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Long Time User...First Time 'Advanced Detail' User - DerekN - 07-01-2013
Hi, this is my first post to a Sleep Apnea forum ever and having looked through your forum I am amazed at how much information and advice is available, so a big thank you to the providers and contributing members.
I had been on CPAP treatment using an S7 lightweight for just over 10 years and I never had any further interaction with the sleep clinic or GP regarding my sleep disorder since I was first diagnosed and prescribed. I just replaced parts such as mask, filters, cushions etc as necessary buying them directly from the supplier. Late last year I started to wonder if my 10 year old machine might not be performing as it should be and contacted the sleep clinic for an appointment which took almost 6 months.
The appointment itself consisted of taking body and weight measurements, a brief chat about my condition, downloading data from my old machine (which they couldn't do because it was so old and incompatible), the reason for me wanting to change my device (which I told them was only working intermittently) and I asked them to prescribe a new S9 Autoset. After doing some research on this forum and the Resmed site I also asked them to change the setting from 10cmH20 to Auto but this fell on deaf ears, I was told I did not need to be seen for another 4 years and sent on my merry way.
I have now got my new S9 Autoset (at 10cmH20 fixed pressure), ResScan and Sleepyhead software installed with the last 5 nights of data uploaded to my PC. I was so excited to be able to review my own data for the first time and shocked to see that I was still having so many events. The mask fit was very good as far as I can tell but I recorded an obstructive event lasting 29 seconds one night and several more lasting more than 20 seconds. My AHI over the 5 nights is 6.1 which looks high to me compared to other users. I did mention to the Rep for the medical supplier that I would like to try the Autoset feature but as I suppose is to be expected, was referred back to the prescribing sleep clinic.
My dilemma is this, should I persevere with the inappropriate settings until I can get a new sleep study which could take another six months or just do another 2 nights on the prescribed settings to get a 'Baseline' 7 night comparison and change the settings myself to Autoset and try that for a week to compare the difference. Oh, just to mention today I have also ordered the CMS50D Plus Oximeter to measure my blood oxygen levels through the night as well.
The medical supplier is hosting a CPAP Review Clinic as part of their customer support this September in a local hotel where I think they will access the data and they say they will inform the doctor of the results. I don't, however, hold out much hope of the sleep clinic taking any further action on the results based on their recent performance and as I have seen stated here and completely agree with is that I am the most interested in my own well-being and quality of sleep.
Your comments and opinions are most welcome.
RE: Long Time User...First Time 'Advanced Detail' User - trish6hundred - 07-01-2013
Hi DerekN,
WELCOME! to the forum.!
Glad you were able to get an S9AutoSet and it's great that you want to take an interest in the data you collect from it.
Hang in there for answers to your questions and best of luck with your new machine.
RE: Long Time User...First Time 'Advanced Detail' User - JJJ - 07-01-2013
(07-01-2013, 10:50 AM)DerekN Wrote: I have now got my new S9 Autoset (at 10cmH20 fixed pressure), ResScan and Sleepyhead software installed with the last 5 nights of data uploaded to my PC. I was so excited to be able to review my own data for the first time and shocked to see that I was still having so many events. The mask fit was very good as far as I can tell but I recorded an obstructive event lasting 29 seconds one night and several more lasting more than 20 seconds. My AHI over the 5 nights is 6.1 which looks high to me compared to other users. I did mention to the Rep for the medical supplier that I would like to try the Autoset feature but as I suppose is to be expected, was referred back to the prescribing sleep clinic.
My dilemma is this, should I persevere with the inappropriate settings until I can get a new sleep study which could take another six months or just do another 2 nights on the prescribed settings to get a 'Baseline' 7 night comparison and change the settings myself to Autoset and try that for a week to compare the difference. Oh, just to mention today I have also ordered the CMS50D Plus Oximeter to measure my blood oxygen levels through the night as well.
The medical supplier is hosting a CPAP Review Clinic as part of their customer support this September in a local hotel where I think they will access the data and they say they will inform the doctor of the results. I don't, however, hold out much hope of the sleep clinic taking any further action on the results based on their recent performance and as I have seen stated here and completely agree with is that I am the most interested in my own well-being and quality of sleep.
Your average AHI of 6.1 is not terrible, but a bit high. For example, if a patient scores less than 5.0 in a sleep study the patient's insurance won't pay for a machine or further therapy because it is not bad enough to worry about. Therefore, 5.0 is the mark on the wall that you want to measure below. Nevertheless, lower than 5.0 is even better.
Considering your experience with your sleep clinic I would write them off and either find a new sleep clinic or just use your new Autoset to help you tweak your settings. In fact, I would start by setting your machine to Auto mode with a range of 10 to 15. Then watch the results every day for a couple of weeks. My guess is that if your machine is in Auto mode with that range you will find it increasing the pressure occasionally during the night, resulting in fewer and shorter events. If the results after two weeks are an AHI that is still higher than you'd like, tweak the settings a centimeter one way or the other and give it another couple of weeks.
