NHS and UARS pressure

sleepyfox · Post by **sleepyfox** » Mon Jan 11, 2016 2:06 pm

I started CPAP for UARS four months ago. The first few weeks were amazing, waking up refreshed and energized, both body and mind. But then I kind of detiorated again, not to pre-CPAP levels but still not good, tired during the day, body aches and brain fog.

The NHS (UK health system) gave me a system one resmed but the data has been disabled so I'm not able to see any data, I don't know why they do this. ANd I can't change the pressure without seeing the consultant.

So I finally had my 4 month check up today and told him that I wasn't doing as good as I was at the start and perhaps the pressure should be changed. I thought he would suggest an autopap tiltration but he just said we'll try upping it to 12.5 (from 10) and see you in six months. I was never tiltrated to begin with, just a home sleep study and they put me on 10 to start with. Does autopap not work with UARS for some reason?

I feel a bit annoyed as it seems very hit and miss, and I have to wait another six months if the pressure isn't working for me. It seems like it will take such a long time to work out the right pressure. The guy also couldn't get me out of his office fast enough, didn't really give me time to explain anything or ask all my questions. Unfortunately I am not the best at being assertive with doctors. Is there anyway I can speed up this process?

On the plus side I will be getting a humidifier .......in the next 10 weeks

Sleeprider · Post by **Sleeprider** » Mon Jan 11, 2016 2:10 pm

Which specific model of Resmed did you get? There should be a 3-digit code on the back of the blower: 261, 461 or 561. Your answer will tell us if there is any data to be seen.

It's really easy to get into the clinician menus to enable any options and change any settings you want. Turn the dial to setup, press control knob and ramp button until you get 2-beeps, turn to setup, select and scroll through the options.

WindCpap · Post by **WindCpap** » Mon Jan 11, 2016 2:14 pm

Did they at least use an EEG for your home study. My understanding is the UARS is very difficult to diagnose, and almost impossible to titrate without one. This is because the arousal is due to the additional effort required to breath, and does not necessarily show up as a true hypopnea.

sleepyfox · Post by **sleepyfox** » Mon Jan 11, 2016 2:27 pm

Oh wow that totally worked! Thank you!!! Amazed it was so simple - thanks! I can now adjust the pressure. Though I guess I'll have to keep it quiet to the doc if I do! I expected him to check my machine but he didn't.

I can see some kind of data like AHI now, guess I will need to learn more about that and work out software and things. I have a Philips Respironics Remstar Pro wth C-Flex System One 461P.

I think they did an EEG, I was wired up to all sorts all over my chest and things, although I had a terrible nights sleep with it. I'm not so worried about the diagnosis as CPAP is definitely making a big difference, I no longer have to oversleep etc..

WindCpap · Post by **WindCpap** » Mon Jan 11, 2016 2:31 pm

The EEG would have been on your head. It measures brainwaves.

Now that you can change the pressure yourself, you can increase it 1 cmH20 at a time (2.5 cmH20 increase is really quite a lot), and see how you feel.

There may be some people here who can help you interpret the data, but RERAs are very difficult to spot properly without ant EEG.

sleepyfox · Post by **sleepyfox** » Mon Jan 11, 2016 2:48 pm

Ah yes I was thinking of ECG! Don't think I did. The diagnosis was all a bit mysterious, I just got a letter saying I had UARS. A doctor told me that I didn't have sleep apnea but we think you might be helped by going on CPAP - and they were right!

Oh well, I guess I don't need the data, I can just track how my symptoms respond as I have been doing.

Yes I tried out 12.5 just there and it was a bit much! Glad I have the option now to bump it up slowly.

chunkyfrog · Post by **chunkyfrog** » Mon Jan 11, 2016 2:54 pm

If anyone mentions the pressure, just act dumb and tell them how you feel.

49er · Post by **49er** » Mon Jan 11, 2016 3:05 pm

WindCpap wrote:The EEG would have been on your head. It measures brainwaves.

Now that you can change the pressure yourself, you can increase it 1 cmH20 at a time (2.5 cmH20 increase is really quite a lot), and see how you feel.

There may be some people here who can help you interpret the data, but RERAs are very difficult to spot properly without ant EEG.

Actually esophogeal manometry has been the gold standard for measuring RERAS. But this article points out that a Nasal Cannula/Pressure Transducer System, which detected my RERAs during a 2014 sleep study, works just as well and is non invasive unlike the espophogeal manometry.

http://www.journalsleep.org/ViewAbstract.aspx?pid=23926

I would be curious as to what was used to measure RERAS during sleepyfox's home study. I didn't think home studies could measure them accurately but of course, I could be wrong about that.

