View unanswered posts | View active topics It is currently Tue Sep 02, 2014 5:23 am



Reply to topic  [ 57 posts ]  Go to page 1, 2, 3, 4  Next
 Sleep Disorders as Possible First Symptoms of LBD 
Author Message

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Sleep Disorders as Possible First Symptoms of LBD
The very first symptom of a possible future with LBD might be sleep disorder issues such as REM sleep disorder or restless leg syndrome.
Years ago John’s feet started to flutter after he drifted off to sleep. At first, I thought it was funny because of the strange and quick movement that appeared “out of nowhere”.
Over time movement progressed up his legs and his arms started to jerk some. He would reach out with his hands as if trying to grasp something in thin air. His face would move to show emotions. He would laugh or talk out loud, obviously involved in conversation with someone in his dream state.
Eventually, he moved to thrashing around, acting out dramatic events of his dreams. Once I told him to wake up when he almost hit me with his arm. I asked him what he was dreaming and he replied that he was in the middle of a sword fight on a ship. That one was scary.
Another time he thrashed around and fell off the bed, acting out some sort of fight from his dreams. He hit his head on the corner of the nightstand and got a nasty cut and bruise from that adventure.
We joked about it and talked about how he must be processing all his courtroom battles symbolically in his dreams. But eventually we had to start sleeping in separate places just so I could get a good night’s sleep and not get hit by mistake.
When Dr. Kaufer targeted John’s sleep issues as his first line of attack, I was happy. I knew that the brain needs to have deep restorative sleep to clean itself out, refresh itself, and process events and emotions from the day. The neurologist’s method made a lot of sense to me as a first step.
Dr. Kaufer took us through a regimen of very gradual increases in the use of melatonin, starting at 3mg, going up to 6mg, then 9mg. This took a few weeks. When another medication was added during this time by John’s primary care doctor, Dr. Kaufer stepped John back to 6mg melatonin, so he would have time to adjust to the other new medicine. Then John resumed melatonin at 9 mg.
The process was very strategic on Dr. Kaufer’s part in not only very gradually letting John’s body adjust to a new chemical, but in doing one thing at a time. He was adamant about having only one variable to observe to keep confusion from clouding the picture of what would actually change John’s symptoms for the better.
John’s sleep, according to Dr. Kaufer’s report, went from “prominent sleep disturbance” to “still has significant residual involuntary movements” to “additional symptomatic relief, although there was still some residual ‘sword fighting’ movements” to “became more agitated at night” (when other medicine was introduced) to “improved sleep pattern”.
Just recently I read about a slow released type of melatonin. I emailed Dr. Kaufer to ask him if that might be a better option since John tends to start talking aloud or acting out dreams around 2-4 AM. He said it was worth a try. So far, it looks like his sleep quality has improved with the slow release formula.
All this information was conveyed using emails to update Dr, Kaufer while he fine-tuned the amount of melatonin until we found the level that was most effective for improving John’s sleep.
This approach also made me slow down and calm down in my frantic search for solutions.
Once again, Dr. Kaufer’s methods were treating me while simultaneously treating John.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Dec 01, 2010 12:43 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
I've heard that some people respond well to melatonin. My husband's first neurologist put him on it early on but it had no effect. Shortly afterward, he developed pseudomembranous colitis, ended up in the hospital and then a SNF for a month and was put on temazepam which he continues to take along with seroquel now.

I should also add that for many years prior to Lewy my husband took benadryl every night for sleep. I told him it would suppress his REM sleep and that it wasn't healthy but he wouldn't listen. His urologist finally told him it was causing his urine retention problems and he quit taking it then. I often wonder whether this anticholinergic drug over a long period contributed to his later difficulties.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 01, 2010 1:57 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Pat,

Sounds like you have a great MD on the team!

RBD can certainly precede motor symptoms of PD, LBD, and MSA by 10-20 years. RBD plus MCI is a risk factor for developing LBD.

Robin


Wed Dec 01, 2010 2:30 am
Profile

Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Is this different to sleep apnea? As I know dad had that for a few years before he was diagnosed.


Wed Dec 01, 2010 2:42 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
We can add Dale's sleep walking to the list of pre-Lewy conditions. He has been a sleep walker since his 20s. He had 'leg tremors' when he was young but has not had them during the night for many years. (He complains about them now during the day.)

