Newbie Greetings, findings and sadly, questions

[SolisQuaesitor71]

Hi everybody. I'm a 46 year old male and started receiving CPAP therapy on 2nd October. My AHI was 38 and after my overnight test it was found that my oxygen levels were dropping to 60%.

I haven't been working since July as i got so tired and confused that i could barely function and felt like a zombie. Receiving my CPAP machine i thought would be like an instant cure, like taking a tablet or having an injection. I find that the treatment is as bad as the problem in reverse - except that i'm at a reduced risk of a stroke now.

I've had numerous visits to my hospital (i'm in the UK so they supply the System One FOC) and after having a fixed CPAP which gave me problems (couldn't get to sleep, air swallowing etc) they exchanged it for a System One Auto which is much better. However despite having a nice fleece cover for my Cpap Pipe and the humidity set to full, i still get cold, dry air coming through which i notice in the morning. I turned off the System one setting in the CPap and this then gives rain out and a bubbling pipe which wakes me up... anybody else found this or a solution??

The hose is far too long IMO, 6ft long and means that the machine has to be near the floor at the end of the bed. I improvised supporting the Cpap pipe by using metal Coathangers and slotting them between the matress and the bed base, using the hanger 'hooks' to clip the pipe into which ensures a good straight downwards transition to the machine on the floor.

Masks... well i'm a mouth breaker and i'm already on my 3rd mask. The first full face mask (Resmed i think) gave me a dent in my nose so i was given an Amara View which i initially thought was a great idea, until the pressure ramped up and blew air out of the nose seals.. this resulted in me tightening the straps so that my nose slipped in to the gap and gave a pressure sore - so now i have a nice scabbed over and bloody nose there. Final mask is a Resmed Quattro so i now officially have a knob on my head at night. This seems to be the best seal for me however i'm now getting the early signs of a pressure sore at the top of my nose so it won't be long until i look like i've been in a fight.

It's quite depressing to have all of this expensive equipment which fundamentally 'kind of' works. I know that it's better than nothing but like everyone i'd rather be off it altogether.

So i have a plan....

I've already lost 2 kilo's (i was 82 kilos) which i can only attribute to eating less generally and possibly an effect of having some sleep at night (id never have thought that i'd feel better having a constant 4hours sleep) so i'm working to lose more weight in the hope that i can improve my condition.

Also, i noticed that my blood pressure has dropped (i have been having treatment for hypertension for 3 years) and after visiting my doctor they agreed to try me with half my usual dose of tablets which seems to be working (i did have a bp of 155/105 without tablets) and my BP is now 103/94 on a half dose so there is evidence that Hypertension isn't necessarily just an age thing..... WHICH IS WORRYING as i said to my doctor, they routinely test people at age 40 for BP and if it's high they stick you on tablets without investigating a cause.. i told the Doc that if they'd asked about how i sleep there's every chance this would have been caught earlier.

My Hospital surprised me as well. The NHS here in the UK can be great and in my situation is sure paying me back a bit for all of my contributions over the years. However as my Sleep Practicioner agreed there's a lot of hit and miss with CPAP treatment and i cringe at the wastage created in ensuring the a person like myself has the correct balance. After all, i now have a machine worth about £1400 (with the humidifier) and i'm on my third mask (about £140/each?) plus the consulation costs.. there must be a better way.

Anyway, i hope i can reach someone here, i'm sat here after 5 hours sleep with nobody to talk to as everybody else is still asleep and it's hard sometimes to talk to people. My partner is now kindof understanding but at first was quite dismissive pointing out 'you've had this for three years and only now you have to be off work?'. Quite upsetting at the time, does anyone else find that this is trivialised?? I don't even know how i can return to work, they only want me back when i'm 100% but i can't see much light at the end of the tunnel so don't know what to do.. some nights good, some absolutely hellish (i've even ripped my mask off on occasion and just tried to have an apnea nights sleep so that in the morning i at least 'think' that i slept, albeit at the expense of a shitty day).

Well, rant over with. I'd like to think there's something back there which helps someone, or maybe not.

Regards

[Julie]

Hi - I strongly suggest that you send a PM - exactly as I have it below, to

rick blaine

who is in the UK and familiar with your system as he'll be in a better position to advise you re finding help, equipment, fitting, etc.

Sorry to hear you're having all that trouble, but it does sound fairly typical and most of it can be addressed with a little patience (I know you're running out) and direction.

Please come back to this thread if you have any trouble.

