Sleep

[Guest guest]

hi Barbara,

Yes Cody sure can sleep and I can't or at least not when I want to. I am wonderful at falling asleep while kneading bread or standing on the deck. It is really getting hard on the artificial knee because I start to fall when I go out and then my knees snap to which is what wakes me up and so far has saved my butt. However, the artificial knee is getting pretty week and yesterday while sitting down the stuff inside shifted out of normal but luckily enough was just a matter of shaking it around to get it working again. I see my Rheumatologist in the beginning of March. I am hoping all I need is it readjusted and not replaced as that was the most miserable surgery I ever went through.

I saw my Neurologist on Thursday and he said the electric shock feeling I get in my head before I go out is my brain shutting down. And here I thought he was going to laugh when I asked him about it. I just wish I could do something to reverse the outcome when I feel this. My brother has full blown Narcolepsy and has a dog that shakes him when he starts to nod out so that he can even drive now.

[Guest guest]

Hi ,

Have you tried playing music or lullabies? I know that worked for us..I can

remember back when my daughter was Jack's age and she hardly ever napped.

Maybe a half an hour here and there if we were lucky. It must be a CHARGE thing

cause my 1 year old takes one long nap and its anywhere from 2-4 hours

long!!!! He was also sleeping through the night at 2 months old, something she

did

not do!!! Anyway, try some music, we bought a crib cd player and to this day

all mine love music!!!

Tia

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Ah...the wonders of night parties - often discussed here on the list. I

just think these guys are in their own dimension sometimes and there's not

much we can do about it. Kennedy still has to odd night party but she just

puts a DVD in and watches it (sometimes clapping and singing loudly though -

eek!). Would he not cry if he had a movie playing or something? I know

he's kind of young but it might help him to relax as it's kind of " fun "

without needing mom there to play with him... I would do ANYTHING to make

sure I get my sleep - I'm like you, I need my sleep to function!

Lis

>

> OK, Jack is 10 months and a couple hours old. He went to bed last night

> at about 9, woke up at 11, played in his crib until midnight, got upset and

> needed a breathing treatment and then was up until about 1. Then woke up at

> 7:30 and has only napped for half an hour today! I am going CRAZY!!!! I am

> the kind of person that needs 9 hours of sleep to function. Right now at

> this moment it is 9:15 and he is going strong. We have the lights dimmed and

> everything is quiet except him! I know that the lack of a need of sleep is

> common in CHARGERs but what about the parents????? I'd love to just put him

> in his crib to cry himself to sleep but crying = suctioning, which just

> wakes him up further! Is anyone else with a tiny CHARGER having these " wild

> child " issues? And those of you with older CHARGERs.... Any advice?

> Please????

>

> ~ <--------NEEDS SLEEP

>

> Mom of Jack (10mo. CHARGEr)

>

> Jack has a carepage! www.carepages.com Title: Jackspage

>

> __________________________________________________________

> Sick sense of humor? Visit Yahoo! TV's

> Comedy with an Edge to see what's on, when.

> http://tv.yahoo.com/collections/222

>

>

[Guest guest]

This isn't exactly on the subject of Jack (though I remember those days

vividly). is now 23 and has a house of her own 5 minutes from us.

When she spends the night at home almost every Saturday night, she

almost always sleeps the entire night. Very recently, however, she's been

getting up, often for quite a while, with her houseparent type. I'm

beginning to think that this is a variation of the ole night party we discuss

so often here. It's really sort of funny to me, but not when I remember that

her very kind and capable care giver is seriously considering the need to

increase her sleep med. I swear, it doesn't seem to matter whether our

kids are 23 or 10 months! They just wanna have fun??? Martha

[Guest guest]

---------------------- Original Message: ---------------------

To: CHARGE

Subject: Re: Sleep

Date: Tue, 17 Jul 2007 01:29:29 +0000

> Ah...the wonders of night parties - often discussed here on the list. I

> just think these guys are in their own dimension sometimes and there's not

> much we can do about it. Kennedy still has to odd night party but she just

> puts a DVD in and watches it (sometimes clapping and singing loudly though

-

> eek!). Would he not cry if he had a movie playing or something? I know

> he's kind of young but it might help him to relax as it's kind of

" fun "

> without needing mom there to play with him... I would do ANYTHING to make

> sure I get my sleep - I'm like you, I need my sleep to function!

