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Greetings Bill!

I wish I had answers for this. Going from wake to sleep often triggers

interrupted breathing, anyway. Even in healthy people. With this type of

disorder it can be amplified. I understand your frustrations and fears.

Some days I dread sleep. Almost always when my symptoms are worse, as this

problem seems to be magnified then. As a result, my sleep patterns are very

poor, as I often wait until VERY tired before sleeping. I would rather

sleep soundly for a short period of time, than put up with that wake-sleep

barrier !!!! As the symptoms decrease, so do my problems with sleep. I

wish my sleep was more regular, but I do what seems to help.

Even eight years ago my sleep study found events of central sleep apnea. I

suspect it is more prominent now. Unless it becomes very troubling, I will

not have further sleep studies.

But, a question: Are you using a BiPAP unit? I had serious problems with

the constant pressure of CPAP. Switching to BiPAP decreased the number of

arousals (moving from deeper to lighter sleep). It was quite clear from

graphs from the sleep study. Do you have any obstructive sleep apnea? Did

you go see a Board Certified sleep specialist. One with a neurology

background would probably be preferrable in this case. Are you trying any

medications? There are several that seem to help with improving the

breathing drive. For example, from my reading it appears medications used

to treat altitude sickness can also help someone with Cheyne Stokes. No

guarantees. But a thought.

Just some thoughts and ideas. Hope they help.

Regards,

=jbf=

B. Fisher

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Greetings Bill!

I wish I had answers for this. Going from wake to sleep often triggers

interrupted breathing, anyway. Even in healthy people. With this type of

disorder it can be amplified. I understand your frustrations and fears.

Some days I dread sleep. Almost always when my symptoms are worse, as this

problem seems to be magnified then. As a result, my sleep patterns are very

poor, as I often wait until VERY tired before sleeping. I would rather

sleep soundly for a short period of time, than put up with that wake-sleep

barrier !!!! As the symptoms decrease, so do my problems with sleep. I

wish my sleep was more regular, but I do what seems to help.

Even eight years ago my sleep study found events of central sleep apnea. I

suspect it is more prominent now. Unless it becomes very troubling, I will

not have further sleep studies.

But, a question: Are you using a BiPAP unit? I had serious problems with

the constant pressure of CPAP. Switching to BiPAP decreased the number of

arousals (moving from deeper to lighter sleep). It was quite clear from

graphs from the sleep study. Do you have any obstructive sleep apnea? Did

you go see a Board Certified sleep specialist. One with a neurology

background would probably be preferrable in this case. Are you trying any

medications? There are several that seem to help with improving the

breathing drive. For example, from my reading it appears medications used

to treat altitude sickness can also help someone with Cheyne Stokes. No

guarantees. But a thought.

Just some thoughts and ideas. Hope they help.

Regards,

=jbf=

B. Fisher

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Dear Bill,

Cheyne-stokes respiration is a breathing pattern characterized by waxing and

waning of the depth of respirations, that is deep breathing then slight to

no breathing for short periods. This pattern continues from 45 sec. to 3

minuites at times. It is usually associated with the patient that has a

disease of the repiratory center, heart, or brain.

I wonder if your problem is more like sleep apnea, where you stop breathing

at night related to the toungue falling to the back of your throat. This is

fairly common occurance when a person is lying on their back and in a deep

sleep, or heavily sedated. (ALOT of people do this)

My suggestion would be to lie on your side and elevate the head of the bed

at a 40 to 60 degree angle. The rational here is that you encourage your

toungue to stay in a forward type position.

You can get a sleep apnea monitor that will alarm when you stop breathing

and wake you up. This machine is utilized on newborn infants that have

immature lungs and stop breathing, the alarm alerts the caretaker that the

infant needs to be stimulated to breath, but it can be used on the adult

patient as well.

Another piece of equipment that is available is a C PAP machine. This stands

for continuous positive air pressure. This machine forces air into your

lungs at a regular rate and assures proper oxygenation during the night.

This machine takes some getting used to, and is worn over the face like a

mask, but can provide the user with better breathing patterns.

Some people that are overweight, (me included) and simply loosing weight can

allow less bulk in the neck and chest area & improve their respiratory

effort.

There is also a surgical procedure in which they could remove part of your

palate (roof of your mouth and uvula) which would allow a larger opening for

air to pass.

Wearing oxygen at night may also be helpful, if you are concerned you are

not getting enough oxygen.

I hope this information has helped.

Cindi

>

>Reply-To: shydrager

>To: " shydrager " <shydrager >

>Subject: Cheyne Stokes

>Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne

>Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their

>last

>legs get this problem.

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from

>under

>me, literally, by the time I get enough exercise.

>I hope somebody can supply some answers, even if they are not good ones.

