Falling out of Bed? REM Behavior Disorder? Does anyone know about this?

[Carolina]

OK Dearest Angels,

I fell out of bed for the fourth time in three months, last night.

When I fall out of bed it is during a very vivid dream, in which I'm very active and very involved.

Last night I was flying over the ocean and trying to make it to land before I crashed (I wasn't flying a plane).

I fell out of bed just as I made it to land.

The time before (about three weeks ago) I was fighting a sort of robot alien thing that was chasing me up some stairs.  As I kicked out at the alien robot thing, I fell out of bed, scraping my kicking foot on something, so I still have the cuts.  My feet heal very slowly due to the neuropathy.

The earlier two times were similar, but I don't remember the dreams now.

YES, I have ordered a bedrail thing, which should come soon.

It is very unusual to move during the dream stage of sleep, which is called REM. 

Usually you are UNABLE to move, only breathe and move your eyes under the lids = rapid eye movement is what REM stands for.

When you DO move during REM it is called REM Behavior Disorder (RBD).  If it isn't caused by drugs or alcohol, it is very, very often a precursor of Parkinson's disease, dementia, or Alzheimer's (over 30% of the time).

I've called my primary care, because I finally started looking up this problem, as well as ordering the bedrail.
I didn't get a call back, so I won't hear until Monday.

I wonder if I should also call my neurologist?  I guess I can ask the primary care doctor, too, if I should call the neurologist.

Does anyone know about this?  Any suggestions?   

It is bizarre to wake up falling on the floor.   I HAVE to wake up but I don't WANT TO.  I wish I could just go back to sleep on the floor, but I need to determine if I'm OK, for one thing.  But the time I do get up and get back into bed it is hard to go back to sleep.

It also turns out that if I do have this RBD it would explain why I'm always so exhausted and depressed these days.  RBD, if it truly is that, means that your sleep isn't very refreshing, your body isn't relaxed as it should be, and then you are exhausted.

I am concerned that I won't get away with just scraped toes in the future....but I'm assuming the bedrail will put an end to the falling.

I would love to hear from someone who knows about this.  Or find another reference to the condition that tells me more.

You know, I really did think things would level out, which is totally absurd when I say it.  Of course we keep going down hill........sigh.

Hugs

Elaine

[sass]

E,
you give me a new research subject!  iraisin will jump on this too.   I, unlike you, never have REM sleep.

CPAP with oxygen and all...So as I sit at my computer all night I sink into catnaps and often with my eyes open...

I used to sleep wonderfully...deep dreams and all...makes you wonder.

anyway, i have these little catnappy dreamlike visuals and think there is a person in the room with me.
not scary, just like Dad is at the door kinda thing, I turn and immed realize, nope.just my imagination, running away with me.....

Hope you get some answers,  I think you need a highly qualified sleep study done.  Don't just go with anyone..Try to find a pulmo that does them as a speciality too.  not a shopping center one!

So, I go with my trusty nightlight to research some info on this.   ~sass~

[sass]

Bells!!!!  Tie some bells on your bed or something..on your toes on your nose!   You can't keep falling on the floor!!  not nice!   what time of the night does it happen?? Same time, maybe set your alarm to wake you before it happens...i don't know...Good Luck  and put some quilts and padding on the floor..load some pillows down there...BELLS

http://www.everydayhealth.com/sleep/other-disorders/rem-behavior-disorder.aspx

http://www.emedicinehealth.com/rem_sleep_behavior_disorder/article_em.htmhttp://

www.aasmnet.org/Resources/bestpracticeguides/PP_RBD.pdf

http://www.feinsteininstitute.org/Feinstein/08-126

[Carolina]

LOL Sass, you can make me smile about anything.


Amazing.

Bells on her toes, and rings on her (osteo arthritic) fingers.

Well, I will put pillows and stuff, but I usually haven't fallen out of bed two nights in a row.

And YES, I do sleep, and it's usually around 1:30 when I fall out of bed after falling asleep around 10 pm.

AND I  sleep at least 9-10 hours a night, but get up to pee a bunch, because of the IC and advanced age.

AND I am always tired.

BUT I cannot imagine what you have, and I don't have apnea, and no CPAP.

