When the Insomnia Meds Don't Work
Last updated: November 2023
I have a cocktail every night. But it's not what you think. There are no little colorful little umbrellas, candied oranges, or effervescent bubbles involved. My cocktail is 5 little pills that let me sleep. And I have learned – the hard way – that without my cocktail, I do not sleep. At all.
I first started taking medications to support sleep about 20 years ago. I was diagnosed with severe restless legs syndrome (RLS) and after a short trial with occasional diazepam, low-dose pramipexole (an anti-Parkinson's medication) became available in Australia for RLS. At the time it felt like a game changer, and my dreadful sleeping calmed down for a little while.
Like many things in life, the glory days did not last, and I developed augmentation which required me to go off the medication and start something different. So, I was put on low doses of pregabalin which is an anti-epileptic. It worked a treat, both for calming my legs and for relieving the associated nerve pain. But again, it didn't last forever.
Within about 5 years of trialing both these medications, I was back at the doctor discussing options, and eventually, I was put onto both at the same time. That was the beginning of my cocktail recipe.
The beginning of the end of my nightly sleep
Over the years I have experienced issues with depression and anxiety. In 2015 my great mental health decline began and my sleep got worse and worse. I'll never know for sure what caused what – did deteriorating sleep cause my mental health to sink so low? Or did terrible mental health bring about debilitating insomnia?
Whatever the case, by the time 2020 rolled in I was virtually not sleeping at all. I had days on end when I wouldn't even get into bed. Then more days where I would desperately try and nap only to wake 20 minutes later. It was a terrible time that ended up with me spending 9 weeks in a psychiatric hospital. I have been on a continuous recovery road since then.
I came out of hospital with a little bundle of nightly pills to support both my sleep and my mental health – 2 RLS medications, 2 mood stabilizers to treat the bipolar disorder II I was diagnosed with, and a dedicated sleeping tablet – because I had been observed in the ICU not sleeping for days on end. They knew I wasn't making it up. That is the little cocktail I have been consuming for 3 years now.
Managing ups and downs with medication
Like so many people with mental health diagnoses, I often want to go off my medications when I'm feeling well. But each time I reduce the dosage my sleep gets worse. While mood stabilizers are not sleeping pills, for me they contribute to relaxation and calmness – things I don't feel without medication.
I once had a sleep study done that showed I'm in a constant state of hyperarousal, 24/7. Even when I sleep my brain is on high alert. Mood stabilizing medications help to calm that little farm and are an important part of maintaining my sleep regime.
The sleeping tablet that works its magic for me is Zopiclone. I take it at the lowest dose, but even then a lot of people have strong opinions about it. The risk with a tablet like that is developing tolerance and dependence. After several years of sleeping a solid 4 to 7 hours every night, to have it suddenly stripped away is so frustrating.
I feel like I'm getting too old to manage high levels of exhaustion every day. That boundless energy of youth has been stripped away with time. And the calming effects of the RLS and mood-stabilizing medications make it much harder to push through sleep-deprived days.
Asking for help
When my sleeping tablet stopped working I was desperate to find another solution and thankfully, I have a wonderfully supportive doctor and psychiatrist. I was swapped onto clonazepam for 8 weeks which was not ideal but it did the trick. I wasn't staring at the ceiling in frustration or pacing up and down the hallway all night, desperately sad that I was missing out on something so many people take for granted. After a couple of months, I went back to Zopiclone and that is how it has been for the past year.
Recently, my sleep has started to slip again. Sometimes I only get a couple of hours before I wake, but I'm still able to doze on and off until the sun starts to rise. After years of next to no sleep, I'm happy with that equation. But I also know that if my current little cocktail stops doing its job entirely, I have options for taking a break and then coming back.
Have you found that your insomnia medication didn't work as effectively as before?
My sleep is a blessing
It's amazing what we get used to in life. Until my 40s I just accepted the restless, broken, exhausting type of sleep I had known my entire life. Then RLS medications showed me what it's like to feel physical rest.
In my 50s I learned what it's like to calm my mind and actually sleep solid hours without constant waking. And that is the most joyous experience imaginable. Taking medication always comes with consequences and it isn't easy weighing up the pros and cons – augmentation, tolerance and dependence are just some of the costs that come with assisted sleep. But sleep is a precious gift and I'm willing to pay the price.
I have become used to getting sleep. When those meds don't work, it's more exhausting and draining than it used to be. Getting through the day feels more difficult than it did 20 years ago. But I live with the eternal hope that if things can change for the worse, they can eventually change for the better. And every single minute I spend in sleep is a blessing I should never take for granted.
Do you experience painsomnia?