Question: My fiance has yet to go to the doctors to be diagnosed, though he promises me he will go this week! I believe he has REM Sleep Behaviour Disorder (RBD), but I guess it could be a few different things, including some kind of nocturnal seizure. He is 28 years old and says he has always had the problem.
How does this affect him?Often, he is not aware that he has been active in the night and therefore does not remember it. Often, he may wake up in the morning and still feel tired. Mostly, it is me who is aware that something has happened. He woke up recently, though, after running into a wall. He hit his face. I hadn’t woken up until then. I found him on the floor tangled up in the duvet, holding his head. He thought in his half-dreaming state that he had broken his nose, but he hadn’t. He had mild concussion. That gave him headaches, but didn’t stop him from going to work and cycling. He has also woken up to find himself on the floor, cold, because there’s no duvet there. He says that as a kid he stayed over in a bunk bed – top bunk – and leapt out in his sleep. He had actually forgotten about it until someone said, “Did you hear that crash in the night?” “Oh yes, that was me.”I can usually intervene (though my job means I am not home every night). I am usually awakened by him sitting straight up and he often speaks, hurriedly. He usually sounds panicky, like he has to get away from something. He often makes a move to get out of bed and so I speak to him, tell him he’s in bed, put my arms around him in a bear hug and tell him to wait until I can get the light
on, that it’s not safe to move. Once I get the light on, he looks around. I tell him he’s okay and to go ‘back to sleep’. I show him where his pillow is. He settles down. He doesn’t usually remember anything, so I guess he never really woke up.Last night, though, in the middle of the bear hug, he said “I can’t wait. I’m going!” and he made a leap to get out of bed. I hugged him again. Luckily he did stop. I was able to put the light on, which helped him go back to sleep. That was the second time that night and it was twice the night before – so right now it feels like my sleep disorder!He has also hit me a couple of times accidentally, with flailing limbs. He knocked my elbow so I effectively punched myself in the chin and scratched my chin with my engagement ring. His father has the same sleep disorder (also undiagnosed) and uses a torch by his bed to orientate himself. His grandfather also apparently had the same thing. There is no history of Parkinsons – which I read RBD can be a precursor to – and he does not drink much alcohol (2-4 units maybe three times a week). He is extremely fit, active, normal body weight, eats healthily. No other health problems.The main way his disorder affects me is that I lose sleep acting as his bodyguard! Also, it is not fun being hit when you’re trying to sleep! But the biggest thing is that I do worry about him seriously hurting himself – especially when I am not there to intervene or I’m in a deep sleep. I am especially concerned about the stairs. So hopefully he will go to the doctors and get referred to a neurologist/ sleep specialist. I’m hopeful that with the right medication, things can get better.