Sleep Apnea

[Guest guest]

Turk,

Only a few times in the past did I have any dryness in my nose....little bitty blood drizzle. You can use a special humidifier to help with that if it is bad. Right now though since I am on 2 pills to get rid of the water from my Congestive Heart Failure I am getting really dried out.

Re: Sleep Apnea> > >> > >> > >> > > >> > > > I have Sleep Apnea too. Is it dangerous would you> > > recommend going to> > > > the> > > > sleep center, never even discussed it with anyone. Let me> > > know please> > > > thanks.> > >> > > wow, this is getting REAL interesting. I've read over and> > > over, over> > > the yrs., about how sleep apnea can> > > lead to major heart problems. Rich has it too. He alternates> > > between> > > extremely loud snoring, and the apnea.> > > Oddly, i sleep soundly when he's snoring loudly. But when he> > > stops> > > breathing, i wake up and become alert.> > > Last yr. when he was in the hospital(s) for a week, i kept> > > bringing up> > > the apnea thing. No one listened.> > > Sue> > >> > >> > >> > >> > >> > > Please visit the Zapper homepage at> > > http://www.ZapLife.org> > >> > >

[Guest guest]

Sue... same here w/my hubby's cardio... he's been a champion snorer

for yrs and jerks and has brief periods when he stops breathing ...

all the classic symptoms of apnea... told cardio this when he was in

hsp w/A-fib/CHF... she sees no connection even though I've been

reading of same online for years now... sometimes we just have to do

the research and take the articles to the docs so they can see it in

print

JES in NJ

God Bless America

> wow, this is getting REAL interesting. I've read over and over,

over

> the yrs., about how sleep apnea can

> lead to major heart problems. Rich has it too. He alternates between

> extremely loud snoring, and the apnea.

> Oddly, i sleep soundly when he's snoring loudly. But when he stops

> breathing, i wake up and become alert.

> Last yr. when he was in the hospital(s) for a week, i kept bringing

up

> the apnea thing. No one listened.

> Sue

[Guest guest]

Maybe this will help those who aren't familiar w/complications

from 'apnea...

http://aolsvc.illnesses.aol.com/DS00148/main.html

or ...

http://aolsvc.illnesses.aol.com/DS00148/complications.html

<<Complications

Sleep apnea is considered a serious medical condition because sudden

drops in blood oxygen levels that occur during apnea increase blood

pressure and strain the cardiovascular system. Almost half of all

people with sleep apnea develop high blood pressure (hypertension),

which raises the risk of stroke and heart failure. >>

so if apnea is allowed to go to the extent that it causes heart

failure I'd say the damage is done and if apnea was cured it wouldn't

eliviate the 'failure... but then I'm not a cardio so that's only my

guess... I think it's key to treat the apnea before it effects us in

other ways.

JES in NJ

God Bless America

It requires a lot of courage and a lot of patience as well,

to start with a wish and let it remain in your heart.

>

> I have a question, suppose apnea is causing the heart problem and

when you

> cure apnea does the heart problem go away?(you cant stop hoping you

> know!....) . TURK

>

>

[Guest guest]

Careful with the drying out Don't lose the electrolite and potasium and magnesium which was the cause of m last shock cause i had the flu.TURK

Re: Sleep Apnea> > >> > >> > >> > > >> > > > I have Sleep Apnea too. Is it dangerous would you> > > recommend going to> > > > the> > > > sleep center, never even discussed it with anyone. Let me> > > know please> > > > thanks.> > >> > > wow, this is getting REAL interesting. I've read over and> > > over, over> > > the yrs., about how sleep apnea can> > > lead to major heart problems. Rich has it too. He alternates> > > between> > > extremely loud snoring, and the apnea.> > > Oddly, i sleep soundly when he's snoring loudly. But when he> > > stops> > > breathing, i wake up and become alert.> > > Last yr. when he was in the hospital(s) for a week, i kept> > > bringing up> > > the apnea thing. No one listened.> > > Sue> > >> > >> > >> > >> > >> > > Please visit the Zapper homepage at> > > http://www.ZapLife.org> > >> > >

[Guest guest]

In a message dated 4/23/02 9:09:37 PM Pacific Daylight Time,

writes:

> is an atrocious sleeper. He has had tonsils and adenoids removed. I

> know lots of his hyperactivity issues and non-compliance issues are

> related.

