) Engage your senses and embrace practice
As previously mentioned, this is not an exhaustive list and this last note is the most ambiguous-sounding of the tools. Consistency breeds proficiency at whatever you set yourself to- if you consciously practice going online at 2am, your body becomes better at waking you up at that hour. Our internal environment is sensitive to all external inputs and this includes the subtleties of what we eat, watch, who we speak to, and the thoughts we have throughout the day: The great news is that these are all within our ability to influence, embrace, or remove.
It is every human's job to build mental and physical awareness around what riles us up during the day, what brings us down, and what leads to better sleep: Our bodies are constantly sensing and engaging with the environment and with our thoughts so it behoves us to understand their language.
For a time, I had to create firm boundaries around when I'd take meetings (never after 12:00pm), who I'd interact with (some people are just more high strung and you're allowed to say no), and stopped apologizing for not being as available partly by challenging my own beliefs that I was "failing" someone else in doing so. I made clear cut hours about when I'd go into sensory "deprivation" for the evening which involved classical music, reading, writing, light-therapy, and no new work requests. I was far from perfect but consistency helped me to trend strongly in the right direction for my own physiology. Those are personal examples and this is not to suggest that you have to become obsessive and controlling, or to live in a bubble so much as benefit from becoming aware and removing the stimuli that don't serve you.
How:
1. Track your sleep without tying emotion to the outcome; you may start to notice a pattern of what leads to the "better" nights. Do certain interactions or events keep you up or put you out?
2. Say no: If going out late, engaging with specific activities, watching scary things (very relevant to today's TV world), or having certain conversations will knowingly set you back, you have every right to say no. It may not feel easy, but you're not a bad person for taking care of your needs.
3. Use music and check other inputs: Music is a powerful tool to bring people up, calm them down, and generally alter nervous system activity. This is a tool I've relied heavily on since I was 15 and will invariably keep my system down-regulated and mentally calm at night even if it's hard to fully sleep.
With sleep comes greater tolerance for all stimuli. To that point, everyone has a personal range within which they can operate very well: This is more about finding where you need to start and discovering your range of "input tolerance" over time while you acquire the tools to settle your system for sleep.