>Bill Pilgrim

>

>

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Dear Bill,

Cheyne-stokes respiration is a breathing pattern characterized by waxing and

waning of the depth of respirations, that is deep breathing then slight to

no breathing for short periods. This pattern continues from 45 sec. to 3

minuites at times. It is usually associated with the patient that has a

disease of the repiratory center, heart, or brain.

I wonder if your problem is more like sleep apnea, where you stop breathing

at night related to the toungue falling to the back of your throat. This is

fairly common occurance when a person is lying on their back and in a deep

sleep, or heavily sedated. (ALOT of people do this)

My suggestion would be to lie on your side and elevate the head of the bed

at a 40 to 60 degree angle. The rational here is that you encourage your

toungue to stay in a forward type position.

You can get a sleep apnea monitor that will alarm when you stop breathing

and wake you up. This machine is utilized on newborn infants that have

immature lungs and stop breathing, the alarm alerts the caretaker that the

infant needs to be stimulated to breath, but it can be used on the adult

patient as well.

Another piece of equipment that is available is a C PAP machine. This stands

for continuous positive air pressure. This machine forces air into your

lungs at a regular rate and assures proper oxygenation during the night.

This machine takes some getting used to, and is worn over the face like a

mask, but can provide the user with better breathing patterns.

Some people that are overweight, (me included) and simply loosing weight can

allow less bulk in the neck and chest area & improve their respiratory

effort.

There is also a surgical procedure in which they could remove part of your

palate (roof of your mouth and uvula) which would allow a larger opening for

air to pass.

Wearing oxygen at night may also be helpful, if you are concerned you are

not getting enough oxygen.

I hope this information has helped.

Cindi

>

>Reply-To: shydrager

>To: " shydrager " <shydrager >

>Subject: Cheyne Stokes

>Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne

>Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their

>last

>legs get this problem.

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from

>under

>me, literally, by the time I get enough exercise.

>I hope somebody can supply some answers, even if they are not good ones.

>Bill Pilgrim

>

>

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,

I am not up on this problem and would defer to Fisher's note or Pam

and Vera's websites. is much more up on sleep/breathing problems

and Pam and Vera found the websites before I got the message :-) Vera

has learned a lot about web surfing ;-) - Vera which search engine do

you use? I think Pam uses Goggle and I use Yahoo.

YAHOOOOooooo!

Hugs, Bill Werre

==============================================================

Sennewald wrote:

>Bill:

>

>Could you tell me what this pattern is as my wife has been having

>respiratory problems recently.

>

>Message: 18

> Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Subject: Cheyne Stokes

>

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their last

>legs get this problem.

>

>

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>

>

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from under

>me, literally, by the time I get enough exercise.

>

>

>I hope somebody can supply some answers, even if they are not good ones.

>

>

>Bill Pilgrim

>

>

>

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,

I am not up on this problem and would defer to Fisher's note or Pam

and Vera's websites. is much more up on sleep/breathing problems

and Pam and Vera found the websites before I got the message :-) Vera

has learned a lot about web surfing ;-) - Vera which search engine do

you use? I think Pam uses Goggle and I use Yahoo.

YAHOOOOooooo!

Hugs, Bill Werre

==============================================================

Sennewald wrote:

>Bill:

>

>Could you tell me what this pattern is as my wife has been having

>respiratory problems recently.

>

>Message: 18

> Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Subject: Cheyne Stokes

>

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their last

>legs get this problem.

>

>

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>

>

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from under

>me, literally, by the time I get enough exercise.

>

>

>I hope somebody can supply some answers, even if they are not good ones.

>

>

>Bill Pilgrim

>

>

>

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Greetings ,

The Cheyne Stokes breathing pattern is a repetitive pattern of shallower and

shallower breathing until breathing ceases. This is followed by an arousal

as the brain notices the decrease in oxygen. The person then gasps in air,

and the pattern continues. It is often a symptom of late term congestive

heart failure or late stages of dying. Hence the reaction Bill receives.

Fortunately, it may just indicate poor autonomic response, indicating the

need for a sleep study at a certified clinic. Be certain to discuss the

case with a Board Certified specialist, who is familiar with autonomic and

central nervous system failure problems. Also be certain to discuss this

with the tech who monitors the sleep study during they night. They will

then keep an eye out for that pattern.

However, more common sleep problems during the night for MSA patients are

sleep apnea. Lots of snoring, then no breathing, followed by a gasping for

air. This is obstructive sleep apnea. Again a sleep study would be in

order if you notice that with your wife. Much more rarely, a patient simply

stops breathing. This is central sleep apnea. It is fortunately very rare.

The next course of action. Yup you guessed it. Talk with her doctor and

see about a referral.

