What's your pressure?

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Permalink Reply by Kath Hope on March 26, 2011 at 23:04

We're all new here Caveman, as the forum's only been 'live' since last Monday, and am pleased to say that it's got off to a real good start, thanks to the lovely members :)

 

I'm working at my own pressures (sshhhh, don't tell the hospital).  I recently had an operation for a deviated septum and turbinate reduction.  Yippee, I can now breathe through my nose!  I've been checking my AHI (apnoea/hypopnoea index for those who don't know) and it's been steadily decreasing, but am having to change my pressures to suit.  The best pressure for my on straightforward CPAP seems to be 14.5, but it's early days yet, as I only had the operation 5 weeks ago.  If I use my machine on APAP it goes up to 15.5 though.  Will report back later when I've cracked it.....  Had a shock on here tonight when I discovered that one un-named hospital set everyone at a pressure of 10 OMG!!!!!

 

We may find that some people don't even know their own pressures.  Horrificly

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Permalink Reply by Jackie on March 27, 2011 at 11:17

Hi, I was told 10 - also what I remembered (I think or dreamed?) that the measurements on the test equipment go between something and 10 - so I wonder if that is the maximum that the equipment goes to when being used and that would be why everyone seems to be on 10?

The nurse re-set mine a little higher when I went back as I complained of feeling not enough air at times but I don't know what to, but I could certainly feel the difference.

I will ask or try to find out how to. There is so much I don't know and the follow ups at the hospital (too far apart) do not explain anything. They only seem interested in how many hours I use it (averaging just over 9 hours for me which they were very pleased with) but not much else.

I feel I am in the right place to learn here, there is so much already and it has only just begun !

Jacks xxx

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Permalink Reply by Tigers Fan on March 27, 2011 at 11:57

The question,"What is your pressure?", suggests a static pressure. The best I can answer that is that last night and fora few weeks before, I've used 16.5cm with one degree/first setting of C-Flex. Before that I was on 17cm and no C-Flex; and before that and before that.....

 

Admittedly, I live in Southampton with its un-named hospital, but the thought of not adjusting my pressure myself, let alone not knowing my pressure, just fills my heart with fear and dread!!

 

I prefer CPAP over APAP and thus finish up using an NHS machine that records nothing but hours of use (leaving my own APAP in the cupboard). So I bought an oximeter, which indicates how good my therapy is thus if I need to adjust the pressure. There are so very many factors that affect CPAP pressure needs that the NHS could not cope if we all turned up asking for our pressures to be reset to suit our need - it only works because so many people accept what pressure they were given and try to cope with that as a basis for their therapy.

 

Unless you are one of the very fortunate few (who mainly live in Leicestershire or attend Papworth, from what I can gather) you have little choice but to learn how to maintain your own therapy - or suffer more or less ineffectual therapy.

 

Power to the people!

 

TF

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Permalink Reply by Kath Hope on March 27, 2011 at 18:32

Interesting how you ended with 'Power to the People."  Have a look at the caption under Hope2SleepGuide....... "Sleep Apnoea Forum Bringing Power to the Patient."  Great minds this alike lol!

Tigers Fan said:

 

Power to the people!

 

TF

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Permalink Reply by Lisa on March 28, 2011 at 18:14

My pressure usually averages out at about 13.4, but fluctuates quite a lot. When I first put mask on pressure is at 4, then usually goes up to 7 to 9. Often when I wake in the morning it is within that range.  Sometimes it goes up to 18 to 20 which usually involves mask leak and me waking. Think some of the time at least the extra pressure is causing the mask leak not the other way round.

 My nose nearly always feels bunged up to some degree so am really interested to know how Kath gets on after her op.  I wonder if I would benefit from similar. 

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Permalink Reply by Tigers Fan on March 28, 2011 at 20:01

Hi Lisa

 

How do you get on with your APAP being wide open? What AHI do you achieve?

 

I think there is little that will resist a 20cm gale that doesn't involve either a crushed skull or mask leaks!

 

TF

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Permalink Reply by Lisa on March 29, 2011 at 0:34

Tigers Fan said:

Hi Lisa

 

How do you get on with your APAP being wide open? What AHI do you achieve?

 

I think there is little that will resist a 20cm gale that doesn't involve either a crushed skull or mask leaks!

 

TF

 

Hi TF,

You are so right about the gale! 

Except for those 20s moments and I'm not getting many of those I'm fine with my APAP as is. 

