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[Treatment] New to forum
#1
New to forum
Hi all.

I'm brand new in this forum and I'd like to introduce myself. I'm Anthony. I'm 51 and an Aussie.  I was diagnosed with severe sleep apnea with an AHI of 46 in December last year.

When I first saw a sleep specialist I was given a script of 9 cm fixed and I got a Dreamstation Auto 500 from a provider after a trial.

My 9 cm fixed setting was still giving me 25-30 AHI so I set it at auto on 12—20 cm range .I started to get 5-8 AHI readings but then I went back to my provider (DME) and she blasted me for changing it to auto and set it to 6-20 cm. I started getting 10-15 AHI till my provider got a call from the sleep clinic at the hospital and got told to set it at fixed 13 cm fixed. Since then I've been getting very erratic readings ranging from 1.1 - 11.2 AHI.

I have an appointment on 20/3 with my sleep specialist and I think my titration is still not right. I think they will not allow me to do an auto setting so I'm not sure how to approach her and what to tell her. 

Any ideas or thoughts would be greatly appreciated. 

Thanks all and looking forward to your thoughts

Regards

Anthony
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#2
RE: New to forum
Welcome to the boards, and to really get a good grasp on your concerns, we would need to see some data.  Download Sleepyhead to and post your results.
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#3
RE: New to forum
Welcome to Apnea Board. One of the link's below has instructions on how to post your charts from sleepyhead here. Sometimes Doctors aren't very good at explaining why they are prescribing things, like pressure settings. Posting a chart allows people here to see what's going on so they can give solid advice. I'm guessing you may have Clear airway events happening.
Download SleepyHead
Organize your Sleepyhead Charts
Posting Charts
Beginner's Guide to SleepyHead
Mask Primer
5
Advisory Members serve as an "Advisory Committee" to help shape Apnea Board's rules & policies.

Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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#4
RE: New to forum
ou will need a SD card if one isn't loaded in the machine, any less than 32GB will do, you won't fill 2GB (default size in machines) so don't worry about size.

Looking at your data is something they won't know untill you talk to them and will not change any settings on the CPAP.

4 approaches, your choice,

1: let them manage your apnea completely. I do not recommend that approach

2: armed with data and talking points (we will help you there) you can talk with them and hopefully they will see the light and comply.
This will likely be accompanied by nearly daily calls as you consult with them to achieve a managed (by your terms, not theirs) Apnea.

3: with our help, continue to do what you were doing.  You kind of seen where that will go.

4: go rouge, go off net and independent, buy your own Auto machine (ask us before you do) and manage your own apnea.  We will also help you here

In any event you will want data to understand what is happening and follow what is happening to you,  and your apnea.


Sleepyhead provides the best data available, down to a breath by breath analysis for the entire time you are on CPAP.  

ohh and welcome to our forum.

Fred

PS many of you upside down people are here and help others.
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#5
RE: New to forum
Welcome to the Apneaboard Danlo67,

Put it onto auto and adjust the low level to what you had it and leave it at max, it will only go to a high pressure if you need it.
You appear to have had the best results yourself, I think it is a bit silly to set it to a fixed pressure when the machine is better treating your events on auto.
Put it on auto and get some data if you can.  I can't remember what machine you said you had?
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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#6
RE: New to forum
Hi sleepy. It's in my tag. Dreamstation Auto 500. I'd love to go rouge and fund myself but I can barely afford to fund food on the table for the family some weeks. Never mind a $2500 machine. We are a single income family with 2 girls in school. At the same time I don't want or need to lose the machine because I'm not 'compiling'. So it's all a bit tricky. I just hope I get a sleep specialist that will listen and think outside their scholarly box. 

I have the card and I have SleepyHead. I seem to have misplaced my SD card reader so it's a household search for it before my appointment I'm afraid.

I'm so grateful for any help I can get here so thanks for the info so far

Regards

Anthony
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#7
RE: New to forum
Hi Danlo67,
WELCOME! to the forum.!
I wish you good luck with getting your CPAP therapy fine-tuned to better meet your needs.
You have come to the right place for guidance, hang in there for more responses to your post.
trish6hundred
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#8
RE: New to forum
Just remember it's your health, not theirs. If you are not satisfied with their treatment tell them. Though I am only new to this board and CPAP I have been down this path many times with the medical profession.

Best results are always had when you own your own health not other people trying to claim yours.

Researching apnea and its treatment is key to the best outcome not relying on the dubious knowledge of others who have a much lesser stake in your health outcomes
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