REM Sleep Behavioral Disorder

[Slache]

Does anyone have any ideas for managing this? We've been dealing with it for 15 years but it's gotten much worse lately. 

[PrincessMommy]

Have you recently been to a sleep specialist who specialises in PLM rather than apnea?  They may have some new research that helps with that particular issue.

 

[Slache]

1 hour ago, PrincessMommy said:

Have you recently been to a sleep specialist who specialises in PLM rather than apnea?  They may have some new research that helps with that particular issue.

He's up, walking around and talking.

[PrincessMommy]

41 minutes ago, Slache said:

He's up, walking around and talking.

I'm not sure I understand? 

[Slache]

8 minutes ago, PrincessMommy said:

I'm not sure I understand? 

REMSBD is a condition in which people in REM state are not limited in movement. They talk, walk, and in extreme cases injure themselves. In my husband's case he takes his snore device out and refuses to put it back in, even yelling at me about his snoring waking him up. This went on from 11:30 to 4:30 last night. He has a different personality asleep and is uncooperative.

[Slache]

I have to hide his phone or he will text and post on social media. He will also go to the kitchen and eat.

[prairiewindmomma]

Clonazepam works in like 90%+ of cases. A 30 day supply of that drug is like $6 cash price. 
 

ETA: It’s by Rx only, so he would need to be seen by a dr. 
 

I suspect the recent uptick is due to the fact that y’all have a newborn in the house so there’s likely some sleep deprivation going on.

 

Edited September 3, 2020 by prairiewindmomma

[Slache]

1 minute ago, prairiewindmomma said:

Clonazepam works in like 90%+ of cases. A 30 day supply of that drug is like $6 cash price. 

He's trying to avoid that.

[Jean in Newcastle]

The only non Clonazepam treatment listed is melatonin.  https://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/diagnosis-treatment/drc-20352925

[Slache]

A lot of people use lifestyle only and I was looking for more ideas on that. In the past year I've removed everything from his nightstand, started locking the bedroom door, hydration, better breathing devices. Issues lately are lack of sleep so he's been napping.

[Slache]

1 hour ago, prairiewindmomma said:

Clonazepam works in like 90%+ of cases. A 30 day supply of that drug is like $6 cash price. 
 

ETA: It’s by Rx only, so he would need to be seen by a dr. 
 

I suspect the recent uptick is due to the fact that y’all have a newborn in the house so there’s likely some sleep deprivation going on.

Lol! Yes.

[PrincessMommy]

Yes, I realized you were talking about sleep walking.  I still wonder if a sleep specialist who specialises in PLM would be beneficial.  My undertanding is that PLM is an umbrella dx of which Restless Leg and other issues cover.  It may even cover your husband's issues, I just don't remember at this moment. 

If you wanted to avoid drs. you could try and research recent studies that include PLM as well as REM sleep bahavior disorder.  

I would avoid Clonazepam for anything more than a few nights.  I hear scary things about it for long (more than 2 weeks) term use.

 

[Slache]

6 minutes ago, PrincessMommy said:

Yes, I realized you were talking about sleep walking.  I still wonder if a sleep specialist who specialises in PLM would be beneficial.  My undertanding is that PLM is an umbrella dx of which Restless Leg and other issues cover.  It may even cover your husband's issues, I just don't remember at this moment. 

If you wanted to avoid drs. you could try and research recent studies that include PLM as well as REM sleep bahavior disorder.  

I would avoid Clonazepam for anything more than a few nights.  I hear scary things about it for long (more than 2 weeks) term use.

 

Ok, I will. He's not seen anyone as long as I've known him. He's been this was since he was a teen or younger.

I thought the clonazepam was forever. So you just use it when he gets bad like melatonin? What have you heard?

[Slache]

11 minutes ago, PrincessMommy said:

Yes, I realized you were talking about sleep walking.  I still wonder if a sleep specialist who specialises in PLM would be beneficial.  My undertanding is that PLM is an umbrella dx of which Restless Leg and other issues cover.  It may even cover your husband's issues, I just don't remember at this moment. 

If you wanted to avoid drs. you could try and research recent studies that include PLM as well as REM sleep bahavior disorder.  

I would avoid Clonazepam for anything more than a few nights.  I hear scary things about it for long (more than 2 weeks) term use.

I don't want to avoid doctors, I want to avoid massive medical bills. He needs insurance. For multiple reasons.

