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Sleep Patterns/Sleep Disturbances (Read 9412 times)
Lore
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My brother Kevin (Cubbie)
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Sleep Patterns/Sleep Disturbances
Jul 28th, 2005 at 11:20am
 
SmileyHi MM Family,

Has anyone experienced sleep pattern or sleep disturbance issues? Smiley

Any information is appreciated. Kiss

Thank you 

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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itsme
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Re: Sleep Patterns/Sleep Disturbances
Reply #1 - Jul 28th, 2005 at 12:39pm
 
Hi Lore,

Itsme again. Yes, I do experience insomnia and I spoke to my general doctor and he told me to take ambien.
Sometimes it helps but sometimes I still wake up in the middle of my sleep ( around 2am or 3am in the morning) and can't go back to sleep right away.
I used to hear a lot of swooshng and ODD SOUNDS in my ear and head but that's settling down, although it bothers me at times. I try to IGNORE IT or it can freak me out. So, yes....I think our sleep patterns does get effected, although mine is getting better and I don't take
ambien as often now.

Hope Kevin can get his zzzz's cause I hear SLEEP is very important for us!

itsme
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kotipup
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My daughter, Daphne, has
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Landenberg, USA, PA, Pennsylvania
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Re: Sleep Patterns/Sleep Disturbances
Reply #2 - Jul 28th, 2005 at 1:22pm
 
Hi, Lore.

Yes... we have had major sleep issues with Daphne.  They have been a lot worse since her strokes, so maybe it's MM related.  She can't talk -- so, who knows what's going on with her.

For awhile, she was waking up around 4am pretty regularly.  The past couple of nights she has started screaming and yelling around 11pm -- and will continue for hours and hours (finally fell asleep at 3am today, but was crying until 5am yesterday).

I am very interested in responses you get on this topic... would love it if I could figure out what's going on!!

Jenny

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LisaH
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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: Sleep Patterns/Sleep Disturbances
Reply #3 - Jul 28th, 2005 at 2:46pm
 
Lore,

Boy do I have sleep issues!  Smiley I've had trouble sleeping for years now but it's at an all time high since my last surgery (April).  I spoke to my surgeon about it and he said that it was common for many people after brain surgeries (I also had this problem after my first surgery 3 years ago) and should rectify itself over time.  I hope it's soon because I'm not faring well with 2-3 hours of interrupted sleep/night.  Smiley The doctor also suggested Ambien for me too but I can't afford it and it isn't covered under my drug plan. Undecided  I don't think I'd be sleeping at all if it weren't for Tylenol PM.

It's funny because I saw Kevin post here late (early this morning) and immediately thought to myself "hmmm bet he can't sleep either" and then you posted this!   Helpful to hear I'm not alone. 

Smiley Lisa

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kotipup
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My daughter, Daphne, has
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Re: Sleep Patterns/Sleep Disturbances
Reply #4 - Jul 28th, 2005 at 2:55pm
 
One more thing... has anyone tried Melatonin for sleep issues?   On an epilepsy board, I know that many parents have said it has dramatically helped their kids.

We tried it with Daphne for awhile - and it seemed to really work (to the point where she was going to sleep without it and we stopped using it), but these past few nights it hasn't really done anything for her.  Seems like whatever issues she has might be related to pain, though.

Anyway, for those who are reading this with sleep issues, it might be worth a try!

Jenny
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LisaH
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Re: Sleep Patterns/Sleep Disturbances
Reply #5 - Jul 28th, 2005 at 5:54pm
 
Jenny,

I tried Melatonin and while it did indeed help me to get to sleep, I experienced HORRIBLE nightmares  Smileywhich I eventually linked to the Melatonin.  I personally must not react to it well but I too have heard that it's very helpful to many people.

Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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kotipup
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My daughter, Daphne, has
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Landenberg, USA, PA, Pennsylvania
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Re: Sleep Patterns/Sleep Disturbances
Reply #6 - Jul 28th, 2005 at 6:14pm
 
Lisa --

Yikes!  I guess even "natural" remedies can have their undesirable side effects  Undecided

Glad you were able to figure out it was the melatonin!  Sorry that you haven't been able to get much sleep, though. 