> I believe that is why adderall helps him. Kind of like me with a cup of

> coffee. It gives him the energy that his body isn't getting but that makes

> come down real nasty.

> Anyway, were there any options other than C-pap and tonsils and adenoids

> being removed that they mentioned for treating apnea?

>

> Karyn

>

>

>

YIKES! You mean even tho he had those removed, the behaviors were still

present??? Did having surgery help AT ALL??? Dr. Capone seemed to think

that was the base of 's problems, with me describing how slept, or

didn't sleep!

CPap was not mentioned, there is NO WAY would keep that on at night!

[Guest guest]

nathan started out at 6 units of pressure too for about a year now he's been

on 11, the 6 wasnt hleping him much but it hleped to start out with less

pressure for natha to get use to it blowing We dont even have to use the ramp

anymore. shawna.

sleep apnea

<<He does have sleep apnea, RDI of 5.8. Can anyone tell me what this means?

He said it was more than they would want it to be. Also his oxygen levels

were reaching below 90 which they also do not want to see.>>

Hi, Everyone.......Dawn....I didn't get an RDI level for Gareth. Not even

sure what that is. G's machine is set at level 6 for flow.....maybe it's the

same. As for the O2 levels, Gareth's would drop to 85 or less for extended

periods of time......very low levels!!! Take

care, Everyone.

Margaret

[Guest guest]

In a message dated 5/18/02 10:43:07 AM Pacific Daylight Time,

writes:

> Do YOU think he has apnea? I thought Maddie did too (one time I counted

> up to 18 seconds---I'm sure I was counting fast, but still), but they ended

>

> up calling it disruptive sleep. I said OF COURSE it was disruptive!!!

> YOU

> trying sleeping like that!!!!!! I'm surprised the technician didn't tell

> you the O2 levels. I kept going in the test room and reading

> them....LOL

>

Yikes! Are you kidding? By the time we got to sleep, it was after

10:30, at midnight they came in and attached the finger probe thing, dh said

I was snoring....hahah..they should've monitored ME while they were at it! I

know 's got it, as when the tech came in to put the probe on, she said

" does he always snore like that??? Wow! " When they came in after

knocked it off, they said there were several times he'd stopped breathing but

I never thought to ask anything else, she said they would get the results

back to the doctor within 7-10 days.

Going to his pulmonologist on the 11th of June, and hopefully, the results

will be in by then, as I want her to know about it....she was the doctor who

saved from getting a trach when he was newborn, and dx'd. the

tracheomalacia....'s breathing was always noisy because of this, but

lately, the last two years, it has become noisy again. Capone said to check

it out, but he did say 's tonsils weren't abnormally large, but the

larynx, adenoids, may have to be checked.

We'll see......Donna, me and took a much needed nap this

afternoon.......first one we've taken together in a looooong time!

[Guest guest]

OK experts. I just got back from the ds clinic and found out that most of

's apnea is not obstructive rather central. (sleep study was done in 97

and at that time I was told it was because of his leaky mitral valve that was

soon repaired). I know the difference is that with central the body isn't

getting the message to breath rather than something causing physical

interference.

But, is the treatment that same? the dr. mentioned some drug that has been

used but said it might escalate behavior.

Any experience with central apnea experiences would be welcome.

Thanks in advance,

Karyn

[Guest guest]

-Hi Karyn, Andrdew has central sleep apnea, but alittle obstructive.

I have really struggled over this issue. s dr.s have had

different views on what to do, finally fought to get him a monitor,

the sleep monitor was very hard to use but the other one told me yes

his oxyegen levels were going low, under 85 sometimes, and this would

happen about 4 hrs. into sleep, they say it is mild though(5 times an

hour is what sleep study showed) so since he cannot tolerate the

mask yet, we are just sitting tight.(dont have the monitor any more)

My dad uses the cpap for his severe apnea and it really helps him!

this will be a goal for some day, I feel he would just pull it off.