> Lis

>

>

>

> >

> > OK, Jack is 10 months and a couple hours old. He went to bed last

night

> > at about 9, woke up at 11, played in his crib until midnight, got

upset and

> > needed a breathing treatment and then was up until about 1. Then woke

up at

> > 7:30 and has only napped for half an hour today! I am going CRAZY!!!!

I am

> > the kind of person that needs 9 hours of sleep to function. Right now

at

> > this moment it is 9:15 and he is going strong. We have the lights

dimmed and

> > everything is quiet except him! I know that the lack of a need of

sleep is

> > common in CHARGERs but what about the parents????? I'd love to just

put him

> > in his crib to cry himself to sleep but crying = suctioning, which

just

> > wakes him up further! Is anyone else with a tiny CHARGER having these

" wild

> > child " issues? And those of you with older CHARGERs.... Any

advice?

> > Please????

> >

> > ~ <--------NEEDS SLEEP

> >

> > Mom of Jack (10mo. CHARGEr)

> >

> > Jack has a carepage! www.carepages.com Title: Jackspage

> >

> > __________________________________________________________

> > Sick sense of humor? Visit Yahoo! TV's

> > Comedy with an Edge to see what's on, when.

> > http://tv.yahoo.com/collections/222

> >

> >

[Guest guest]

Makes me remember getting up all hours of the night to watch tv

or playing in the bathroom sink, or climbing onto kitchen counters to

check out cupboards. He lost a roommate at Helen Keller because he

thought it was all right to play his game at 2 in the morning.

mom to (31)

>

> This isn't exactly on the subject of Jack (though I remember those

days

> vividly). is now 23 and has a house of her own 5 minutes

from us.

> When she spends the night at home almost every Saturday night, she

> almost always sleeps the entire night. Very recently, however,

she's been

> getting up, often for quite a while, with her houseparent type.

I'm

> beginning to think that this is a variation of the ole night party

we discuss

> so often here. It's really sort of funny to me, but not when I

remember that

> her very kind and capable care giver is seriously considering the

need to

> increase her sleep med. I swear, it doesn't seem to matter whether

our

> kids are 23 or 10 months! They just wanna have fun??? Martha

>

[Guest guest]

Jack seems to be on ths sleep cycle where he will stay up until 10:30-11:30 and

wake up around 7:30 for 4 days in a row. Then on the fifth nght he'll go to

sleep around 8:30 or 9. Then the cycle will start over again. It is hard

because Jack sees best in dim light. Also, even the softest lullaby gets him

excited and he starts kicking and squealing. He just loves music! I just think

I am in for it. Thanks for all of your advice!

~

Mom of Jack (10mo. CHARGEr)

Jack has a carepage! www.carepages.com Title: Jackspage

Re: Sleep

Jillyan is now 6 -- For the first 4 1/2 years I didn't know what a

good night's sleep was (and I was working full time on top of that).

She had her second heart surgery in Aug '06 and after that she slept

through the night -- always up early -- but at least I had sleep with

no interruption. Then in October '06 she all of sudden started

waking up in the middle of the night and she was really fussy -- also

started throwing these tantrums (or so I thought) where she would

just scream and press above her belly button with ther fingers. Add

to that burping frequently and finally when she got up one day really

late after being up during the night she got sick to her stomach and

it was all bile.

After this we figured out what it was. She had developed severe acid

reflux because once the heart surgery happened she began eating more

and more complex foods -- and began to love spicy food. Put her on

liquid Zantac -- and now we have sleep again. Always a guessing game!

Huggins

Mom to Jillyan (Charge) and Hailey

>

> OK, Jack is 10 months and a couple hours old. He went to bed last

night at about 9, woke up at 11, played in his crib until midnight,

got upset and needed a breathing treatment and then was up until

about 1. Then woke up at 7:30 and has only napped for half an hour

today! I am going CRAZY!!!! I am the kind of person that needs 9

hours of sleep to function. Right now at this moment it is 9:15 and

he is going strong. We have the lights dimmed and everything is

quiet except him! I know that the lack of a need of sleep is common

in CHARGERs but what about the parents????? I'd love to just put him

in his crib to cry himself to sleep but crying = suctioning, which

just wakes him up further! Is anyone else with a tiny CHARGER having

these " wild child " issues? And those of you with older CHARGERs....

