Does anyone relate?
I've had a severe sleep disorder for almost 20 years now. I don’t speak about it much, I've never experienced any compassion or explanation about it and this triggers isolation that brings me down a spiral. I am afraid to go to sleep and then afraid to wake up. Both are torturous.
My symptoms are numerous beginning with extreme hypersomnia, I sleep for long periods, days at a time rising only to use the restroom, drink/eat a bit, feed my pets. I use to have bouts that lasted up to 5 days. Currently I don’t exceed 2 days very often.
Dreams are vivid, unusually so incredibly vivid, I can remember in detail dreams I had a decade ago. Usually my dreams feel more real than daily life, my day to day life lacks some form of connectedness.
When I wake, I frequently experience "sleep drunkenness" no matter what medication I take, or amount of time I sleep. I trip, run into walls, have poor balance, can’t keep a train of thought. On bad days I have profound memory loss, I can’t remember what I did. This sometime passes after being awake for a number of hours but sometimes it doesn’t pass until I get more extended sleep, at least another 18 hours or more.
I have sleep paralysis, I always refer to it as being “stuck in sleep”, something in-between sleep and wake, I cannot move and it continues for hours. I am aware of it and want out, but am unable to control it. It has an elasticity to it, like pulling myself either toward or away from sleep, snaps me back to the same in-between state.
Less frequently, I have hallucinatory dreams, these are very hard to explain, but are very pronounced. Such a strange phenomenon, it’s undeniable. My sleep is awake-like, I interact inside my dream as if I am awake and have awake thoughts, but then as I try to carry out these thoughts something is very off. This usually involves physical movement, where I actually kick, talk, move while asleep. I am never where I think I am. I am not sure where I am. It’s usually my surroundings that are the hallucinations. I mean I am in a location where I am not, this fact is hard for me to grapple with at the time, so I struggle to make sense of my relationship with my surroundings. I tell myself to wake up and think I have awaken only to find myself still in a situation/location that doesn’t meet reality. I always wake surprised, expecting to be where the dream was, only to realize I am not. It takes me a bit to gather the memory of where I actually live and the current time frame.
I had a sleep study, but it’s been years and the only conclusions I recall from the study was that it is not Apnea or Narcolepsy 1. Should I be able to afford health insurance again, I would like to have another study.
Recently, there seems to be a lot more attention on sleep disorders and sleep disorder diagnosis/treatment. Even my casual reading has found more detailed explanations about the various types of disorders. Originally I was told I had Narcolepsy 2, meaning without Cataplexy, but that explanation falls so short of my very complex experience. Somewhere, I read about "secondary narcolepsy” that may be linked to problems with the hypothalamus, which made me curious about any connection to PTSD.
I am wondering if anyone else has similar sleep problems?
I also have Lyme disease and there is some discussion about the ways LD affects sleep. But Lyme, like PTSD, needs much more research and in the meantime I simply suffer.
I've had a severe sleep disorder for almost 20 years now. I don’t speak about it much, I've never experienced any compassion or explanation about it and this triggers isolation that brings me down a spiral. I am afraid to go to sleep and then afraid to wake up. Both are torturous.
My symptoms are numerous beginning with extreme hypersomnia, I sleep for long periods, days at a time rising only to use the restroom, drink/eat a bit, feed my pets. I use to have bouts that lasted up to 5 days. Currently I don’t exceed 2 days very often.
Dreams are vivid, unusually so incredibly vivid, I can remember in detail dreams I had a decade ago. Usually my dreams feel more real than daily life, my day to day life lacks some form of connectedness.
When I wake, I frequently experience "sleep drunkenness" no matter what medication I take, or amount of time I sleep. I trip, run into walls, have poor balance, can’t keep a train of thought. On bad days I have profound memory loss, I can’t remember what I did. This sometime passes after being awake for a number of hours but sometimes it doesn’t pass until I get more extended sleep, at least another 18 hours or more.
I have sleep paralysis, I always refer to it as being “stuck in sleep”, something in-between sleep and wake, I cannot move and it continues for hours. I am aware of it and want out, but am unable to control it. It has an elasticity to it, like pulling myself either toward or away from sleep, snaps me back to the same in-between state.
Less frequently, I have hallucinatory dreams, these are very hard to explain, but are very pronounced. Such a strange phenomenon, it’s undeniable. My sleep is awake-like, I interact inside my dream as if I am awake and have awake thoughts, but then as I try to carry out these thoughts something is very off. This usually involves physical movement, where I actually kick, talk, move while asleep. I am never where I think I am. I am not sure where I am. It’s usually my surroundings that are the hallucinations. I mean I am in a location where I am not, this fact is hard for me to grapple with at the time, so I struggle to make sense of my relationship with my surroundings. I tell myself to wake up and think I have awaken only to find myself still in a situation/location that doesn’t meet reality. I always wake surprised, expecting to be where the dream was, only to realize I am not. It takes me a bit to gather the memory of where I actually live and the current time frame.
I had a sleep study, but it’s been years and the only conclusions I recall from the study was that it is not Apnea or Narcolepsy 1. Should I be able to afford health insurance again, I would like to have another study.
Recently, there seems to be a lot more attention on sleep disorders and sleep disorder diagnosis/treatment. Even my casual reading has found more detailed explanations about the various types of disorders. Originally I was told I had Narcolepsy 2, meaning without Cataplexy, but that explanation falls so short of my very complex experience. Somewhere, I read about "secondary narcolepsy” that may be linked to problems with the hypothalamus, which made me curious about any connection to PTSD.
I am wondering if anyone else has similar sleep problems?
I also have Lyme disease and there is some discussion about the ways LD affects sleep. But Lyme, like PTSD, needs much more research and in the meantime I simply suffer.
