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REM Sleep Behavior Disorder (RBD)

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MattK +0 points · 2 months ago

Hi. It looked like these more recent posts/replies are only a couple of months old so I thought I'd chime in. I am 63 years young. I am very fit (I am a runner - run several times a week), not overweight and eat really well (wife and daughter are nutritionists). Although I have never been diagnosed, it is pretty clear to my wife and I that I have RBD. My wife reports I show all the behaviors. I have vivid dreams which typically require me to physically act to defend or protect myself which I act out physically while asleep. I can always clearly recite the dream specifics if asked right after awakening. Not knowing better it was kind of a family joke that I acted out my dreams. My wife and I finally had to adjust our sleeping arrangements from a king to 2 separate twins (within the same king frame) to help protect my wife. It has actually worked pretty well as both twins get their own sheets/blankets which greatly limits my ability to hit her.

So we've lived with this for several years until last summer when I fell out of bed during an episode. This was a first and it happened twice in one week. In addition to scaring my wife I really banged my head when I hit the floor. So I met with my primary care MD who referred me to the sleep center at a near by medical center. While waiting for that appointment I did a bunch of reading which is pretty scary as it sounds like many experts agree that RBD frequently leads to horrible neurological diseases. The sleep MD I finally met with said it might just be pseudo RBD and ordered a sleep study. Unfortunately I had really rough night with very little sleep the night of the sleep study. I was told they saw no RBD but the study indicated I had moderate sleep apnea (22 events per hour) so she prescribed CPAP.

At this point I've been on CPAP for 4 months. Prior to CPAP I was having at least 2 significant RBD events per week (according to my wife). Since starting CPAP that has dropped a lot. Maybe once or twice per month. Its difficult to know how accurate that might be but I can't argue with the fact that I've had fewer events. RBD still remains this scary thing lurking out there for me. I'd love to meet with an MD that really understands it. Thank you so much for the reference to the RBD organization above. I registered and will be reading through their web site.

p.s. Any chance anyone knows of an online forum for people with RBD?

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Sierra +0 points · 2 months ago Sleep Patron

Here is a link to a site mentioned in a previous post, but it looks like you have already found it...

https://www.naps-rbd.org/

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jewelsav +0 points · 2 months ago

@MattK, I'm no expert, and I'm only 1/2 step ahead of you, asking the same questions about how to find and secure an appointment with an RBD specialist. Here's how I'm approaching it.

  1. US News and World Reports annually publishes hospital rankings. Here are the top hospitals in neurology. I live in the San Francisco Bay Area, so I was lucky that UCSF was #1. If I wasn't, I would have seriously considered a trip to Johns Hopkins, the Mayo Clinic or a few others that specialize in out-of-town consults.

  2. I looked up the credentials and specialties of all 120 UCSF neurologists. I found Dr Rafael Zuzuarregui, who practices medicine at the intersection of sleep disorders and RBD.

  3. I emailed my sleep doctor at Stanford to refer me to Dr Z. If all had gone smoothly, my sleep doctor would have reached out to Dr Z, with whom he did his sleep Fellowship, and whom he highly recommended. But my sleep dr's admin assistant didn't even show him my request and said Stanford doesn't make referrals outside their system. (Turns out Stanford has no such policy.) So, I asked my primary care dr to make the referral. I supplied my PCP with case notes from my last 2 visits to the sleep doctor, and the results of 2 sleep studies, which she then faxed to UCSF along with their referral form.

  4. There's an unpleasant gate keeper, the "patient coordinator" at UCSF who rudely turned down my request for an appointment with Dr Z. When I asked why, and what the criteria for being accepted were, she hung up on me. But, before she hung up, she said she had referred me to another neurologist, though did not specify a name. This seems to be her modus operandi, as she is cited by name in Yelp and Healthgrade reviews as being quite rude to other prospective patients. Throughout the process of getting a referral, I have kept the end goal in mind and "not stopped for every barking dog".

  5. I heard back within 1 business day from Dr Liza Ashbrook's office, the neurologist I was referred to. This 2nd patient coordinator was incredibly professional, efficient, pleasant and empathetic. Dr. Ashbrook will perform whatever tests are necessary to determine if I have RBD. Dr Ashbrook also was in the same fellowship class as my sleep doctor, and he highly recommended her. My appointment is in Sept (6-month wait), but am on the cancellation waiting list and may get an earlier appointment.

There's probably a long wait time everywhere to see a specialist. I was originally referred to the Stanford neurology dept (from the Stanford sleep department), but they were even ruder, took 3 weeks to completely reject my sleep doctor's referral, and said to call back in Dec, 2022 to see if there might be appointments in 2023.

So, you might have some luck finding an RBD expert at a hospital with an excellent neurology department, located close to you.

