Re: Re: CPAP/BPAP: I think I have to bite the bullet

[Guest guest]

Yes, like I have stated before, it has to be BiPAP and never CPAP. It has

nothing to do with sleep apnea either, because BiPAP can be used for that

purpose too. Many doctors don't mention BiPAP just because it's more expensive.

________________________________

From: aimee.wehmeier <mzkittie1771@...>

Sent: Saturday, March 10, 2012 5:40 PM

Subject: Re: CPAP/BPAP: I think I have to bite the bullet

 

definately bipap. we don't have traditional sleep apnea, it is caused by muscle

weakness. as a result, cpap is not effective because typically our muscles are

not strong enough to blow off the co2, so it builds in our systems. went to mayo

and they only use bipap with sma. i really resisted it and now only wish i

would have started sooner. so much more energy and have been healthier because i

can rest. just got the blue gel mask as recommended by someone with sma and i

think i am going to like it. i use oxygen with mine. makes white noise, you get

used to it.

>

> Hi guys

>

> same problem here... I'm starting to think that trying a bpap won't be a bad

idea... but I have another question for those of you that use it and don't sleep

alone.... How much noise does it make? I don't want to stress my partner's sleep

too much...

> Any info will be great

>

>  

>

>

>

> Vesna

>    

>

>

> ________________________________

> Da: " ellynpeace@... " <ellynpeace@...>

> A:

> Inviato: Sabato 25 Febbraio 2012 4:18

> Oggetto: CPAP/BPAP: I think I have to bite the bullet

>

>

>  

> Greetings Folks,

>

> Could use some input from those of you who use either CPAP or BiPAP while

sleeping. Although I've been fortunate not to have to use any equipment thus

far, I'm pretty sure that time has come to an end. A little about me: I'm 47

and have SMA 1; have noticed lately that no matter how many hours of sleep I

get, I still feel exhausted and sometimes feel dizzy in the mornings or wake

with a headache. After doing some research, I found these symptoms are all

linked with sleep apnea.

>

> What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

others

> overcame this obstacle if only to remind myself that I can find my way over

it, too.

>

> Thanks in advance for your thoughts!

> Ellyn

>

>

>

>

>

[Guest guest]

I'd try CPAP first that's what I did and has worked great for me been using it

for 5 years why jump in to deep if you don't have to

Thank you

mechelle

Sent from my iPhone

On 14 Mar 2012, at 13:54, Aul Pedajas <aulpedajas@...> wrote:

> Yes, like I have stated before, it has to be BiPAP and never CPAP. It has

nothing to do with sleep apnea either, because BiPAP can be used for that

purpose too. Many doctors don't mention BiPAP just because it's more expensive.

>

> ________________________________

> From: aimee.wehmeier <mzkittie1771@...>

>

> Sent: Saturday, March 10, 2012 5:40 PM

> Subject: Re: CPAP/BPAP: I think I have to bite the bullet

>

>

>

> definately bipap. we don't have traditional sleep apnea, it is caused by

muscle weakness. as a result, cpap is not effective because typically our

muscles are not strong enough to blow off the co2, so it builds in our systems.

went to mayo and they only use bipap with sma. i really resisted it and now only

wish i would have started sooner. so much more energy and have been healthier

because i can rest. just got the blue gel mask as recommended by someone with

sma and i think i am going to like it. i use oxygen with mine. makes white

noise, you get used to it.

>

>

> >

> > Hi guys

> >

> > same problem here... I'm starting to think that trying a bpap won't be a bad

idea... but I have another question for those of you that use it and don't sleep

alone.... How much noise does it make? I don't want to stress my partner's sleep

too much...

> > Any info will be great

> >

> > Â

> >

> >

> >

> > Vesna

> > Â Â Â

> >

> >

> > ________________________________

> > Da: " ellynpeace@... " <ellynpeace@...>

> > A:

> > Inviato: Sabato 25 Febbraio 2012 4:18

> > Oggetto: CPAP/BPAP: I think I have to bite the bullet

> >

> >

> > Â

> > Greetings Folks,

> >

> > Could use some input from those of you who use either CPAP or BiPAP while

sleeping. Although I've been fortunate not to have to use any equipment thus

far, I'm pretty sure that time has come to an end. A little about me: I'm 47 and

have SMA 1; have noticed lately that no matter how many hours of sleep I get, I

still feel exhausted and sometimes feel dizzy in the mornings or wake with a

headache. After doing some research, I found these symptoms are all linked with

sleep apnea.

