Sleepovers Are A Bit Awkward - A Lifetime Of REM Behavior Disorder (RBD)

by Kelly
(Surrey)

I've had this sleep disorder all my life; I am now 37 and a female, and only started to consider my nightly craziness as a 'disorder' in my late teens, when I discovered other people don't head-butt walls and scream the place down in their sleep...

The furthest back I remember is when I was a very young girl, (maybe 5 years old?) and I got very sick with a high temperature for days. I had vivid day-time hallucinations, which I still remember to this day: lying on my dad's chest trying to sleep, and floating up to the ceiling looking down at myself (gulp); a line of people with staring wide eyes filing into my room and suddenly in unison turning to stare at me (with me screaming my head off, obviously); a woman coming to take me away from my parents (with a very fast speaking, hackling voice, terrifying).

As a baby I also had a fit (from a very high temperature again), which maybe had a lasting effect on my brain wiring, who knows!!

As I grew older I had an almost-nightly routine (and still have it) of falling asleep and around 1am being violently woken by a number of various hallucinations: massive spiders over my head, insects, weird lights... but the worst is the 'conspiracy' hallucination, involving anyone in the house (boyfriend, parents, anyone) who have been plotting to kill me. A lot of the time it's being trapped, or some complicated killing device, or (by the hands of my poor innocent boyfriend) strangled.

These 'small' nightly wake-up scenarios are the mild ones, where I usually sit up violently, chucking my bedding on the floor in 0.2 seconds, shout something out loud (or hold my boyfriend's arms down shouting 'no no no'), then slowly coming round as I realise that, oh god how embarrassing, it's just a hallucination.

The worse part of this nightly ritual is the effect it has on my heart; it hammers like CRAZY for a good minute or so, and I feel really shaky and weird all over, like I've had a fit.

So these are the little episodes, more annoying than anything, and a strain on my poor heart.

The bad ones, thankfully, are rarer as I get older, as I've learnt to avoid the things that trigger them: smoking weed (I was never a regular smoker, but after the diamond saw-cutter incident, see below, I never smoked it again), drugs of ANY kind, excess alcohol, and extreme tiredness/anxiety.

The bad ones..... were just awful. But thankfully, with hindsight, quite funny too. (well if you don't laugh, you'll cry, and I'd rather embrace this weird crap instead of getting too upset)

I've been in a hotel room with my friend after a long day's traveling and woke up violently, jumping on a bedside table, smashing the lamp, jumping on HER in bed, head-butting the wall and ran around the room, forehead bleeding and screaming. I then sat on the bed in shock muttering 'I'm alive' because my hallucination was of me just about to be crushed by a huge wall, and I was absolutely convinced I was about to die.

It was awful, and embarrassing,......... but the next day we just turned to each other, and pissed ourselves laughing. What else could we do?

I've been hallucinating that I've got my head caught in a diamond saw-cutter (if that's what they're called) and been screaming for a good minute, with my ex holding me down to stop me hurting myself, really believing I was about to die a horrific death. Actually the sound of your own screaming is worse than the actual event, as the memory of it stays with you. It was just horrific. So no more weed for me. That was 10 years ago.

I've woken up pounding my front door (which was next to my bed in my studio flat) and screaming my head off, thinking someone had accidentally locked me in some underground chamber in the dark. Actually on that occasion I was more upset that no one in my block of flats had called the police after hearing screaming like that....

I've nearly killed my dog by accident numerous times by throwing him and the contents of my bed violently across the room (I would never put his dog bed near my side of the bed in case I suddenly jump up onto him).

I've head-butted the floor at the foot of the bed a few times, leaping so fast from a lying position, I've ended up face-down at the foot of my bed on the floor, forehead bleeding.

I've camped in the desert and nearly scared the living crap out of everyone there, by screaming blood curdling-screams and clawing at my (shared) tent until my tent-mate calmed me down. Needless to say she slept in her own tent after that.

I've lost count how many times I've ended up coming round from a hallucination, crouched on the end of my bed with my hands above my head in terror, Pompeii-style.

I've woken up with endless sore wrists/knees/neck/ankles from banging walls/twisting violently/tripping over.

I've endured, since childhood, nights of sitting up in bed, shaking and sobbing and feeling very irrationally scared after many, many night time adventures. The after-effects are pretty much the worse thing, I think, and I dread it. I always shake (I think because of the adrenaline) and feel really odd in my nerves, especially my lower spine, making my legs feel all weak, and I have this overwhelming feeling of terror. My heart just goes mental, I sit there and just hold my chest until it calms down. It's just shit, to be honest. I usually just sit up for a few minutes, have a cry, and then lie down and go back to sleep.

I don't know about other people with this disorder, but I've always had insane dreams too: really vivid, epic, end-of-the-world stuff, and sometimes utterly fantastic. They are so detailed and exhausting, sometimes terrifying, sometimes just so LONG. I often wake up feeling knackered, and I really struggle getting out of bed. The feeling of the dream will often stay with me for days if it's a bad one, and I often have an 'awakening' within the dream where I'm aware that all my waking life is actually an illusion and this 'dream-awareness' is the true reality. It's very disturbing and dark and sinister-feeling, and when I'm going through a spate of it I really dread bedtimes.
I don't think there's anything mystical or special about these dreams or hallucinations; I just think it's a misfiring of something in my sleeping state, and although I've read lots of medical stuff connecting it to Parkinsons and dementia, I don't linger too much on it. I know sudden onset of this condition is something to be investigated, but as someone with a lifetime of episodes, I think of it more as an unusual flaw, something to take extra care with (keep windows locked if you're higher than the first floor!) and above all something to talk about with loved ones to try and take away the frightening aspects. Seriously, sometimes a cuddle is all you need at 1am when you think you've just cheated death.

No drugs, not too much alcohol, healthy diet and stay away from disturbing films etc. When you've got this disorder you need to go easy on your lovely brain!!

I know doctors like to recommend anti-depressants as a treatment for this disorder, but from experience I'd say it works for a while, but then creeps back. The mind is such a delicate thing, and I really think it's worth changing your lifestyle first before embarking on medication.

As for sleepovers: well, yes, they are awkward, but I've found that by telling people 'don't freak out if you hear something, like me shouting in the middle of the night, I've got this weird sleep disorder' usually relaxes your brain a bit, making it less likely to happen.

I lived for a year in dormitories when I went traveling, and nothing really happened. I think my brain knew it had to be on best behaviour. Which shows how much we can influence this disorder with healthy-thinking and lifestyle.