Help !!!!!

[SteveM]

Hi All, I've now been trying to get on with this CPAP for a week now, the most continuous sleep I've had is about 2 hrs, I feel worse now than before I started treatment, the specialist recommended that I should increase the pressure to 9 from 7, the first time I did that was when I got the 2 hrs sleep but since then (and prior to) I was waking up about every 15 mins (I guess that's better than 64 times an hour which is what was happening prior to treatment but it's still not enough) Also I find it extremely difficult to get to sleep with the mask on and when I finally do nod off I'm awake again shortly after !!!! Has anyone got any advice please, trying to work like this is no joke !

[James @ Intus]

Do you know what actually wakes you?

What is it that prevents you from staying asleep?

As in, breathing difficulties, mask discomfort, air blowing in your eyes etc. Without knowing the cause, it's hard to remedy.

Also, what type of mask do you have?

[SteveM]

I'm not sure what wakes me, I think it might be when the ramping stops and the full pressure kicks in, when I wake I do have problems breathing, also the mask is uncomfortable, the mask is a full face mirage quattro, I've been reading up on this and it appears that I may get on better with an APAP instead ? As mentioned, I have a count of approximately 64 episodes an hour, do you know if this is unusually high or is it average?

[James @ Intus]

64 Will be above average though there are people twice that.

The events index is not necessarily related to pressure requirements as some people's throats will stay perfectly open at a low pressure whereas others' physique means it needs a high pressure.

An APAP may not necessarily be an improvement for you, especially if the mask bothers you still. An APAP can flare up and stay high for a while too so I'd not jump in yet until you get a mask that suits you.

It would be interesting to know whether you actually wake every 15 minutes or just think you do. Many people under-report actual sleep (over-report problems) without them knowing. You may be doing better than you think.

If the high pressure is an issue (or to eliminate that) you can ask for it to be set lower initially, to ease you in. Think of it as ramp super-charged. That's going in exactly the oppose directly than your specialist told you so do discuss it with him/her but IMO it could help with getting used to it. That's arguably initially more important than getting the correct therapeutic pressure.

Do you really need a full face mask, perhaps because of nasal breathing difficulties?

[SteveM]

When I wake I tend to look at the clock so yes I'd say I was waking approx every 15 minutes, the problem is I'm wide awake when I do wake, not like when I wake without the treatment and don't realise I've woken. I have a full face mask as my nose was broken years ago and I have difficulty breathing through it, having said that, breathing strips when fitted correctly do allow a better flow so maybe a nose mask would be better as I find I breathe more through my nose during treatment (I tend to have a suffocating feeling and my mouth dries out if I breathe through my mouth) I am contemplating switching off the ramping as I think it may be the cessation of ramping and the full force of air that wakes me, any thoughts? I have spoken to my specialist today and she has advised I stop treatment altogether for the time being, the problem I have with that is I have read so much about the dangers of OSA that I am reluctant to stop the treatment now even though I feel worse, it's kind of a vicious circle.

[James @ Intus]

Fisher & Paykel also do a mouth-only mask called the Oracle, it tends to have less issues with leakages. But it does require a humidifier, which you should perhaps request anyway as it will also relieve your current dryness issues.

Not sure whether the ramping idea would make much of a difference but it's worth a try.

Don't stop yet as there's plenty to try. There are also lots of accessories that can hepl make it easier including special pillows, hose management, humidifiers etc. But the focus should first be on the mask really, it's a pivotal part of treatment.

[SteveM]

I would like to try different masks (particularly a nose only one, I'm positive that the force of air through my mouth is what gives me the suffocating feeling) but the hospital is in central London and I live 70 miles away so the cost to get there and pick up equipment is prohibitive (this side of Xmas) and the specialist refuses to send anything out by courier, having said that, I know for a fact there is another sleep clinic just 20 miles away in Ipswich, do you by any chance know whether I can request a change of clinics?

[James @ Intus]

I believe you have a right to pick a hospital so ask and see what happens. I know Brompton Hospital does send mask so with some gentle pursuasion you may be able to get one.

[SteveM]

Thanks, I'll give it a try

[Sleep2Snore]

I hope this makes some sense?

SteveM Hi

I had a 300 Mile + round trip to get to my nearest Sleep Clinic which was in Edinburgh. Though they did start one in Inverness, but Aberdeen chose to go with Edinburgh at the time I was a lot closer to Inverness.

Anyway I think a CPAP would be better for you rather than an APAP as James said. If you struggle with the machine you have, it may be the machine is set a bit to high for you. It may be that you just have to wrong mask and trying another might help. Breathing when you first get a CPAP has to be learned, most do it without realising it. Instead of taking big lungs full of air like you used to, you take shallower breaths and force the air back out against the pressure. It is almost like reverse breathing as it were. Let your chest musels relax and let the air pressure assist in filling your lungs, it will surprise you how quick you get use to it and your brain learns. If you give someone a go on a CPAP machine (I wouldn't recommend it) they will take a breath as usual and feel as if they are going to burst a lung or they are choking. This is because they take to deep a breath. It may help if you practice your breathing technique a little, I have been of CPAP for so long I don't even have to think about it anymore.

Others may disagree with the above, but when I first got the machine I would panic if I took to beep a breath. This sometimes still happens if I just put the machine on just after I go to bed without settling down and relaxing first. After a few seconds with the mask off, I can put it on and start the machine again without any problem.
I don't use ramping at all. I find that there is an in between pressure I can't handle, but I think after 15 minutes your machine will have been on full pressure for some time before you wake.

Oh and a humidifier helps a lot with dryness, this can also wake you and you can end up so dry you can't use it for the rest of the night, so if you feel dryness ask for one. Some people get on fine without one but I just couldn't use CPAP without a humidifier, 3 hours and that was as much as I could go without one.

Good luck, few get off to a perfect start, the ones that do are the lucky ones so you are not alone.
I must have tried most of the masks that were around when I first started. Cost me a fortune running up and down to Edinburgh!

I hope this helps.
Based on my own experience, but others may have had different experiences.

S2S

[SteveM]

Thanks s2s, I have currently got a different mask winging its way to me so hopefully that will help.

I have also read my sleep study report, whilst prone my total events (index) read 2 (46.1) my OSA (index) read 0, central apnea (index) read 1 (23.0), mixed apnea (index) read 0, hypopnea (index) read 0 and the flow limitation (index) read 1 (23.0) - Does this mean I don't suffer from OSA if I sleep face down?, someone please tell me this is the case so I can learn to sleep face down and do away with this bloody machine !!!!

[James @ Intus]

When you say 2 (46.1) do you mean 2 times per hour (index) and 46.1 times in total for the night? That doesn't quite seem to add up.

[SteveM]

I really don't know is the honest answer, the chart looks like this (attachment).

[James @ Intus]

Thanks.

Right now you spend 0.7% of the night (3 minutes of a 7.5 hour night) on your stomach so re-training to enforce that might be a tough act.

On your stomach you indeed only had 2 events but that's probably because you only spent 3 odd minutes in that position. The index was still 46 so had you spent an hour that way, it would have only been marginally better than on your back. So I don't think you'll benefit much from sleeping that way from now on.

I take it these numbers are without treatment. If you have an APAP, you can get similar numbers with treatment though without the body positioning.

You do sleep a fair bit on your side, with no noticable difference in events, so you should make sure your mask and pillow are suitable for side sleeping.