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The Snoring & Sleep Apnoea Forums

Not a good first night

Talk about all aspects of sleep apnoea. Request help from others with the same problem, tell your story, exchange tips & techniques ..
Sarah
Sergeant Snorer
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Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Sat Feb 17, 2018 10:17 pm

I have SleepyHead, thanks, and have been looking at the results. Lots of pretty graphs! It really shows the dramatic difference between the last two nights.

I also have a link to the manual so I have the power to change settings! :wink: Not that I'm planning to, but the possibility is there.

The next move is to replace the bandage with a proper chin strap so I don't look like a bandaged elephant! :lol:

Sarah
Sergeant Snorer
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Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Sun Feb 18, 2018 2:35 am

I forgot to answer your question about the pressure. The highest it reached last night was almost 13, mainly staying between about 9 and 11.

Strange how there seems to be a wind blowing in a FFM but I can't feel any air when using a nasal mask. I've actually been holding my breath to try to raise the pressure. After two hours feeling I can hardly breathe I've stopped for a break. The bandage didn't keep my mouth closed either so I need to start again. I may have to give up on bed and go back to the sofa. :-?

Sarah
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Re: Not a good first night

Post by Sarah » Sun Feb 18, 2018 11:46 am

Sofa is good! Five hours of sitting up sleep. :D

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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Mon Feb 19, 2018 4:03 pm

Remember, if you change mask type you will have to tell the machine if it is a modern one you have.
I think you said it was an ResMed Airsense10Autoset, if that is the case you will have to change the settings.
Also if you change from narrow to standard hose, though it will or should be set for that already.
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Sarah
Sergeant Snorer
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Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Tue Feb 20, 2018 11:20 pm

I discovered the mask settings the other day as I scrolled through the options so I had probably had it set wrongly before. What difference would that make?

I've tried the full face mask again with better/less bad results. The previous problems were due to leaking. When it is sealed I'm not in a gale and don't have the desperately dry mouth. However... it's very difficult to get a proper seal and I have to pull it extremely tight as anything less just doesn't seal. The bridge of my nose is so red and painful today. Also I still have to bandage my jaw closed as my mouth will slip out under the bottom of the mask if it falls open.

Totally different pressure graphs with the two masks: the nasal mask sits at a steady 9 to 11 all night but the full face mask swings up and down. It reached 20 last night which woke me up. AHI is also higher with the full face mask.

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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Wed Feb 21, 2018 1:10 pm

The mask settings affect the readout the Clinic will get, so it is important that you have the correct settings.
Also it affects how the machine works and will affect the pressure at the mask. if you think about it, the full faced mask has bigger vents to let exhaled breath out and clear it, this in turn will affect the pressure and flow to the mask, so the machines needs to know what size of hose you use, and type of mask, 1) To set the correct pressure and flow. 2) To give the correct readings in the data, 3) So that you get the best treatment that you can get.
The older machines did not have this and if you changed from Nasal Pillows to a FFM you had to get pressure increased.
When I had this done (though it was the other way round) it pressure was so high it lifted the Nasal Pillows right off my nose. I had a 300 mile trip just to get the pressure adjusted, after I needed it adjusted again I had a strop about how much it was costing me just to adjust the pressure. The Tech at the hospital showed me how to do it myself after that (with the permission of the consultant) who was a professor, now retired.

I told the local clinic I could adjust the machine myself to get the best treatment for myself, but they said I didn't know what I was doing. Cheeky nurse, I have more idea than she has. Might even have more idea than the doctor there as he is a Chest Doctor and not a Sleep Medicine Doctor, so I said I would look after myself, to which I was told I couldn't. I said as I left "It has never stopped me in the past and I have software to let me know how I am doing" to which she replied "We can keep an eye on you with this new machine, we can contact it and get your readings and adjust it if we need to" I replied saying "Well, you will see how good I get my treatment to then". She then shook her head as she could see she was getting nowhere with me. She said "We can adjust it to what we set it to". I said that if she did that she would be denying me the best treatment I could get" and she gave up.
She asked if I would send in my data card if they asked? I said "But you can download it" she then had to confess they were not set up to do that and they didn't have the time to do it.
I told her I would just put it into flight mode and they wouldn't know what I was doing. She then said /I was not the sort of patient she would like to deal with every day.
I don't think she thought I knew much about the machine(s) but I had done my homework.
I have a partial discharge from the hospital and they only want to see me every 6 years, so this is why they had to give me an up to date machine as they had to give me an APAP and a data capable one.

