Sleep Study

[Guest guest]

In a message dated 2/12/2000 9:39:43 PM Pacific Standard Time, tab@...

writes:

<< How do they see

phase shift? And what can be done about it?? It is so frustrating to be

tired and not sleep! And then it is hard to wake up as I am super relaxed

and have aches - if I do get up in this state, I cannot function at all. NO

one understands this, with exception of people here.

>>

Well, phase shifted just means you are regularly getting to bed at a

time that is significantly at odds with the people in the world (almost

everybody) who go to bed not too long after it gets dark and get up not too

long after it gets light. I have found melatonin and a light box (and

other supplements, see my other post) helpful in this regard, but they have

not been a total answer.

btw, if your doctor diagnoses you with seasonal affective disorder, many

insurance companies will reimburse at least partially for a light box. Light

boxes have come down in price some, and I now see them advertised for $200.

It *is* really a drag to be up all night, even if Nick at Nite did just

recently do a Tyler marathon!! This is what my life has come to,

I am excited about a Tyler marathon!!

[Guest guest]

From: " Scherffius " <cfids_ex@...>

Has anyone had a polysomnogram done? This is the full sleep study where you

stay overnight in a hospital or clinic and they wire you up with EEG, muscle

sensors, oxygen sensors, and whatnot. If so, what were your results?

[Patti:] I had one late last year. The result showed that I stop breathing

as soon as I get into a dream state, this causes my oxygen level to fall to

about 80%, then I have restless legs which pulls me out of sleep and then

the whole cycle continues. In 8 hours of sleep they figure I got less than

3 hours of actual sleep. My sleep apnea is NOT caused by snorring. Most

docs, because most of them are stupid idiots, don't realize that some people

can have sleep apnea without snoring. They said some of my apnea seemed to

be due to my trachea collapsing (aparently the muscles in the trachea can

" relax " ) and the rest of my apnea is what is called central apnea, which

means the proper signals from the brain that cause you to breathe are not

getting through. It also showed that I have severe phase shift - which

basically explains why I am sleepy all day and wide awake at night.

[Guest guest]

>From: " Skari, M " <SkariPM@...>

> It also showed that I have severe phase shift - which

>basically explains why I am sleepy all day and wide awake at night.

Patti:

Have you considered a light box to reset your circadian rythym? My sister

had a similar problem as you and she took a melatonin herbal formula. Took

about 2 weeks but she started sleeping at night and being awake during the

day. She is on this schedule for the most part. Her body keeps trying to

reverse again.

I thought about a light box to clear mental fog. Has anyone tried this?

Also, you asked about wish list for meds in Mexico. How about Piracetam and

hydrigine? These are expensive from off-shore pharmacies (England) but I'll

bet you can get it inexpensively in Mexico. ASSUMING you are interested in

these drugs. (I'm not usually into meds but needed something for the fog!)

Marty Z.

[Guest guest]

have you tried ambien?

steve

Inthepresent@... wrote:

> From: Inthepresent@...

>

> In a message dated 2/12/2000 9:39:43 PM Pacific Standard Time, tab@...

> writes:

>

> << How do they see

> phase shift? And what can be done about it?? It is so frustrating to be

> tired and not sleep! And then it is hard to wake up as I am super relaxed

> and have aches - if I do get up in this state, I cannot function at all. NO

> one understands this, with exception of people here.

> >>

> Well, phase shifted just means you are regularly getting to bed at a

> time that is significantly at odds with the people in the world (almost

> everybody) who go to bed not too long after it gets dark and get up not too

> long after it gets light. I have found melatonin and a light box (and

> other supplements, see my other post) helpful in this regard, but they have

> not been a total answer.

> btw, if your doctor diagnoses you with seasonal affective disorder, many

> insurance companies will reimburse at least partially for a light box. Light

> boxes have come down in price some, and I now see them advertised for $200.

> It *is* really a drag to be up all night, even if Nick at Nite did just

> recently do a Tyler marathon!! This is what my life has come to,

> I am excited about a Tyler marathon!!

>

> ---------------------------

[Guest guest]

From: Inthepresent@...

Well, phase shifted just means you are regularly getting to bed at a

time that is significantly at odds with the people in the world (almost

everybody) who go to bed not too long after it gets dark and get up not too

long after it gets light.