> >

> > What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

> others

> > overcame this obstacle if only to remind myself that I can find my way over

it, too.

> >

> > Thanks in advance for your thoughts!

> > Ellyn

> >

> >

> >

> >

> >

[Guest guest]

My advice would be to see a pulmonologist and have a sleep study, although it

would need to be a doctor who knows something about neuromuscular disorders.

The sleep study I had done resulted with me using oxygen only at night, which

was not the right way to go. Now I'm working with a pulmonologist who knows what

he's doing. I've been using a bipap for a few years now, and it has greatly

improved my quality of life. 

Dina 

________________________________

From: mechelle <xx_laura_s_xx@...>

" " < >

Sent: Thursday, March 15, 2012 5:50 AM

Subject: Re: Re: CPAP/BPAP: I think I have to bite the bullet

 

I'd try CPAP first that's what I did and has worked great for me been using it

for 5 years why jump in to deep if you don't have to

Thank you

mechelle

Sent from my iPhone

On 14 Mar 2012, at 13:54, Aul Pedajas <aulpedajas@...> wrote:

> Yes, like I have stated before, it has to be BiPAP and never CPAP. It has

nothing to do with sleep apnea either, because BiPAP can be used for that

purpose too. Many doctors don't mention BiPAP just because it's more expensive.

>

> ________________________________

> From: aimee.wehmeier <mzkittie1771@...>

>

> Sent: Saturday, March 10, 2012 5:40 PM

> Subject: Re: CPAP/BPAP: I think I have to bite the bullet

>

>

>

> definately bipap. we don't have traditional sleep apnea, it is caused by

muscle weakness. as a result, cpap is not effective because typically our

muscles are not strong enough to blow off the co2, so it builds in our systems.

went to mayo and they only use bipap with sma. i really resisted it and now only

wish i would have started sooner. so much more energy and have been healthier

because i can rest. just got the blue gel mask as recommended by someone with

sma and i think i am going to like it. i use oxygen with mine. makes white

noise, you get used to it.

>

>

> >

> > Hi guys

> >

> > same problem here... I'm starting to think that trying a bpap won't be a bad

idea... but I have another question for those of you that use it and don't sleep

alone.... How much noise does it make? I don't want to stress my partner's sleep

too much...

> > Any info will be great

> >

> > Â

> >

> >

> >

> > Vesna

> > Â Â Â

> >

> >

> > ________________________________

> > Da: " ellynpeace@... " <ellynpeace@...>

> > A:

> > Inviato: Sabato 25 Febbraio 2012 4:18

> > Oggetto: CPAP/BPAP: I think I have to bite the bullet

> >

> >

> > Â

> > Greetings Folks,

> >

> > Could use some input from those of you who use either CPAP or BiPAP while

sleeping. Although I've been fortunate not to have to use any equipment thus

far, I'm pretty sure that time has come to an end. A little about me: I'm 47 and

have SMA 1; have noticed lately that no matter how many hours of sleep I get, I

still feel exhausted and sometimes feel dizzy in the mornings or wake with a

headache. After doing some research, I found these symptoms are all linked with

sleep apnea.

> >

> > What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

> others

> > overcame this obstacle if only to remind myself that I can find my way over

it, too.

> >

> > Thanks in advance for your thoughts!

> > Ellyn

> >

> >

> >

> >

> >

[Guest guest]

I done the sleep studdy at home with just the sat reader

Thank you

mechelle

Sent from my iPhone

On 15 Mar 2012, at 19:55, " ellynpeace@... " <ellynpeace@...>

wrote:

> Thanks to all of you for your helpful replies! My appointment with the doctor

is on Monday. Unfortunately, my own doc is no longer doing sleep stuff, so I

will be seeing his partner, who I've never met. Shouldn't really be any problem

but I do have one more question. Did all of you do sleep studies prior to

beginning use of BiPAP? I highly doubt that would be effective for me since,

it's tough to sleep in anything but my own bed. I'm thinking an O2 monitor

overnight might be just as telling. Suggestions? Stories?

