Introduction & require advice please

[zonker]

Clinicians in the UK rather frown on patients changing their pressures. Some even forbid it outright. And they do so because of 'duty of care'. And also nowadays, they increasingly worry about being sued.

pardon the interruption. could you explain further about "duty of care"?

thank you.

[Zokaluse]

Clinicians in the UK rather frown on patients changing their pressures. Some even forbid it outright. And they do so because of 'duty of care'. And also nowadays, they increasingly worry about being sued.

pardon the interruption. could you explain further about "duty of care"?



thank you.

Probably best for you to read https://www.rcn.org.uk/get-help/rcn-advice/duty-of-care as there’s quite a bit to it.

[rick blaine]

Hi Zokaluse,

I've never quite worked out how to do that quote thing either. I use my version.

Zokaluse said: "I go back in 6/8 weeks, I’ll receive a letter."

OK. Thanks for the info.

Zokaluse said: "I don’t seem to be able to do anything other than a mask fit test."

Yes, that's because key changes are made in the 'clinician's area' of the machine. And ordinarily, patients don't have access to this area.

But getting into this area is done by a combination of button presses. Which combination is slightly different on different machines. And which combination can be found in the clinician's manual – a copy of which you can find quite easily on the internet.

And as I said, changing their pressures themselves is what many patients in other countries do.

Zokaluse said: "She [the nurse] can log in to my machine & alter any settings."

That means you live in an area of the UK where the policy is to issue machines with the cellular-phone chip in, and I presume the nurse turned that function on. You should see the word 'Air' lit up on the screen of your machine.

When it is, then the nurse can both read your progress and adjust your pressures at any time. For the moment, it might be diplomatic to give her time to do that. AFAIK, there isn't a set interval for that. But a reasonable time might be: if you give her a week to 10 days.

Zokaluse said: "Should I share with her my Sleepyhead report?"

Well, you can if you want, and your nurse might be interested in it – she might or might not know about Sleepyhead because it's shareware, and is not 'official use'. The medical profession uses proprietary software that they buy direct from ResMed, and I assume the nurse will be more familiar with that.

My best advice at the moment is: your nurse seems pretty switched on. Let her do her job.

[Zokaluse]

Hi zokaluse,

I've never quite worked out how to do that quote thing either. I use my version.

zokaluse said: "I go back in 6/8 weeks, I’ll receive a letter."

OK. Thanks for the info.

zokaluse said: "I don’t seem to be able to do anything other than a mask fit test."

Yes, that's because key changes are made in the 'clinician's area' of the machine. And ordinarily, patients don't have access to this area.

But getting into this area is done by a combination of button presses. Which combination is slightly different on different machines. And which combination can be found in the clinician's manual – a copy of which you can find quite easily on the internet.

And as I said, changing their pressures themselves is what many patients in other countries do.

zokaluse said: "She [the nurse] can log in to my machine & alter any settings."

That means you live in an area of the UK where the policy is to issue machines with the cellular-phone chip in, and I presume the nurse turned that function on. You should see the word 'Air' lit up on the screen of your machine.

If it is, then the nurse can both read your progress and adjust your machine at any time. For the moment, it might be diplomatic to give her time to do that. AFAIK, there isn't a set interval for that. but a reasonable time might be a week to 10 days.

zokaluse said: "Should I share with her my Sleepyhead report?"

Well, you can if want, and your nurse might be interested in it – she might or might not know about Sleepyhead because it's shareware, and is not 'official use'. The medical profession uses proprietary software that they buy direct from ResMed, and I assume the nurse will be more familiar with that.

My best advice at the moment is: your nurse seems pretty switched on. Let her do her job.

Thanks Rick, yes I’d feel better to let her continue than fiddling with the machine myself so soon.
She hadn’t heard of sleepyhead when I mentioned it but My Air which seems pretty basic after seeing sleepyhead.

Do you have any idea on the CA events?

