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New Member - My Story and Questions - Gunner - 12-16-2015
Hi guys, new member here and I thought I'd introduce myself and also ask some questions. I would like to become an active member and hopefully in the future, when I've had some experience and some knowledge, help newbies like myself with all the questions, tips and expertise that comes with experience. My username by the way comes from the fact I'm a big Arsenal fan, a football/soccer team from London thats nickname is 'The Gunners'.
My name is Michael, I'm 31 years old and I live in London, England. I was diagnosed with sleep apnea a few weeks ago although I suspect I've suffered with the condition for probably over a year. I've always snored quite loudly but my girlfriend noticed it getting significantly louder and also the pausing in breathing but, being a guy I guess and, despite constant tiredness, I just dismissed it as her over worrying and nothing important.
Well, I was given a sleep study by the NHS and the results showed I had very severe sleep apnea. I'm not sure what the AHI score was, as it's something I've only just discovered, but my consultant said over a 60 minute period I was having over 80 incidents of apnea (is that a score of 80?) so immediately put me on a CPAP machine.
The way my NHS trust treats apnea is they give you an automatic cpap machine for 7 days, take the results, then give you the same type of machine except that it's not automatic, and give you a 90% pressure fixed rate - this happens to be 9.0 for me. I have to say I had almost no problems at all adjusting to the machine - and from night one I felt much more refreshed and din't feel drowsy driving late at night, which was my biggest concern when I was untreated.
Now for some questions :
Has anyone gone from a CPAP to an APAP and experienced better results, e.g. a lower AHI score, better night's rest, feeling more refreshed? Like I say, the NHS have given me a REMstar 60 Pro, would there be any benefit in me buying an APAP, and has anyone had any experience in doing this? My consultant is also an important member of the NHS trust where I am being treated and completely denied there was any advantage in me having an APAP machine.
Now, masks. I have been given a nasal mask. I told my consultant I sleep through my mouth, but he again assured me that this isn't a problem as when you're asleep your body tends to automatically switch to nasal, but again I'm not sure about this - I have had success with the current setup and it is obviously working but would there be any benefit in switching to a full facial mask? Again, has anyone had any real life experience making a switch from a nasal mask to a full mask?
Thanks in advance guys, look forward to hearing from you and hearing your stories / getting to know you!
RE: New Member - My Story and Questions - PaytonA - 12-17-2015
As far as breathing through your mouth while asleep,if you are not getting dry mouth and your total leak rate is less than 60 you are probably not breathing or leaking through your mouth.
As far as APAP is concerned, the NHS in Britain seems pretty strict bout the requirements for an auto machine and some doctors do not believe them to be beneficial.Most people on the forum are in favor of APAP for a number of reasons as am I. The reasons are logical and reasonable but may not constitute medical necessity. The most important thing is that the machine is fully data capable.
Best Regards,
PaytonA
RE: New Member - My Story and Questions - Diane1048 - 12-17-2015
Hi Gunner
I too have been diagnosed with Severe Sleep Apnea and I wish that I had discovered that at 31 years of age. It is great that you have taken hold of your health and accepted that you have a treatable health issue.
I have a weird jaw and limited opening to my airways that is genetic but not visible to me or other people - doesnt matter whether I am skinny or fat - sleep a lot or don't sleep much - my airways are compromised and will always collapse when I sleep and it can get worse as you get older BUMMER!!
I have been on CPAP for 14 nights - feel like a new women. I was hitting the wall at about 3pm in the afternoon at work where I am completely exhausted and not capable of any productive work.
RE: New Member - My Story and Questions - DeepBreathing - 12-17-2015
G'day Michael, welcome to Apnea Board.
Catching your apnea this early means that you may be spared some of the co-morbidities including high blood pressure, heart problems, diabetes etc. That's not to say you can just let yourself go, but the odds are now more firmly in your favour. It's also good news that you're adjusting well- sometimes it takes quite a while to get everything working well.