[Patti:] Its not quite that simple. People who are phase shifted CANNOT

sleep at " normal " times. It has to do with circadian rhythms being off. My

doc showed me lots of circadian factors, but the only one I remember is body

temp. You body temp has to drop (or was it rise?) in order to sleep and

phase shifted people cannot drop their temp at the " proper " time. Sometimes

this can be corrected with getting light on the eye first thing in the

morning and gradually shifting your sleeping patterns (like go to bed 1/2

hour earlier for a week, then another 1/2 hour earlier for a week, etc).

Something called " sleep hygiene " can be helpful also. My doc thinks that

some of this might be genetic. He said his wife is also severely phase

shifted. By using following all suggestions, she can get shifted to

" normal " sleep/wake times, so she can function at work etc, but he said as

soon as they go on vacation or something, she immediately (not even in a day

or two) jumps back into a phase shifted pattern. He said taking ambien and

jumping in bed at 10pm will not do it. It takes a lot of work to get off

phase shift (which I'm getting a *little* better at) and you can

immediately jump back to phase shift if you have any letdown in your

routine.

[Guest guest]

From: " C.Tab. " <tab@...>

>It also showed that I have severe phase shift - which

>basically explains why I am sleepy all day and wide awake at night.

This is my problem also, but not when I had my sleep study. How do they see

phase shift?

[Patti:] I don't know all the measures, but I know one is body temp (you

cannot get into deep sleep without the correct body temp) and when you get

stage 4 sleep. If you hang about in stage 1 & 2 for 5 hours before you get

deeper sleep - that's phase shifted.

And what can be done about it??

[Patti:] Following STRICT sleep " hygiene " (there are dozens of web sites on

this), getting light on the retina soon after waking. (I have been only

marginally successful with this)

It is so frustrating to be

tired and not sleep!

[Patti:] Before I got on ambien, when I went 6 months with an average of 7

hours of sleep per WEEK, I just couldn't understand how I chould be so

sleepy I just wanted to die, but I still couldn't sleep. After 6 months of

virtually no sleep, I " gave in " and took drugs (ambien).

And then it is hard to wake up as I am super relaxed

and have aches - if I do get up in this state, I cannot function at all. NO

one understands this, with exception of people here.

[Patti:] That's for sure! *IF* I don't get out of bed until my body says

its ready, I can actually get something done, If I try to force it, nothing

gets done - even in the evening.

[Guest guest]

I just wanted to add to the recent correspondence

about sleep problems/rhythm. My experience is that

after years of experimenting and discipline I can

sleep and awake to a schedule but my day, especially

mornings, is absolute hell.

My body temperature is very low in the morning and

higher at night. My " normal M.E. " rhythm is to feel

better as the day progresses often with an alert time

from 20:00 until 24:00.

If I follow this pattern I have a much better quality

" day " with more alertness, energy and improved mood

even if that means being awake at night.

If I impose an artificial rhythm in order to be able

to work a conventional day I am able to get to

sleep/wake up with effort but my day is awful. Groggy,

exhausted, dizzy and jet-lagged. This is regardless of

how much light I get or how long I can keep this up

for (months/years).

Yes, it can be done but at the expense of my

well-being and the sacrifice of any alertness or

" good " time at all.

Obviously this will not be the same for everyone.

Regards,

Annette

__________________________________________________

[Guest guest]

on 9/03/00 10:35 AM, at dlions@... wrote:

>

> Regarding your reply and question as to whether our son had a sleep

> study. We have tried to have a study done but our insurance has refused

> even though our dr., also wrote and requested this study. Additionally,

> our son's sleeping pattern is so inpredictable he will sometimes barely

> sleep at all for days at a time and so I do not know what would occur if

> he could not sleep at all for this study.

Bea,

It is for the very reasons you describe above (your son not sleeping hardly

for days at a time) that it is crucial to have a sleep study done. I

encourage you to do whatever you can to see that the insurance company pays

for the test. There are ways of making this happen. You'll just have to be

persistent. Appeal the insurer's decision.

Make it known to your physician that you strongly suspect sleep apnea, based

on your observations--that should qualify him for a insurance-covered sleep

study. and it may well be sleep apnea. It's very common in FM/CFS...up to

40% of men with the condition have sleep apnea.