[ajack]

for the rainout, keep using the hose cover, you just play with the humidity setting, till you get a balance. You can also use various sheets of insulation material to wrap around the hose before putting on the cover. You can also put a lot of the hose inside a pool noodle, you put a slit down the side. I can't find the picture if it at the moment

what machine do you have, you can get the clinical manual from the link on the top of the page at this site, your machine may work with sleepyhead if it has a SD card.
http://www.cpaptalk.com

[rick blaine]

Hi SotisQuaesitor71,

Let's see if I can give you some information on the various points you raise.

1. You don't say which part of the UK you're in and which foundation trust hospital you go to for sleep apnea treatment - but it would help me if you did. Although there are national guidelines, there are local variations that I might be able to tell you about.

2. You say "there's a lot of hit or miss with CPAP treatment" (in the UK), and I don't think that's quite right. What there is, is quite a recent and sizeable growth in the number of people being referred to sleep medicine departments for assessment and treatment.

Most GPs now in practice weren't taught much about sleep apnea (other than it existed). Twenty years ago, machines were bulky, costly, and noisy, and treatment was only available in Edinburgh (Scotland) and Bristol (England). And if people in the UK were diagnosed with sleep apnea, very few people got treatment for it.

Now, UK GPs - even if they don't all know the finer points - they do know that treatment is available, with machines that are compact, cost-effective, and much quieter. And said treatment is, for most patients, highly effective.

So they are referring more patients ... which means that sleep medicine departments are seeing more people. For example, here in Gloucestershire, they're seeing 2,500 new patients a year.

I would put any admin glitches down to the fact that this area of treatment is growing.

3. When you say "hit or miss", what I think you're really saying is that getting a diagnosis and being issued with a machine is only the beginning. And that's there's quite a bit to getting the treatment to work for you.

Welcome to the club.

I don't think you'll find too many people on this forum - or users anywhere - who haven't been on a learning curve to get to 'the best fit' - for them.

So, if you'll be patient (ho, ho), let's see if we can help you towards that objective.

4. You say they gave you a fixed-pressure machine, but that gave you problems, so they switched you to an auto-adjusting one.

Right there, you may not know it, but you're very lucky. The NICE guidelines are to supply only a fixed pressure machine, and that's all that most NHS patients get. In most UK hospital areas, patients who have problems using a fixed-pressure machine have to do what I did, and buy their own auto machine. (The sleep medicine department will sign the scrip.)

So count your blessings.

But now that you have been issued with, on a long-term loan basis, an auto-adjusting machine, there is the business of finding out the best pressures to set it at - minimum pressure and maximum pressure - to get the best effect for you.

Now, I have to be careful here, because there are rules about what I, living in the UK, can say to you, living in the UK, about you altering or varying your medical treatment. (And these rules apply regardless of the communication medium.) That's because I am not a nurse or a doctor. And even I were, you are not my patient.

So your first port of call should be your sleep medicine department. They might raise your minimum pressure from the factory setting of 4 cm to something like 1 or 2 cm below your average (they'll be able to tell from the SD card in your machine what your average is). And given what you say about swallowing air, they might lower the minimum from 20 cm to, say, 15.

I can tell you as a journalist that there is a way for any user to change these pressures theirself. I can tell you that I have done it (I was careful, and made only one small change at a time). And I can tell you: I came to no harm.

I can also tell you that - as far as I know - there is nothing in English law to stop someone from overseas telling you how to do it - and it would be up to you to be advised by them, or not.

There are many well-informed and highly-experienced people on this forum, and someone like Pugsy knows more, in my opinion than any hospital consultant. Hopefully, they'll chip in.

5. You say the machine plus power unit plus hose costs £1,400. I don't know where you got that number from. I paid Philips Respironics £600 for my 561 plus humidifier. And there's no VAT on this kind of medical equipment.

On masks, you're closer to the mark. The Amara and the Quattro are both around £120.

6. Mask fit. You can get cloth pads cut to shape to go between the mask and you, and these not only make for a better fit and fewer leaks, but they can minimise skin disturbance. For a UK supplier, go to:

http://www.hope2sleep.co.uk/shop.html

and see under 'mask comfort solutions'. They also have a hose hanger thing.

7. Mask fit, part deux. You may have the mask on too tight. The Quattro is supposed to sit on your face like a hovercraft, not be tightly 'battered down'.

Search on this forum for a post by Robysue for advice on how to get the best out of the ResMed Quattro.

8. Cold dry air. What you say suggests the humidifier is just plain not working. You don't say which Philips Respironics model they have issued you with (there's a model number on the bottom - and from what you say, it could be 451, 551, or 561*). If you have the kind of humidifier that clips on to the blower unit, both components need to be tested to see if the current is getting along to the warmer plate. Or even that the warmer plate itself isn't faulty.

