What's your pressure?

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Permalink Reply by Lisa on March 31, 2011 at 17:02

Sorry been busy last couple of days and only just got back to this discussion. Re my not very great AHIs - you could well be right, TF that my pressure settings, being between 4 and 20, are too wide open.  Your own figures are very impressive. I will try a narrower banding and let you know how that goes.  Last night my AHI was 5.5 - this was without making any change to the pressure settings, but my nose was clearer.

Olbas oil doesn't work for me, I'm afraid - inhaling it makes my nose feel more stuffed up. I do use a saline spray - not sure that it makes a lot of positive difference, but it doesn't make things worse. I find menthol crystals helpful and like Symmit I'm using a full face mask instead of nasal if I am feeling really congested.

 

 

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Permalink Reply by RockRpsgt on April 2, 2011 at 3:10

Lisa, How long have you been at that range? The only way that could be justified would be for an exploratory procedure.

 

Tigersfan, Wouldn't your APAP allow you more access to your numbers? They can also be used in straight PAP.

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Permalink Reply by Tigers Fan on April 2, 2011 at 10:15

Hi Rock

 

In another thread you asked how things work over here. One of the ways we work is by gross incompetence - my hospital sends everyone home with a CPAP set at 10cm, regardless; another common method is to send folk home with their APAP (those lucky few who get an APAP, that is) wide open - 4 to 20cm. Not every clinic is like this - just lots of them. Private clinics train their staff and offer a service.

 

You are right - my APAP would give me access to my numbers and I used it for the first year for that very purpose. I finished up using it as a CPAP so when NHS offered me a CPAP, I accepted. Keep my APAP for when I want access to my numbers but thge longer I use PAP the better I know my needs without using numbers, a tweak up or down does it. I can always use the APAP but for simplicity, I use an oximeter if I feel the need for numbers. I take a pragmatic approach, does a tweak improve my sleep, yes or no, QED.

 

When I started PAPing only three years ago, I was diagnosed with OSA and told there was no funding for a machine - well, one in ten received funding after a committee had cost more than the machine to decide if one was worthy or not. This process took upward of three months, during which time it was unlawful to drive because of the diagnosis. I bought my APAP in the States, set it myself and was on treatment and able to drive within three days. A year later, NHS had caught up with CPAP funding and were dispensing them - gave me a CPAP set at 10cm whereas I was using an APAP set at 15 - 19 cm with the ramp starting at 10cm.

 

The strange thing is this - were I to use the NHS prescribed setting of 10cm for four hours or more per night, I could lawfully drive my car. The fact that I would be virtually untreated for OSA would be irrelevant because I would be "compliant"!

 

TF

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Permalink Reply by RockRpsgt on April 2, 2011 at 10:35

They are trying to do the same thing over here. This is an ongoing battle between the sleep industry and the insurance companies. Sending someone home with an APAP set wide open is just wrong!

 

Unless you happen to hold a commercial driver's license their is no real penalty for driving with untreated apnea over here. We are seeing more people get out of liability with a claim of apnea then are being punished. Crazy how the world works.

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Permalink Reply by Jackie on April 2, 2011 at 12:49

I have been struggling along for about a year now - and the talk about pressures and ahi's and using a  reading etc leave me feeling very lost and ignorant.

(as I've said before, but please forgive repetition) My machine was set according to the one night test thing - starting at 4 and ramping to 10 - which one I got used to the feeling felt not enough and a nurse upped it slightly but I don't to what

- I use a resmed escape 8 - how do I tell what my pressure is?

I've read through the paperwork you get with machine, but it doesn't tell me much at all.

I have been told that I still snore on and off when using the machine but whether it is when masks leaks or not enough pressure I do not know.

What is AHI ?

The hospital follow ups are a couple of minutes and far between (had two in 12 months - one with doctor who confessed you can still snore with a cpap, but really didn't help me - 'we get new masks in all the time there will be something that suits you eventually') and it was only Kath giving me the confidence to press for new masks and what to ask for that helped at last visit (I go back end of May again).

 

Please forgive my ignorance, I desperately want to learn and help myself, but  I get confused very easily and have a terribly memory and find that things do not get absorbed into my grey matter these days - along with several other health problems and not much sleep,  I have a tumour which gives me bad headaches and eye ache which doesn't help so I guess I need a Jacks Idiot guide?