I've been that way before, too. Not sleeping for days at a time on a

chronic basis. But I've had 3 sleep studies now. He must get over the fear

that he won't be able to fall asleep. It rarely happens. And they can

prescribe certain sleep meds (ambien or imovane) which will put him to sleep

without affecting the study results. Even if he doesn't sleep very much at

all, that will provide them with very important information--because it will

likely hint at why this is so.

IMO, do whatever you have to do to get him that sleep study.

Hud

[Guest guest]

My significant other had a sleep study done a couple of years ago. Its not

quite an overnight thing - think he had to report to sleep clinic by 8 PM and

was released around 4 AM. He was put into a highly monitored room which

recorded his breathing patterns, visually recorded his actions, recorded his

snoring patterns, etc - as well as the electrode things which monitored his

heartrate and his oxygen level. He was diagnosed with mild obstructive sleep

apnea. I KNEW he would be diagnosed with sleep apnea!!! He snored horribly,

would quit breathing, then gasp about three times a minute for air and shake

the whole bed!! I had started sleeping in spare bedroom just so I could

sleep. Had nagged at him for years to please go to sleep clinic. NOW...we

both get much needed sleep and he uses a CPAP machine at night and doesnt

even try to nap without it - he gets very good sleep and so do I!! Good luck!

[Guest guest]

Had a sleep study on myself a few months ago, Kerrie. It's no big deal.

WebMD has a lot of information on sleep studies.

http://www.WebMD.com/

Just type " sleep study " in the search box and all sorts of information comes

up.

Hugs,

granny

---

" Setting a good example for your children

takes all the fun out of middle age. "

-- Feather

http://www.bspyle.com/granny.html

sleep study

> they are going to schedule a sleep study for my son ben (16ds) as

> soon as his bronchitis is better. what i am asking is for any info

> anyone has on this. to be perfectly honest, i dont have a clue how

> they go about this other than the electrode thingeys they put on your

> head. any info would be appreciated!!

>

> thanks again, kerrie

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

Kerrie

My son has had 2 sleep studies just this year. It is not a big deal at

all. is 13, and did great. They put electrodes on his temples, ankle

area, had a microphone thing on the lower neck area taped on, and they had a

band on the arm and around the chest and stomach area. is one of the

few lucky people who drop off to sleep in 2 seconds flat no matter what time

at night, so he did not toss around at all, and slept fine-more than I can

say for myself. The set up they have here in good old South Dakota had a

computer in the room, and another outside that the person kept tabs on.

uses a NCPAP machine now for his sleep apnea, and has gotten

independent in putting it on at bedtime-now if I can get him to remember to

turn the light off before he gets hooked up so he is not sleeping with it

on(hard to walk across the room hooked to a hose!). If you are going to

plan on staying at the hospital, be prepared! Wear sweats, and be prepared

to be tired the next day! I just talked to before going to tell him

what they were going to do, and I think that always helps. Good luck on the

sleep study!

[Guest guest]

In a message dated 1/22/02 6:08:28 AM Pacific Standard Time,

writes:

>

> Hey Margaret,

> Maddie's had endosopies, tubes in her ears, MRI's, and a terrible

> hospital stay (jsut overnight, but they couldn't get an IV in and it was

> absolutely brutal), but believe it or not, the worst was the sleep

> study!!!!!! It was SO bad!!! She could not tolerate those wires on her

>

> head, and neither one of us slept more than 5 minutes. I told them

> afterwards I have no idea how they came up with their dx, since she never

> really slept!!! I came home the next day and cried, it was so awful!!!!

>

> It was sheer torture for her. AT least with blood work, it's over in a

> few

> minutes!!!! Hope the study shows good news Margaret!!!

> {{{{{{{{{hugs}}}}}}}]

> Donna

>

Donna,

Here I thought we were the only ones that had it so terrible for the sleep

study. was so stressed from all those wires and tactile issues that he

started gagging while they were hooking things up. No sleep for the whole

night.

We knew that there were some issues with his heart before we did the sleep

study so after all that terror they come back and tell us he is desatting

during sleep but they " think " it is due to the heart problem. Tell me, why

did we do a study if we knew there was a heart problem that may be the cause

and we were already scheduled to remedy that? Anyway, it hasn't improved

since the heart surgery but I'm not going through the study again since he

wouldn't accept the CPap for treatment anyway.

