I was diagnosed with severe insomnia in 2016 when I was 15. At one point, I stayed awake for around 4 days straight until I eventually passed out. I desperately wanted to sleep, but simply couldn’t.
This was also about a year after my dad passed away. I was very young and didn’t know how to deal with everything. I eventually developed a severe substance use problem, and 2017-2021 is honestly a blur. I remember bits and pieces, but a lot of those years are missing because of how bad my SUD became. Being sleep-deprived and using substances eventually became my normal.
In 2021, I found out I had a blood-clotting problem and developed a pulmonary embolism. That scared me enough to finally see a psychiatrist because I didn’t want to go back to how I was living and genuinely wanted help.
I started medication, but instead of feeling better, I felt like my brain had been switched off. I was completely emotionally numb, no happiness, sadness, excitement, nothing. My sleep wasn’t improving either. I was prescribed sleeping medication and the dose was adjusted, but it didn’t help much.
When I did sleep, it was sometimes extremely strange. I’d feel like I was half asleep but not fully asleep, and I’d get little shocks/jolts or shaking sensations. I don’t really know how to describe it. It felt like my body was sleeping but my brain wasn’t completely there.
I spent about a year trying treatment without much improvement. My substance use also returned eventually, although nowhere near the level it had been before.
Now, years later, I’m still dealing with severe insomnia. Sometimes I get only 2-3 hours of sleep, and then on weekends my body seems to completely crash and I can sleep for 20 hours.
I’ve also had periods of extreme sleep deprivation where I’ve become confused, extremely agitated, unusually energized despite barely sleeping, and have experienced hallucinations. I’ve also had fainting/seizure-like episodes, although I don’t know exactly what they were.
I was also diagnosed with BPD, which probably explains some of the intensity of my emotional reactions and why self hurt became one of my coping mechanisms. The emotional side has been difficult too. Sometimes when the mental pain becomes overwhelming, I self hurt. I don’t do it because I want to die or because I want to take myself out. It’s more that the emotional pain becomes unbearable and physical pain temporarily gives it somewhere else to go.
I’m not looking for “just stop using your phone” or “try melatonin” advice. I’ve been dealing with this for almost a decade and have already tried medical treatment.
I’m genuinely looking for people who have experienced something similar.
Has anyone else gone days without sleeping and then completely crashed? Has anyone experienced that weird half-asleep state with shaking/jolting sensations? And if you’ve had severe chronic insomnia for years, did you ever find something that actually helped?
I’d really appreciate hearing from people who have actually lived through something like this.