I am right there with you... even though my sleep patterning would normally be just fine, I have a little red-head that won't let my husband and I get a decent night's sleep  Wink

Jenny
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CarasMOM
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My 11 year old Cara has
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Re: Sleep Patterns/Sleep Disturbances
Reply #7 - Jul 28th, 2005 at 7:10pm
 
Caras been a great sleeper once in bed...maybe its the few TIA's she has along with an active personality...she's tired enough.

I do know that for a person with ADD or ADHD...their minds go on and on.  I have two boys who struggle with sleep (now 17 1/2 and almost 16)...I forgot already but they were on a medication that is suppose to shut off the ADD at night...a mild form...never really worked.

My oldest was put on melotanin once..never worked.

They are currently on Trazodone and seems to work...by 30 minutes they are asleep.  Both only take their ADD medication during the school year.

I read with ADD....people who have brain trauma tend to have some similarities to people who have ADD.   So been watching Cara's attention span...which was very very sharp prior to the operation...she was unbelievably so focus...then when she had surgery one, the stroke that night after the surgery...her attention span disappeared...one second here then one second there...has come a LONG way since first and second surgeries.   So I see alot of "healing", with her attention span getting longer and longer....but I would imagine having brain surgery theres bound to be some "easily distracted" moments.   Even Cara's OT and PT was surprised I wondered if Cara has a bit of ADD...they said its very similiar but chances are Cara will improve where others may not.

Smiley CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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Michell
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Re: Sleep Patterns/Sleep Disturbances
Reply #8 - Jul 28th, 2005 at 7:49pm
 
I don't know if this has anything to do with Trey's MM, but he sometimes cries in his sleep, sometimes it wakes him and sometimes not.  He also, at times, has a hard time getting comfortable.  He is two and doesn't tell us, can not tell us if there is anything wrong when he cries or if something is bothering him when he has a hard time getting comfortable.

Michell
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Lore
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My brother Kevin (Cubbie)
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Gender: female
Re: Sleep Patterns/Sleep Disturbances
Reply #9 - Jul 28th, 2005 at 8:25pm
 
Thank you Irene, Lisa, Jenny and Carasmom for sharing your sleepless experiences. 

Lisa, you are right on the money.  Kevin was posting at 2:00 am cause he sleeps about two or three hours at a time. Of course that now means me too since I wake up thinking he might need help.  Perhaps I will just have to drink heavily.  I have to find the humor in it or I would  simply go crazy.

Jenny, my heart goes out to you with little Daphne.  It has really got to be difficult for all the family.  I hope the doctors can truly find something to help sweet little Daphne sleep....and you too. I know when Kevin was having horrible headaches and he couldn't speak it was extremely difficult to know what was happenning and to what degree and he is a grown man.  I can only imagine what it is like for you with Daphne.  God bless you all

Irene, thanks for letting me know about Ambien. You have been very helpful and supportive sharing your experiences which Kevin can really relate to. He agrees with you, jokingly of course, that it is because you are two of the older ones. HeHe!   

Carasmom,  You will be interested to know I took Kevin to the doctor today to discuss his sleep patterns and he prescribed Trazodone.  Thanks for sharing that it works for your boys. Also, I follow Cara's story.  What a sweet little girl who has had to endure so much.  I know you have your hands full.  When I think I have had about all I can endure, I  think of you and Jenny. God Bless you

I think the sleep patterns are related to MM.  Kevin did not have this problem until after his stroke.  Also, the doctor explained that some sleep aids allow a restful nights sleep but one can wake up in the morning and feel groggy. This bothered the doctor because Kevin has always had balance problems since his stroke. He also explained that Kevin's stroke caused high anxiety and as a result of having to take anti- anxiety meds, he is somewhat limited to what he feels comfortable prescribing. Kevin is on other meds as he has also had a seizure.  So I guess it probably depends alot on the daily meds and adding a sleep aid and also on ones specific neurological condition. Oh, the doctor also mentioned that some sleep aids like Ambien are usually short term for those who can't get to sleep as opposed to those who sleep a few hours at a time. Apparently this is the key to what you may or may not be able to take to assist with getting a full nights rest over the long term.