Had a terrible night with the mask last night.. wish I’d not fiddled with the straps as was perfect til 6:30am on night 1, perfect but hurt my nose night 2 then last night it was leaking air as soon as I put it on then had me awake too many times to mention despite doing what the nurse said to if air leaks, ended up taking it off after 5 hours & stupidly I’d forgotten to put the SD card in! Going to have a play with mask & machine in the day today so I’m not fiddling getting stressed with it at bed time.

[Pugsy]

CA events in SleepyHead are Clear Airway events....if you were using ResScan software those CAs would be called central apneas.
SleepyHead was first developed for Respironics reporting (other brands made compatible later) and Respironics uses the term clear airway apnea instead of central apnea.
Technically the airway is open but no air is moving when we have a central apnea....as opposed to an obstructive apnea event where the air flow is either totally blocked or partially blocked by soft tissue collapse in the airway.

Hold your breath for 10 seconds....that's essentially a 10 second central apnea. The airway is open and you could breathe if you made the effort to move air but you aren't making the effort while you are holding your breath.
A few central flagged events isn't a big deal and normal. Some centrals are just normal sleep onset or sleep stage transition centrals.
Some of what you see flagged aren't real apneas in the sense that you were probably awake when they were flagged.
Our awake breathing is very irregular when compared to asleep breathing. These machines don't have any way to measure sleep status....they only measure air flow and they can and will flag awake breathing irregularities by mistake as some sort of apnea event.
Commonly false positive central apneas but there can also be false positive OAs and hyponeas get flagged.

When someone tells me they didn't sleep soundly and they had multiple awakenings or time spent with mask and machine on...
and they have have maybe more centrals than we would normally expect to see as normal then I always suspect that a sizable chunk of the AHI is likely more related to false positive flags from the crappy sleep quality. So the higher CAs/Centrals are really more of a symptom of poor sleep than the cause of any problems. Fix the crappy sleep and often the centrals will simply reduce to a nice normal occasional real (and quite normal to have) sleep onset central.

This is especially true with someone very new to cpap therapy. Let's face it...most of use find it odd and unnatural to sleep with all this stuff on our faces so our sleep quality is far from optimal at the beginning. Once we get more used to things and mainly get any problems with the mask dealt with then we start sleeping more soundly and the false positive chances are reduced....and the AHI reduces.

You are reporting known problems with leaks and mask fit....whatever AHI you are seeing is very likely going to contain a sizable chunk of false positive flags. Until you tell me that you slept soundly and don't remember very many awakenings I don't worry about the AHI being reported because I don't trust the results with the known awake time with the mask and machine on.

Finding the right mask and getting it fitted or situated just right is by far the hardest part to all this therapy IMHO.
If we aren't comfortable then we simply can't sleep so great. With that not so great sleep there is a strong chance of false positive flagged events...so I wouldn't worry too much right now about the AHI or type of apnea events when you know for sure you didn't sleep very well.
If you want to learn about how to spot real asleep vs awake false positive flagged events you can play with SleepyHead and zoom in on the air flow rate graph line. These videos will explain how and what to look for...watch them all.
http://freecpapadvice.com/sleepyhead-free-software

Back late last fall I had a night where my AHI was 3.4....unusually high for me and with a nice normal mix of all the 3 types of events ....CAs/centrals and OAs/obstructive apneas and hyponeas. I took the time to go look at each flagged event and not a single flagged event was real in the sense that I was asleep. They were so obviously related to arousal or awake breathing irregularities that it was easy to see. Not even iffy or hard to know for sure...they were blatantly arousal breathing related.
That night I had an especially bad night in terms of sleep in general. Lots of tossing and turning because of back pain issues. I just couldn't get comfortable no matter what position I was in. Totally unrelated to mask issues....everything to do with just being in pain and not sleeping well. So essentially my back pain caused all the false positives and crappy sleep.....the AHI was higher than usual but totally unrelated to airway issues and simply a by product of crappy sleep in general. There are a lot of causes for crappy sleep besides sleep apnea. The machine doesn't do much to help my back pain....sure wish it could but it only fixes airway related problems.

