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

February 25, 2012

Def need bipap not cpap. I found it hard to get used to a mask until I tried

nasal pillows instead and find them v comfy. Google dr john bach as he has a

good website explaining about bipap and pressures etc.

Sent from my iPhone

On 25 Feb 2012, at 03:18, " ellynpeace@... " <ellynpeace@...>

wrote:

> 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

>

February 25, 2012

You only want a BiPAP. Using a CPAP is like exhaling against pressure which

makes you feel very uncomfortable. SMA people need to rest their lungs

sometimes. Thinking that using assistive technology makes them weaker is totally

wrong. Using a BiPAP gives us some rest and we feel much stronger later.

Aul

________________________________

From: " ellynpeace@... " <ellynpeace@...>

Sent: Friday, February 24, 2012 8:18 PM

Subject: 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

February 25, 2012

Hi,

You sound just like I did when I found out I needed BiPAP while sleeping. I

thought my life was coming to an end, LOL! But actually, it was a new beginning.

No, you will not get weaker from being assisted in breathing all those hours

because it gives your muscles a rest so it will actually give them more

endurance and keep you breathing on your own while awake for a longer time. You

will have so much more energy during the day you will feel like a new person! If

you don't get one, your muscles will be too overtaxed and eventually you won't

be able to breathe well during the day (I'm talking long-term here, so don't

panic).

As far as positioning, mask fitting, getting used to it, that will all work out.

I got mine at age 36, I have SMA 2 and I am now 52 years old and singing in a

band! When I got my BiPAP I spent two nights sleeping in the intensive care unit

just so they could monitor CO2 and be there to train me and support me. My PCA

slept in the room with me. When they first put it on I jumped for a second but

they just said, " Patti, just breathe, relax, " stuff like that and within a few

minutes I was fine. If there's anything else I can do for you please let me

know.

Regards,

Patti

www.facebook.com/olypsys

www.reverbnation.com/olypsys

February 25, 2012

Hi Ellyn,

The advice given by others here is good. You def do not want a CPAP.

Google dr. john bach & read his articles on non-invasive ventilation. I

resisted my bi-pap but it is so much better to sleep at night!! It does

take a lot of patience to adjust to letting the machine breathe for you but

it really is a way to prolong strength and quality life.

Love,

N

On 2/24/12 9:18 PM, " ellynpeace@... " <ellynpeace@...>

wrote:

> 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

>

> ------------------------------------

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February 26, 2012

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