I have only had this particular machine ( Resmed Autoset Spirit 11 ) for a few months , during which time I have also been playing around with different nasal and full face masks.

Figures for this week   AI 1.8   HI 5.7

For the month            AI 3.1    HI 8.9

Most of the time my nose feels bunged up so I'm still trying to find ways of improving on that.

 

Lisa

 

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Permalink Reply by Tigers Fan on March 29, 2011 at 10:50

Hi Lisa

 

Your figures are as I suspected - mediocre good/bad. I don't know the algorithm for the Autoset Spirit II - among others - but can suggest a worth while experiment, anyway - based on my personal experience.

 

My theory is that the low 4cm setting, even ramping up to 7 or 9, permits apnoeas or hypopnoeas to occur. The machine then cranks up the pressure to save your life - and stays there to make sure and doubly sure that it has been successful. Yours blows at 20cm at this stage and guess what - well, you don't need to guess, you know fine well! Gales!!

 

My solution is to increase the minimum pressure Pmin to a couple of cms below your 90 or 95% pressure (whichever your machine records) and to decrease the maximum pressure Pmax to a couple of cms above your 90/95% pressure. Narrowing the operating band in this way prevents some/most/more events from occuring in the first place whilst still leaving room for the machine to do its APAP job with those that do. With the reduced Pmax, the machine might not deal with them all and you'd wake with a start - rather than with a gale as at the moment.

 

I restricted my APAP band ever tighter, chasing ever lower AHIs untril I finished up on CPAP with consistent AHI < 1. Yours is 7.5 for the week and 12.0 for the month. You should aim for 5 or below.

 

For your bunged up nose, you could try a few drops of Olbas Oil on a pad by the air intake of your machine. Not everyone likes/tolerates the small. If that is no good, nasal irrigation might work. I use a Sinupulse Elite and swear by it. It clears my sinuses and I've not had a cold or flu in the years I've been using it.

 

TF

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Permalink Reply by Kath Hope on March 29, 2011 at 12:07

The Olibas Oil works a treat, and I've also had the jars of aromatherapy on the bedside table.  I've got a Sinupulse and it doesn't seem to make much difference to me, although it was helpful for the douching after my operation.  I'm wondering if it depends where and why the stuffiness is there.  With me it was caused by a deviated septum and enlarged turbinates, rather then sinus problems.  However, the absolute best thing I've been using, are the Breathe Right Strips.  They can be bought from Ebay, but I've had some better offers from Boots with buy one get one free.  The really do work for me!

Tigers Fan said:

For your bunged up nose, you could try a few drops of Olbas Oil on a pad by the air intake of your machine. Not everyone likes/tolerates the small. If that is no good, nasal irrigation might work. I use a Sinupulse Elite and swear by it. It clears my sinuses and I've not had a cold or flu in the years I've been using it.

 

TF

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Permalink Reply by symmit on March 29, 2011 at 19:05

I'm controlling my own therapy completely now, and I've settled at the following which gives me a consistent AHI of 0 to 2 and the oximeter backs this up. Auto mode, minimum 8, maximum 14.

 

In the 5 months I've been on CPAP it's never gone above 13.5 set to auto, and if I drop below 8 the AHI goes up and I don't sleep as well.

 

If I'm having problems sleeping due to congestion, I'll use a full face mask, if I'm suffering sinus irritation I'll drop the minimum to 4 and then increase it 0.5 every night until it's back to 8.

 

I've tried it at fixed and flex modes but find fixed is a compromise and flex is annoying due to using the sleepweaver mask, it moves around with the pressure changes!

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Permalink Reply by RockRpsgt on March 31, 2011 at 1:01

Auto-PAP 8-10. I use an auto-PAP because I found out that I have a higher AHI when I sleep during the day then at night. This has baffled many of my medical directors. Many things can affect the way we sleep including biometric pressures and the cycles of the moon. I slept hoorible last week when the moon was so close. When sleep medicine first started the study was a 3 day trend finding process. Economics and the insurance companies have played a huge role in ending this process.

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Permalink Reply by Kath Hope on March 31, 2011 at 11:07

Crikey, didn't realize the moon could have such an effect - it was a bad week for me too! 

Totally agree that the sleep study should be more than one night to get a more accurate diagnosis.  There are so many people who have been told they don't have sleep apnoea as they didn't quite meet the criteria, but with a further night at least the results might have been different.

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