Regards,

=jbf=

B. Fisher

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Share on other sites

Greetings ,

The Cheyne Stokes breathing pattern is a repetitive pattern of shallower and

shallower breathing until breathing ceases. This is followed by an arousal

as the brain notices the decrease in oxygen. The person then gasps in air,

and the pattern continues. It is often a symptom of late term congestive

heart failure or late stages of dying. Hence the reaction Bill receives.

Fortunately, it may just indicate poor autonomic response, indicating the

need for a sleep study at a certified clinic. Be certain to discuss the

case with a Board Certified specialist, who is familiar with autonomic and

central nervous system failure problems. Also be certain to discuss this

with the tech who monitors the sleep study during they night. They will

then keep an eye out for that pattern.

However, more common sleep problems during the night for MSA patients are

sleep apnea. Lots of snoring, then no breathing, followed by a gasping for

air. This is obstructive sleep apnea. Again a sleep study would be in

order if you notice that with your wife. Much more rarely, a patient simply

stops breathing. This is central sleep apnea. It is fortunately very rare.

The next course of action. Yup you guessed it. Talk with her doctor and

see about a referral.

Regards,

=jbf=

B. Fisher

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Share on other sites

Dear Bill,

Cheyne-stokes respiration is a breathing pattern characterized by waxing and

waning of the depth of respirations, that is deep breathing then slight to

no breathing for short periods. This pattern continues from 45 sec. to 3

minuites at times. It is usually associated with the patient that has a

disease of the repiratory center, heart, or brain.

I wonder if your problem is more like sleep apnea, where you stop breathing

at night related to the toungue falling to the back of your throat. This is

fairly common occurance when a person is lying on their back and in a deep

sleep, or heavily sedated. (ALOT of people do this)

My suggestion would be to lie on your side and elevate the head of the bed

at a 40 to 60 degree angle. The rational here is that you encourage your

toungue to stay in a forward type position.

You can get a sleep apnea monitor that will alarm when you stop breathing

and wake you up. This machine is utilized on newborn infants that have

immature lungs and stop breathing, the alarm alerts the caretaker that the

infant needs to be stimulated to breath, but it can be used on the adult

patient as well.

Another piece of equipment that is available is a C PAP machine. This stands

for continuous positive air pressure. This machine forces air into your

lungs at a regular rate and assures proper oxygenation during the night.

This machine takes some getting used to, and is worn over the face like a

mask, but can provide the user with better breathing patterns.

Some people that are overweight, (me included) and simply loosing weight can

allow less bulk in the neck and chest area & improve their respiratory

effort.

There is also a surgical procedure in which they could remove part of your

palate (roof of your mouth and uvula) which would allow a larger opening for

air to pass.

Wearing oxygen at night may also be helpful, if you are concerned you are

not getting enough oxygen.

I hope this information has helped.

Cindi

>

>Reply-To: shydrager

>To: " shydrager " <shydrager >

>Subject: Cheyne Stokes

>Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne

>Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their

>last

>legs get this problem.

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from

>under

>me, literally, by the time I get enough exercise.

>I hope somebody can supply some answers, even if they are not good ones.

>Bill Pilgrim

>

>

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Share on other sites

Dear Bill,

Cheyne-stokes respiration is a breathing pattern characterized by waxing and

waning of the depth of respirations, that is deep breathing then slight to

no breathing for short periods. This pattern continues from 45 sec. to 3

minuites at times. It is usually associated with the patient that has a

disease of the repiratory center, heart, or brain.

I wonder if your problem is more like sleep apnea, where you stop breathing

at night related to the toungue falling to the back of your throat. This is

fairly common occurance when a person is lying on their back and in a deep

sleep, or heavily sedated. (ALOT of people do this)

My suggestion would be to lie on your side and elevate the head of the bed

at a 40 to 60 degree angle. The rational here is that you encourage your

toungue to stay in a forward type position.

You can get a sleep apnea monitor that will alarm when you stop breathing

and wake you up. This machine is utilized on newborn infants that have

immature lungs and stop breathing, the alarm alerts the caretaker that the

infant needs to be stimulated to breath, but it can be used on the adult

patient as well.

Another piece of equipment that is available is a C PAP machine. This stands

for continuous positive air pressure. This machine forces air into your

lungs at a regular rate and assures proper oxygenation during the night.

This machine takes some getting used to, and is worn over the face like a

mask, but can provide the user with better breathing patterns.

Some people that are overweight, (me included) and simply loosing weight can

allow less bulk in the neck and chest area & improve their respiratory

effort.

There is also a surgical procedure in which they could remove part of your

palate (roof of your mouth and uvula) which would allow a larger opening for

air to pass.

Wearing oxygen at night may also be helpful, if you are concerned you are

not getting enough oxygen.

I hope this information has helped.

