Re: Peg - More information on sleep disorder issues.

[Guest guest]

Thank you for your reply . I feel that all three of my rare

diagnosis are connected, one leading to the other. But I haven't

found a doctor to agree. Most just don't want to have me as a

patient, so they will disagree with anything. However, when I get

online and start reading, I see the connection building in others as

well. With the immunity issues and endocrine issues mainly. But when

you look at the endocrine, so much is neuro.

I joined a couple of apnea forums in the past but because my apnea

isn't having to do with obstruction or snoring, most just offer

sympathy. I believe that in order to have any chance at curing the

central sleep apnea I'm going to have to find the cause and get rid

of it. That is why I'm here, but mostly because whenever I read the

posts, I just gut feeling connected with so many. I hope that I can

offer some insights to someone. If just to reconfirm what they

already know in their gut, but need to act upon.

Peg

>

> What do you do for central apnea? That sounds like maybe your

> heaviest problem. Have you been to sleepnet to see what people do

> for it there? Its a pretty good forum.

[Guest guest]

Are you sure theres no treatment for CSA? Over at Sleepnet they

definitely understand the differences between CSA and obstructive

apnea - but I sorta had the impression some of them had treatment

for CSA - maybe I'm mis-remembering. I also remember maybe(?)

something about CPAP causing OSA sufferers to experience CSA(?) but

I could be just totally making that up - its been soo long since I

read over there.

I agree that attacking infection is the main game - but if there is

a good band-aid treatment for CSA, its possible that the improved

sleep could help substantially in fighting pathogens, in addition to

improving day-to-day symptoms.

A good chunk of people who feel OSA is their sole serious illness

dont respond well to CPAP, and I think Matt has hypothesized that

they may have a systemic inflammatory disease, which makes alot of

sense. Especially since multiple informal web sources say that many

fibromyalgiacs or whatever develop CSA - and I think I may have a

formal published source for that somewhere.

<lanelle@h...> wrote in part:

>

> I joined a couple of apnea forums in the past but because my apnea

> isn't having to do with obstruction or snoring, most just offer

> sympathy. I believe that in order to have any chance at curing the

> central sleep apnea I'm going to have to find the cause and get

> rid of it.

> <usenethod@y...> wrote:

> >

> > What do you do for central apnea? That sounds like maybe your

> > heaviest problem. Have you been to sleepnet to see what people

do

> > for it there? Its a pretty good forum.

[Guest guest]

Hi, and the group,

For what it's worth, I developed a hypothesis for central sleep

apnea in CFS a while back. It goes like this:

Glutathione depletion (as a result of a combination of genetic

predisposition and elevated, longterm combined stress, leading to

longterm elevation in secretion of cortisol and adrenaline) in the

red, slow-twitch skeletal muscle cells allows peroxinitrite to

rise. Peroxynitrite puts partial blockades in the Krebs cycle and

the respiratory chain. One of the results of this is that the

carbon dioxide production of the cells is decreased. This leads to

lower CO2 partial pressure in the venous blood. This in turn causes

the pH to be less acid (because of the lower production of carbonic

acid by the enzyme carbonic anhydrase in the red cells), and the

combination of low CO2 and high pH causes the respiratory center in

the brain to decrease the rate and depth of breathing. During

sleep, when the metabolic rates go down even further, it completely

stops the breathing in an attempt to raise the CO2 level in the

blood. This constitutes central sleep apnea.

Rich

> > >

> > > What do you do for central apnea? That sounds like maybe your

> > > heaviest problem. Have you been to sleepnet to see what people

> do

> > > for it there? Its a pretty good forum.

[Guest guest]

> I agree that attacking infection is the main game - but if there

> is a good band-aid treatment for CSA, its possible that the

> improved sleep could help substantially in fighting pathogens,

> in addition to improving day-to-day symptoms.

Heck, I kinda regret using the word " band-aid, " since this might

really make a big difference, if such a treatment exists. Not

getting stages 3 + 4 sleep just aint good.

richvank@a... wrote:

> [hypothesis for CSA in CFS]

Aha, interesting, and I guess testable since it seems to predict an

average-or-lower venous CO2 concentration. (I think endocrinology

researchers use some kinda placed line to get blood samples from

sleeping people?)

I (think I correctly) understand that CO2 fuels respiratory drive...

do you think/know hypoxia can cause complete or partial awakening

even when CO2 remains low or middling?