I got three machines home to try, a Philips Dreamstation, a ResMed Airsense10Autoset and a ResMed S9. The Dreamstation was ok, a bit slow to react, but not as slow as make a serious difference to most users, it also did a pump up in pressure now and again to see if it got better resullts, if it didn't it went back to the pressure it was at, though I noticed this when awake, I didn't notice when I was sleeping, but it was slightly noisier than the other two. It also had a strange design and when I put a humidifier into it (from the back which made it awkward) it was quite large (not that big but with the humidifier going in the back was big for my table as it sat the other way round from the huge machine I had before) it was just not for me. Also it appeared a bit noisier than the one I picked.
The S9 was reasonable quiet, but the humidifier clipped onto the side of the machine, though it didn't make it big I thought it was something else to carry around with me and it did make the machine twice as big, though it was no bigger than the machine it was to replace. But it was an older design and though I would have take it over the Dreamstation, I still had the Autoset to try.
The ResMed Airsense10Autoset was the last one I tried (deliberately) and the first thing i noticed was it was very small and very quiet, so quiet I had to check it was still working when I woke up during the night.
The humidifier also plugged into the side of the Autoset which made it tiny and a lot easier to lug around with you. I also got on better with it when using it (though it maybe has the same software inside) I just fould it an altogether better machine to get one with, though there was nothing really wrong with the others, I just clicked with the Autoset and it being so quiet and small made it just perfect for me.
However, one thing I did overlook when trying them out was it was a 24vDC machine and not a 12vDC, this made it a bit more difficult if camping or off grid. It could not be clipped onto a car battery if the power failed, you have to get a 12vDC to 24vDC converter so it can be used and even if you have a 24vDC system, you still need to converter to use it. However, according to most forums I have the best machine.
There might and probable is just as good one out there, but they are not so popular yet. Some are just as good but don't collect data, so people that like to be on top of their treatment (like in the USA and Australia)
where they have to pay insurance and some of the doctors do not pay the attention to the patients quite the same as they also have DME suppliers, this complicates things as they have three people to deal with, Health Insurance, DME suppliers and doctors, the doctors try their best, but insurance companies try to save money by trying the least expensive option first, then the DME's try to give you the machine that gives them the most profit, giving the doctors and the patients a bit of a headache.
Anyway, I digress!

................................................................................................................................................................

You should not have to tighten your mask as tight as to cut into your nose and it should not be very tight anyway. It should be just tight enough to stop most if the leaks, then start your machine and adjust the mask for a good fit, sometimes this involves lifting the mask off the face and letting the seals blow outwards, then slowly let the mask reseat onto your face. Think of the mask like a hovercraft skirt, the air forces the seal onto the face and it is this that seals the mask and NOT tightening the mask. The seal can only work like this, the Gell Masks are the exception. Try just tightening it a little, then start the machine, lift the mask off and reseat it, (making sure it is set for the correct hose and mask) then tighten it up just until the leaks stop, if it starts to leak as the pressure builds, adjust and or tighten it until the leak stops, don't just make it as tight as you can. This is the mistake everyone makes (including me when I first started, there were no forums to help me then and the Internet was just getting going) so try not to do this. The mask will leak during the night (they always did with me anyway, I appeared to shrink during the night) so it will need a slight tweak to stop any leaks, but again, do not be tempted to overtighten it.
It might turn out that you will need to use the Nasal Pillows, but if this is the case, you will need to do something about your nose blocking when you lie down, bring this up when you go for your next appointment, or go see you doctor and tell him about it. You might be able to get a small operation to clear the problem, then you can sleep like most of the rest of us.

Anyway, please let us know how you get on and what you decide to do.
If nothing else it will always help others.

You still sitting on the settee at night wrapped up like an Egyptian propped up with cushions?
S2S - Sleep2Snore

Sarah
Sergeant Snorer
Posts: 49
Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Wed Feb 21, 2018 10:16 pm

The bandage is out!! :lol: I ordered myself a chin strap which arrived today. I strapped my jaw up so tightly last night that I had to abandon the bandage after a couple of hours. I can still feel the effects in the hinge of the jaw - ouch!

I know the theory about not overtightening the mask but I can't get it to seal otherwise. Air pours out from the lower half when I put it on loosely and continues to pour out as I gradually adjust it. Only when it is ridiculously, uncomfortably tight does the leaking stop, unless I move my mouth. I'll try reseating it as you say but I'm coming to the conclusion that it's either the wrong size or the wrong shape for me. Or perhaps I'm the wrong size and shape. :lol:

Wow! I'm impressed with the way you took over the management of your own treatment. I wonder if you'd have the same reaction from doctors and clinicians today? With all the information available there's no excuse to remain uninformed about the condition so why not make decisions? Not that I've dared to do much so far, except for downloading SleepyHead to view my data ... and buying myself a chin strap ... and altering the minimum pressure from 4 to 6 (shh, don't tell them! :lol: ). Oh, and ordering a travel, battery CPAP for camping - now that's an essential!! :D Although I suppose if I angle my hammock so that my nose is into the wind rushing down the glen, it might have the same effect. :lol:

No, I couldn't be a passive patient. Every night has been different so far as I try to find an arrangement which works. I haven't had much to do with doctors all my life and am far too used to making my own decisions. I camp all year round in Scotland, sometimes in a tent, sometimes in a hammock, occasionally solo wild camping. That involves research, decision-making, skills development, experimentation, and getting up and dealing with a problem, as there's no one else there to do it for me. Finding out about sleep apnoea, tapping into the wealth of experience which other (wonderful!) people share, and actively taking control of the situation seems the obvious way to go. :D

Sarah
Sergeant Snorer
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Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Thu Feb 22, 2018 8:43 am

Nasal mask + chin strap + sitting up on sofa = AHI 0.8. 😁

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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Thu Feb 22, 2018 6:33 pm

I think the FFM s just the wrong size or shape for you.
You do get soft cloth ones, but they tend to be a bit difficult to seal, plus the Sleep Clinic might not pay for one as they are a bit (or were at least) a bit on the costly side. There is one that is so soft it needs a support at the nose, which is not hard to do.
https://www.youtube.com/watch?v=xWPtpuCrFow
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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Thu Feb 22, 2018 6:39 pm

This is another mask you might want to try, it has nasal pillows, but also has a part that covers your mouth.
Effectively it is a FFM or at least doing the same job.
https://www.youtube.com/watch?v=nU3wTC2xrT4
S2S - Sleep2Snore

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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Thu Feb 22, 2018 6:45 pm

This might be worth a look at, though getting a bit old now.
https://www.youtube.com/watch?v=6lgbNAJjQJg
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Nuneatonman37
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Re: Not a good first night

Post by Nuneatonman37 » Thu Feb 22, 2018 9:43 pm

Sleep2Snore wrote:
Thu Feb 22, 2018 6:39 pm
This is another mask you might want to try, it has nasal pillows, but also has a part that covers your mouth.
Effectively it is a FFM or at least doing the same job.
https://www.youtube.com/watch?v=nU3wTC2xrT4
Don't ever get this hybrid mask by Resmed I paid out around £125 for one and it was rubbish it leaks on the nasal pillows badly .
Resmed swapped the size of the pillows for me but it was just the same with leaking .
I asked them to swap the mask but they said they would not because I had used it so I told them I was contacting trading standards about there defective product - 20 mins later there on the phone telling me there swapping it free of charge for the Quattro full face mask .

Another victory for NM37 against the big boys ... :lol: :lol: :lol:

Sarah
Sergeant Snorer
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Joined: Thu Jan 11, 2018 5:47 pm

Re: Not a good first night

Post by Sarah » Thu Feb 22, 2018 11:56 pm

Lots of choice out there. Thanks, Sleep2Snore for all the useful videos. :D

My mask of choice is actually the first one I was given and rejected because I didn't think I could use it - the nasal mask. I had problems with my mouth falling open (now solved with chin strap) and with breathing through my nose lying down (still working on that). It's so comfortable I hardly notice it. Good results last night! I'll see what the clinic says about the face mask - maybe they can sort the fit or find one which is more suitable.

NM37, you make me laugh with your stories. :lol: I just hope we are never on opposite sides of an argument. :lol: :lol: :lol:

Nuneatonman37
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Re: Not a good first night

Post by Nuneatonman37 » Fri Feb 23, 2018 5:43 am

Sarah wrote:
NM37, you make me laugh with your stories. :lol: I just hope we are never on opposite sides of an argument. :lol: :lol: :lol:
I would win without a doubt !!!!!!

:lol: :lol: :lol:

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Sleep2Snore
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Re: Not a good first night

Post by Sleep2Snore » Fri Feb 23, 2018 12:46 pm

It might sound a bit silly, but if you got large medium and small nasal pillows, try the largest, and work down in size. I like nasal pillows, only problem is I get a small amount of air gets into my mouth like a bubble at a time. This dries my mouth out and then as it dries out more and more air gets in and then at some point it gets out. I weaken after a while and take a drink of water, this stops it for a good while again, but it slowly does it again. If it were not for this I would score 0.0 however it is only a few nights I get this score and it is usually 0.03 but the score over six months is 0.3 total combined.
My score for the old machine running at 18 was 0.3, so at least the maximum it gets to now is 13 in pressure. Flow is another matter, but that is another story.
I used to get centrals but I don't appear to get those with this machine. Or at least that is what it tells me, but it is just a dumb machine. I know I get clear airway events as I just forget to breath as I breath very shallow breathes so the machine might not be as smart as it thinks. However, the new machine is a lot better and quieter than the old brick.
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