So some things are much easier for me.

Just this falling out of bed.  Icould sleep on the floor, that IS recommended.

Well, giving it all thought until the bed railing thing arrives, which should be soon.

By the 26th I think.

I'll keep you posted.

Elaine

[slccom]

Moving while in REM sleep is a form of sleep disorder that may be treatable. You  might want to consult a sleep doctor.

In the meantime, put pillows on the floor?

[Aquarius]

Hi Elaine,  "If it isn't caused by drugs or alcohol"....  my first thought when reading your post is that this is drug induced / associated. 

Even OTC drugs, like Benadryl are not benign. 

If you are taking 1 or 2 Benadryl a night to sleep, it would not be surprising that in addition to causing significant dryness it affects dreams and REM behavior and who knows how it interacts with prescription medications.   Might be worth a trial of staying off the benadryl for 4-6 weeks and see how you do.  Good luck.  The bed rails sound like a great idea.

[Carolina]

Hi Aquarius:


Ok, got the idea about the drugs, tho' of course I'm taking things I've taken forever, BUT it has always been the case that stuff that worked with no problems can turn and bite you big time!

I haven't been having this falling thing regularly, so that makes it hard to make correlations.

Now, I don't really have the serious sort of RDB, since all I've done is fall out of bed, I'm not ranting and raving and striking out at my husband (or whoever it would be in my dream).

It's all very interesting, but honestly I don't know if it leads anywhere.

And the bedrail I ordered will also serve to support me as I get in and out of bed, so that is sorta good I think.

And it's the small version so it is portable.

I'm not truly very worried about this.  mostly since I didn't fall out of bed last night, tho' my husband did tap me on the shoulder and remind me to move closer to the center of the bed a couple of time.

The days when I have fallen out of bed are the most difficult, obviously.

It just seems so weird to have it happen.

Elaine

[jazzlover]

It can be an early sign of Parkinson's. I'll find the link.

Read the second one:

caring.com/articles/early-signs-parkinsons

YES, CALL THE NEUROLOGIST!

[Carolina]

Thanks Jazzlover,

I do have four of the symptoms, sense of smell way weird, falling out of bed, sweating and one other.  What was it?

Constipation.  pooh

Yeah, but I have all the symptoms of Sjogren's, but never test positive either.

Idiopathic SICAA, idiopathic Interstitial cystitis, fainting (orthostatic hypotension) Peripheral neuropathy, bowel blockages that come and go, weird sweating (see above), weird sense of smell, and on and on. 

I was sure it was PSJS, but now I'm glad it's not.  Or if it is it won't progress fast enough to make  me really unhappy the way I read about on a daily basis here in the Forum.

I have this and that, and the worst is the Peripheral Neuropathy and the osteo arthritis.  Now this falling out of bed, but I'm sure that is just a passing thing.  Or not.

oh well.

I'll just stay tuned.  As far as I can tell, IF this is the beginning of something like Parkinson's, it is probably a long way off, and anyway I don't expect to 'stay tuned' for decades more.

which is ok by me.  i've never thought that 'she/he who lives the longest wins, anyway".

Hugs

Elaine

[irish]

Caroline, I am sorry to hear what is happening to you now. First of all, I was going to ask if you had started on any new drugs of any kind. The benedryl is very bad for REM sleep the way I understand it. My neurologists treats my son for a sleep disorder. He was trying to treat his sleep disorder with OTC Tylenol PM which contains benedryl.

The Neuro said that thanks to this OTC drug with benedryl she has had an increase in patients. She said it really screws up the sleep for people.

I would not panic about the Parkinsons, etc., but I would see a neurologist because they have more knowledge about medications and their effect on the brain. Also, you might want to try a large air mattress for the floor. When we stayed at my son's house for 3 weeks I slept on one and they are so darn comfortable. They are on sale at many of the stores now. Hope you can get this solved. Meanwhile stay safe. Irish

[Carolina]

Dearest angels,

I left out the Benedryl last night, at the suggestion of several.

I haven't started anything new.

Last night I did NOT fall out of bed. INSTEAD I had extremely vivid dreams, and in one I was SHOUTING at someone.

