3 months on

[Dvfine]

I have been on the Cpap machine for 3 months now and have been to the hospital for a check up in that time. I was pleased to see that it had reduced it from 55 times an hour to 9 times but I complained to them that the machine wakes me up several times a night with continuous high pressure. They found that the pressure was going higher than my prescribed level, which is 14, so they capped it at that.
I changed to a full face mask for a while as I found air escaped from my mouth with the nasal pillow but have since switched back as, no matter what I try, the face mask keeps making rasping noise around my face and the machine doesn't seem to sense when I've started breathing again which ends up waking me up so that I hit the button on the machine to lower the pressure.
I have SOME good days but I am still struggling as I feel MORE tired using the machine than before. It has had a big impact on my life as some days I feel ill and can't work. I sometimes wake up in the morning with stomach ache and belching. My sleep pattern is topsy turvy. I used to be able to go to bed late at night and get up at 7am no problem but now I'm so tired by 6.30pm. I tried going to bed at 8pm, which is very early for me, which resulted in my waking at 2am not able to get back off to sleep again. A couple of times I went to bed at 1 or 2 am and found I lasted until 5 or 6am which I could cope with as at least I wouldn't have to lay awake all night.
I know it is saving my life and I'm sure it will get sorted eventually but it's like torture for me at the mo as I don't cope with a lack of sleep very well.
Would it be a good or bad idea to ask for something to help me sleep? Would the doctors even consider it while I'm on the cpap?

[Sparticus]

Pills

Yes some doctors will give pills out to aid your sleep, mine did!

[Richard]

Hi Dvfine,

You would benefit by adopting a strict bed-time routine; sleeping-tablets are not the answer.

If you need to be up for 7.00am, tell yourself you must go to bed at midnight, not earlier, not later. You wind down before bed-time, no alcohol after 9.00pm, no coffee (de-caff. is OK), no cheese late at night and take a warm milky drink to bed with you, drinking chocolate is a favourite of mine.

Have a Remzzz face-mask liner fitted to eliminate leaks and noises, read for a while in bed so you are calm and very relaxed. Then, when you're ready, put on the mask and turn on the CPAP. And away you go!!

A regular night-time routine is most important.

Best of luck.

Richard

[Sparticus]

Nights

I am a nightshift worker and my routine is different every day, I may work late the school run may not go as planned and day time noise could be worse one day to the next, for me the pills were a godsend and what aided me in reaching my goal of becomming happy with my machine and my sleep, I say if it helps and your doc is happy then go for it

[Berneta]

Something for sleeping

I have been taking a very mild dose of Valium before bed every night--it started when I was in the hospital and they discovered that a Severe AHI causes me to have a seizure. NO problems with seizures since I started taking the pill, and no trouble sleeping most of the time. (Unless I get a bad cold and stuffed up!) I started out with an AHI of 72 and now--8 months later-- have an AHi between 0.5 and 2. So I guess the Valium helps me relax just enough to get a good nights sleep, and still be aware enough to make adjustments to the mask during the night. On average--I wake only long enough a time or two to make an adjustment or make a fast trip to the loo. Ask your Dr if he can give you something for sleeping or advise an over the counter med. I am sleeping good--waking refreshed --and pretty mellow most of the time. x Berneta

[Tigers Fan]

Incompetence of many NHS medics

Hi Dvfine

Sounds like you are suffering the worst of incompetent clinic staff. If your prescribed pressure is 14cm, you should be on CPAP. If your machine goes higher than 14cm of its own accord, you are on APAP and the machine is doing its job correctly.

Please confirm whether you are on APAP or CPAP.

As we've suggested over and over, if your APAP fluctuates wildly (as you describe) you have to tame it by narrowing its operating band - a higher min pressure and a lower max pressure - to give you a chance of settling to sleep.

You need to practice setting your mask headgear to stop leakage - very simple when you have the knack and hell's own job if you don't. It comes with time.

And Richard is absolutely right, give your body a fighting chance with a regular sleep routine.

For my money, you need to learn how to regulate your own therapy - the guys at your clinic are a waste of space.

TF

[Dvfine]

It's a REMstar Auto A-Flex Phillips Respironucs machine. My next appointment is in about 6weeks.

[Chivalry]

You mention that you went back to a nasal pillow mask as the full face was making leaks and noises? did the clinic try another full face mask for you?
I found my biggest problem was getting a full face mask that sealed well and fit my face... as there all completly different!
I went through SIX masks before i found a mask that didnt leak and keep waking me up with the noise.. so make sure you go back and ask to try another full face mask... i have now found 2 that suit me well...
The Mirage quattro.... and another mask from Apex called a wizard 200 full face..(is a story attached to this mask will post it up once its sorted!

If you cant get a mask that fits and is leak free....your just fighting a losing battle i found.. Masks are a very personal fit and no 1 mask will fit 2 people the same... Unfortunaly (like in my case) this can lead to alot of trial and error... but once you find your mask thats right for you things do get alot better

[symmit]

What Richard said! And what Chivarly said!

I've got a collection of masks now, settled on the Forma full face and the Sleepweaver nasal as I don't seem to be able to breathe normally some nights and the Forma fixes that. Make sure you're not overtightening which can cause leaks and farts as much as undertightening - it's a balance!

Stick with it though if you can - and as much as possible without drugs - if you're not getting enough sleep go to bed a little earlier, for the early days I was getting in bed 10-12 hourse before I needed to be up, and occasionally popping an over the counter sleep aid.

There's a lot of masks available, if your clinic can't provide and you have the means try some online places.

[Tigers Fan]

Hi Dvfine

And what TF said!

At your next appointment, I'd try to persuade them to set your min pressure at 1cm below your 90% pressure (a figure available to the medics for your SmartCard in back of the machine) and 2 or 3cm above 90% pressure. Though this isn't the ideal solution, it will stop the wild fluctuations and give you a chance at settling into your therapy. Once settled, you can find the optimum settings for you and whichever mask you settle on.

In the meantime, it is simple to find on-line instructions about accessing and using the Clinicians' Menu of your machine. The medics may well whinge if you do but at least someone is taking care of you.

As an APAP automatically adjusts the delivered pressure according to your needs throughout the night (over a max range of 4 to 20 cm), how can you have a prescribed pressure that is fixed at 14cm?

TF

[Dvfine]

Hi Dvfine

And what TF said!

At your next appointment, I'd try to persuade them to set your min pressure at 1cm below your 90% pressure (a figure available to the medics for your SmartCard in back of the machine) and 2 or 3cm above 90% pressure. Though this isn't the ideal solution, it will stop the wild fluctuations and give you a chance at settling into your therapy. Once settled, you can find the optimum settings for you and whichever mask you settle on.

In the meantime, it is simple to find on-line instructions about accessing and using the Clinicians' Menu of your machine. The medics may well whinge if you do but at least someone is taking care of you.

As an APAP automatically adjusts the delivered pressure according to your needs throughout the night (over a max range of 4 to 20 cm), how can you have a prescribed pressure that is fixed at 14cm?

TF

Unforunatley, I'm at the mercy of the clinic as they know more about the condition and equipment than I do. I am a newbie (comparitively) and can only go on advice given. Gone are the days when they spent a few nights monitoring you and helping you get sorted, these days it's "here is your equipment, off you go and good luck and see you in 8 weeks or so". Mean while I have to endure many torturous nights and days where I feel so ill I can't work out if I'm going down with something or whether it's just tiredness. My life has changed since using this machine, sadly not for the better so far. Many have suggested trying different masks but sadly the Nhs are tight and my wallet can't afford to buy and try.