My sleep problems began about 20 years ago, at the age of 20. I began to wake up more frequently in the night, and then struggle to get out of bed on a morning. I was experiencing severe sciatica at the time, and whatever I tried I couldn’t get comfortable.
Over the years I began to have more problems with widespread pain and was put on amitriptyline medication. After a few weeks of not being able to get up in the morning and feeling like my feet were in cement, I began to sleep better and feel more refreshed upon waking and like I had more energy for my day. I felt like my pain was beginning to get under control.
I fell pregnant at age 28 and had to stop the medication. I had a great pregnancy with a huge decrease in my pain. I then had a baby who struggled to sleep for the next 5 years, and my pain began to increase again, along with new symptoms of fast heart rate, hot flashes, and frequent waking in the night. My periods became more frequent, and I had around 2 days per month when I didn’t notice the symptoms of my menstrual cycle.
I was put on a strong cocodamol medication which helped me get through the night with reduced pain. I then started to wake in the night to retake this, and it began to affect my stomach, leaving me constipated, and resulting in frequent anal tears which were so painful.
Another baby, another 5 years of barely any sleep, and my sleep quality was so poor it was affecting my mental health. I started to track my sleep on a FitBit which was always ‘Poor.’ When I stood up in the night to go frequently to the toilet, my heart rate would shoot up by over 40 beats per minute, and I would feel faint, and extremely dizzy like I was spinning in a chair.
Here is when my detective mission began, and here is what I’ve added to my sleep kit so far.
I started to use the Calm app, listening to a “get back to sleep” meditation on repeat (I’m now at day 465!), and the HeadSpace app’s grounding meditation for panic attacks whenever I needed it. They both got me through some very difficult nights when I began waking up at 1:30 am every night feeling panicked.
I watched an Ehlers-Danlos Society video about managing autonomic symptoms and created a wedge of sorts under my mattress for my head.
I bought a magnesium body spray and began a routine each night of using that on areas that hurt. I worked my way up from a few sprays, which at first stung my skin a lot, to over 10.
A pillow spray from This Works became another part of my routine, along with magnesium tablets at bedtime.
I stopped drinking. Alcohol seriously messes with my sleep, even one glass of wine.
I bought the Fabulous app and started off slow. For the first few weeks, all you do is put a glass of water beside your bed and drink it when you wake up. Then you add more habits, like those mentioned above, “disconnecting from all devices”, and “feeling gratitude” are other examples, adding what I personally needed as I went along. The idea is you check them off the list, establish a routine, and feel a sense of accomplishment, albeit for small things within your control.
I changed my bed sheets to only breathable cotton, and pyjamas to flowy camisoles and shorts to help control my temperature in the night. When I wore heavier clothing or bedding, I began having night sweats and nightmares.
I was put on a 3-monthly injection to stop my periods, essentially putting me into a pseudo-menopausal state. Leuprorelin is a type of hormone therapy known as a luteinizing hormone-releasing hormone agonist. It was determined I had Premenstrual dysphoric disorder (PMDD) which is a very severe form of premenstrual syndrome (PMS). It causes a range of emotional and physical symptoms every month during the week or two before your period. It is sometimes referred to as ‘severe PMS’. This single-handedly has changed my life. My autonomic symptoms have massively reduced, as has the widespread pain.
My neck, shoulders, knees, and jaw are my current struggles. They’re still a challenge but my detective mission is paying off.
I bought a cervical neck pillow from Putnams, which is like a roll that goes under your neck to sleep on. I’ve invested so much money over the years in pillows, previously thinking I had cracked it with a memory foam pillow, only for a couple of months later to start with new neck symptoms. The cervical pillow again has changed my life. I have degenerative discs in my neck and was constantly having a few pain-free days before 6 weeks in a flare-up. I was waking up popping my collarbone back in and adjusting my shoulder every morning. My pillow architecture now looks like a flat pillow and cervical roll pillow, and going to a hotel or not using this has such a negative impact on my symptoms!
I did 4 weeks of physical therapy where I paid to see a physio who has experience in cervical issues in hypermobility, and exercises mainly focus on chin tucks and stopping my forward head posture and kyphosis. I couldn’t afford it anymore and it was a huge drive away, but what I got from it was so validating and invaluable to move forward with.
I wear an upper mouth guard each night called an MCI occlusal splint. Myo-clench inhibitor (MCI) is an occlusal splint designed to reduce headache, bruxism, and TMJ disorders. This takes some getting used to, but again when I don’t wear it for periods of time (it can be a sensory thing!) I notice so much more jaw joint, ear, and neck pain. I’ve just had jaw botox this week with 3 injections on each side of my mandibular joint so watch this space! It takes 3 weeks for it to settle in so watch this space.
I take water to bed every night and drink in the night if I wake up and first thing in the morning to hydrate myself.
I don’t go on social media before bed, and only use apps like Fabulous before bed, reading things that settle my mind. Social media before bed can have a huge impact on my sleep because I never know what I will see and how it will affect me and trigger thoughts, work, or life anxiety.
If I have the energy, I take a bath with aromatherapy oils and use a sleep pulse point roll-on before bed. I have the Green People Time to Ease muscle relax body oil which was created by someone with EDS, and I use it in the bath or just on dry skin. The fragrance now reminds me of relaxation and I’ve realised that I have such a connection with aromatherapy fragrances and being calmer.
If I eat a big meal within 3 hours of going to bed, I’m going to pay for it. Constant wakings in the night, stomach pain, and up for the day at 4 am. I always kick myself when I do this!
I’ve started on 5htp before bed but finding it’s making the mornings really hard to wake up. I’m hoping this gets easier but it’s a work in progress! I stopped it for a couple of days and went back to tossing and turning in the night again so I’m just doing trial and error to see what’s working.
It’s a process. Sleep affects everything. The struggles evolve and ebb and flow, but I’m keeping the faith that I’m getting there.
