Newly diagnosed with RBD

i feel so bad for you. are you going to be okay?

Thank you Ginny. I will be. It's just the not knowing. If I knew I would end up with PD, I'd understand my outlook better and be able to plan.

Some people write that they take a med that helps with RBD. Sorry, I do not know what it is, but it was mentioned in the forum somewhere.

that is so true, I wish you the best of luck

I would suggest that you ask your sleep physician to refer you to a neurologist with expertise in Parkinsonisms or you should do some internet research and seek one out on your own. Mayo has many with this expertise. RBD is prodromal to at least three Parkinsonisms, including Parkinson's. It can be treated with either pharmaceuticals or melatonin and perhaps others. You can find relief, as I did, after dosing with 6 mg melatonin each night just before bedtime. Whether you use an immediate release or extended release version of melatonin is something your physician will determine and some experimentation may be required. If melatonin does not work, a drug may well do the trick. Beyond correcting the RBD, the neurologist will advise you regarding your course of action on the potential Parkinsonisms and what if anything to do now. Do not lose hope but my advice is for you get moving on it soon.

RBD?????? and PD????

Please seek medical attention from the larger teaching facilities that we have available either through self referral or have your physician refer you. The earlier the better. Well worth the expense and travel time to get exceptional medical help.

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.

@kndaustin7
RBD is REM Behavior Disorder
PD is Parkinsons Disease

@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