>

> Ellyn

>

>

> > >

> > > Hi guys

> > >

> > > same problem here... I'm starting to think that trying a bpap won't be a

bad idea... but I have another question for those of you that use it and don't

sleep alone.... How much noise does it make? I don't want to stress my partner's

sleep too much...

> > > Any info will be great

> > >

> > > ÂÂ

> > >

> > >

> > >

> > > Vesna

> > >   ÂÂ

> > >

> > >

> > > ________________________________

> > > Da: " ellynpeace@ " <ellynpeace@>

> > > A:

> > > Inviato: Sabato 25 Febbraio 2012 4:18

> > > Oggetto: CPAP/BPAP: I think I have to bite the bullet

> > >

> > >

> > > ÂÂ

> > > Greetings Folks,

> > >

> > > Could use some input from those of you who use either CPAP or BiPAP while

sleeping. Although I've been fortunate not to have to use any equipment thus

far, I'm pretty sure that time has come to an end. A little about me: I'm 47 and

have SMA 1; have noticed lately that no matter how many hours of sleep I get, I

still feel exhausted and sometimes feel dizzy in the mornings or wake with a

headache. After doing some research, I found these symptoms are all linked with

sleep apnea.

> > >

> > > What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

> > others

> > > overcame this obstacle if only to remind myself that I can find my way

over it, too.

> > >

> > > Thanks in advance for your thoughts!

> > > Ellyn

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Me too

Sent from my iPhone

On 15 Mar 2012, at 20:21, mechelle <xx_laura_s_xx@...> wrote:

> I done the sleep studdy at home with just the sat reader

>

> Thank you

> mechelle

>

> Sent from my iPhone

>

> On 15 Mar 2012, at 19:55, " ellynpeace@... "

<ellynpeace@...> wrote:

>

> > Thanks to all of you for your helpful replies! My appointment with the

doctor is on Monday. Unfortunately, my own doc is no longer doing sleep stuff,

so I will be seeing his partner, who I've never met. Shouldn't really be any

problem but I do have one more question. Did all of you do sleep studies prior

to beginning use of BiPAP? I highly doubt that would be effective for me since,

it's tough to sleep in anything but my own bed. I'm thinking an O2 monitor

overnight might be just as telling. Suggestions? Stories?

> >

> > Ellyn

> >

> >

> > > >

> > > > Hi guys

> > > >

> > > > same problem here... I'm starting to think that trying a bpap won't be a

bad idea... but I have another question for those of you that use it and don't

sleep alone.... How much noise does it make? I don't want to stress my partner's

sleep too much...

> > > > Any info will be great

> > > >

> > > > ÂÂ

> > > >

> > > >

> > > >

> > > > Vesna

> > > >   ÂÂ

> > > >

> > > >

> > > > ________________________________

> > > > Da: " ellynpeace@ " <ellynpeace@>

> > > > A:

> > > > Inviato: Sabato 25 Febbraio 2012 4:18

> > > > Oggetto: CPAP/BPAP: I think I have to bite the bullet

> > > >

> > > >

> > > > ÂÂ

> > > > Greetings Folks,

> > > >

> > > > Could use some input from those of you who use either CPAP or BiPAP

while sleeping. Although I've been fortunate not to have to use any equipment

thus far, I'm pretty sure that time has come to an end. A little about me: I'm

47 and have SMA 1; have noticed lately that no matter how many hours of sleep I

get, I still feel exhausted and sometimes feel dizzy in the mornings or wake

with a headache. After doing some research, I found these symptoms are all

linked with sleep apnea.

> > > >

> > > > What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

> > > others

> > > > overcame this obstacle if only to remind myself that I can find my way

over it, too.

> > > >

> > > > Thanks in advance for your thoughts!

