CPAP thanks!!

[Guest guest]

Hi folks,

It's been a while since I've posted, but something's come up that maybe

someone can shed light on....

Last month Jeff had a sleep study done, as he was experiencing severe

episodes of snoring, gagging, twitching, choking. He'd wake up in the

morning completely wiped out and unable to function. Anyway, you all

recommended a sleep study. Well, it came back inconclusive. He really

never got in to a good sleep, and for a short time that he did, the

technicial said she saw at least three episodes, and one appeared to be

central. But the report came back normal to inconclusive, and that he was

probably suffering from anxiety!

Well....episodes continued to get worse. Last week he was driving to his

other bookstore 120 miles away. He called me around 3:00. He was very

frightened and disoriented. He said that the last thing he remembered was

getting a coke in Sterling City (which is about 80 miles from his store),

and the next thing he remembered he was in the parking lot of the college,

waking up! His seat was down, as though he put it down to take a nap, but

he doesn't remember the drive from Sterling City to Big Spring. He lost 2

hours of time.

We decided to take matters in to our own hands and contacted a medical

supply place in town that has C-PAPS. The owner discussed Jeff's condition

with our doctor, and agreed to let Jeff rent the C-PAP to see if it would

help. We had to buy the tubing and mask. Anyway, he used it for the first

time on Friday, and for the first time in a few YEARS, he slept so quietly

and comfortably it almost made me cry. He's used it for four nights and

the difference is incredible! He's no longer exhausted and disoriented.

He still has other problems, swelling, OH, but what a difference in his

whole outlook. And I feel GREAT. I'm still sleeping lightly, but I'm

getting 4-5 hous at a stretch now. Even if the insurance doesn't pay, we

are ging to do whatever we have to in order to keep the unit. I think the

supplier will be willing to let us rent to own so we don't have to come up

with the entire fee all at once. But we are still fighting with the

insurance company.

I have three things to throw out at you guys...

1. Has anybody had any luck getting the CPAP approved by insurance if the

sleep study is inconclusive.

2. One side effect Jeff has had is that the mask has irritated his nose and

eyes so bad that he looks like a boxer who went 5 rounds with Muhammad Ali!

He slept with a spacer last night, but still had his eyes swollen shut

this morning

3. Since he started using the CPAP, his daytime choking and swallowing

problems have gotten worse. Is this a by product of the CPAP or just a

coincidental progression of the disease?

Any help/input would be appreciated.

Regards to Everyone,

Maciejewski

Digest Number 1482

[Guest guest]

Hi ,

Happy to hear that you both got some sleep. My husband has severe

sleep apnea and he has had several sleep studies done. I think you

should go back to your doctor and tell him the difference you have

seen using the rental unit and ask if they can repeat the study, or

since his symptoms have improved maybe he could write an order for

the c-pap. Also, I have seen people advertise them for sale under

medical equipment in the classified section. As for the mask, there

are several different kinds, we have tried three different ones

before finally getting one that works well. We also attached a

humidifier to our unit and that has helped a lot.

I have no idea why the day time symptoms would get worse with regards

to a C-Pap unit.

Hope you continue to sleep well.

Jan

> Hi folks,

>

> It's been a while since I've posted, but something's come up that

maybe

> someone can shed light on....

>

> Last month Jeff had a sleep study done, as he was experiencing

severe

> episodes of snoring, gagging, twitching, choking. He'd wake up in

the

> morning completely wiped out and unable to function. Anyway, you

all

> recommended a sleep study. Well, it came back inconclusive. He

really

> never got in to a good sleep, and for a short time that he did, the

> technicial said she saw at least three episodes, and one appeared

to be

> central. But the report came back normal to inconclusive, and that

he was

> probably suffering from anxiety!

>

> Well....episodes continued to get worse. Last week he was driving

to his

> other bookstore 120 miles away. He called me around 3:00. He was

very

> frightened and disoriented. He said that the last thing he

remembered was

> getting a coke in Sterling City (which is about 80 miles from his

store),

> and the next thing he remembered he was in the parking lot of the

college,

> waking up! His seat was down, as though he put it down to take a

nap, but

> he doesn't remember the drive from Sterling City to Big Spring. He

lost 2

> hours of time.