And, lo, and behold, I was shouting (or trying to) in my sleep,and woke up (with a VERY dry mouth, of course).

My husband also woke up and knew that I was "talking and making noises" in my sleep,

I kept have very wild dreams, and slept until almost 9 am (going to bed before 10 pm, mind you).

I woke up very very groggy and dazed, not quite the same feeling I had the day after I fell out of bed.

That day not only was I groggy and exhausted, but I felt somehow like I was filled with helium or something, kind of floaty and weird.

Anyway, the next day after a night with no falling out of bed or talking/shouting, I was normal. 

Something is going on for sure.

But as is so often the case, it will come and maybe  go, or stay, but just be 'one of those idiopathic things'.

I'm not really 'worried' about developing one of the forms of dementia that often are preceded by RBD (REM Behavior Disturbance) mostly because I don't really worry about much most of the time!

And I don't have any tremors or true forgetfulness.   

I truly dislike the neurologist I see, so I may just talk to the primary care, if they bother to call back.

And then also mention it to my new rheumatologist when I see her in November.

Otherwise, really it's pretty much wait and see.

Whatever they use to treat RBD doesn't affect the outcomes of Parkinson's, dementia or Alzheimer's, slow it or change it in anyway from what I've read.

WE have an inflatable mattress for the floor, and perhaps I could try that, tho' I'm just staying closer to the middle of our huge  bed and hubby is tugging me over to the middle during the night when he thinks of it.

It IS always SoMETHING.

Hugs

Elaine

[Dolly Dimples]

  Hi Elaine, Could you put the bed on a wall, you get in first , hubby next, hey presto ,, your barred in!!
      I dont reckon you will climb over hubby eh?  Just a thought?
                                     Stay safe, Dolly x

[irish]

Is it possible that you are having some little seizures during the night that cause this. It may seem like you are dreaming all night, but the specialists say that it is just seconds/minutes, etc. Seems like an eternity.

Hope that it helps to get off the benedryl. I am also wondering about the antidepressant. I don't know how long you have been on it, but it is possibe that your blood level has gotten higher now and could possibly affect you this way. Very hard to tell. Sounds like you will be doctoring to figure this out. Sleep study coming up and EEG I am betting. Good luck. Irish

[Carolina]

Dear Irish,

I'll check the Cymbalta, that's the antidepressant, but I take it really for the pain of the OA.

I had bad dreams Friday and Sunday nights, no falling out of bed, but shouting and screaming in the dreams which turned into noises and waking up.  Last night I actually dreamed I was awake and having something like a seizure in my head several times in a row!  Of course I was asleep and woke up when I started screaming.  ACK.

I see my primary care on Thursday morning, so we'll see.

I didn't think of putting the bed against a wall!  I get out to pee several times a night, and the bed rail should be here by Thursday.   Plus Hubby grabs me as soon as I start making any noise or thrashing about.

Yeah, sleep study and EEG sounds like the way to go.

I had an EEG in February 2010, with this diagnosis from the neurologist:

The EEG has an alpha activity of 9 cycles per second of 30 to 50 microvolts of amplitude with a fair modulation.  The sharp waves and slow waves are 6 to 7 cycles per second mixed with the alpha activity.

The most prominent finding is the presence of frequent generalized paroxysms of sharp waves of 50 up to 150 microvolts of amplitude.  The Paroxysmal activity was more frequent in both anterior temporal and mid temporal regions, on both sides.

The  neurologist in Raleigh completely dismissed the findings of this neurologist and did not order any tests of his own.

So in the back of my mind is the idea that there may be some basis to his findings.

I guess we'll see, or we won't!

I'm not worried, just wondering what sort of excitement tonight might bring?

Hugs

Elaine

[irish]

Both sjogrens and lupus have the propensity for CNS issues involving hallucinations, delusions, psychotic episodes. This is something that should be ruled out.

I have auditory hallucinations at times and have found it interesting that this is listed as something that occurs in people with lupus. There isn't anything that is sacred when it comes to autoimmune disease!!!! Hope you can find out soon what is going on.

I wonder what would happen if you tried to sleep during the day and stayed up at night. Might be tied in with circadian rhythms. I'm just thinkiing out loud. Good luck. irish