49er

OkyDoky · Post by **OkyDoky** » Mon Jan 11, 2016 3:15 pm

With the SD card in your machine you can use software and see all the data. Sleepyhead is a free program. Here is a link to learn how to download. https://sleep.tnet.com/resources/sleepyhead
You can also go here to get a copy of the Clinical Manual. http://www.apneaboard.com/adjust-cpap-p ... tup-manual
Just scroll down to Section three and follow the Email instructions.

Sleeprider · Post by **Sleeprider** » Mon Jan 11, 2016 3:23 pm

sleepyfox wrote:Oh wow that totally worked! Thank you!!! Amazed it was so simple - thanks! I can now adjust the pressure. Though I guess I'll have to keep it quiet to the doc if I do! I expected him to check my machine but he didn't.

I can see some kind of data like AHI now, guess I will need to learn more about that and work out software and things. I have a Philips Respironics Remstar Pro wth C-Flex System One 461P.

I think they did an EEG, I was wired up to all sorts all over my chest and things, although I had a terrible nights sleep with it. I'm not so worried about the diagnosis as CPAP is definitely making a big difference, I no longer have to oversleep etc..

Glad that worked out for you.

Now, you should download the manual for that machine. It is a Philips Respironics 60 Series Pro CPAP and it is fully data capable. To get a manual, follow the instructions on this page (you may need to join the ApneaBoard forum) http://www.apneaboard.com/adjust-cpap-p ... tup-manual

To download Sleepyhead software follow this link, and install it on your computer. You can then access the data stored on the SD card at the back top-left of your blower unit: http://www.sleepfiles.com/SH2/

To post images of your data, charts, graphs, statistics, follow this tutorial: https://sleep.tnet.com/resources/sleepy ... screenshot

Good luck, and look forward to hearing more about your progress.

WindCpap · Post by **WindCpap** » Mon Jan 11, 2016 3:30 pm

49er wrote:
WindCpap wrote: Actually esophogeal manometry has been the gold standard for measuring RERAS. But this article points out that a Nasal Cannula/Pressure Transducer System, which detected my RERAs during a 2014 sleep study, works just as well and is non invasive unlike the espophogeal manometry.
49er

Which article? No link.

They would have used the EEG in conjunction with the Nasal Cannula. Basically they are looking for decreased airflow that results in arousal, but is not technically classified as an hypoopnea. The Cannula measures the flow, and the EEG measures the arousals. You are right about the manometer being the gold standard, but it is general not used for obvious reasons.

49er · Post by **49er** » Mon Jan 11, 2016 3:32 pm

WindCpap wrote:
49er wrote:
WindCpap wrote: Actually esophogeal manometry has been the gold standard for measuring RERAS. But this article points out that a Nasal Cannula/Pressure Transducer System, which detected my RERAs during a 2014 sleep study, works just as well and is non invasive unlike the espophogeal manometry.
49er
Which article? No link.

They would have used the EEG in conjunction with the Nasal Cannula. Basically they are looking for decreased airflow that results in arousal, but is not technically classified as an hypoopnea. The Cannula measures the flow, and the EEG measures the arousals. You are right about the manometer being the gold standard, but it is general not used for obvious reasons.

Just posted it. Sorry about that.

sleepyfox · Post by **sleepyfox** » Mon Jan 11, 2016 3:37 pm

Thanks for the links and instructions sleeprider and okydoky, data should make for some interesting reading! I'll let folks know how it goes. I'm putting the pressure up to 11cm and might see how I go with that for a little while and adjust before brining it up further.

49er I wish I could tell you but the whole process was very mysterious, I just got a letter saying I had UARS. The doctor said I didn't have sleep apnea but because I am so profoundly tired then I might benefit from a CPAP - and I did! I think I was quite lucky to be honest, I know a lot of places refuse to prescribe CPAP without having sleep apnea. Although I was upset that they refused me an oral device (my teeth are such that OTC ones don't work for me). But perhaps it wouldn't have worked as well anyway.

Chunkyfrog - very cunning

49er · Post by **49er** » Mon Jan 11, 2016 3:59 pm

sleepyfox wrote:Thanks for the links and instructions sleeprider and okydoky, data should make for some interesting reading! I'll let folks know how it goes. I'm putting the pressure up to 11cm and might see how I go with that for a little while and adjust before brining it up further.

49er I wish I could tell you but the whole process was very mysterious, I just got a letter saying I had UARS. The doctor said I didn't have sleep apnea but because I am so profoundly tired then I might benefit from a CPAP - and I did! I think I was quite lucky to be honest, I know a lot of places refuse to prescribe CPAP without having sleep apnea. Although I was upset that they refused me an oral device (my teeth are such that OTC ones don't work for me). But perhaps it wouldn't have worked as well anyway.

Chunkyfrog - very cunning

Well, you received a necessary pap machine and that is all that matters. You are so right about being very fortunate.

Best of luck to you.

49er

NHS and UARS pressure

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