Thank you all for sharing.  I will keep you posted as I have to keep track of Kevin's sleep for the next two weeks and if he is still having difficulty sleeping, more than a couple hours at a time, he will reevaluate Kevin at that time.

Thanks again and God bless all.

Lore      
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

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Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Sleep Patterns/Sleep Disturbances
Reply #10 - Jul 28th, 2005 at 8:33pm
 
Hi Michell,

I hope you too find some relief.  My heart goes out to these little ones that can't tell you what is going on with them  It has got to be very difficult.

I researched on the net some neurological sleep disorders and patterns but it wasn't much help to Kevin.  I didn't spend alot of time researching but I did find some pediatric posts on the net.  I skipped them simply because Kevin is 47 years old.  But it might be helpful to all the MM families with children.  I simply typed sleep patterns/disturbances in the url. I suspect if you add the word pediatric you may find some information related to children and possibly moyamoya as I aslo typed sleep disturbans/patterns moyamoya.

God bless you Michell

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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CarasMOM
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Re: Sleep Patterns/Sleep Disturbances
Reply #11 - Jul 29th, 2005 at 12:51am
 
Lore,

I want to add too that when Ben first started Tradazone ...he had headaches in the morning...but got used to it.  When Ben first got it..he was fast asleep in 30 minutes...Brandon was shocked and wanted to know what happened to Ben...I explained he got a new sleeping aid.  So next day I called the doctor and asked if Brandon could try it.  And it works.  Brandon never experience "head aches" like Ben with it.  But they tend to go to bed late and take the pill late.  There were times when they had to get up early and felt tired...so far its summer...and the do sleep in.   When school starts I'm going to make sure they take it at nine or ten  rather than at 11 or midnight.

Smiley CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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itsme
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Re: Sleep Patterns/Sleep Disturbances
Reply #12 - Jul 29th, 2005 at 2:24am
 
Hi Lore & Kevin,

I'm glad I'm not the only one on this site at 1am....
I was kind of embarrassed when I would respond SO EARLY IN THE MORNING, ( it's cause I can't sleep either).
hahaha...I blamed it on *Change of life* issues, hahaa.

Any way, just a quick note about Ambien. I take 5 mg, sometimes 2.5 ( I cut it in half ) but I experience no drowsiness the next morning...it's all good.
It's such a drag when you wake up every few hours, but it seems like it comes with the MM territory for some of us.

Let us know what the doctor suggests, cause we can all use a good nights sleep.

Thank you,
itsme

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riosdallas
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Re: Sleep Patterns/Sleep Disturbances
Reply #13 - Jul 30th, 2005 at 9:14am
 
hello,
I too have sleep problems. But, it started right after surgery. I see the my dr. next week I'm going to ask about it. Waking up every few hours makes you still tired in the morning. 
             Lena...
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Lore
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My brother Kevin (Cubbie)
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Gender: female
Re: Sleep Patterns/Sleep Disturbances
Reply #14 - Jul 30th, 2005 at 11:00am
 
Hi Lena,

I will be interested to know what your doctor prescribes for you and whether or not it works.

So far, Kevin is sleeping with Trazadone.  He didn't sleep the first night but has sleept the second.  I'm thinking it might take time for his body to adjust.  I quess time will tell.

Keep us posted and thanks for sharing your experience.

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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gotchlorine
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Our daughter, Tara, lives
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San Jose, USA, usa, 24, 158, CA, California
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Re: Sleep Patterns/Sleep Disturbances
Reply #15 - Jul 31st, 2005 at 12:55am
 
Hey guys,

Sorry for jumping in to this thread so late, but just wanted to put up another "tally".  Tara has always slept like a log - still does.  She can easily sleep 9 or 10 hours, waking up just to go to the bathroom, then right back to sleep.  I've not seen any change since her surgeries.

Wish I had that kind of time to sleep . . .

Hugs to all,
Jill
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