>

> We decided to take matters in to our own hands and contacted a

medical

> supply place in town that has C-PAPS. The owner discussed Jeff's

condition

> with our doctor, and agreed to let Jeff rent the C-PAP to see if it

would

> help. We had to buy the tubing and mask. Anyway, he used it for

the first

> time on Friday, and for the first time in a few YEARS, he slept so

quietly

> and comfortably it almost made me cry. He's used it for four

nights and

> the difference is incredible! He's no longer exhausted and

disoriented.

> He still has other problems, swelling, OH, but what a difference

in his

> whole outlook. And I feel GREAT. I'm still sleeping lightly, but

I'm

> getting 4-5 hous at a stretch now. Even if the insurance doesn't

pay, we

> are ging to do whatever we have to in order to keep the unit. I

think the

> supplier will be willing to let us rent to own so we don't have to

come up

> with the entire fee all at once. But we are still fighting with

the

> insurance company.

>

> I have three things to throw out at you guys...

>

> 1. Has anybody had any luck getting the CPAP approved by

insurance if the

> sleep study is inconclusive.

> 2. One side effect Jeff has had is that the mask has irritated

his nose and

> eyes so bad that he looks like a boxer who went 5 rounds with

Muhammad Ali!

> He slept with a spacer last night, but still had his eyes swollen

shut

> this morning

> 3. Since he started using the CPAP, his daytime choking and

swallowing

> problems have gotten worse. Is this a by product of the CPAP or

just a

> coincidental progression of the disease?

>

> Any help/input would be appreciated.

>

> Regards to Everyone,

> Maciejewski

> Digest Number 1482

[Guest guest]

,

It sounds promising. In relation to point 2, I

initially found it difficult to find the right amount

to tighten the face straps without heavily marking my

face by morning as well as some of the other problems

Jeff is having. What I now find after almost 12 months

of use is that even if it does not feel like the mask

is pressing on my face, as long as no air is leaking

out of the edges of the mask it is o.k. In terms of

what is happening to Jeff's eyes, does he adjust the

mask near the corner of his tear ducts to make sure no

air is leaking into his eyes as that might cause

problems. Also if he isn't using a CPAP with a

humidifier, that leaves your throat, nose etc, awfully

dry in the morning, whereas with the humidifier that

is not a problem.

By the way, the humidifier is basically a jug of water

that receives air from the device so that the air

circulates through the humidity. It then goes out of

the jug through the second connection into the hose

the person is wearing. Hope that makes sense.

In terms of the inconclusive sleep study, the way they

wrap you like a turkey and stick electrodes left right

and centre, I would defy anyone to exhibit normal

sleep patterns during the test. What's more if you can

sleep long enough with all that invasive CRAP on you

for a meaningful test, that is a minor miracle. The

fact they believe there may have been a central apnea

event, yet consider the test inconclusive seems to be

contradictory to me. The only option to get your

medical fund to pay would seem to be to have another

study perhaps at another centre if you can afford it.

Sorry I can't be any more helpful.

Finally, I still have some nights the CPAP annoys the

hell out of me and after 3-4 hours of tossing and

turning I give up for the night. But like Jeff, I have

had real improvements in reduction of daytime fatigue

and strongly recommend Jeff perserveres.

All the best.

Kind Regards

Sowter

--- Maciejewski katsmgt@...> wrote:

> Hi folks,

>

> It's been a while since I've posted, but something's

> come up that maybe

> someone can shed light on....

>

> Last month Jeff had a sleep study done, as he was

> experiencing severe

> episodes of snoring, gagging, twitching, choking.

> He'd wake up in the

> morning completely wiped out and unable to function.

> Anyway, you all

> recommended a sleep study. Well, it came back

> inconclusive. He really

> never got in to a good sleep, and for a short time

> that he did, the

> technicial said she saw at least three episodes, and

> one appeared to be

> central. But the report came back normal to

> inconclusive, and that he was

> probably suffering from anxiety!