Any advice? Please????

>

> ~ <--------NEEDS SLEEP

>

> Mom of Jack (10mo. CHARGEr)

>

> Jack has a carepage! www.carepages. com Title: Jackspage

>

>

>

>

____________ _________ _________ _________ _________ _________ _

____________ __

> Sick sense of humor? Visit Yahoo! TV's

> Comedy with an Edge to see what's on, when.

> http://tv.yahoo. com/collections/ 222

>

>

[Guest guest]

Martha,

I have been off list for a long time and am now able to pop on every

now and then.

I am so glad to hear that now has a home of her own so close to

you! Last I heard it was the struggles with the group home.

>

>

>

>

>

>

> This isn't exactly on the subject of Jack (though I remember those days

> vividly). is now 23 and has a house of her own 5 minutes from us.

> When she spends the night at home almost every Saturday night, she

> almost always sleeps the entire night. Very recently, however, she's been

> getting up, often for quite a while, with her houseparent type. I'm

> beginning to think that this is a variation of the ole night party we

> discuss

> so often here. It's really sort of funny to me, but not when I remember

> that

> her very kind and capable care giver is seriously considering the need to

> increase her sleep med. I swear, it doesn't seem to matter whether our

> kids are 23 or 10 months! They just wanna have fun??? Martha

>

--

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 11 CHaRGE, Kayla 16, Tyler 19

and wife to Roy who makes all things possible in our lives.

[Guest guest]

The studies say that its the dep sleep phase that gets affected by fibro,

but remember a lot of the meds we take are also affect sleep so is it the cart

before

the horse or after it.

Re: medications

Ann, I take hydrocodone. Of course, some people take oxycodone which is

stronger. I am sure it would probably helpt the pain.

But let me say that the Lyrica kind of made me lightheaded for a few days. I

am lucky though, the side effects are not bad for me. I know it will make some

people dizzy beyond belief at first. It takes your body time to get use to it.

My wish is that everyone with fibro could take Lyrica.....if it helped them

like it does me. But then again, everyone is different when it comes to meds.

hugs,

Debra V.

anj3330 anj3330@...> wrote:

Hello,I am on Lyrica and have had some pretty bad dizzy spells, I am

going to my doctor tomorrow, I think I want to get off this medication

due to the dizziness and it is not taking any pain away. Could anyone

please tell me what other medications I can take so I can bring it up

to my doctor. I have a lot of pain and am thinking of asking him for

oxycodone, do you think this would help with the pain? Thank you all

for your responses and thank you for being here as I am new to this

disease.

Sincerely,

Ann

---------------------------------

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[Guest guest]

Most of the time, thanks to my bi-pap machine, I reach REM, but the

other night, I literally dreamt that I was laying in bed not

sleeping! Yet DH said I was like a little rock, never moved all night

(he was awake due to a caffeine overload). How strange is that? I

know I am reaching REM because I have been having dreams - in living

color......

Darlene

> I have heard that not

> > sleeping makes fibro symptoms worse. Is that true?

> >

> Absolutely true, specifically not reaching REM or rapid eye movement

> or deep sleep.

>

> Two important chemicals are released during REM:

>

> 1. Serotonin an important neurotransmitter, low levels are

responsible

> for the morning FibroFog and disorientation.

>

> 2. Human Growth Hormone, responsible for repair of damaged tissue.

> Low levels of HGH slows the repair or recovery of injury.

>

> People with Fibromyalgia typically have abnormal sleep patterns and

> have difficulty reaching deep sleep.

>

[Guest guest]

Woke up again around 5pm after sleeping off and on all day. Yes! quite

restorative. Don't

understand why the whole world seems prejudiced against people who sleep during

the

day. I am just fed-up with people who say, " well, if you sleep during the day

no wonder

you can't sleep at night " .

If I was up all night being an ambulance driver or a night shift on-call

surgeon, or a baker

providing the early rising sleep deprived commuters with fresh donuts; I bet

people would

be especialy NICE to me.

Peace

Cassandra