New to CPAP - on week 4 of 6 week trial - Any Sefam S.Box users out there?

[Kingsway]

I'm a 73 yo male living in the UK. I/ve had problems with fatigue, sometimes severe, for about a year.  Local doctor, at various times, suggested Long Covid, Non-alcoholic fatty liver, Sleep Apnoea...  

  I'd been using my own Checkme O2 pulse oximeter for quite a while, and the results certainly looked like OSA could be an issue.

I got a referral to the Royal Papworth Hospital for a test.  Months later....  I got a suprise phone call asking me to come into the hospital and collect a  test kit to wear over night at home!   (Pulse Oximeter) I wore it for one night and a week or two after returning it, I got a call to tell me I did NOT have sleep apnoea!!   I told the doctor about my own Oximeter readings taken over many weeks, which showed I had both good and quite bad nights.  Soetimes with SO2 as low as 72% - she seemed to poo poo this at first - but then agreed I could have a second test.

This was a bit more elaborate - Pulse Oximeter again, but also measuring movement of the chest and the stomach area, plus a cannula to check breathing.

Another wait of a few weeks - then received a letter stating that I appeared to have moderate OSA - AHI 20, and that I would be offerred a 6 week trial using a cpap machine.

Received my machine, and a quick intro on how to wear and clean the mask, and operate the machine.

I'm  currently on week four of the trial -  I've been a bit 'naughty'  and have been experimenting with my pressures!
(I'm not sure how well that will go down with the hospital...)

Initially set to 5cm -  20cm  I was getting low AHI readigs from the start, and was sleeping as much as two to three hours longer than usual, and certainly feeling  bit better.  However, I got woken up repeatedly during the night with mask leaks and 'face farts' - it felt like the mask would blow right off of my face.

So I did some research....    I've been using pressures mostly around  6.5cm  - 10cm . And keeping an eye on my Oximter readings to see how well I was doing.   Hence I started to fiddle with the pressures and epr settings.

Sadly, the Sefam  S.Box isn't compatible with OSCAR,  so it was a matter of trial and error.   Later  I stumbled upon the official  Sefam Analyze  app - meant for medics - much to my suprise, it was easy to find, publically available on their own software website page!

So I am, at last,  able to see some real figures -  and confuse myself even more...

I've also been able to buy a used Airsense 10 autoset, which I bought as a backup - it has a motor noise issue (bearings) but I have a new motor on the way from China. 

 The idea was that I could use the Airsense 10 and have data I could put into OSCAR.   I have only used it on a couple of nights - partly due to the noise, but also I don't want the NHS to think I am not using their  (Free to me) machine!!   When I have enough posts under my belt, I hope to publish a  pdf of the report produced from the official software (which is far less user-friendly than OSCAR!)  and perhaps some kind soul can give me some pointers...


BTW  The (semi useless) SEFAM phone app that is meant for patients gives very little info - basically just AHI number and hours slept that night.  It also seems to disagree with the detailed reports from the PC software!!

I wonder if their are any other UK NHS users here on the forum - perhaps also using the Sefam S.Box??

Cheers

[Kingsway]

I seem to have my four posts now - so here goes, trying to share a pdf.... I wonder if it makes sense to anyone?

FWIW - The phone app aid AHI 1.9



  Kingsway- Waveforms - 20230527@23H03_8h13min.pdf (Size: 529.12 KB / Downloads: 15)

[Jay51]

Welcome to ApneaBoard.  If you could get your Airsense 10 Autoset up and running, and then download OSCAR on it and post some charts, we could probably help you more.  If you could get a copy of your sleep study and redact all personal information and post it here, that would help also.  

Two things I see from your Sefam S. Box printouts is that your AHI is not too terribly high (around 9 or 10 if I remember correctly).  It can get lower than this though.  Also, you have many clusters of OSA, Hyponeas, and some CA's during sleep.  Clusters like these usually indicate a positional element to your sleeping.  By postional, I mean you may be chin tucking and cutting off your airway during sleep by doing this.  A soft cervical collar may help you.  Just measure the distance between you chin and your upper chest to get an estimate of the size of collar to get (if you want to).  

Some experts here may see something else in your Sefam data also.  Some other UK NHS users with Sefam S. Box machines may want to reply also.

[Kingsway]

Many thanks - I actually have a cervical collar on the way from Amazon.  Hoping to try it tonight!

No sleep-study, likely to happen I'm afraid.  I was lucky just to get a DIY home-test.

The NHS is hugely over-stressed, after the pandemic.   Millions of people on long waiting lists for major surgery etc..  So I was very lucky to be seen at all.  (Last year, I had to pay out of my own pocket for a private hip-replacement)

It will be very interesting to see what the hospital people say in a couple of weeks when my trial period is over.

[mmaattppp]

Hiya! - I have been using the Sefam S Box since June 2022 after being provided one by the NHS.

I was annoyed to recently find out that it is not compatible with OSCAR or SleepyHead - however, I was unable to find the alayze software online, are you able to private message me a link?

I see you are in Cambridge the same as me - the Papworth Sleep Clinic? They seem unable to provide humidifiers for this machine after almost a whole year waiting also.

[Kingsway]

Hiya! - I have been using the Sefam S Box since June 2022 after being provided one by the NHS.

I was annoyed to recently find out that it is not compatible with OSCAR or SleepyHead - however, I was unable to find the alayze software online, are you able to private message me a link?