> > > > Ellyn

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hi. My husband has sma type 3. He went to a sleep dr and was diagnosed w sleep

apnea @ age 30, although he was snoring every nite way before then. His dad also

has sleep apnea so I'm not sure if it is hereditary or related to his sma or

both. After alot of talking and convincing, he finally went to the sleep dr. He

was worried about losing functionality just like you. Personally, i don't think

the cpap machine has hurt him, but has only helped him and improved his everyday

living.

If he doesn't use the machine, he is extremely exhausted the next day. It has

really helped him sleep deeply (rem sleep) versus without it he had broken sleep

and would wake himself up often throughout the night. His machine is really

quiet and as a spouse u get use to the white noise. He starts out sleeping on

his back, then turns on his side during the night with no problems w the tubing.

He has the Cpap machine that pushes air through the tube that goes up to his 2

nostrils (w strap around his head). then he wears another chin strap around his

head to make sure his mouth stays closed. There are many kinds of masks you can

try to see which one works for you. When you do the sleep test you sleep with a

mask on n certain machine settings. They also do a follow up sleep test to make

sure you have the right pressure (bc there r different pressure settings on the

machine). I only know about the Cpap machine from my husbands, father, and

father in law perspectives. Hope this helps.

On Mar 15, 2012, at 4:21 PM, mechelle <xx_laura_s_xx@...> wrote:

> I done the sleep studdy at home with just the sat reader

>

> Thank you

> mechelle

>

> Sent from my iPhone

>

> On 15 Mar 2012, at 19:55, " ellynpeace@... "

<ellynpeace@...> wrote:

>

> > Thanks to all of you for your helpful replies! My appointment with the

doctor is on Monday. Unfortunately, my own doc is no longer doing sleep stuff,

so I will be seeing his partner, who I've never met. Shouldn't really be any

problem but I do have one more question. Did all of you do sleep studies prior

to beginning use of BiPAP? I highly doubt that would be effective for me since,

it's tough to sleep in anything but my own bed. I'm thinking an O2 monitor

overnight might be just as telling. Suggestions? Stories?

> >

> > Ellyn

> >

> >

> > > >

> > > > Hi guys

> > > >

> > > > same problem here... I'm starting to think that trying a bpap won't be a

bad idea... but I have another question for those of you that use it and don't

sleep alone.... How much noise does it make? I don't want to stress my partner's

sleep too much...

> > > > Any info will be great

> > > >

> > > > ÂÂ

> > > >

> > > >

> > > >

> > > > Vesna

> > > >   ÂÂ

> > > >

> > > >

> > > > ________________________________

> > > > Da: " ellynpeace@ " <ellynpeace@>

> > > > A:

> > > > Inviato: Sabato 25 Febbraio 2012 4:18

> > > > Oggetto: CPAP/BPAP: I think I have to bite the bullet

> > > >

> > > >

> > > > ÂÂ

> > > > Greetings Folks,

> > > >

> > > > Could use some input from those of you who use either CPAP or BiPAP

while sleeping. Although I've been fortunate not to have to use any equipment

thus far, I'm pretty sure that time has come to an end. A little about me: I'm

47 and have SMA 1; have noticed lately that no matter how many hours of sleep I

get, I still feel exhausted and sometimes feel dizzy in the mornings or wake

with a headache. After doing some research, I found these symptoms are all

linked with sleep apnea.

> > > >

> > > > What I'm wondering is how you've adjusted to sleeping while wearing the

headgear required by either the CPAP or BiPAP? As most of you probably

understand, I've only got a very few comfortable positions and it's hard to

imagine any of them with that headgear! Also, I'm concerned that if I start

using the equipment, my breathing will get weaker because it is being aided for

so many hours every day. My philosophy has always been to rely on assistive

devices as little as possible so that I don't lose what strength I do have any

sooner than necessary. Another question I have is what the pros and cons are of

the CPAP vs. the BiPAP. I understand the different ways they function, but am

wondering if one is more comfortable than the other, and why one would chosen

over the other. I'm really trying not to be in denial about this issue, so any

of your experiences and input will be invaluable to me! We are all different,

but it will help me to know how

> > > others

> > > > overcame this obstacle if only to remind myself that I can find my way

over it, too.

> > > >

> > > > Thanks in advance for your thoughts!

> > > > Ellyn

> > > >

> > > >

> > > >

> > > >

> > > >