Wishing you good luck!

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jewelsav +0 points · 2 months ago

@MattK, On another note...

I've had 2 in-lab sleep studies. I slept for 20 min and 3 hrs, respectively, but never got into REM sleep. Since it's unlikely that I would get into REM sleep in a 3rd sleep study, we set up a Wyze outdoor camera which has excellent night vision capability ($35) in the bedroom so we can record big sudden movements, jumping out of bed, or vocalizing. I can then scan through the video footage, take snippets of events and share with the neurologist when I meet with her.

If you have no difficulty getting into REM sleep in a sleep study, no need to go to this trouble.

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Sierra +0 points · 2 months ago Sleep Patron

There are also home sleep study kits which are used, which can be helpful for those who can't tolerate the in lab tests. I had mine done with a Phillips Alice NightOne kit. They do not provide the REM data though, but can detect obstructive and central events, as well as body position.

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Biguglygremlin +0 points · 2 months ago Original Poster Sleep Enthusiast

I fail to see why a sleep study would be required to confirm RBD if the patient has launched themselves out of bed a few times and their partners testimony confirms a history of nocturnal actions. Even allowing for additional confirmation or some measure of severity a sleep study would be a waste of time without video footage which I assume they do not employ.

There are probably many reasons why CPAP might reduce the number or severity of RBD events. CPAP can potentially reduce stress, it can eliminate the jerky gasping responses to Apnea. CPAP could facilitate reaching and remaining longer at certain sleep levels, it can also provide an awareness when moving around that enables a person to override or suppress the urge to move. Last but not least the CPAP gear can actually restrain movements. Collar and Chain

Most of those factors are overlapping and interconnected.

As to waiting times I received a call last week to enquire if I still wanted an urgent consultation with a sleep specialist that was requested 4 or 5 years ago. I was not offered an appointment, just confirmation that I would remain on the list.

I'm thinking it might be a day or two yet.

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RayRBD +0 points · about 2 months ago

This post is in response to people who likely have undiagnosed RBD. If you have dream enactments, especially vivid and often violent dreams that you remember when you are aroused by the enactment or in the morning, you likely have RBD. The frequency of dream enactments typically come on slowly over a few years, gradually increasing in frequency and intensity. The gold standard for diagnosis is an overnight sleep study with a polysomnogram. I agree with BigUglyGremlin's opinion that if a person is experiencing increasingly frequent, violent and vivid dreams over time, this sleep disorder is sufficient evidence to pursue treatment for the symptoms to avoid serious personal injures or injuring your sleep partner. RBD is not well known across the variety of medical practitioners which is a major challenge. My journey involves participating in clinical studies and keeping up with medical research publications. To learn more about RBD and consideration in participating in the largest clinical studies, go to naps-rbd.org and PPMIonline.org. Safe Travels

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

I will tell a part of my story, not because I am special or normal, and not because I have a powerful message or moral to convey, but because I think that by deduction it might help others to see where I went wrong or what I could have done better and thereby be more confident in their own decisions and actions.

I have been able to break the locks for 60 years now and so I considered it normal.

Puppies chase rabbits in their sleep, cats play with mice in their sleep, don't we do the same?

Ok so not rabbits and mice but you know what I mean!

I married a beautiful person who, unfortunately, has unlimited patience, tolerance and adaptability. She put up with a great deal before mentioning from time to time that she had been kicked or hit during the night and because she downplayed it so successfully I presumed that it was just a bump from changing positions or moving my feet aimlessly whilst I slept. It never occurred to me that she was receiving kicks and punches with power and intent.

Why unfortunately you ask? It was unfortunate for her because she endured it for many years and unfortunate for me because I remained ignorant for so many years.

Her response was to overlook, initially the bruises and the risk then in a literal sense. She became a watcher, sitting in bed knitting or researching or reading and watching me sleep. She would catch her sleep after I had settled down, in the early hours before dawn, and on into the day.

Oh she would mention from time to time that I had been shouting or restless or whatever and also that I stopped breathing frequently for long periods of time (That should keep the APNEA people happy) but she never really pushed the point.

I could remember many of my dreams but not that I was so active during them.

The first time I realised that I was not 'normal' was when I woke up crouched in an attack position on the floor a metre or more from the bed. After that I paid more attention and began to see, for the first time, the scope of my actions and the potential significance of them.

If there was any treatment or prophylactic for this disorder it would be desirable to be fully aware of it at an earlier stage.

So I moved things from around the bed and began sleeping on my side on the very edge of the bed but even so my movements would constantly disturb my partner so, as my actions increased in frequency and violence, I moved to another bed.

When opportunity presented itself we purchased a split king bed and left them unzipped so my movements didn't transfer to the other half.

