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#1
New Member
Hi i have been diognosed wth 2 types sleep apnea and csr apnea which is associated with heart failure.

The sleep apnea is very severe i stop breathing every half hour out each hour
And the csr apnea effects about 55% every hour

So to put it blunty i have cfh & pulinary hypotension and very severe sleep apnea.
The Resimed machine i have is the s9 vpap adapt which is basicaly a trial for people
In my condition. I also have qoutro fx full face mask and h5 humidifier with climat control. I have only been on the machine about 4weeks and i am still so very tired
And run down. My question is is any body else using the same machine and is it helping. If the machine doesnt help they say that i will go into complete heart failure. My age is 56 Thanks Ken.
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#2
RE: New Member
Hi slug1956,

I have the Resmed S9 VPAP S which is the same as yours except it has fixed settings for pressure between 10 and 16.4. I also use the Hi5 humidifier and the full face Quatro mask. So our equipment is practically identical.

I have been using it for 6 weeks and I have definitely felt an improvement. I no longer fall asleep at work an even do not 'need' a nap in the afternoon either. I do feel tired at times but it is no longer the exhaustion I had before using the machine. They do say it takes a while to recover from the sleep you lost due to the apnea problem, so I am being patient and hoping to really feel invigorated after a good night's sleep.

I am no longer being controlled by a bad night, but rather I am now more in control of how I sleep.

Most advice I have seen on this board is that you need a lot of patience to get it right, so hang in there and persevere. If you really do not feel any benefits then check with your DME if everything is functioning as it should.
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#3
RE: New Member
Hi Slug! Welcome
Some people feel almost instant relief from CPAP therapy and some take weeks and weeks to feel anything at all. We are all different. The key to this type of therapy is to hang in there and just keep plugging away. You have to continue to use it every time you sleep for it to help you. If you are experiencing CHF, then you have other reasons to be tired all the time as well. CPAP is not going to instantly make everything better, but you should notice some improvement over time. Be sure you are seeing your sleep doctor and cardiologist regularly and be sure they are comparing notes with each other as well. Good luck with your therapy.
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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#4
RE: New Member
Hi slug1956, First of all, WELCOME! to the forum.! Just keep trying with your CPAP therapy. For some people, it takec lots of TIME and PATIENCE. Keep checking back into this forum for more sugestions to help you. Best of luck to you and keep at it.
trish6hundred
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#5
RE: New Member
Hi slug! Welcome aboard. As`said before...keep trying.
It took me several weeks to just start to feel comfortable using the machine. Now I hardly even know I have it on.

Welcome
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#6
RE: New Member
CSR = Cheyne-Stokes Respiration?

Google 'sleep debt' for some information. While we cannot 'catch up on our sleep', we can, however catch up on the damage done. Some folks feel worse after they start therapy because of their sleep debt. Our body and brains have established that sleep deprived is normal. We then have to convince it the new normal. It can take a while! Add in your Cheyne-Stokes and it's no wonder you are tired.

PaulaO

Take a deep breath and count to zen.




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#7
RE: New Member
Your machine is an ASV machine. It's literally a lifesaver for some people with your condition. Some people get great improvements. Keep using it.

Some people only get partial relief, but it's still helpful.

Even without CSR, some people take a long time to feel better after CPAP even if everything is going right. Think of it like apnea/hypoxia/sleep deprivation/panic attacks/stress hormones being a "drug" like alcohol, nicotine, or cocaine. Your body has adjusted to apnea and your metabolism is out of whack until it readjusts.

You've got severe health problems so keep working with your doctor.

You can download the SleepyHead software and get some idea how your machine is handling your apnea. With your more severe medical conditions, be even more careful than usual about tinkering with the settings on your machine, but looking at the data with SleepyHead doesn't change anything on the machine.
Get the free OSCAR CPAP software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#8
RE: Thank you
I would like to thank you for your posts & support outstanding.
But i must say it looks like it could take quite awile for the machine to work.
At the moment it is 1.30pm here in Australia and i feel like i havnt slept at all. I just struggle every day ijust feel so worn out. I hope with persaverance maybe things will improve lets hope so

Thanks Heaps Ken
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#9
RE: New Member
Slug, the hardest patients to get a pressure for in my lab are patients with CSR. An ASV machine is a wonderful help for people who suffer from it, but it tends to be hard to get used to. Our physician who runs the lab tells our patients that it can take a couple months to feel a difference. Whatever you do, keep using it! Don't give up! If you give it a few months, and you still don't feel a difference, talk to the doctor.



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#10
RE: New Member
Hi all it has been about 4 weeks since i started on the machine and really it is taking so mutch to get used to i wake up every morning so tired short breath witch lasts the whole day,I have pain I in my chest and am so run down. What i forgot to mention is that along with CHF, Severe Sleep apnia, Central sleep Apnea, Pulinury Hypotension caused by chf which i am on the maxium tablets you can have. Which put i surpose blutley i have a very short life span because the tablets are not helping and Basicaly i feel like a living wreck and really dont know what to do.

I was put on this type machine to see if it would help whif people in my condition but as i said i am not so sure nothing seems to be working. I am sorry if you think i am going on but i really Concerned as it is really upsetting and making my family very worried as they know it is only a matter time.

THANKS KEN
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