Karyn

[Guest guest]

In a message dated 2/21/02 11:07:39 AM Eastern Standard Time, deanlig@...

writes:

>

>

>

>

>

> I tried posting this once so forgive me if it comes up twice. I would

> love all your prayers to be with and I as he has his sleep

> study this Fri. night. If you have any ideas to make it easier for a

> four year old to go through this, let me know. I am prepared for a

> long night. Am bringing his pillow, and fan to drown out outside

> noises. thank you guys!! Dawn and

>

Absolute prayers and hugs headed your way Dawn!! Bring some of 's

favorite video tapes, books, toys, whatever. And let us know how it goes.

Donna

[Guest guest]

Bring his toys, his books, paper for him to draw,

etc. anything else that he likes to do.

--- deanlig <deanlig@...> wrote:

> I tried posting this once so forgive me if it comes

> up twice. I would

> love all your prayers to be with and I as he

> has his sleep

> study this Fri. night. If you have any ideas to make

> it easier for a

> four year old to go through this, let me know. I am

> prepared for a

> long night. Am bringing his pillow, and fan to drown

> out outside

> noises. thank you guys!! Dawn and

>

>

>

[Guest guest]

In a message dated 4/24/02 6:28:45 AM Pacific Daylight Time,

writes:

> laura when is seans' sleep study.... make sure you take sean to see the

> place and hear that loud machine before actually staying the n ight..

Oh brother, you're kidding? So long as doesn't have to have anything

over his nose or face, I think he'd do okay....he was wired up for his EEG

last year and actually fell asleep to a video they played for him! But, this

is ALL NIGHT, so I'm wondering.....did you sleep in same room with her?

[Guest guest]

For some people, apnea is worse when sleeping on the back (it allows the

tongue to relax and worsens the apnea). Try to see if the child

snores/wakens more if he's on his back. If so, you can sew a pocket on the

back of a t-shirt (or wear a pocket t-shirt backwards) and sew a tennis ball

into the pocket. This will keep him from sleeping on his back and hopefully

lessen the apnea. Bev, mom to Craig, 16, Magenis Syndrome

[Guest guest]

In a message dated 4/24/02 4:10:48 PM Eastern Daylight Time, Ltb3105@...

writes:

> Oh brother, you're kidding? So long as doesn't have to have anything

> over his nose or face, I think he'd do okay....he was wired up for his EEG

> last year and actually fell asleep to a video they played for him! But,

> this

> is ALL NIGHT, so I'm wondering.....did you sleep in same room with her?

>

>

>

Yea, . INSIST!!!! I wouldn't leave him...AT ALL!!!!!!! You can

bring any tapes (at CHOP they had a tv with VCR) you want, anything from home

that works...whatever. Books, toys, stuffed animals....bring what makes

comfortable.

DOnna

[Guest guest]

my little nathan guy is a stomach sleeper, but that ball thing is a great idea,

never heard of that, it would get hin to stay on his side more, put one on the

chest and maybe the back, he snores like an elephant or maybe a bear, (never

heard an elephant snore,lol) no matter what of the 1001 directions he chooses to

sleep in. shawna.

Re: sleep study

For some people, apnea is worse when sleeping on the back (it allows the

tongue to relax and worsens the apnea). Try to see if the child

snores/wakens more if he's on his back. If so, you can sew a pocket on the

back of a t-shirt (or wear a pocket t-shirt backwards) and sew a tennis ball

into the pocket. This will keep him from sleeping on his back and hopefully

lessen the apnea. Bev, mom to Craig, 16, Magenis Syndrome

[Guest guest]

In a message dated 4/24/02 5:55:39 PM Pacific Daylight Time,

writes:

> , they let me decide for them to put wires on before or after sleep, I wish

> I would have had them do it before cause after he fell asleep when they put

> wires on he woke up and was even more confused and upset than he would have

> been. He just wore himself out crying and they did get a good study. (I

> will write tommorow cause I should know something) But they did let me

> sleep with him.

Dawn, thanks for the info! Well, I will say during his EEG, let the

tech put the cap on and attach the wires, so maybe I will let them do that

BEFORE he falls asleep...the problem is the waking up and changing positions

during the night, sometimes 's head are where his feet should be, and

vice versa....sometimes, he sits upright, sometimes he gets down on the floor

and sleeps!