[PrincessMommy]

3 minutes ago, Slache said:

Ok, I will. He's not seen anyone as long as I've known him. He's been this was since he was a teen or younger.

I thought the clonazepam was forever. So you just use it when he gets bad like melatonin? What have you heard?

I first heard about it because of Jordan Peterson... but here's a website that talks about it:

https://blackbearrehab.com/blog/what-clonazepam-addiction-does-to-a-person/

[Slache]

4 minutes ago, PrincessMommy said:

I first heard about it because of Jordan Peterson... but here's a website that talks about it:

https://blackbearrehab.com/blog/what-clonazepam-addiction-does-to-a-person/

Yucky! I know he hates it. I'm afraid we're going to wind up sleeping in separate rooms though.

[PrincessMommy]

1 minute ago, Slache said:

Yucky! I know he hates it. I'm afraid we're going to wind up sleeping in separate rooms though.

Well, sleeping in separate rooms is not the worst thing ever.  We've been doing it for several years because of both our sleep issues.   But, I realize you also want your dh to be safe.  Hugs.

 

[EmseB]

Have you read The Promise of Sleep? I heard a comedian (Mike Birbiglia) who suffers from REM behavior disorder recommend it.

I have no personal experience with it, just for the grain of salt.

[Pen]

 

Feel like my usual mantra:

“...  all of the patients who had abnormal sleep also had vitamin D deficiency. Over time I realized that nearly everyone with abnormal sleep had a combination of both vitamin D and B vitamin deficiencies.  ...”

Also

Make sure there’s no zinc or magnesium deficiency .   Possibly other such can increase sleepwalking tendencies as well.  But these  can . I don’t know if it’s relevant to the specific syndrome you mention, but with restless leg, sleepwalking, night terrors... first thing I’d want to check would be these vitamins and minerals. 

 No alcohol use.  

Screens? 

 

Sleep deprivation makes for a vicious circle. 

 

Maybe melatonin to help reset or extended release to sleep through night better? 

 

 

 

 

[Slache]

3 hours ago, Pen said:

 

Feel like my usual mantra:

“...  all of the patients who had abnormal sleep also had vitamin D deficiency. Over time I realized that nearly everyone with abnormal sleep had a combination of both vitamin D and B vitamin deficiencies.  ...”

Also

Make sure there’s no zinc or magnesium deficiency .   Possibly other such can increase sleepwalking tendencies as well.  But these  can . I don’t know if it’s relevant to the specific syndrome you mention, but with restless leg, sleepwalking, night terrors... first thing I’d want to check would be these vitamins and minerals. 

 No alcohol use.  

Screens? 

 

Sleep deprivation makes for a vicious circle. 

 

Maybe melatonin to help reset or extended release to sleep through night better? 

He takes all the supplements. I can't believe I can actually say that.

I don't think this is technically sleepwalking because it's a different part of the brain. It's more like sleep raging with walking ability. 🙄

Definitely the cycle issue. He will toss and turn, but at a constant. Or, you know, go dump all of the dry goods on the kitchen floor and move it around the house for 6 hours like Save The Last Castle. Either way he wakes up not rested.

I exaggerate in my frustration. Slightly.

He's on melatonin tonight. He went to bed on time after I threatened to beat him with a dinning room chair, so he's behaving.

[Ausmumof3]

I don’t have any advice but hope you get some help soon that sounds really stressful.  I’m sure it’s probably not even related but I did know of someone who had some that sounds similar after a particularly stressful life event although I don’t know if that would be the same diagnosis.

[Ausmumof3]

I’m assuming magnesium and potassium levels etc are all good as well if you are on all those things.  One of my kids had night terrors and fixing those levels helped.

[Pen]

9 hours ago, Slache said:

He takes all the supplements. I can't believe I can actually say that.

I don't think this is technically sleepwalking because it's a different part of the brain. It's more like sleep raging with walking ability. 🙄

Definitely the cycle issue. He will toss and turn, but at a constant. Or, you know, go dump all of the dry goods on the kitchen floor and move it around the house for 6 hours like Save The Last Castle. Either way he wakes up not rested.

I exaggerate in my frustration. Slightly.

He's on melatonin tonight. He went to bed on time after I threatened to beat him with a dinning room chair, so he's behaving.

 

Did melatonin help or make it even worse? 

Matthew Walker’s  book on sleep is good. He should probably read it.  Should be getting himself to bed on time, and maybe the book could help him understand  that. 