>

> Well....episodes continued to get worse. Last week

> he was driving to his

> other bookstore 120 miles away. He called me around

> 3:00. He was very

> frightened and disoriented. He said that the last

> thing he remembered was

> getting a coke in Sterling City (which is about 80

> miles from his store),

> and the next thing he remembered he was in the

> parking lot of the college,

> waking up! His seat was down, as though he put it

> down to take a nap, but

> he doesn't remember the drive from Sterling City to

> Big Spring. He lost 2

> hours of time.

>

> We decided to take matters in to our own hands and

> contacted a medical

> supply place in town that has C-PAPS. The owner

> discussed Jeff's condition

> with our doctor, and agreed to let Jeff rent the

> C-PAP to see if it would

> help. We had to buy the tubing and mask. Anyway, he

> used it for the first

> time on Friday, and for the first time in a few

> YEARS, he slept so quietly

> and comfortably it almost made me cry. He's used it

> for four nights and

> the difference is incredible! He's no longer

> exhausted and disoriented.

> He still has other problems, swelling, OH, but what

> a difference in his

> whole outlook. And I feel GREAT. I'm still

> sleeping lightly, but I'm

> getting 4-5 hous at a stretch now. Even if the

> insurance doesn't pay, we

> are ging to do whatever we have to in order to keep

> the unit. I think the

> supplier will be willing to let us rent to own so we

> don't have to come up

> with the entire fee all at once. But we are still

> fighting with the

> insurance company.

>

> I have three things to throw out at you guys...

>

> 1. Has anybody had any luck getting the CPAP

> approved by insurance if the

> sleep study is inconclusive.

> 2. One side effect Jeff has had is that the mask has

> irritated his nose and

> eyes so bad that he looks like a boxer who went 5

> rounds with Muhammad Ali!

> He slept with a spacer last night, but still had

> his eyes swollen shut

> this morning

> 3. Since he started using the CPAP, his daytime

> choking and swallowing

> problems have gotten worse. Is this a by product of

> the CPAP or just a

> coincidental progression of the disease?

>

> Any help/input would be appreciated.

>

> Regards to Everyone,

> Maciejewski

> Digest Number 1482

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

,

This may be difficult, but it would probably be a good idea to see if

you can get another sleep study done. In terms of the mask, there

are many types available, so I'm sure it will be possible to find one

that fits Jeff better. Check our www.cpapman.com -- it's a good

directory of what's available. Rob uses the " Breeze " mask, which

goes over his head and has nasal pillows that fit into his nostrils.

There's no mask over the face, so no marks in the morning.

I'm not sure about the daytime stuff. Is Jeff using a heated

humidifier? If so, that may be contributing. I would say " check

with your doctor " but given your history on this, I guess that's

going to be difficult.

Carol & Rob

Lexington, MA

> Hi folks,

>

> It's been a while since I've posted, but something's come up that

maybe

> someone can shed light on....

>

> Last month Jeff had a sleep study done, as he was experiencing

severe

> episodes of snoring, gagging, twitching, choking. He'd wake up in

the

> morning completely wiped out and unable to function. Anyway, you

all

> recommended a sleep study. Well, it came back inconclusive. He

really

> never got in to a good sleep, and for a short time that he did, the

> technicial said she saw at least three episodes, and one appeared

to be

> central. But the report came back normal to inconclusive, and that

he was

> probably suffering from anxiety!

>

> Well....episodes continued to get worse. Last week he was driving

to his

> other bookstore 120 miles away. He called me around 3:00. He was

very

> frightened and disoriented. He said that the last thing he

remembered was

> getting a coke in Sterling City (which is about 80 miles from his

store),

> and the next thing he remembered he was in the parking lot of the

college,

> waking up! His seat was down, as though he put it down to take a

nap, but

> he doesn't remember the drive from Sterling City to Big Spring. He

lost 2

> hours of time.