I see you are in Cambridge the same as me - the Papworth Sleep Clinic? They seem unable to provide humidifiers for this machine after almost a whole year waiting also.

I f you are  registered  member, you can just go to the private files section, and Robert is not your aunty!

I've got a cunning plan to try and make a DIY external humidifier.  I found a suitable plastic box in Tesco (It has clips to positively lock the lid, so I'm hoping it will hold the pressure) - and willl get a couple of 20mm pipe fittings from Toolstation or Screwfix.  I have a spare hose, so it will go in series  between the S.Box and the mask . It won't be heated, but I'll be interested to see if it is worth using...

In our house, the relative humidity seldom goes below 50% - so I'm not sure if I need a humidifier. I definitely wouldnt buy myself one at £150.00!


Re Papworth - Could I ask if you also had a six week trial?  Did they then decide what your pressures should be? And  how often do you have to check-in so they can see if you've actually been using the machine?

I wonder too if you've needed to phone them with a problem, and how quickly did they get back to you or offer an appointment?

I'm wondering if they will be annoyed with me for changing my pressures - but min 5  and max 20  was driving me nuts with mask leaks...

Tks!

(I'm in Great Cambourne BTW)

[mmaattppp]

I f you are  registered  member, you can just go to the private files section, and Robert is not your aunty!

I've got a cunning plan to try and make a DIY external humidifier.  I found a suitable plastic box in Tesco (It has clips to positively lock the lid, so I'm hoping it will hold the pressure) - and willl get a couple of 20mm pipe fittings from Toolstation or Screwfix.  I have a spare hose, so it will go in series  between the S.Box and the mask . It won't be heated, but I'll be interested to see if it is worth using...

In our house, the relative humidity seldom goes below 50% - so I'm not sure if I need a humidifier. I definitely wouldnt buy myself one at £150.00!


Re Papworth - Could I ask if you also had a six week trial?  Did they then decide what your pressures should be? And  how often do you have to check-in so they can see if you've actually been using the machine?

I wonder too if you've needed to phone them with a problem, and how quickly did they get back to you or offer an appointment?

I'm wondering if they will be annoyed with me for changing my pressures - but min 5  and max 20  was driving me nuts with mask leaks...

Tks!

(I'm in Great Cambourne BTW)

Hi!

I managed to find it and take a look at all my data - it seems my AHI is now consistently below 3.0 most nights so I'm quite pleased about that. My flow rate seems quite high but I dont really know what that is!

I was given my machine after I received a letter saying I was confirmed having Sleep Apnea - it was set at 4.0 to 20.0 and then I went back 4 months later and they did not change it. I have changed it myself to 7.0 - 20.0 (since finding the software) as my wife mentioned I still seemed to snore and splutter a little when I was first falling asleep (when the machine was only on 4.0) and after just one night with it set slightly higher I have found it to be a lot better.

What did you change your pressures to? I found I hated the SimPlus mask they gave me, but I do love the AirFit F20.

I did manage to contact Papworth and they have only now added me to a list for a humidifier, despite me asking when I first got it almost a year ago - reason being I have had a couple of septoplastys and turbinectomy surgeries over the years and have a nose that is quite susceptible to drying out and being irritated, so the humidifier always seemed a must to me. 

They also said it should be every 6 months that I am seen but they themselves made no obvious effort to contact me, I had to call them to say it had been over 6 months.

[mmaattppp]

I f you are  registered  member, you can just go to the private files section, and Robert is not your aunty!

I've got a cunning plan to try and make a DIY external humidifier.  I found a suitable plastic box in Tesco (It has clips to positively lock the lid, so I'm hoping it will hold the pressure) - and willl get a couple of 20mm pipe fittings from Toolstation or Screwfix.  I have a spare hose, so it will go in series  between the S.Box and the mask . It won't be heated, but I'll be interested to see if it is worth using...

In our house, the relative humidity seldom goes below 50% - so I'm not sure if I need a humidifier. I definitely wouldnt buy myself one at £150.00!


Re Papworth - Could I ask if you also had a six week trial?  Did they then decide what your pressures should be? And  how often do you have to check-in so they can see if you've actually been using the machine?

I wonder too if you've needed to phone them with a problem, and how quickly did they get back to you or offer an appointment?

I'm wondering if they will be annoyed with me for changing my pressures - but min 5  and max 20  was driving me nuts with mask leaks...

Tks!

(I'm in Great Cambourne BTW)

I forgot to say - I plan on changing my pressure back to what it was before, if I go in to see them again! 

[Kingsway]

Oh, right.   Did the folk at Papworth  use a PC to analyse your data at all, or just look at the AHI number and say it looked okay?

With the Analyze  software, they can see full details of every nights sessions, and what  pressures you had set!

I'll let you know if my attempt at a DIY humidifier is any good at all!     : 

 In the meantime, perhaps  a folded moistened  towel or facecloth, placed near the air inlet might be enough to raise the humidity - or you could get a room humidifier, perhaps?

[mmaattppp]

Oh, right.   Did the folk at Papworth  use a PC to analyse your data, or just look at the AHI number and say it looked okay?

I'll let you know if my attempt at a DIY humidifier is any good at all!    

They did connect it up and look at some of the data whilst I was there and were pleased with the results, but not much advice or explanation was given.