9. I could say more about your weight and blood pressure, but this is already turning into a novel. I will just add this one thing. Some of what you've expressed above is just part of the process of adjustment. There is, I agree, a lot to take in. But it's not just a matter of information. Your body has to learn how to work in this new set-up too.

And you've been in treatment for only four weeks - don't expect too much too soon. A period of three months before feeling significantly better is not that unusual.

What you could keep in mind until that happens is: now that you're in treatment, you've stopped the harm that comes from untreated sleep apnea being done to your mind and body. In other words, you've arrested 'the descent', you've begun to stabilise. And from now on, you should find yourself going back up.

* And btw, it helps people help you if you fill in your machine and mask details.

[Pugsy]

Cold dry air....depending on model of machine the best option would be the heated hose if you are lucky enough to have a machine with the heated hose option available.
So really need to know the model number off the bottom of the blower.

For therapy tweaking ideas I would need specific information as to what is going on now....use the software to see for sure what is going on.
Don't know about the software??
https://sleep.tnet.com/equipment

For problem solving ideas would need specific questions or problems that you are having and maybe see the data that the software will provide.

So in general some basic questions to start with.
What are the primary complaints?
How many hours of sleep are you averaging...real sleep not laying awake with the machine on?
Are those hours of sleep fragmented with a lot of wake ups? If so, why?
Take any medications of any kind, if so, what?

Lots of things can affect sleep quality and thus how we feel during the day. Not all related to sleep apnea but people should at least evaluate the therapy in detail to see if the therapy is sub optimal or not. Can't expect to ever feel good if the therapy isn't optimal.
Gotta start somewhere and looking at the data from the software is the first place to start.

[SolisQuaesitor71]

Ok, lots of mainly very useful information. Thank you. In answer to and in response to some of your questions and comments;

What are the primary complaints?
How many hours of sleep are you averaging...real sleep not laying awake with the machine on?
Are those hours of sleep fragmented with a lot of wake ups? If so, why?
Take any medications of any kind, if so, what?

Thanks Pugsy, I'm averaging about 5 hours sleep per night. Fragmentation does happen sometimes, either problems with the humidity and a bubbling in the tube, other times with air leaking from the mask or simply feeling uncomfortable and claustraphobic with the mask (i had a bad encounter where i punched a dentist aged 7 for putting the gas mask on my face). I do take 100mg Losartan medication for my Blood Pressure.

Hi SotisQuaesitor71,

Let's see if I can give you some information on the various points you raise.

1. I'm located near Blackpool so Fylde Council is where my hospital is located

2. Y""ou say "there's a lot of hit or miss with CPAP treatment" (in the UK), and I don't think that's quite right."".
Rick i'm echoing the words from my health care nurse. I wasn't criticising and as i said the NHS can be great however the nurse did say that it's not a simple cost effective strategy opening masks in the hope that they'll be ok.

"Now, UK GPs - even if they don't all know the finer points - they do know that treatment is available, with machines that are compact, cost-effective, and much quieter. And said treatment is, for most patients, highly effective."
Well the point that i was trying to make is that MY Gp didn't ask any qualifying questions about my life history to give any indication as to whether i had sleep apnea or not. It was only when i was at the stage of falling asleep at work in a shop that the Gp referred me.

So I would put any glitches down to the fact that this area of treatment is growing.

3. When you say "hit or miss", what I think you're really saying is that getting a diagnosis and being issued with a machine is only the start. And that's there's quite a bit to getting the treatment to work for you.
No i'm not saying that at all, i'm saying that the treatment isn't easy to get to work with people, that's why there are such a plethora of different combinations of machines, masks, humidification issues, headaches, air swallowing, pressure sores and more that can't be necessarily 'treated'. It isn't a dig at the industry but a factual part of the 'treatment' which i'm sure everybody on here has had at least one problem with (hence this forum). If it was as simple as an injection in the arm we wouldn't be here would we.

4. You say they gave you a fixed-pressure machine, but that gave you problems, so they switched you to an auto-adjusting one.

Right there, you may not know it, but you're very lucky. The NICE guidelines are to supply only a fixed pressure machine, and that's all that most NHS patients get. In most UK hospital areas, patients who have problems using a fixed-pressure machine have to do what I did, and buy their own auto machine. (The sleep medicine department will sign the scrip.)

So count your blessings.
I didn't say or intimate that i was ungrateful for the treatment that is being offered to me, in fact i was happy to go out and source a machine myself however my healthcare nurse wanted me to have the one supplied to both save ME maybe wasting money and so that they could set it based upon my AHI.