>

> We decided to take matters in to our own hands and contacted a

medical

> supply place in town that has C-PAPS. The owner discussed Jeff's

condition

> with our doctor, and agreed to let Jeff rent the C-PAP to see if it

would

> help. We had to buy the tubing and mask. Anyway, he used it for

the first

> time on Friday, and for the first time in a few YEARS, he slept so

quietly

> and comfortably it almost made me cry. He's used it for four

nights and

> the difference is incredible! He's no longer exhausted and

disoriented.

> He still has other problems, swelling, OH, but what a difference

in his

> whole outlook. And I feel GREAT. I'm still sleeping lightly, but

I'm

> getting 4-5 hous at a stretch now. Even if the insurance doesn't

pay, we

> are ging to do whatever we have to in order to keep the unit. I

think the

> supplier will be willing to let us rent to own so we don't have to

come up

> with the entire fee all at once. But we are still fighting with

the

> insurance company.

>

> I have three things to throw out at you guys...

>

> 1. Has anybody had any luck getting the CPAP approved by

insurance if the

> sleep study is inconclusive.

> 2. One side effect Jeff has had is that the mask has irritated

his nose and

> eyes so bad that he looks like a boxer who went 5 rounds with

Muhammad Ali!

> He slept with a spacer last night, but still had his eyes swollen

shut

> this morning

> 3. Since he started using the CPAP, his daytime choking and

swallowing

> problems have gotten worse. Is this a by product of the CPAP or

just a

> coincidental progression of the disease?

>

> Any help/input would be appreciated.

>

> Regards to Everyone,

> Maciejewski

> Digest Number 1482

[Guest guest]

Greetings !

This will be the first of many comments from my own experience (remember

that... I am not a medical professional, so always be certain to discuss

with your doctors). Carol noted that Rob uses the Breeze setup with

nasal pillows.

I also use nasal pillows using the custom headgear from cpapman at

www.cpapman.com. I selected that because I have a fairly large hat size

(just wish there was something there to justify the size!). So, other

headgear tended to slip a LOT. I prefer nasal pillows to masks, because

they do not leave the ugly marks, and tend to stay seated better. By

the way, I REALLY like the customer service that cpapman provides! It

is nothing other than excellent. They provide significantly better

prices and service than local suppliers. They also KNOW the gear and

masks and nasal pillows. Over the phone the owner did a much better job

of sizing me than the local medical supplier. So, if money is an issue,

you may want to talk with them.

More to come in other emails...

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings ,

Let me see if I can give a shot at this.

> His seat was down, as though he put it down to take

> a nap, but he doesn't remember the drive from Sterling

> City to Big Spring. He lost 2 hours of time.

Lack of adequate sleep (for any reason) causes serious problems for the

individual. Short term memory can fail (sometimes altogether as in this

case).

Please remember: Governments around the world use sleep

deprivation to TORTURE people.

This is very important to remember. Poor sleep causes SERIOUS problems.

Not just fatigue. It can leave the individual with lasting serious

health problems. Poor memory is just one of those problems.

You also noted:

> He really never got in to a good sleep, and for a

> short time that he did, the technician said she saw

> at least three episodes, and one appeared to be

> central. But the report came back normal to

> inconclusive, and that he was probably suffering

> from anxiety!

SIGH! When in doubt, blame the patient. I am so SICK of this behavior.

Believe me, I see it all too often. I'm a stubborn cuss, so I tend to

call them on it. I simply ask if they are trained in psychiatry. If

not, I ask how they might possibly reach a conclusion such as this!! NO

doctor has the right to blame the patient.

I agree with others. Sleep in a sleep lab can be a joke. Try to find

another sleep lab if possible. Also ask for a home sleep study if

possible. I *never* sleep well for the first two or three nights when I

sleep in a new setting. This is I suspect a survival instinct. Here I

also disagree with doctors. We, as a species, survived because we are

conditioned to do certain things in certain situations. We don't think

about sleeping lightly in a new situation. But most of us do that

anyway.

You had the following questions:

> 1. Has anybody had any luck getting the CPAP approved

> by insurance if the sleep study is inconclusive.