You are very new to cpap therapy....worry about getting to sleep and staying asleep first and the AHI second because when you know you didn't sleep well then there is a high probability that a sizable chunk of that AHI is not real but instead is a large number of false positives muddying up the results. Fix the mask issues....comfort and leak first....then once you can say you slept soundly for the most part then we worry about the number of any sort of flagged events you might still be having.

[zonker]

Probably best for you to read https://www.rcn.org.uk/get-help/rcn-advice/duty-of-care as there’s quite a bit to it.

thank you for the link. i was mainly wondering if this is a legal requirement and your link answered that.

[Zokaluse]

CA events in SleepyHead are Clear Airway events....if you were using ResScan software those CAs would be called central apneas.
SleepyHead was first developed for Respironics reporting (other brands made compatible later) and Respironics uses the term clear airway apnea instead of central apnea.
Technically the airway is open but no air is moving when we have a central apnea....as opposed to an obstructive apnea event where the air flow is either totally blocked or partially blocked by soft tissue collapse in the airway.

Hold your breath for 10 seconds....that's essentially a 10 second central apnea. The airway is open and you could breathe if you made the effort to move air but you aren't making the effort while you are holding your breath.
A few central flagged events isn't a big deal and normal. Some centrals are just normal sleep onset or sleep stage transition centrals.
Some of what you see flagged aren't real apneas in the sense that you were probably awake when they were flagged.
Our awake breathing is very irregular when compared to asleep breathing. These machines don't have any way to measure sleep status....they only measure air flow and they can and will flag awake breathing irregularities by mistake as some sort of apnea event.
Commonly false positive central apneas but there can also be false positive OAs and hyponeas get flagged.

When someone tells me they didn't sleep soundly and they had multiple awakenings or time spent with mask and machine on...
and they have have maybe more centrals than we would normally expect to see as normal then I always suspect that a sizable chunk of the AHI is likely more related to false positive flags from the crappy sleep quality. So the higher CAs/Centrals are really more of a symptom of poor sleep than the cause of any problems. Fix the crappy sleep and often the centrals will simply reduce to a nice normal occasional real (and quite normal to have) sleep onset central.

This is especially true with someone very new to cpap therapy. Let's face it...most of use find it odd and unnatural to sleep with all this stuff on our faces so our sleep quality is far from optimal at the beginning. Once we get more used to things and mainly get any problems with the mask dealt with then we start sleeping more soundly and the false positive chances are reduced....and the AHI reduces.

You are reporting known problems with leaks and mask fit....whatever AHI you are seeing is very likely going to contain a sizable chunk of false positive flags. Until you tell me that you slept soundly and don't remember very many awakenings I don't worry about the AHI being reported because I don't trust the results with the known awake time with the mask and machine on.



Finding the right mask and getting it fitted or situated just right is by far the hardest part to all this therapy IMHO.
If we aren't comfortable then we simply can't sleep so great. With that not so great sleep there is a strong chance of false positive flagged events...so I wouldn't worry too much right now about the AHI or type of apnea events when you know for sure you didn't sleep very well.
If you want to learn about how to spot real asleep vs awake false positive flagged events you can play with SleepyHead and zoom in on the air flow rate graph line. These videos will explain how and what to look for...watch them all.
http://freecpapadvice.com/sleepyhead-free-software

Back late last fall I had a night where my AHI was 3.4....unusually high for me and with a nice normal mix of all the 3 types of events ....CAs/centrals and OAs/obstructive apneas and hyponeas. I took the time to go look at each flagged event and not a single flagged event was real in the sense that I was asleep. They were so obviously related to arousal or awake breathing irregularities that it was easy to see. Not even iffy or hard to know for sure...they were blatantly arousal breathing related.
That night I had an especially bad night in terms of sleep in general. Lots of tossing and turning because of back pain issues. I just couldn't get comfortable no matter what position I was in. Totally unrelated to mask issues....everything to do with just being in pain and not sleeping well. So essentially my back pain caused all the false positives and crappy sleep.....the AHI was higher than usual but totally unrelated to airway issues and simply a by product of crappy sleep in general. There are a lot of causes for crappy sleep besides sleep apnea. The machine doesn't do much to help my back pain....sure wish it could but it only fixes airway related problems.