RE: Long Time User...First Time 'Advanced Detail' User - DerekN - 07-01-2013
Thanks trish6hundred...after so long just sticking to the program I intend to get back to being more energetic like when I first started treatment. I am keen to learn as much as I can now about my condition and take ownership of finding the right solution for me. As always, any advice and guidance is well appreciated.
RE: Long Time User...First Time 'Advanced Detail' User - DerekN - 07-01-2013
Thanks for the advice JJJ, I don't want to write the clinic off just yet as I still need them for anything that requires a prescription and as long as I go through them I can claim a rebate on purchased equipment. But as you suggested I think I'm going to tweak the S9 Autoset to get the best results from it. I'm also quite shocked at the difference in price for that machine this side of the pond...from what I can see on the web it looks to be over 3 times the price here in Europe.
RE: Long Time User...First Time 'Advanced Detail' User - archangle - 07-04-2013
Welcome, DerekN
Usually, a "doctor" of some flavor has to determine the pressure changes, not the equipment supplier.
A good doctor could look at the data your machine recorded, adjust your settings, and then evaluate the changes and see what works best for you.
Unfortunately, there's a bias to ignore CPAP data and insist on an in lab overnight $leep $tudy. While there is some merit to that, the cost, effort, and inconvenience to the patient is often not worth it. It also sets your pressure based on a single night, in a strange bed, on their schedule, not your sleep schedule, with wires attached, not sleeping in your usual sleeping position, etc.
RE: Long Time User...First Time 'Advanced Detail' User - DerekN - 07-04-2013
(07-04-2013, 12:25 AM)archangle Wrote: Welcome, DerekN
Usually, a "doctor" of some flavor has to determine the pressure changes, not the equipment supplier.
A good doctor could look at the data your machine recorded, adjust your settings, and then evaluate the changes and see what works best for you.
Unfortunately, there's a bias to ignore CPAP data and insist on an in lab overnight $leep $tudy. While there is some merit to that, the cost, effort, and inconvenience to the patient is often not worth it. It also sets your pressure based on a single night, in a strange bed, on their schedule, not your sleep schedule, with wires attached, not sleeping in your usual sleeping position, etc.
I couldn't agree with you more, I am a night person and always have been, the earliest I have been to bed this last week has been 1:30am. The sleep clinic had me to bed at 10pm to 6am when I was first tested 10 years ago which is probably normal for the majority of people but very hard and unnatural for me to do. I didn't have any Polysomnography study last month when I went back to them and I was just prescribed the new S9 Autoset at the same pressure (10cmh20) as before.
I installed the ResScan and Sleepyhead software the first day I got my new device and I viewed my first six nights on it at the prescribed settings, the worst night I had an AHI of 7.66 and the best was 4.31, I changed my settings to Autoset 10-15cmh20 two nights ago and the first night on the new setting was AHI 3.34 and last night my AHI was 1.85 so it seems to be improving with the new settings. I don't want to get caught up with the numbers but I can actually say that I awoke much more alert today as if I had a proper nights sleep. I've ordered an Oximeter and should have that next week just to monitor my levels. Even though its early stages with the new device I feel like finally I know whats going on with my sleep apnea and that I wasn't getting the right treatment for a long time.
RE: Long Time User...First Time 'Advanced Detail' User - martinsr00 - 07-04-2013
Hello DerekN
It's perhaps helpful to realize that a sleep study is one data point -- one night's sleep among many. Based on that data, a doctor prescribes a "dose" (pressure).
But your health improves over time, and many data points and some problem solving mean better outcomes. Getting those data points from recurrent sleep studies is cost prohibitive. But judiciously tweaking things yourself (a little bit) could possibly do the trick if you have a machine that records data. You take one risk by deviating from the precise order that the doctor gave you. You take another risk by assuming that one night's data and one opinion in time is always the best solution. Which one to take? That's a personal decision.
Yes, you should give very high weight to the opinions of your physicians. Recognize that your physician may be relying on one night's data.
RE: Long Time User...First Time 'Advanced Detail' User - sleepyhead2 - 07-21-2013
Hello Derek, I'm in Ireland too and just received a diagnosis. I've researched the various options online and really want to get hold of a Resmed S9 Autoset.
Please can you tell me which supplier you used in Ireland to get hold of this unit ?
Many thanks.
(07-01-2013, 10:50 AM)DerekN Wrote: I have now got my new S9 Autoset (at 10cmH20 fixed pressure), ResScan and Sleepyhead software installed with the last 5 nights of data uploaded to my PC.
RE: Long Time User...First Time 'Advanced Detail' User - bwexler - 07-21-2013
You might want to check prices and availability from Supplier #1.
If they can ship to you in Ireland you may save money even with no reimbursement.
(07-21-2013, 02:08 PM)sleepyhead2 Wrote: Hello Derek, I'm in Ireland too and just received a diagnosis. I've researched the various options online and really want to get hold of a Resmed S9 Autoset.
Please can you tell me which supplier you used in Ireland to get hold of this unit ?
Many thanks.
(07-01-2013, 10:50 AM)DerekN Wrote: I have now got my new S9 Autoset (at 10cmH20 fixed pressure), ResScan and Sleepyhead software installed with the last 5 nights of data uploaded to my PC.