HELP! Will I ever get used to CPAP?????

[dunny330]

I have just been diagnosed with OSA and have been placed onto CPAP. As a 33 year old female who is by no means overweight I am not your usual OSA candidate!

I have been using CPAP for 3 weeks now and continue to have problems, in addition to this am feeling worse than ever and am still waiting for that magical morning when I awake feeling refreshed!!! Will it ever come??

My CPAP has been fitted with a humidifier to prevent the dry mouth and throat, however that leaves me with a catch 22, have the humidity up high eases the throat but makes my face damp and causes the full-face mask to become slippy and leak. Turn the humidity down and I am back to the very uncomfortable dry throat and mouth again! It's worth noting at this point that I am a mouth breather and the full face mask seems to be the only option that I know of......Any suggestions???

From day one I have also been suffering with bloating which causes me stomach pain both in the night and the next day.....will this subside???

In addition to this I have been experiencing acid reflux too, this is despite chewing 2 Remegel before I go to bed......any ideas???

And finally headaches, I have been waking up with a headache which stays with me the following day......is this normal???

I have been back to the sleep clinic today and they have adjusted the pressure on the CPAP from 10 down to the minimum 8. so we will see tonight if thins improve.

I am determined to make this work as I cannot continue feeling as tired as I have done for so long.

I would be grateful for any feedback / advice / support from other members of the forum, I'm happy to try anything!!!!

Thanks for reading


Claire x

[Tigers Fan]

Calm down, dear - it's only CPAP!

For all but a very, very few, we get used to CPAP and good sleep comes to us - if we perseverenin the early days. After a while, we can't sleep without the security blanket effect of wearing the mask, warm air gushing...... zzzzzzzzz.

Humidifier - for now, it's about balance between wet face and dry mouth. Buy yourself a heated hose,, turn te humidifier to max and zzzzzzzzzzzz.

Bloating goes away after 'a while' and can be very painful.

Acid reflux - visit to GP needed, easy fixed.

Newbies complain of this and thhen don't so I guess it goes away, too.

Adjusting your pressure downward to relieve side effects is a standard sleep clinic counter-productive tactic. Your pressure needs to be optimised to give you as low an AHI as possible and you have to learn to live with that pressure. I use 18.5cm and have to feel the exhaust to know the machine is running.

You're in thhe thick of the worst stage of learning CPAP, Claire. Tenacity and Perseverance are your watch words for a while. It will get better, you will get sleep - if you stick at it. You'll get lots of support here - the girls will flock to help you, especially.

TF

[Barely Awake]

Hello Claire, welcome to the club, your kit will feel like a well loved pair of old PJs once you are used to it so try and hang in there.

Your comment about not the usual candidate made me smile. When I went for my CPAP workshop, which was a teach-in they used to put on years ago, I was the only big person in the room. Same when I went for my first annual appointment, the waiting room had a dozen hoseheads in and I was one of only two folk there I would say was overweight. The only person I knew with OSA before being diagnosed myself is built like a rake, but he also drew the lucky straw, he came home with his new kit and took to it straight away and 9 years on has never suffered any leaks or other problems with his kit. He overnight was a man reborn. The rest of us have to knuckle down.

Reflux - you should see your GP but you might also try avoiding alcohol for a few weeks and don't eat late in the evening. You may also find certain foods have to be earlier in the day only. Keep a sleep and food diary, it didn't come natural to me but it has paid off time and time again.

Best of luck!

[symmit]

Hello!

Try not to eat in the evenings, this may help ease the reflux and bloating. The bloating will go away in time, I've never suffered reflux though.

A heated hose will allow you to crank up the humidity - Intus sell a universal one or you may get lucky with your clinic.

Counter-intuitively, more pressure may help, but get used to 8 before you start tweaking!

[Firemaniac]

Hi, Please persevere with CPAP as it will improve your quality of life in a way that is un-imaginable at the moment.
My machine is set at 23 and is quite high as far as i'm aware but i use the ramp feature that starts low and gets higher over 15 minutes which is usually enough time for me to get off to sleep.
I used to wake up with no mask on not realising i had removed it in my sleep.
Also i used to have panic attacks thinking i couldn't breathe but perseverance is the key.
Now i can't get any sleep without the security of my cpap and i even bought a car power pack with an inverter for use in a power cut. This works well for me.
As for the headaches! do you grind your teeth? or clench your jaw when sleeping? A simple lower gum shied from your dentist will stop this, cost about £25.00 so its not a great cost if it doesn't work.
The bloating goes very quickly once your routine settles down.
Acid reflux is because you are swallowing more than usual again this goes away very quickly.