It sounds extremely frustrating and perhaps even dangerous if he’s raging during sleep. 

Does he have ptsd? 

Try to get his actual intracellular levels checked if you can.  Or at least blood levels as possible. 

Taking supplements may not mean *absorbing.  Also if something is wrong type (methylation etc) for him maybe that is a problem. (For example pyridoxine can be agitating.) pay attention to timing...   stimulating ones in morning, relaxing in evening perhaps.

 

 

Has he been evaluated in a sleep lab?

And by a neurologist?

 

Is he different elsewhere? Like motel or camping outside? 

 

What normally causes body to be able to be mostly still during sleep?  In your position I would probably research that and try to see if anything can be done about it. 

 

Might a neuro entrainment for REM cycle or other relevant brain waves help?  

 Meditation? Yoga?

A recorded tape playing softly that talks about calmness and staying in bed? 

 

 

 

Maybe he needs a sleep hammock that’s hard to get out of as well as door lock .  

Or a slant bed to change blood flow. 

Edited September 4, 2020 by Pen

[Jean in Newcastle]

4 hours ago, Ausmumof3 said:

I’m assuming magnesium and potassium levels etc are all good as well if you are on all those things.  One of my kids had night terrors and fixing those levels helped.

Magnesium levels are notoriously hard to check. The body works hard to keep your serum (blood) levels of magnesium as normal as possible even if it robs other parts of the body to do so. So a normal blood test is unreliable. Most people are deficient in magnesium. I just take it to “bowel tolerance”. 

[prairiewindmomma]

I had one more thought. If melatonin doesn’t work, he could try just taking GABA (which is an OTC supplement) directly. (Clonazepam boosts GABA production.)

[Pen]

6 minutes ago, Jean in Newcastle said:

Magnesium levels are notoriously hard to check. The body works hard to keep your serum (blood) levels of magnesium as normal as possible even if it robs other parts of the body to do so. So a normal blood test is unreliable. Most people are deficient in magnesium. I just take it to “bowel tolerance”. 

 

That’s true. And bowel tolerance method doesn’t work for everyone. As some people have low bowel tolerance for oral mag without getting a good cellular dose of magnesium. 

Maybe a long Epsom salts (with plenty of magnesium, cups not spoons worth) bath before bed would be a good idea.  Magnesium lotion.  And oral magnesium threonate that is more absorbable probably. 

Calcium also important.

 

Glycine and 5HTP at bedtime might also help. 

Warm milk with cardamom, passionflower...

[Slache]

7 hours ago, Ausmumof3 said:

I don’t have any advice but hope you get some help soon that sounds really stressful. 

It's usually not bad.

7 hours ago, Ausmumof3 said:

I’m assuming magnesium and potassium levels etc are all good as well if you are on all those things.  One of my kids had night terrors and fixing those levels helped.

He's on all the things. We've really upped our supplement game these past few years. All we have left to add are probiotics.

3 hours ago, Pen said:

Did melatonin help or make it even worse? 

Matthew Walker’s  book on sleep is good. He should probably read it.  Should be getting himself to bed on time, and maybe the book could help him understand  that. 

It sounds extremely frustrating and perhaps even dangerous if he’s raging during sleep. 

Does he have ptsd? 

Try to get his actual intracellular levels checked if you can.  Or at least blood levels as possible. 

Taking supplements may not mean *absorbing.  Also if something is wrong type (methylation etc) for him maybe that is a problem. (For example pyridoxine can be agitating.) pay attention to timing...   stimulating ones in morning, relaxing in evening perhaps.

 

 

Has he been evaluated in a sleep lab?

And by a neurologist?

 

Is he different elsewhere? Like motel or camping outside? 

 

What normally causes body to be able to be mostly still during sleep?  In your position I would probably research that and try to see if anything can be done about it. 

 

Might a neuro entrainment for REM cycle or other relevant brain waves help?  

 Meditation? Yoga?

A recorded tape playing softly that talks about calmness and staying in bed? 

 

 

 

Maybe he needs a sleep hammock that’s hard to get out of as well as door lock .  

Or a slant bed to change blood flow. 

Melatonin helps if we catch it in time. If he's days in it makes it worse. But he's completely coherent so I don't notice. I'm learning his meanness only exists in a sleeping state and catching it sooner.

I will read the book.

Theoretically dangerous. We have a king bed because he used to hit me all the time. Now he hits the bed. We've never colslept with babies. No PTSD.