Thank you to everyone for opening my eyes ! (well, the one I got left anyway lol)

hugs Jacks xxx

 

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Permalink Reply by Tigers Fan on April 2, 2011 at 13:15

Hi Jacks

 

AHI is the measure of success or being tired still. Apnoea Hypopnoea Index is the number of events you had during a night divided by the number of hours you were wearing the kit. Thus, it is an avarage for the night, and tthen over seven days and a month.

 

As a patient, you are "not allowed" to know your AHI. If your Google your machine model and 'clinicians' menu' you'll pretty soon find out how to access the data you need. American sites are the most forthcoming usually (they don't take kindly to "not allowed"!)

 

Trick about DIY CPAP is that you need to know what you are doing so I suggest, as you are starting from a place of self-confessed ignorance, you keep asking questions here.

 

TF

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Permalink Reply by Caveman on April 2, 2011 at 13:17

Here we go - it's really complicated so brace yourself - you hold down the 'down' and 'right' keys for a few seconds until the machine announces it's in the CLINICIANS MENU - then work your way through the options! My S8 was set to 8 15 years ago, these days I'm on 12 (adjusted by my good self) and I'm doing much better, feeling awake and with better compliance. I'd really like an oximeter to check all this properly - does anyone have suggestions as to a good one suitable for apnoea monitoring?

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Permalink Reply by Tigers Fan on April 2, 2011 at 13:40

Hi Caveman

 

Do S8s not have AHI info in the Clinicians' Menu? OSA monitoring is best done with a machine that records the data you want. In a layman's hands, oximeters are a guide to the quality of your therapy.

 

An oximenter does not monitor apnoeas. The oximeter definition of an event is different to an APAPs definition of an event. Having said that, you can use an oximeter to monitor your quality of sleep by recording the oxygen de-sats and watching your pulse at those events.

 

You can buy Chinese oximeters on eBay at a resonable price. Outfit called Contec or something like that. Excellent aftersales backup.

 

TF

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Permalink Reply by Steve McGill on April 2, 2011 at 13:55

Only been using my ResMed S8 escape II six week and all I get is a compliance user menu. How long I have been using it in hours and how many days I have used it. I have had four masks and now testing  ResMed mirage FX.
My pressure as been set at 9.6cm H2O. Iam still feeling sleepy on a morning and tired. Can I get some reading material and stats of what I should be aimming for. I would like t access the clinic menu on this machine to set up a database to monitor progress. Hospital said they would call me in six months and get a progress report. Then would see me in 12 months. Is this the norm or is it the exception.

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Permalink Reply by Jackie on April 2, 2011 at 18:11

When you apply for car insurance here you are asked if there are any medical conditions that dvla should be aware of and sleep apnoea is one of them so if you cannot honestly state DVLA aware with no restrictions you are lying  - if you lie on your insurance form then you would not be insured if the worse happens or even if  sued by another driveror  pedestrian and possibly lose your home etc. Worse still kill someone - imagine living with that?

Undiagnosed drivers of course can still have accidents - but this is where awareness of symptons to everyone and the GP's etc comes in - Kath has posted information of a 3 year mission to raise awareness plan on another thread, this could help in the battle. Maybe it would help someone to nag someone into going and getting checked out?

 

http://hope2sleepguide.co.uk/xn/detail/6381638:Topic:1346?xg_source...

RockHinkleRpsgt said:

They are trying to do the same thing over here. This is an ongoing battle between the sleep industry and the insurance companies. Sending someone home with an APAP set wide open is just wrong!

 

Unless you happen to hold a commercial driver's license their is no real penalty for driving with untreated apnea over here. We are seeing more people get out of liability with a claim of apnea then are being punished. Crazy how the world works.

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Permalink Reply by Caveman on April 2, 2011 at 23:15

 

My S8 escape is pretty basic - but surely all I need to know is whether I'm still having low oxygen events. To this end won't I need an oximeter capable of all night monitoring and data download? - most of the finger ones you see on Ebay don't look suitable, they seem to be targeted at one-off short term monitoring. Hence the query, I'd rather buy one that is recommended and proven to work than make an expensive mistake.

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Permalink Reply by Kath Hope on April 2, 2011 at 23:25

It's a shame it's not easy to get hold of the software for the S8, but like you say, an oximeter would be of great benefit.  I have the Contect CMS-50D Plus, which comes with the cable and software, and the software's fairly easy to use which I'm told can be a problem with some makes.   It's a finger one and needs taping to the finger when you go to sleep.  The one I wish I'd got is the Contec CMS- 50F which is the wrist version, and I'm thinking would be better for sleeping with.  John Hedley, a member on here has that one, so I'm sure he'll talk to you about it. 

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