For all of our 27 year marriage, he has thrashed about during the night. It hasn't suggested separate beds - but I've been hit a few times. Once, he walked across the street and a neighbor brought him back. Another time, he got up on the bed and walked off the end. He didn't hurt himself - but really scared me.

Seroquel has given us both a full night's sleep.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 10:09 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
After thinking about this subject, I also wanted to add that Dale also had a long history of suddenly falling to sleep in the middle of a conversation with friends. (He also fell to sleep during boring sermons at church - but I don't think that's unusual. :lol: )

The tendency to fall to sleep at odd times never seemed to be significant until now. It seemed unrelated to how much sleep he got - but it could have been related to the sleep walking.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 12:12 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Kelli -
RBD is different from sleep apnea. Many people have sleep apnea. It doesn't seem to be associated with PD or LBD.
Robin


Wed Dec 01, 2010 2:11 pm
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Pat...(Washington Pat) I hope you are wrong about Benadryl. I took it for years, also. Loved that stuff....slept soooooo good. Quit taking it about 4 years ago.

:?: Nan


Wed Dec 01, 2010 5:24 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Nan, I really don't think it causes LBD. Hope not. I know it does depress REM sleep and it's bad to take if you already have Lewy.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 01, 2010 6:13 pm
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sleep Disorders as Possible First Symptoms of LBD
I hope not, too. I know Del cannot take it.....even gets a bit more 'Lewy like' with the gel. Potent stuff. Nan


Wed Dec 01, 2010 6:35 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Robin, could you give a translation of terms, please?
I felt like I was back in education land where we all used letters to describe our daily lives, but others outside "Teacher World" would be unable to translate what we meant.
What are: RBD, MSA and MCI?
Thanks,
PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Dec 01, 2010 10:12 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
This is not a sleep disorder... but it may have been a early indication of Lewy....

An odd behavior Dale had was a tendency to change the subject of a conversation without warning. Most people say something like, 'changing the subject... I'd like to talk about _____'

Instead, Dale would abruptly move to another subject - leaving his listeners wondering what happened. Friends would say, "That's just Dale." Some said he was clever because his mind jumped - without warning - to a new idea. He was quite creative and inventive in business and was often a step ahead of others. He always had several businesses going at the same time in a variety of areas. (Law, real estate, body building equipment, insurance and pension plans. He also started a couple of clubs and a church.)

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 11:01 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sleep Disorders as Possible First Symptoms of LBD
PatS -

RBD = REM sleep behavior disorder
MSA = multiple system atrophy (another synucleinopathy in which RBD appears)
MCI = mild cognitive impairment

(Ignore MSA because dementia is an exclusionary criteria.)

For the Mayo study on RBD and MCI, see:
viewtopic.php?f=14&t=1713

BTW, RBD is a "suggestive feature" of LBD (according to the diagnostic criteria). Since it occurs in other disorders (like PD and MSA), it's not a core feature/symptom.

Robin


Thu Dec 02, 2010 12:35 am
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Pat,
In reading your post I was amazed to read that John has all of those sleep symptoms. Ken also does the reaching for thin air, jerks and dream acting and conversations. The difference is that his didn't start until after his trauma about a year ago. At that point he was already very stiff, couldn't bend to sit, had the masked facies and was cognitively failing. I am now curious to find out (Robin??) if those symptoms are something that can start at any stage. One thing he always did do was come up with a BIG jerk, sometimes swinging when awakened from sleep, but we always attributed that to Viet Nam. Hmmm. Anyone with input on their LOs sleep disorders? Thanks, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Dec 02, 2010 1:11 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Sher,

RBD is where dreams are acted out. The person is reaching, punching, kicking, moving in any way, talking, etc.

I just posted in the "LBD Research" area an article that was published in late July that indicated that RBD can precede other symptoms in LBD by up to 50 years! (There's a lot on RBD posted here on the Forum, especially in the "LBD Research" area.)

As your example suggests, RBD can also appear *after* other symptoms. I have also heard that RBD symptoms can go on and off, with multi-year spans in between.

Robin


Thu Dec 02, 2010 1:36 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 57 posts ]  Go to page 1, 2, 3, 4  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr