Question: I am a 28 year old female who has been diagnosed with RBD along with another sleeping disorder on top of it to make it even more complicated…
Apparently I have RBD and NREM sleep issues. The NREM is sleep terrors and sleep walking. However, with the RBD my night terrors are real, very, very real. Terrifying is not the word to use. There is no word to describe how scary it is. Although the RBD allows me to remember my night terrors and act them out the NREM disorder also allows me to not remember what I do as well. So I’ll have an RBD episode full fledged…then the next night an episode of the NREM disorder and not remember what I did.Here’s an example, I’ll try to be as clear as I can. My doctor told me that what I have is very, very rare so if there isn’t anyone here that can’t wrap their heads around this one you’re not alone. I cannot either!During an RBD episode and this was what led to my diagnois (I’ve had both since a child but never went to a sleep doctor until this episode) I had dreamt that I woke up. I didnt’ wake up…I was still dreaming and I saw this shadow standing at the foot of my bed. Thinking it was real I screamed, turned over on my stomach and started to crawl to my headboard because in the dream I was pulled off the bed. I remember turning over to see this shadow on top of me trying to kill me. I kicked it with my foot several times and still it came for me. I was fighting for my life I thought until I woke up to see my husband holding me down.It turns out the “monster” I saw was my husband and he told me that he heard me scream turned over and saw me thrashing about in bed. When he reached to grab me he said I then freaked out and kicked him in the face and stomach more than once. In my dream I kicked this monster in the face, and stomach. I ended up cutting my toe open on his fingernail as a result of kicking so hard. Since then I’ve been terrified of any shadows even though I know this was just an RBD episode. That’s not the only severe one I’ve had. I also dreamt I was visiting my grandfather in the hospice. At this time he was sick
and dying and I was looking out a window. Guess where I was in real life? I was standing on my bed room dresser looking into the mirror as if it were the window. I ended up falling off my dresser and injuring my leg. That’s the RBD part.The NREM part is what I don’t remember and I only know what I do based on my husbands accounts. My most recent episode was last week. I sat up in bed, screamed and started to beat my dog that sleeps in the bed with me. This I do not remember. Other episodes have been cursing in my sleep, sleep walking…all this I don’t remember.Sometimes I’ll have episodes of both in one night. There is no explanation for these episodes. I do not know why I have these two disorders or why I never out grew the night terrors or why I have RBD. But, its terrifying to have…not knowing what you will do next whileasleep.Currently I’m taking Klonopin .5mg and it has worked wonders until recently. I’ve been on it for over a year now and saw my doctor recently who told me that after a year I’ll have relapses of RBD and so we may have to up my dose of Klonopin. There is no cure, it’ll get worse.There needs to be better medication for this disorder. I’m only 28 years old and cannot think of being on it for life. Having these episodes have made my life a living nightmare and I’m lucky to have been diagnosed at all. I’m currently under treatment for Lupus/Rheumatoid arthritis, possibly…we’re not sure what it is but it’s inflammatory, so I’m on plaquenil and other meds for it which have helped. Ironically it was my rheumatalogist who suggested I see a sleep doctor when I shared one of my dreams wondering if it could be related to my inflammatory condition.For all I know it could be. So far I’m the youngest RBD sufferer my doctors’ met. I’m hoping to find others out there who are in their 20’s or early 30’s but there appears to be no research done in this area. I hope my story has shed some light as to what it’s like to have this. Although not as detailed as I’d like for it to be, I’d have to write a book on this to fully share my story this is as close as I can get to sharing it without writing a book!Thank you for reading.