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Newly diagnosed with RBD

Sleep Health | Last Active: 4 hours ago | Replies (13)

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Profile picture for j0nathan26 @j0nathan26

I too have recently been diagnosed with RBD. My symptoms started in January of this year by acting out dreams in the form of shouting, kicking and punching. My spouse was nearly hit on several occasions but, fortunately, no physical harm has come to either of us. An overnight sleep study at Guys & St. Thomas' Hospital in London in February confirmed the diagnosis. I also had a brain MRI which, thankfully, shows no concerns at this time. I have been prescribed slow release melatonin 6mg which has significantly reduced the symptoms but not completely removed them. My Consultant has advised that the condition itself cannot be cured or reversed, only the symptoms managed.
It is a scary time for those involved as we have no answers as to what our future might hold because of this condition. My approach at this time is to get on with my life and do the things I planned to as, equally valid, is the view that we don't know the future anyway. This approach doesn't, of course, hold up every day and I do think about what I now need to address. Morbid as that sounds it's stuff we kind of should do anyway.
I've joined this forum as I feel I need to connect with others impacted by RBD and also to offer support to anyone else out there who needs it.

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Replies to "I too have recently been diagnosed with RBD. My symptoms started in January of this year..."

@j0nathan26
I have a history similar to yours
I am taking Melatonin 5 for two years and this stopped the symptoms described
immediately
I was taking Venlafaxine 150mv for 20 years and for the past year have been weaning myself off
I had read that RBd can be caused by Venlafaxine
I also read that some Mayo specialists do not think RBD will automatically lead to PD or Lewis Body as my doctor in UK suggested
I am 80 and showing no sign of it presently so looking forward to a normal life expectancy