Never heard of med.for apnea, but wonder what they mean by behaviors

escalating? What are you going to do? I know you dont want his

behaviors to escalate, me either, 's sensory issues have him so

so over stimulated. Karyn, I sure do know how you feel, they tell us

our kids have sleep apnea but the answers are so unclear to me! I

know Margarets Gareth wears cpap and a's , this is so good

and gives me hope for some day, some say it helps with central apnea

and some say only helps with obstuctive, so many different views on

this! Let me know what happens, Dawn , 5 (sorry not much help

from me, I am with you on this!)

-- In @y..., KVanRyzin@a... wrote:

> OK experts. I just got back from the ds clinic and found out that

most of

> 's apnea is not obstructive rather central. (sleep study was

done in 97

> and at that time I was told it was because of his leaky mitral

valve that was

> soon repaired). I know the difference is that with central the body

isn't

> getting the message to breath rather than something causing

physical

> interference.

> But, is the treatment that same? the dr. mentioned some drug that

has been

> used but said it might escalate behavior.

> Any experience with central apnea experiences would be welcome.

>

> Thanks in advance,

> Karyn

[Guest guest]

sorry, i wish i could hlep here but nathan's sleep

apnea is obstructive, haven t had any exposure to

central that i recall even with my skilled pateints i

visit and provide cares for. I am interested in seeing

what input you get from this post. shawna.

--- KVanRyzin@... wrote:

> OK experts. I just got back from the ds clinic and

> found out that most of

> 's apnea is not obstructive rather central.

> (sleep study was done in 97

> and at that time I was told it was because of his

> leaky mitral valve that was

> soon repaired). I know the difference is that with

> central the body isn't

> getting the message to breath rather than something

> causing physical

> interference.

> But, is the treatment that same? the dr. mentioned

> some drug that has been

> used but said it might escalate behavior.

> Any experience with central apnea experiences would

> be welcome.

>

> Thanks in advance,

> Karyn

>

>

[Guest guest]

The more common type in CFS you refer to is Central Sleep Apnea which is

caused by a brain malfunction and from what I've read is not very treatable.

> Marcia

Well, this is the type I have and I know at least one other cfs patient with

the same. Both of us are doing fine with a cpap machine. I have been told I

am NOT a candidate for surgery, as I do not have obstructions which can be

removed.

a

[Guest guest]

> Thanks for all the reports, Rich. I am too lazy or busy to look up the

>

> research on sleep apnea but I do recall reading something recently

> which

> suggests that sleep apnea has two aspects. One is people who are

> overweight,

> thick neck, or enlarged adnoids or tonsils. The other group can be

> skinny.

> Their problem is more of a central nervous system thing and is more

> commonly

> found in cfs patients. I'm not suggesting that neck size is not a

> factor,

> just that there can be a very different cause for sleep apnea. So all

> you

> skinnies out there, beware!!!!

> a

HI a,

I followed the sleep apnea lists awhile as sleep apnea alone has much

the same symptom list as CFS. The more typical condition for those

overweight (but not always) is obstructive sleep apnea, which is often

treated with good results with the cpap machine or a bipap machine. The

more common type in CFS you refer to is Central Sleep Apnea which is

caused by a brain malfunction and from what I've read is not very

treatable. In fact sometimes sleep meds that relax the trachea and other

parts can be contraindicated for those with either type sleep apnea

because it can relax the breathing even further. I know when I took

Ambien I used to wake up choking sometimes and finally figured out that

must be whats happening. I'd rather go without the sleep/relaxing meds

and keep breathing.

Marcia

[Guest guest]

by the way, for those that DO have obstructive sleep apnea. If it is not treated

can lead to serious heart problems. Also those are the people who 'die

peacefully in their sleep', and is treated

successfully with the cpap or bipap sleep machines. So if this is the case it

needs to be treated. Many notice a significant boost in energy from treating

it. The problem with CFS patients is they

just can't sleep in the conditions of a sleep study to diagnose much! And if it

shows central sleep apnea, litle can be done for that, altho sometimes cpap is

used for that too. I believe a

and Rich (?) on the list both use cpaps and could share much more about that.

Marcia

[Guest guest]

>And if it shows central sleep apnea, litle can be done for that, altho

sometimes cpap is used for that too.

Marcia,

nothing can be done if you haven't identified the CAUSE for the Central

Sleep Apneas. But in my case they are directly related to my infections and

treating them is resolving them (I nearly never have them unless I start a

new abx/tx which penetrates the BBB).