But now that you have been issued with, on a long-term loan basis, an auto-adjusting machine, there is the business of finding out the best pressures to set it at - minimum pressure and maximum pressure - to get the best effect for you.
So your first port of call should be your sleep medicine department. They might raise your minimum pressure from the factory setting of 4 cm to something like 1 or 2 cm below your average (they'll be able to tell from the SD card in your machine what your average is). And given what you say about swallowing air, they might lower the minimum from 20 cm to, say, 15.

Lol well that's very interesting.. when i was at the hospital the other day the nurse gave me the Quattro mask and 'while i was there' decided to up the starting pressure from 4 to 6 as he said that my current nightly AHI wasn't where they wanted it (it was at 10). Well since he did that can you believe that my AHI's now gone UP!!?? Now it first went to 11, then last night was 12.

I can tell you as a journalist that there is a way for any user to change these pressures theirself. I can tell you that I have done it (I was careful, and made only one small change at a time). And I can tell you: I came to no harm.
I know, i saw him go into the adjustments menu but i've no wish to fiddle with it at the moment

6. Mask fit. You can get cloth pads cut to shape to go between the mask and you, and these not only make for a better fit and fewer leaks, but they can minimise skin disturbance too.
I will have a look at that site, i see a lot of Cpap suppliers but they're based in the USA

7. Mask fit, part deux. You may have the mask on too tight. The Quattro is supposed to sit on your face like a hovercraft, not be tightly 'battered down'.
The problem is that it may fit like a hovercraft when the pressure's light, but when it ramps up to stop the apneas it's like have a jet blast around my face.I'll search the forums though for the advice on fitting the Quattro.

8. Cold dry air. What you say suggests the humidifier is just plain not working. You don't say which Philips Respironics model they have issued you with (there's a model number on the bottom - and from what you say, it could be 451, 551, or 561*). If you have the kind of humidifier that clips on to the blower unit, both components need to be tested to see if the current is getting along to the warmer plate. Or even that the warmer plate itself isn't faulty.
I told the Nurse about the problem and took the machine to them to test at their request and they said it was working fine. The plate does warm up. The model of the main unit is 561p if that means anything.

9. I could say more about your weight and blood pressure,
You can as long as you don't call me fat.. and i have lost 2 kg

And you've been in treatment for only four weeks - don't expect too much too soon. A period of three months before feeling significantly better is not that unusual.
Oh cripes i don't want a 3 month wait.. i've been off work since july and am going crazy

What you could keep in mind until that happens is: now that you're 'in treatment', you've stopped the harm that comes from untreated sleep apnea being done to your mind and body. In other words, you've arrested 'the descent', you've begun to stabilise. And from now on, you should find yourself going back up.
Let's hope so

* And btw, it helps people help you if you fill in your machine and mask details.
I'll do that next.
Thanks

what machine do you have, you can get the clinical manual from the link on the top of the page at this site, your machine may work with sleepyhead if it has a SD card.
Yes it's a Resmed 561p and does have an SD Card in it. I've heard of Sleepyhead but will it really do me any good? The nurse said not to get too obsessed with the machine AHI and therapy hours numbers.

[Pugsy]

it's a .... 561p

Check the power brick and see if it is 60 watt or 80 watt.

For the cold dry air and rain out control...heated hose but you need 80 watt power brick and special lid on the humidifier.
Here in the US this is available...should be something like that in the UK with cpap online sellers.
https://www.cpap.com/productpage/pr-hea ... e-kit.html

I've heard of Sleepyhead but will it really do me any good? The nurse said not to get too obsessed with the machine AHI and therapy hours numbers.

Get SleepyHead. Especially important since your AHI went up instead of down with the pressure increase.
You need to know what kind of apnea events are happening and the only way to know that is with the software.

[SolisQuaesitor71]

Check the power brick and see if it is 60 watt or 80 watt.
Hi Pugsy, thanks for your reply. It's a 60 watt PSU

For the cold dry air and rain out control...heated hose but you need 80 watt power brick and special lid on the humidifier.
The hospital said that my humidifier can't take a heated hose as it doesn't have the connection for it and they don't supply it, so i have to make do with what i have
You also mentioned the heated tube upgrade kit which was interesting. At the moment a quick search shows its a lot more expensive in the UK (£199 ukp).

I've heard of Sleepyhead but will it really do me any good? The nurse said not to get too obsessed with the machine AHI and therapy hours numbers.