Then there was the question of what to do when woken from a bad dream, with the requisite scrapes and bruises and tangled bedding. How to kill time in the middle of the night while waiting for the dream to dissipate sufficiently that I didn't go straight back to where I had left off.

I would pace the floor, or play games on the PC, or start lame threads in a far off forum. Then I'd sneak back to bed and hope that I'd escaped.

You get the picture. The gradual progression from awareness and acceptance to isolation and eventually a mattress on the floor in an empty room. (not there yet)

For me safety is not the paramount issue. It is functionality and sanity when I am awake. With low quality sleep that is further degraded by being perpetually disrupted, getting through the night becomes a nightmare and getting through the day can be equally challenging.

Once sleep falls below a certain point life ceases as we usually experience life. It becomes a process of endurance hindered by uncertainty and confusion and a total lack of drive or direction. Nights are spent only half asleep and days are spent only half awake.

It's little wonder that most people with severe RBD go on to show signs of Dementia. The degenerative dreams and dementia are closely linked and self perpetuating.

I have found a very effective tool recently that shields me from my dreams so that the broken locks are not a problem but I feel that, in my case, it is essentially too late. I have lost too much ground over the past few years to really benefit from the reprieve that this medication offers. I only wish that I had known about it much earlier.

If the wife was writing this there would be a moral.

It would go something like this:

"Men don't listen!"

Now where did I leave that hearing aid?

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

I would postulate that RBD, in it's initial form, is essentially harmless and not that abnormal but that as we age the nature of our thinking, logic and dreams, changes.

In my view that change is the initial onset of dementia.

It drives RBD to a new level and they accelerate each other.

Without RBD it is barely detectable but empowered by RBD the early signs of dementia become visible and problematic.

It is the degenerative process in the thinking and not the broken locks that is the real problem.

If you want to study the early stages of dementia, with or without RBD, look for changes in the nature of dreams.

If you are in the right demographic and the nature of your dreams changes to become more vivid, more compelling and active, more angry or scary, it might be worth making preparations for the potential development of Dementia.

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

Stepping stones can get us across the river or they could just lead us to deep water so bear with me here because there seems to be a trail of stones leading off into the mist, and most of those stones are slippery.

The aspects that are most unsettling in this situation are the uncertainty and the unknown.

Will it develop into Dementia?

What form will it take?

How will it effect me?

What will I be like?

How will it impact on others?

It has amused me for some time now that so many medical labels are interchangeable.

What if we are looking at all of this from too close, unable to see past the box and label that we have in front of us?

What happens when we detach ourselves and look at the big picture?

Our entire lifespan could be seen as yet another circuit winding through various events and progressions only to end up back where we started.

There are just too many similarities between childhood and old age to safely dismiss this pattern.

So what does it mean for RBD and Dementia?

Why does Dex shield me from the bad dreams created by Dementia?

Why was I prescribed Dex in the first place?

What are the symptoms of Dementia?

If I can identify those stepping stones they might lead to some answers.

I was prescribed Dex initially to manage the effects of ADHD although I object strongly to the H.

It shields me from dreams created by Dementia because Dementia is a regressive form of ADHD.

I think there is some truth to this leap of logic because Dementia has essentially the same symptoms as ADHD and responds to the same medication. (There are other links too.)

ADHD is a label for a wide spectrum disorder so logically, as we age, the nature of our ADHD could be used to predict the nature of our Dementia.

Therein lies the answer to most of the other questions.

If I was easily distracted, a dreamer, restless and busy that is one thing but if I was agitated, impatient, throwing tantrums or being destructive that might play forward as a different thing.

The crystal ball for the future, as with most things, lies in the past.

Well that was fun. Too simple to be true, but fun just the same, and I barely got my feet wet!

Warning! According to Wiki the need to make these kinds of leaps is likely to be a disease process in itself. "Flight of ideas: A form of formal thought disorder marked by abrupt leaps from one topic to another, possibly with discernible links between successive ideas, perhaps governed by similarities between subjects or, in somewhat higher grades, by rhyming, puns, and word plays"

Based on that twisted disclaimer it seems like I've been sick for a very long time. :)

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

Surely such a blatant perversion of protocol, science and reality deserves at least a few real responses, otherwise I'm just talking to myself and I'm pretty sure that would be yet another tick against me.

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MattK +0 points · about 2 months ago

biguglygremlin,

What is this "tool" that you feel you discovered too late?

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Enthusiast

Hi MattK

Can Dexamphetamine Control RBD

It doesn't suppress movements or stop the dreams but it armours me or empowers me so that I am not compelled to act.

Like playing a computer game in peaceful mode.

I can't recommend it for anyone except me but it might be something to ask your doctors about.

If anyone has tried this approach, officially or otherwise, with or without success, it would be good to hear from them.

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