So, I can say I have eliminated them almost completely and they were

incredibly bad.

Nelly

[Guest guest]

Marcia,

I think I may have a mild case of obstructive sleep apnea, but by

keeping my weight down and/or sleeping on my side, I don't seem to

have problems with it. I've never used a cpap machine, but I know a

few people who just swear by them. I think most of them are guys

who are overweight and have obstructive sleep apnea.

Rich

I believe a

> and Rich (?) on the list both use cpaps and could share much more

about that.

>

> Marcia

[Guest guest]

> So, I can say I have eliminated them almost completely and they were

> incredibly bad.

>

> Nelly

>

Good for you Nelly, its heartening to even win one battle in our cfs war and

thats a symptom that can be dangerous, so glad to hear it is better! Thanks for

adding to our info our central sleep

apnea.

Marcia

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

In a message dated 1/7/04 6:29:44 PM Eastern Standard Time, Reguezrod@...

writes:

that thing after you get one home?

The only other alternative Dr. sais, was serious surgery. Removal of her

tonsils, and the " secondary tonsils " . Said it was very serious surgery,

danger

of bleeding to death, etc.

what in the world are " secondary tonsils " ? I tried to find it on google but

no luck - doesn't sound like any medical term I ever heard of.

- Becky

[Guest guest]

In a message dated 1/7/04 6:35:33 PM Eastern Standard Time,

KLDoll@... writes:

Probably means Adenoids

If so, then I don't understand the " big scare " about removing tonsils &

adnoids - it's pretty routine surgery. had some minor post-op problems

because she didn't want to drink & got dehydrated, but after I forced Tylenol

into

her (I did it orally but it can be done with a suppository as well) she was

OK. Most kids have no problems. I had mine out at age 6 and came home and ate

hot dogs (!)

Sleep apnea IS potentially very serious....

- Becky

[Guest guest]

Probably means Adenoids

Re: Sleep Apnea

In a message dated 1/7/04 6:29:44 PM Eastern Standard Time,

Reguezrod@...

writes:

that thing after you get one home?

The only other alternative Dr. sais, was serious surgery. Removal of

her

tonsils, and the " secondary tonsils " . Said it was very serious surgery,

danger

of bleeding to death, etc.

what in the world are " secondary tonsils " ? I tried to find it on google

but

no luck - doesn't sound like any medical term I ever heard of.

- Becky

[Guest guest]

I'm curious, Toni, what made you look into having the study done on Jasmine?

Was it her sleeping habits? still gets up once every night. I often

wondered about it but anytime I listen closely to his breathing I don't notice

that he stops....which I thought was one of the signs.

Jackie, Mom to 16ds, 13 and Bradley 9

[Guest guest]

I would most definitely get a second opinion. Is this Dr. just trying to cover

himself in the event something goes wrong? Something can go wrong in EVERY

surgery, no matter how minor. We had a " Family Physician " that was scared to

death to treat Noah, he basically said he didn't want to take on the

liability...like he was going to have all these mysterious illnesses that he was

unable to cope with! Geesh! We dumped him right away.

Noah had his tonsils out and it was no problem post op. it was the best thing

we could have done for his breathing at night, now he is as quiet and restful as

can be.

Karla in Texas-mom to Noah 8ds and 12

----- KLDoll@... writes:

Probably means Adenoids

If so, then I don't understand the " big scare " about removing tonsils &

adnoids - it's pretty routine surgery.

[Guest guest]

glad they were able to find the apnea and now you can remedy it. actually,

my sister (nda) did have to have her 2nd tonsils removed. she had her first

ones removed when she was young and just had the others removed when she was 45.

she kept getting sores on them. from what i understand, hey are down

further in the throat.

kerrie mom to ben 18ds and alex 15nda

[Guest guest]

To 's parents and others,

now 14 was to have sleep study for sleep apnea and at a place

who specializes in special needs children. took him and expected

them to explain what they were going to do to . The tech came in

a without a word proceeded to apply the leads to his legs, face, and

head. Every chance he got he ripped the leads off. This was done

several times. After getting annoyed she told that he would have

to hold him down until he went to sleep. Number one, is very

strong and when he gets belligerent there is nothing you can do with

him. This was a failed attempt and left very angry. The test did

not even get started. We wrote a scathing letter to the disabilities

clinic stating that they are not kid friendly and probably will have

messed up any chance of our getting a study done in the future. Still

angry.