Cindi

>

>Reply-To: shydrager

>To: " shydrager " <shydrager >

>Subject: Cheyne Stokes

>Date: Tue, 29 Oct 2002 21:46:53 +1000 (E. Australia Standard Time)

>

>Hi Everybody. I wonder if any one on the site has come across Cheyne

>Stokes

>Respiratory pattern. Most people I come across, are a little bit shy

>talking about it to me, as they seem to think that only people on their

>last

>legs get this problem.

>Although I have been properly tested in a sleep study set-up and have been

>diagnosed, I believe it is being induced, by something else- Medication or

>other problem.

>I would really like to find out about occurrences and possible relief from

>the problem. It makes me feel uncomfortable about going to sleep. One

>thing I have noticed is, ifm I exercise a lot, the breathing pattern is

>suppressed for quite a while. Unfortunately my legs want to fall from

>under

>me, literally, by the time I get enough exercise.

>I hope somebody can supply some answers, even if they are not good ones.

>Bill Pilgrim

>

>

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Greetings Cindi!

Well written.

If you don't mind, I would like to voice my opinion (and it's just that,

folks). I am not a doctor or researcher. But as a layman that did a lot os

studying of options surgical procedures for most Obstructive Sleep Apnea

(OSA) patients has limited success. As my ENT explained to me, in 70-50% of

the patients they see a 50% improvement in the number of apnea events. This

is okay, if the patient has mild to moderate sleep apnea. But anyone with

severe OSA should avoid such surgery. Also, there are several studies that

show the benefit of the surgery decreases with time. Nor is the surgery

effective for patients with central sleep apnea (CSA). Finally the surgery

can actually increase problems with swallowing. Not a good thing for an MSA

patient. Ask your doctor about these items. They should be considered

before taking the route to surgery.

But please don't construe this as criticism. Your post was excellently

written, providing much more detail than I could post today. Thank you for

doing this! Taking the time to care for others, as you did so well, is what

makes this group so helpful.

Regards,

=jbf=

B. Fisher

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Greetings Cindi!

Well written.

If you don't mind, I would like to voice my opinion (and it's just that,

folks). I am not a doctor or researcher. But as a layman that did a lot os

studying of options surgical procedures for most Obstructive Sleep Apnea

(OSA) patients has limited success. As my ENT explained to me, in 70-50% of

the patients they see a 50% improvement in the number of apnea events. This

is okay, if the patient has mild to moderate sleep apnea. But anyone with

severe OSA should avoid such surgery. Also, there are several studies that

show the benefit of the surgery decreases with time. Nor is the surgery

effective for patients with central sleep apnea (CSA). Finally the surgery

can actually increase problems with swallowing. Not a good thing for an MSA

patient. Ask your doctor about these items. They should be considered

before taking the route to surgery.

But please don't construe this as criticism. Your post was excellently

written, providing much more detail than I could post today. Thank you for

doing this! Taking the time to care for others, as you did so well, is what

makes this group so helpful.

Regards,

=jbf=

B. Fisher

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Yes, Leo does it all the time. Ginger

Re: Cheyne Stokes

> Can this pattern occur during awake - i.e. non sleeping - periods?

>

> Sennewald Charlottesville, Virginia

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Yes, Leo does it all the time. Ginger

Re: Cheyne Stokes

> Can this pattern occur during awake - i.e. non sleeping - periods?

>

> Sennewald Charlottesville, Virginia

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Absolutely. It occurs during sleep or wake cycles. HOWEVER, a bit of

shallow breathing followed by a deep sigh is perfectly normal. The body

uses this pattern to help keep the 'air sacs' in the longs fully expanded.

So, in other words, when in doubt always check with your health care

professionals.

Regards,

=jbf=

B. Fisher

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Share on other sites

Absolutely. It occurs during sleep or wake cycles. HOWEVER, a bit of

shallow breathing followed by a deep sigh is perfectly normal. The body

uses this pattern to help keep the 'air sacs' in the longs fully expanded.

So, in other words, when in doubt always check with your health care

professionals.

Regards,

=jbf=

B. Fisher

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Share on other sites

, Best I can recall it's been going on at almost 3 years maybe longer. The

home health nurse first called it to my attention, she would count up to 25 secs

between breaths. I spoke to Dr Jankovic in Houston and he said all I could do to

stop it was put a c-pap or bi-pap on him all the time. Since all he CAN do is

watch TV, the kids and I decided not to do that. He is not oxygen deprived. Wish

I could tell you more, but that's all I know. Ginger

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, Best I can recall it's been going on at almost 3 years maybe longer. The

home health nurse first called it to my attention, she would count up to 25 secs

between breaths. I spoke to Dr Jankovic in Houston and he said all I could do to

stop it was put a c-pap or bi-pap on him all the time. Since all he CAN do is

watch TV, the kids and I decided not to do that. He is not oxygen deprived. Wish

I could tell you more, but that's all I know. Ginger

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