You are very new to cpap therapy....worry about getting to sleep and staying asleep first and the AHI second because when you know you didn't sleep well then there is a high probability that a sizable chunk of that AHI is not real but instead is a large number of false positives muddying up the results. Fix the mask issues....comfort and leak first....then once you can say you slept soundly for the most part then we worry about the number of any sort of flagged events you might still be having.

Thank you for the detailed explanation ...makes a little more sense to me now & as one of my symptoms has been memory & feeling stupid I hope as I improve I’ll understand things more!

Thursday & Friday I felt I was awake most times of the nights so far & that was due to mask fiddling, one of the nights was more than than the other but I can’t remember how many times.

I’m going to do as you say & not look at sleepyhead until I have consistent full nights sleep once I’m used to & have perfected mask fit.

[Zokaluse]

Me again sorry!

The last few days I’ve woken with really really sensitive teeth, & what feels like a swollen tongue that feels tender all over.

I have top & bottom metal braces (have had them on for 6 months though & above symptoms are only since using CPAP)

I see my orthodontist every 5 weeks & my dentist every 3 months for check up & polish & clean & my teeth/gums are in good condition with no problems.

I can only put these down to the CPAP & wondered if anyone else had these symptoms & if they will ease off as I’m really missing my morning cuppa & lisp & dribble a bit when I talk for a few hours with the swollen tongue.

[rick blaine]

Have you bought the humidifier yet?

It's a long time since I didn't have a humidifier, but I remember clearly those first few months (back then I didn't even know there was a humidifier available ). And the air from the machine was both cold and dry.

And even with the best of dental hygiene, those two factors can make a difference.

The cold air will affect your teeth the same way that cold drinks and ice-cream will. And the fact that the air is dry may be what's causing your tongue to swell. That dry air dries out the mucosa of the throat – which allows any minor bugs to multiply.

I didn't have any tongue swelling thereby. But I did often have minor irritation (of the throat).

I suggest you call ResMed UK as soon as poss for that humidifier. If you ask, they will send it 'for next-day delivery'.

[Zokaluse]

I haven’t no but I shall do so today!

Today I woke and felt my tongue pushed really hard up against the roof of my mouth & over the inside of my top front teeth..I had an indentation mark that was a replica of the area it was pushed to so I’m wondering if that’s my bottom jaw closing more with the mask straps along the jaw pulling it in a bit & my tongue being swollen from the dry air making it too big for my mouth! Will see how it goes with the humidifier.
Thanks again Rick

[Zokaluse]

I did call res med who asked me a few questions relating to which hospital & if I pay for my treatment privately & then told me to call my hospital as they will provide me with the humidifier.
I didn’t get around to calling the unit until today & I was called back within ten minutes of leaving my message & was given 2 times I could pop in today to collect a humidifier & for her to tell me the instructions. I was impressed at both the provision of it, the immediate call back & then going into a full hospital waiting room not needing to take a number ticket & being called by the same nurse I saw initially who then showed me how to change humidifier settings etc & then gave me the humidifier & the tube to go with it.
I can’t use it tonight as I forgot to buy bottled water.

[Janknitz]

Me again sorry!

The last few days I’ve woken with really really sensitive teeth, & what feels like a swollen tongue that feels tender all over.