Becky R

>

> Hi

>

> The doctor has read the results of 's sleep study and made the

> following recommendation:

>

> He has his tonsils and adenoids removed April 21. and I

> thought she would go with medication, a breathing machine, or a mask

> to wear at night but Dr. feels that surgery will be the best

> to alleviate 's apnea.

> Anyone else out there who has had kids with tonsils and adenoids

> removed for any reason?

>

> I mean he went through VSD repair at 15 months with flying colors so

> tonsils and adenoids shouldn't be a big worry but prayers are

> appreciated as struggles along with all of his diagnoses.

>

>

>

>

[Guest guest]

In a message dated 7/23/04 2:20:11 AM Central Daylight Time,

writes:

> Hey Guys!

>

> I read in a magazine this week that there is a company that has developed a

> Sleep shirt to test for Apnea and other sleep related problems. It is

> currently in use at hospitals & with the military. They are hoping to have

> it

> available for prescription sometime next year. What I found interesting is

> the shirt

> is wired with all the sensors to test the various things that are tested in

> a

> sleep study but the patient can be tested in the comfort of their own home.

>

> Which I'm afraid is the only way we'd get a true reading on Nick as I

> envision

> a nightmare if we would try a convention sleep study on him.

>

> Cari

>

this would be wonderful. Our sleep study was a night mare.

Karyn

[Guest guest]

Mercuria: What a great explanation of cellular repair during sleep. My husband

has sleep apnea and uses a CPAP machine. What a difference it made to his

quality of life and mine! Prior to getting diagnosed I was sleeping in the

other bedroom because he was waking so often in the night trying to get a breath

that he was keeping me awake. I was also having menopausal issues at the same

time and not sleeping well myself, waking every hour anyway with hot flashes.

Needless to say, before the CPAP hubby was falling asleep at work, acted like a

zombie due to lack of restorative sleep~the test showed he was waking 75 times

during that one night, and some people test this every hour. We all know how

important restorative sleep is for all of us, so figure out a way to make it

happen for you. Melatonin is wonderful for me, but not for others, so best

wishes for good sleep to all of you out there.

in La Selva Beach CA

Re: Re: Stress and cortisol, was: Introduction

On Feb 5, 2006, at 11:44 PM, rvankonynen wrote:

>

> Vicious circles and interactions are very real in CFS. For example,

> there's a guy named Harvey Moldovky up in Canada who studies sleep.

> A few years ago he did an experiment on healthy young men, in which

> he arranged to have them kept awake constantly for a few days

> straight. They developed pains that seemed a lot like

> fibromyalgia. So there's a horrible vicious circle. If you hurt

> too much, you can't sleep. If you don't sleep, you're going to hurt.

The way it was explained to me at the Stanford Sleep Clinic was this:

During the day, we sustain normal wear-and-tear on our muscles.

Toxins build up, microscopic tears form in the tissue, little bruises

happen, etc. Every night, during the deepest (sub-REM) phases of

sleep -- that's Stage III and Stage IV -- the body sends through the

cleanup and repair crews that move out the crud, fix up the tears and

bruises, and generally get make us as good as new and ready to tackle

it all again the next day.

When people are sleep deprived -- either because they stay awake, or

because their brain chemistry is off, or because they have

obstructive sleep apnea that prevents them from getting the 2-3 hours

of sub-REM sleep needed each night to do the job -- the crud stays in

the tissues, and the microtears and bruises don't get fixed. Just a

few days of this, as the Canadian study found, will bring on FM

symptoms.

This sets up the vicious cycle Rich describes: the pain makes for bad

sleep, which leads to ever-increasing deferred maintenance in the

cell and muscle tissue; which lead to more pain; which further

interferes with sleep. Dr. , the world's leading surgeon

in the field of apnea, told me he believes that poor sleep is a major

(if not THE major) factor in as many as 60% of all FM cases.

It was certainly true in my case. I have OSA. For years, it was so

bad that I was getting two to three *minutes* of sub-REM sleep per

night, creating constant and almost paralyzing FM. When it was

treated, my FM was perceptibly better within a week, mostly gone in

six weeks, and entirely gone within six months.

Sara

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.