I guess fundamental nervous dysfunction is also an attractive

hypothesis for CSA. The nervous system does seem likely to play a

fundamental role in OSA, since OSA is somewhat ameliorated by

serotonergics. Also because Cushings disease seems to cause it:

" In one controlled study, it was demonstrated that Cushing's

syndrome was associated with increased frequency of sleep apnea(60).

In that study, about 32% of patients with Cushing's syndrome were

diagnosed with at least mild sleep apnea, and about 18% had

significant sleep apnea (apnea/hypopnea index > 17.5 events per

hour). Interestingly, those patients with sleep apnea were not more

obese or different in any craniofacial features compared to those

patients without sleep apnea. "

http://endotext.com/adrenal/adrenal31/adrenalframe31.htm

[Guest guest]

Hi:

I also think that my upper airway resistance syndrome is caused by

something else than a physical obstruction.

I mainly had hypopneas instead of obstructive apneas in my last sleep

study.

Most doctors don't know the cause of sleep apnea when you don't fit

the profile of the typical person with obstructive sleep apnea.

I spent a lot of money on a CPAP machine that the sleep specialist

prescribed me; used it for like 6 months, changing pressures almost

every week and never saw any slight improvement with my fatigue.

I still wonder and puzzles me what happened on a June day of 2000 (I

guess that I'll remember that day for the rest of my life) when I woke

up like at about 4:00 AM feeling exhausted (as usual) and suddenly

fell asleep, and at 6:00 AM (yes ! I only slept 2 hours) I woke up

completely REFRESHED and FULL OF ENERGY. I couldn't beleive the amount

of energy that I had that day. I was kept asking myself what I had

done or not done the night before but never figured it out.

My theory is that in those 2 heavenly hours, my breathing went

smoothly and allowed me to reach the deepest sleep stage, which

completely made me a new person.

Wish I had days like that forever !!!

o

> >

> > What do you do for central apnea? That sounds like maybe your

> > heaviest problem. Have you been to sleepnet to see what people do

> > for it there? Its a pretty good forum.

[Guest guest]

o,

I know exactly what you mean about waking up feeling " anew " I too

have had that experience , maybe twice , since gettin gmy BiPap

machine. I am having several problems with it, but am diligent

whenever I fall asleep in bed. My problem and my doctor agreed is

that I need a machine in every room of the house including the

bathroom as I fall asleep everywhere. Did I mention that I even fell

asleep for hours standing at the refrigerator door open?

My mask doesn't fit right, it leaks, the salesman won't come back to

service my account. I cannot find another mask company close by. I

am also having humidity problems which I'm at risk for lung

infections, etc. Plus I tend to take the mask off in my sleep

somewhere in the night, I don't know when.

But a couple of times I have woken up saying to myself, " Ah-ha, so

this is what the rest of the world feels like " But even so, the

refreshed feeling only lasts a couple of hours before I am whistling

zzzzzzzzzzz's again.

My problem is compounded by the complete lack of making any cortisol

or ACTH. It is a layering thing. I am working on a post compliling

various central sleep apnea information.

thank you for your response

Peg

> > >

> > > What do you do for central apnea? That sounds like maybe your

> > > heaviest problem. Have you been to sleepnet to see what people

do

> > > for it there? Its a pretty good forum.

[Guest guest]

Dang it eric, I wrote you such a good reply and then all of a sudden

it was gone. Having severe head pain will have to come back later

Peg

you are right on the mark, more lateer

> > >

> > > What do you do for central apnea? That sounds like maybe your

> > > heaviest problem. Have you been to sleepnet to see what people

> do

> > > for it there? Its a pretty good forum.

[Guest guest]

Peggy:

I read in a website of a person who completely cured her sleep apnea

when she started treating her adrenals.

o

> > > >

> > > > What do you do for central apnea? That sounds like maybe your

> > > > heaviest problem. Have you been to sleepnet to see what people

> do

> > > > for it there? Its a pretty good forum.

[Guest guest]

Hi, .

You're right that the respiratory center in the brainstem normally

controls breathing rate and depth based on the level of CO2 and the

pH of the blood that it receives, " assuming " that if these are

properly controlled, the cells will be getting enough oxygen.

However, if this control causes the oxygen availability to drop too

much, the person will wake up and this system will be overridden.

This is what happens over and over in sleep apnea. I have

obstructive sleep apnea myself, and have had a CPAP machine for just

over one year now. It has literally been a lifesaver for me, since

I could very well have been killed in a traffic accident, the way I

was " blanking out " as I drove through stop signs! I'm not kidding.

Rich

> I (think I correctly) understand that CO2 fuels respiratory

drive...

> do you think/know hypoxia can cause complete or partial awakening

> even when CO2 remains low or middling?

>