[Tigers Fan]

What sort of machine do you have, Firemaniac? AFAIK, PAP machines only go as high as 20cm. As my CPAP pressure has steadily risen over time and I'm now using 19.5cm, I've been concerned about "what comes next?".

[Firemaniac]

Sorry, that should have been 19cm with a ramp time of 23mins, i read it wrong from screen.
Its a respironics m series at the moment but i'm trying to get an automatic one from the hospital.
Does anyone have problems with masks? just had a new one (Gel respironics) usually they are ok but this one is painful around my nose and no matter how i adjust it, it still hurts!! Been using the same type for 3 years now and usually have no problems but this one is painful.
I wonder if NHS does the new strapless mask yet?
I can't believe how much this machine has improved my quality of life.

Also i was told that if i had surgery to try to rectify my problem there is only a 50% success rate and if it failed i would no longer be able to use CPAP machine? This is quite a scary scenario so i will stick with CPAP as i know it works for now.

[Barely Awake]

What sort of machine do you have, Firemaniac? AFAIK, PAP machines only go as high as 20cm. As my CPAP pressure has steadily risen over time and I'm now using 19.5cm, I've been concerned about "what comes next?".

I didn't look at any machines at the SATAday conference this year but in previous years I have seen a couple of machines that go above 20.

Sorry TF I don't recall the names.

[Tigers Fan]

Good thought, BA, thanks! I'll call SATA and/or James at Intus and ask the question rather than sit with a back-burner concern.


TF

[dunny330]

Thank You

Many Thanks to those of you that took time out to reply. The adjustment to the pressure from 10 to 8 and pretty much sorted the issues surrounding bloating and side effects.

I feel that I am sleeping very peacefully but still do feel very tired the next day, is this normal, does it take time for the full impact of CPAP to take effect.

I am using the Quattro FX mask now which is fantastic and highly recommended!

[Tigers Fan]

The working pressure should not be adjusted to sort out side effects! There is an optimum pressure for you at any given time (it can vary up or down a little due to a myriad of reasons - well, lots, anyway) that causes your AHI to be as low as is possible and thus, your sleep to be as good as possible. A sure clue to that is waking up feeling refreshed.

For all your 'side effects' you need to fix their causes: bloating - you'll get used to CPAP and bloating will go away: leakage - adjust your headgear.

I use 19.5cmH20 pressure and the same mask - no bloating, no leakage.

TF

[Mentalfog]

Getting used to CPAP, for me, took a little time but I promise you, you'll get used to it

After a few months, you wont be able to live without it!

[Sparticus]

Work in Progress!

Hi Claire, for some it can take a long time and for others they take to it like a duck to water. Just like with normal sleep lots of things can effect your cpap including eating cheese before you go to bed, also coffee, and even a night at the pub, like I said its a work in progress.

Welcome to the forum

[eurostar]

Hello all, my first post here.

Claire, sounds like you're doing really well, it took me a year to be able to wear my mask right through the night! The only side effect that didn't fade away is swallowing lots of air while asleep and then farting like an elephant in the morning.

Sounds like you are happy with your mask, but if you didn't have a full face one you wouldn't get a wet face! I hated my mask and swapped it for a nasal pillow - nothing can get wet except the inside of the nostrils.

You may find in time that you don't need the humidifier to prevent a sore throat. You will still want a pint of water when you wake up - and maybe being that dehydrated has other consequences. Some people get headaches. I don't. I'm happy not to have a water tank because it's just extra faff.

As for feeling tired, some doctors will tell you that a CPAP machine just cannot alleviate apnoea entirely. You might not hear that from a sleep clinic - they don't want to discourage you when you are struggling with the machine. I also have CFS, and my specialist told me my machine could only address my OSA partially.

Don't be discouraged - give it more time, think about adjusting the pressure. As Tiger Fan says, maybe your pressure is too low now. Maybe you should go back to the pressure set by the clinic and wait for the side effects to go away. Maybe you will find one day that you benefit from increasing the pressure! Don't go mad, I was told it's possible to damage the lungs by turning the pressure up too high. Maybe this is why my clinic didn't show me how to adjust it. They gave me some serious frowns when I told them I had discovered how to do it for myself.

Think about going back to the sleep clinic after a year for an overnight test while you're on your machine. Then you would have data to show what sort of job the machine is doing. (I haven't done this - I don't think it would help me whether the data was good or bad!)

There is also a data collection function with some machines. There is on mine - the Escape S8. You plug in a memory card or something. If you collect data it might strengthen your case for another overnight test. I haven't done the data collection thing, despite having the machine for several years. My clinic (at the Brompton) is so chaotic that I don't have enough confidence in them to believe they would look at the data! I really should pull my finger out, but I am so effing tired and depressed by the CFS that I never do much, full stop.