Document, Document, Document! Write a note to your doctor describing

the impact of using the CPAP unit. Sent it by mail to both your doctor

and the insurance company. In the letter request another study,

specifically note you have heard that a home study might be an option.

Note that Jeff does not sleep well in new locations.

FORCE both the doctor and the insurance company to review their

decision. Nothing works better than success. And you clearly have

improved his sleep with the CPAP unit.

> 2. One side effect Jeff has had is that the mask has

> irritated his nose and eyes so bad that he looks

> like a boxer who went 5 rounds with Muhammad Ali!

>

> He slept with a spacer last night, but still had

> his eyes swollen shut this morning.

Okay, time to share a CPAP user's secret. " Tight is bad. Loose is

great! " If you over tighten the mask too much, it causes problems you

describe. The reflex is to tighten it to reduce leaks. But that only

increases the leaks. The masks operate just as a vehicle using air to

allow it to skim over the surface of water or ground. So, keep it as

loose as possible. It takes time to figure out what is right.

The swollen eyes problem indicate air leaking up onto the eyes. This is

one reason I switched to nasal pillows. Also, if your husband is

sensitive to latex, then the masks may not be a good choice. So, an

allergic reaction is not out of the question.

> 3. Since he started using the CPAP, his daytime choking

> and swallowing problems have gotten worse. Is this a

> by product of the CPAP or just a coincidental

> progression of the disease?

Two suggestions here. First of all the pressure of the CPAP can trigger

this type of reaction during the day. I had it for several weeks. But

my body did become accustomed to the changed situation. Second, due to

the CPAP machine and tubing the moisture content decreases. So, if you

have high moisture content in your house, it might not be necessary to

use a humidifier. I do not need one most of the time. But we have 70+

percent humidity all the time in this area. But if it is typically

lower than that, a humidifier is a must.

So, though the disease exaggerates the reaction to dry air throughout

the night, it is not a sudden progression. In fact, with better sleep,

Jeff should see a decrease in symptoms.

Remember: ANY thing that stresses the neurological system WILL increase

symptoms. Period.

Hope all that helps.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings and !

, you noted about Jeff's sleep study:

> The fact they believe there may have been a

> central apnea event, yet consider the test

> inconclusive seems to be contradictory to me.

Actually, it probably just indicates that Jeff did not get enough sleep

to show his movement through all the sleep phases. I also had a similar

sleep study.

I started to struggle with SEVERE insomnia at the start of my cerebellar

symptoms appearing. The doctor assumed I needed to enter the study

being sleep deprived. What a schmuck! I had to repeat to him THAT was

the problem. I simply could NOT sleep.

I forced another sleep study with another technician. The new

technician noted that I would suddenly and unexpectedly arouse form a

deep sleep level to a lighter sleep level. Out of his experience, he

switched to BiPAP (two levels of pressure ... Inhalation pressure is

higher than exhalation pressure). That seemed to do the trick.

The doctor shared with me the sleep study report, which CLEARLY showed

that I slept much better with BiPAP than CPAP.

But if CPAP works for Jeff, than stick with it. It is much cheaper.

Anyway, back to the point. Without enough sleep to measure, the doctors

can simply not draw a conclusion. So the report should have ONLY stated

that fact. As a result of insufficient data, the study is inconclusive.

It should have then recommended alternative approaches to gathering

data.

The study should and could not draw the conclusion that Jeff suffers

from anxiety. I can guarantee that NONE of the doctors had sufficient

training or data to draw that conclusion. Stand up against that type of

nonsense. When in doubt, blame the patient.

NO ONE should put up with that type of diagnosis, UNLESS the doctor is

trained as a psychiatrist AND obtained adequate information to reach

that diagnosis. Due to the complexity of MSA, we MUST not put up with a

diagnosis based on " Blame the patient " .

Jeff, you are right it seems contradictory. The sleep lab should only

imply insufficient data exists to draw a conclusion. The diagnosis of

anxiety seems quite inappropriate.

Hope that helps, .

Regards,

=jbf=

B. Fisher