Has anyone dealt with REM Behavior Disorder (RBD )

Posted by Sarah @emyliander, Apr 22 11:07am

I have had a sleep study and met with my Neurologist who thinks I have RBD and wants me to meet with my sleep specialist . RBD has poor memory as on of its components. My Neurologist didn’t tell me I have MCI but he put it as my diagnosis on my discharge paper. I have been on
Venlafaxine for many yrs and discovered that it is one of two meds that can cause RBD so I met with my GP and asked to switch off it. I am transitioning onto Bupropion. An MRI 2yrs ago showed “ white matter”.
My current symptoms are poor memory which interferes with my daily activities, loss of smell,
Nightmares in which I scream and kick and have fallen out of bed hurting myself. Foods I have loved I no longer care for, 8lb weight loss, poor concentration and feeling overwhelmed, keeping my house tidy seems impossible.
I’ve been told by Neurologist to get a test to rule out Lyme disease. Also to make an appointment for CBT classes.
Looking for some insight.
Thank you.

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Sadly, I have no background in this, Sarah, but I sincerely hope you find a way back to some better sleep and peace of mind. Someone reading will surely be able to offer some help or experiential information that can be helpful for you. Good luck.

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@gloaming

Sadly, I have no background in this, Sarah, but I sincerely hope you find a way back to some better sleep and peace of mind. Someone reading will surely be able to offer some help or experiential information that can be helpful for you. Good luck.

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Thank you, it’s just hard waiting to figure it all out.

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My husband had most of these symptoms with Parkinson's disease.

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@raebaby

My husband had most of these symptoms with Parkinson's disease.

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Yes, I have read that RBD is a precursor of Parkinson’s, they say the interim is 4-7+ yrs, depending on which article you read.
Thanks for your response.

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@emyliander

Yes, I have read that RBD is a precursor of Parkinson’s, they say the interim is 4-7+ yrs, depending on which article you read.
Thanks for your response.

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My husband of 58 years already had REM sleep disorder on our honeymoon in 1960. It was quite a shock to get bapped around in my sleep! He developed Parkinson's at around age 70.

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@raebaby

My husband of 58 years already had REM sleep disorder on our honeymoon in 1960. It was quite a shock to get bapped around in my sleep! He developed Parkinson's at around age 70.

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Well that’s encouraging, at that rate I should be dead by the time I would develop Parkinson’s, I’m 78yrs. I think the memory problems are the problem I’m dealing with right now.
I am sorry that your husband is having to deal with this, and yourself also. Did he find any way to help with the sleep problem, I don’t have a problem falling asleep, just staying asleep.
If we have overnight company or sleep at someone else’s house, I usually warn them that if they hear me scream, in the night, not to worry😵‍💫

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He would never admit he had a sleep disorder. He said he was sure someone else would be able to sleep with him. I know with all my heart that wouldn't be the truth .. We ended up in separate bedrooms. The last ten years of his life he would sleep in his bed, sleep on the floor, move all over the house grabbing throws to cover up with. He had dementia by then.
I believe you will not have any trouble with Parkinson's.
I don't have Parkinson's or any kind of memory problems except of old age short term memory at 82 and I think
the trick is to stay curious and calm...

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@raebaby

He would never admit he had a sleep disorder. He said he was sure someone else would be able to sleep with him. I know with all my heart that wouldn't be the truth .. We ended up in separate bedrooms. The last ten years of his life he would sleep in his bed, sleep on the floor, move all over the house grabbing throws to cover up with. He had dementia by then.
I believe you will not have any trouble with Parkinson's.
I don't have Parkinson's or any kind of memory problems except of old age short term memory at 82 and I think
the trick is to stay curious and calm...

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I’m sorry for the loss of your husband, do you have family or friends nearby ?Did your husband have any social outlets in his later years ? My friend out of state has a husband with Parkinson’s, spends a lot of time watching TV and it’s hard to get him motivated to do much, or to exercise. I don’t know if that’s typical or not, he is in his 70’s.
Thank you for your input.

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Two of my four children live close by and help me. My husband had friends in our wine making group right until the end. He had a beautiful view of our mountains and meadows on our 25 acres . He didn't lack for friends, family or stimulation, He just wore out and wasn't interested anymore. My husband started going "off " around 70. He died suddenly at 80.
Having Parkinson's and all the worry that goes with it is very hard on the victim and the caregiver.

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