Get SleepyHead. Especially important since your AHI went up instead of down with the pressure increase.
You need to know what kind of apnea events are happening and the only way to know that is with the software
I'll get it but i still don't know how i'll understand it. Plus i'm concerned that it'll wipe the card and i'll be in trouble from the hospital.

[Pugsy]

I'll get it but i still don't know how i'll understand it. Plus i'm concerned that it'll wipe the card and i'll be in trouble from the hospital.

It does absolutely nothing to the contents of the SD card...nothing.
The only way you can mess up the card is if you manually tell your computer to erase the card and even if you did the machine will put all the data it has stored right back onto a blank card.

As far as understanding....not much to understand right now.
All we want to know is the event category breakdown of that AHI...

The AHI you see on the LCD screen is composed of 3 types of apnea events.

Central/Clear Airway apnea
Obstructive apneas
Hyponeas

It's real important to know what kind of events you are having so that you know the best way to deal with them.

Centrals or the ClearAirway apneas..the airway is open already and more pressure won't fix them and in fact can make things worse and that's why I said it's really important in your situation to know the type of event.
If your already high AHI was primarily central and more pressure caused more centrals it's not a good.

For right now all we want to do is figure out what kind of apnea events are happening.
There is a small percentage of people who start cpap and never had any central apneas who develop centrals as a by product of the cpap pressure.
You might be one of those....you might not but you need to know.

[SolisQuaesitor71]

I'll get it but i still don't know how i'll understand it. Plus i'm concerned that it'll wipe the card and i'll be in trouble from the hospital.

It does absolutely nothing to the contents of the SD card...nothing.
The only way you can mess up the card is if you manually tell your computer to erase the card and even if you did the machine will put all the data it has stored right back onto a blank card.

As far as understanding....not much to understand right now.
All we want to know is the event category breakdown of that AHI...

The AHI you see on the LCD screen is composed of 3 types of apnea events.

Central/Clear Airway apnea
Obstructive apneas
Hyponeas

It's real important to know what kind of events you are having so that you know the best way to deal with them.

Centrals or the ClearAirway apneas..the airway is open already and more pressure won't fix them and in fact can make things worse and that's why I said it's really important in your situation to know the type of event.
If your already high AHI was primarily central and more pressure caused more centrals it's not a good.

For right now all we want to do is figure out what kind of apnea events are happening.
There is a small percentage of people who start cpap and never had any central apneas who develop centrals as a by product of the cpap pressure.
You might be one of those....you might not but you need to know.

Lol thanks for the info but you've lost me.
Shall i upload something for you to see? Would that help? If so, how?

[Pugsy]

Actually for right now all I want is the AHI event category breakdown.
See this detailed report below? Can you just tell me what the AHI breakdown is for the night the AHI went to 12 after the pressure increase? No need for images at the moment.

I don't want to overwhelm you with lots of stuff to do....
Now for later if you want to share reports.
https://sleep.tnet.com/reference/tips/imgur
how to organize
https://sleep.tnet.com/resources/sleepyhead/shorganize
and examples of what we like to see
viewtopic/t103468/Need-help-with-screen-shots.html

[SolisQuaesitor71]

Actually for right now all I want is the AHI event category breakdown.
See this detailed report below? Can you just tell me what the AHI breakdown is for the night the AHI went to 12 after the pressure increase? No need for images at the moment.

I don't want to overwhelm you with lots of stuff to do....
Now for later if you want to share reports.
https://sleep.tnet.com/reference/tips/imgur
how to organize
https://sleep.tnet.com/resources/sleepyhead/shorganize
and examples of what we like to see
viewtopic/t103468/Need-help-with-screen-shots.html

Ok thanks Pugsy, it's late now so i'll upload tomorrow if thats ok.. hopefully better nights sleep tonight

[Pugsy]

You don't have to upload...you can just type it if you wish for right now.
If the AHI is primarily central/clear airway...then maybe seeing when they are happening would be useful.

Like this
as an example
AHI 6.2
CA/central index 3.5
Obstructive index 2.0
Hyponea Index 0.7
those 3 added together is the 6.2

[SolisQuaesitor71]

I had a bad night last night.. typical really. Mainly due to me adopting the 'hovercraft' seating of the Quattro mask.. air leaks everywhere after i'd fallen asleep and moved in the slightest (with the pressure ramping up). So not much sleep last night and feeling rather groggy. Still i took out the sd card, installed sleepyhead and here's the result.. doesn't mean much to me tbh..

[SolisQuaesitor71]

I also took a screen shot of this as well if it's of any use.. sorry about the image size, i'm not sure how to get it right