Regarding the type of machine, most people on this forum would say it's better to have an APAP, for a number of reasons: a) Your sleep test is only for one night, in a strange environment. At best, it's a snapshot of your condition. However as they titrated you over 7 nights (presumably in the comfort of your own bed) you can have a lot more faith in the results. b) Some people require different pressures during the night, often depending on their sleep position. eg It's usually the case you need a lower pressure when sleeping on your side, as against sleeping on your back. c) As you get older your needs will change. The APAP can accommodate that, but a fixed pressure machine can't (without manual intervention).
The counter argument is that the changes in pressure can disturb you more than the apneas, which is obviously counter-productive. Some people have chosen to go onto a fixed pressure as they find it more comfortable.
The mask is usually the hardest part. If you can find one which is comfortable and doesn't leak, then you're sorted. I went through six different types to find one I could live with. It doesn't matter whether it's pillows, nasal or full face - so long as it fits, is comfortable and doesn't leak, that's the one for you.
RE: New Member - My Story and Questions - AshSF - 12-17-2015
I went from a wide open range APAP (4-20) to progressively narrowing the range down and then finally moving to a fixed pressure of 8. I find that I sleep much better on fixed pressure. In a paper on pubmed, 18% of study participants were bothered by changes in pressure. For those people, a fixed pressure is better. I am one of them.
In your case, if your titrated pressure is 9 and you tolerate it well, I see no compelling reason to move to an APAP.
With the remstar 460 Pro, you can put it in auto trial mode upto 3 times (30 days each time I think ) in its life. So if you really want to try APAP, you can use that mode. An alternate way to tinker may be to just move the fixed pressure up in 0.5cm increments. And play with aflex/Cflex+ settings.
RE: New Member - My Story and Questions - trish6hundred - 12-17-2015
Hi Gunner,
WELCOME! to the forum.!
It’s great to hear that you adjusting to the CPAP machine well.
The mask is the most difficult part of this whole thing, so don’t be shy about asking to try as many different masks as you need to, ‘till you find the one that works for you.
Hang in there for more responses to your post and much success to you with your CPAP therapy.
RE: New Member - My Story and Questions - Ghost1958 - 12-17-2015
My honest opinion.. Apap.
Set your pro on auto trial. Check the data.
RE: New Member - My Story and Questions - Sleeprider - 12-17-2015
Gunner, the good news is, your machine records detailed efficacy data that can help you learn a lot about your sleep disordered breathing, and how effective the CPAP pressure is in treating it. To fully use it, just download the free Sleepyhead software linked at the top of this page.
One of the things you machine records is leak data. That will tell you if your mask fit, or mouth breathing is a problem. Also, you will see if there are still obstructive or clear apenas, hypopnea, and snores which might indicate a need for pressure adjustment.
While I like auto machines, and bilevel even more, you have a good data capable machine that can be optimized to meet your needs. You will need to become an active participant in your treatment by learning how to read and interpret the data your machine provides. Good luck and welcome to the forum.
RE: New Member - My Story and Questions - Canuck 2 - 12-17-2015
The nice thing about Auto cpap you can go either Auto or just Cpap because the machine and software are designed to handle it.
Auto cpap gives you more options that can make it nicer tool to help with Apnea.
Buy the best you can afford because it is going to be your bed partner for a long time!
I also like Sleepyhead software because its easy to read.
RE: New Member - My Story and Questions - DariaVader - 12-18-2015
We do love our APAPs - well most of us. for myself, 90% pressure is around 11, with maxes up to 14 but I feel so much better if my starting pressure is 8! tried setting it up to 9 and left it for a month and had more trouble with puffyness in my face. There is a lot of difference in the pressure I need when in REM vs non-REM sleep, so I am the poster child for APAP. Nice thing about an APAP is that if you are one of the 18% who do better on straight pressure the APAP can do that, but the CPAP cannot auto adjust. In the US (dunno about UK, sorry), the price difference is small between a data capable CPAP and an APAP --- and you absolutely want data capable!