This will be something.

[Guest guest]

In a message dated 5/18/02 12:43:08 PM Central Daylight Time,

writes:

> and I still say that the so-called *non-invasive* sleep

> study was the absolute hardest on her and me!!!

> {{{{{{{{{{{{{hugs}}}}}}}}}}}}}

> BTW, I didn't sleep a wink that night----hope you catch some zzzz's today

> Donna

>

> OUrs was up there in torture terms. I had PMS and was not rested going in.

Then to top it off they do it while we know his heart isn't functioning right

so when he does desat they tell me it may be due to his heart problem. Soooo,

maybe the heart surgery fixed it or maybe not buy I'm certainly not doing

another sleep study. We did get a pulse ox for a night here at home and he

wouldn't even tolerate that. Two years ago we were in the hosp. for an

extended time and the pulse ox was on for awhile with no desats so I'm not

too worried.

Karyn

[Guest guest]

In a message dated 5/25/02 4:38:24 PM Pacific Daylight Time,

writes:

> ,

> Did they say Inconclusive, or did they say no apnea? If they said

> inconclusive, you may have to go through this again.

No, *I* assumed inconclusive, because they said the O2 levels were normal,

although the finger probe was only on about 3 1/2 hrs. as opposed to that,

plus all the other stuff *couldn't* wear, it should ALL be on for about

6 hrs.!

No, we're not doing this again! His pulmonologist's appt. is June 11 and I

will inform her of what we did, plus have her check 's trachea again,

probably have another swallow study done. 's breathing during the DAY

sounds as though he's snoring! I know she'll find something without doing

another sleep study, although I don't know HOW it could be done again, unless

they knock him out all night in a hospital with nurses monitoring him.....I

won't knock him out again, unless he's having dental work and the biopsy done

as well.

[Guest guest]

In a message dated 5/25/02 4:38:24 PM Pacific Daylight Time,

writes:

> I am waiting to get a monitor or at least try the cpap or the other mask

> thing. They say since he may not tolerate the cpap, they may not give me

> the monitor and I dont believe I can except this, I will try to urge the

> Dr. to help me on this. ( would not be helped by the surgery cause

> his is mostly caused by central sleep apnea, not obstuctive,

Dawn, I KNOW wouldn't tolerate the cpap! His apnea (at least to me)

seems to be obstructive, since he had that tracheomalacia at birth and is

breathing (snoring!) during the day...he cannot sleep or be awake quietly,

you can hear him wherever he goes!

No, they didn't tell me WHAT the levels were, only that they were in the

normal range, whatever that is.....I was at work and very distracted when the

doctor called me, I guess I will call on Tuesday and find out what they

really were.

Thanks, Dawn,

[Guest guest]

In a message dated 5/26/02 7:50:35 PM Central Daylight Time,

writes:

> although I don't know HOW it could be done again, unless

> they knock him out all night in a hospital with nurses monitoring him.....I

>

> won't knock him out again, unless he's having dental work and the biopsy

> done

> as well.

>

>

>

,

Our hosp. said a sedated sleep study is worthless for them. They aren't

getting anything else from so I guess we have nothing. I know what you

mean about how difficult it is.

Karyn

[Guest guest]

In a message dated 5/28/02 12:17:28 AM Pacific Daylight Time,

writes:

> Our hosp. said a sedated sleep study is worthless for them.

Karyn, did they state why it would be worthless? If the child is sedated,

would that not be a " real " sleep?

[Guest guest]

Our hospital has said the same thing. I believe it's b/c the sedation medication

(general anesthesia) interferes with brain wave activity. Gabby hasn't had a

sleep study done. This was in reference to an EEG but I'm guessing that it could

be the same reason (?) Gabby never was able to get that EEG done. Strange

environment, change in schedule just wouldn't allow her to fall asleep no matter

how sleep deprived she was... or how much Chloryl Hydrate they put into her.

Sandy

mom to Gabby (6, ds-asd) and Adam (2)

Re: Sleep Study

In a message dated 5/28/02 12:17:28 AM Pacific Daylight Time,

writes:

> Our hosp. said a sedated sleep study is worthless for them.

Karyn, did they state why it would be worthless? If the child is sedated,

would that not be a " real " sleep?