His previous blood tests are all good and he absorbes his vitamins. He's overdue for a workup but I don't think anything's changed.

No sleep lab or Neuro? This has been a thing since long before I came around.

He's the same everywhere.

People in REM are in a state of paralysis. He is not. It's a birth defect or brain damage or something. He thinks it's from falling down the stairs as a toddler. I have no idea if that's a valid theory.

Music or sound of any kind has always made it worse.

I could hammock him. I used a hammock when my daughter began sleep walking. We'd have to buy one. And find a place to put one. I'd use it!

3 hours ago, prairiewindmomma said:

I had one more thought. If melatonin doesn’t work, he could try just taking GABA (which is an OTC supplement) directly. (Clonazepam boosts GABA production.)

Thanks!

[Pen]

21 hours ago, Slache said:

It's usually not bad.

He's on all the things. We've really upped our supplement game these past few years. All we have left to add are probiotics.

Melatonin helps if we catch it in time. If he's days in it makes it worse. But he's completely coherent so I don't notice. I'm learning his meanness only exists in a sleeping state and catching it sooner.

 

if it were me, since melatonin  can help him sometimes, I would try a very consistent bedtime regime (or as much as possible with youngsters), of a set amount of fast acting and of sustained release melatonin an hour before a fairly early bedtime.  You might have to experiment with dosage of melatonin, or even tweak in different circumstances.  But I would try using it every night, regularly.    Even when he seemed to be okay. 

 

Just that, nightly melatonin and nightly regular bedtime might go a long way.

 

ETA- and maybe a very calming bedtime ritual for him like he reads story to children going to bed, or plays half an hour  of a calm game like chess with a child, gives children massages after he has taken his melatonin and before his own nightly final readying for bed... so that he is tiring himself with the children’s own rituals as the melatonin takes hold. 

 

 

Quote

I will read the book.

Theoretically dangerous. We have a king bed because he used to hit me all the time. Now he hits the bed. We've never colslept with babies. No PTSD.

His previous blood tests are all good and he absorbes his vitamins. He's overdue for a workup but I don't think anything's changed.

No sleep lab or Neuro? This has been a thing since long before I came around.

 

These seem like they would be good idea.  I have friends who had problems picked up by sleep lab, that were fixable. 

 

Quote

He's the same everywhere.

People in REM are in a state of paralysis.

Usually. Though restless legs, sudden jolts when dreaming of a movement are pretty common.  And sometimes respond to zinc, magnesium, vitamin D.  

What was his D level when tested including units? 

 

Quote

He is not. It's a birth defect or brain damage or something. He thinks it's from falling down the stairs as a toddler. I have no idea if that's a valid theory.

 

Idk. Probably possible. Even more reason for neurological work up and sleep lab. 

 

Quote

Music or sound of any kind has always made it worse.

I could hammock him. I used a hammock when my daughter began sleep walking. We'd have to buy one. And find a place to put one. I'd use it!

Thanks!

 

Hammock stand?   Cushions under in case he tips himself out?

 

Edited September 5, 2020 by Pen

[Clear Creek]

No ideas for managing it, but I want to thank you for putting a name to the disorder. My husband has had it for as long as we have been married, but I didn't know it was anything more than extreme sleepwalking. It has increased this year from several times a month to several times a week, so I am off to the store to buy some melatonin to see if that helps him. He and I could both use a good night's sleep, lol.

[BeachGal]

Rocking beds for adults are a thing. Kinda pricey, though.

https://rockingbed.com

My husband and one son each use an Ooler cooling mattress pad that goes under the fitted sheet. It circulates cooled water that the sleeper sets to a specific temp and can be changed throughout the night. So, for example, my husband has it set to a certain temp when he goes to bed and around midnight until 3 am has it go down 1 degree per hour because he used to often wake around those hours. Matthew Walker could control his patients' sleep just by controlling the temperatures of the special suits they wore in his sleep studies. Core body temperature is very important to go into deep, restorative sleep. Glycine works by lowering core body temp.

https://www.chilitechnology.com/products/ooler-sleep-system

Get morning exposure to outside light to set daily circadian clock. Even cloudy days. Earlier is generally better.

[kbutton]

I have zero input, but I have heard how severe this can be from a friend who had it. I think she outgrew it, but she used to leave the house and even try to drive while asleep.  

I hope you find something that works asap!