I have top & bottom metal braces (have had them on for 6 months though & above symptoms are only since using CPAP)

I see my orthodontist every 5 weeks & my dentist every 3 months for check up & polish & clean & my teeth/gums are in good condition with no problems.

I can only put these down to the CPAP & wondered if anyone else had these symptoms & if they will ease off as I’m really missing my morning cuppa & lisp & dribble a bit when I talk for a few hours with the swollen tongue.

There are a few things that might explain this:

1. mouth breathing causing you to have a really dry mouth. Even a humidifier won't help much with this, trying to learn to keep your mouth closed during sleep will help (practice all day when you are not eating or talking to keep your tongue on the roof of your mouth and lips sealed). An exceptionally dry mouth is miserable.

2. Your mask may be putting pressure on a facial nerve or causing a shift in your TMJ. I would recommend taking your mask to the dentist or orthodontist and have them take a look at you wearing it to see if something might be pressing on a nerve or shifting your TMJ.

[zonker]

I did call res med who asked me a few questions relating to which hospital & if I pay for my treatment privately & then told me to call my hospital as they will provide me with the humidifier.
I didn’t get around to calling the unit until today & I was called back within ten minutes of leaving my message & was given 2 times I could pop in today to collect a humidifier & for her to tell me the instructions. I was impressed at both the provision of it, the immediate call back & then going into a full hospital waiting room not needing to take a number ticket & being called by the same nurse I saw initially who then showed me how to change humidifier settings etc & then gave me the humidifier & the tube to go with it.
I can’t use it tonight as I forgot to buy bottled water.

you can still use it. bottled water(are you taking about distilled water?) is merely a convenience though it's what you want to use long term. one night without it won't cause any harm.

good luck!

[zonker]

I did call res med who asked me a few questions relating to which hospital & if I pay for my treatment privately & then told me to call my hospital as they will provide me with the humidifier.
I didn’t get around to calling the unit until today & I was called back within ten minutes of leaving my message & was given 2 times I could pop in today to collect a humidifier & for her to tell me the instructions. I was impressed at both the provision of it, the immediate call back & then going into a full hospital waiting room not needing to take a number ticket & being called by the same nurse I saw initially who then showed me how to change humidifier settings etc & then gave me the humidifier & the tube to go with it.
I can’t use it tonight as I forgot to buy bottled water.

you can still use it. bottled water(are you taking about distilled water?) is merely a convenience though it's what you want to use long term. one night without it won't cause any harm.

good luck!

[rick blaine]

Hi Zokaluse,

The NHS is doing you proud.

OK, now you're ready for the 'what kind of water?' bit.

Since you live in Surrey, you have 'hard to very hard' water (source: the Pure Water People website.) And if you use the water out of the tap on a regular basis, the humidifier tank will 'fur up' with calcium carbonate.

And ... it's quite easy to get off. Every two or three weeks, when you see the deposits have built up, just soak the tank in one part of white spirit vinegar to three parts of warm tap water – for about 20 minutes. And then rinse.

If you don't like the smell of vinegar, then fresh lemon juice will do just as well – but you might need to soak the tank for a bit longer – about an hour.

You mention bottled water, and that is a good idea because the best brands have a much lower level of calcium carbonate in them, so the furring up, while it still happens, it does so at slower rate.

I use Sainsbury's Still Scottish Mountain Water because it is very, very soft. And if you buy the family pack, you get 8 litres for only £1.45.

Other prices: 568 ml bottle of Sainsbury's distilled malt vinegar, 50p. Sainsbury's lemons, 35p each.

PS. Do not – in the UK – use the kind of 'distilled water' sold in Halfords or a petrol filling station shop. It's not guaranteed to be sterile or medically safe. You can, if you're bonkers, buy medically safe distilled water from the likes of Boots or Lloyds. But (a) they have to order it in specially, and (b) it costs a ridiculous amount of money.

Nope, Sainsbury's Still Scottish Mountain Water really is the best bet for any APAP user in the UK.