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**Tigers Fan** · 18 June 2010, 10:44

Calm down.

Hi TiredBoy

Welcome!

First thng is to calm down. If you make an enemy of CPAP it will just take you longer to adapt. It isn't easy to start CPAP, as you've dicovered - so a calm, positive, persevering approach is a great asset.

You describe wonderfully a generic newbie bad start experience! The mask doesn't fit! It blows too hard!

My guess is that if you choose the best of the two masks - the one you least dislike - and have them drop your pressure quite a bit,then start over, you might get on bit better. The you need to gradually increase your pressure to the correct value to get proper therapy.

Also, try wearing the mask and using the machine before bed time - anytime during the day - to help you get used to it.

It gets easier as time goes by,promise

TF

**TiredBoy** · 18 June 2010, 12:20

I can appear brusk when I'm tired.

Thanks for your comments. I didn't come on here to be told off. I don't think you know how calm and positive I have been. I was only after some helpful suggestions on equipment etc. I'm sure you mean well.

I am very determined to make this work, and you must read this understanding that I have only had about 2 hours sleep in the last 24 and most of that without CPAP, so probably not quality. Did I mention that I was tired!

I have already done as you suggested and worn mask during day for naps, and yes I could sleep for a maximum of about 60 mins (which is all I want during the day), but that doesn't stop my nose from hurting at night!

The consultant was great on diagnosis. I've been told that I can't have a lower pressure by the technician/nurse, but I don't rate her anyway. She has seemed very disinterested or possibly just not very bright. I did have a better short meet with what I guess to be a higher grade technician / nurse, and what she suggested was fine. It just didn't work. I've got app on Monday to try and sort this out.

I just think that a few simple questions (like "Do you sleep on you side or back?") should help them find something close to the right equipment combination, rather than hoping one will put up with the cheapest equipment available in the department.

I am not anti NHS. In fact my wife works as a NHS professional, so we know how these things work. But they could save some clinic costs, by giving people the equipment most suited at the off. I had to change the mask from the "normal one" before I even left the clinic for the first time. The first one issued clearly did not fit, but I was given the impression that it was the only one! It may just be the technician that I was dealing with, but i don't like the attitude. I wasn't expecting it to be easy, but some of the things I've been told "to get used to" are rediculous. Apparently there is nothing that can be done about cold dry air! They might as well have just sent me away saying that I just need to get used to not sleeping. It would have been about as helpful.

Anyway, I going to get some padded dressing strips to try with the previous mask tonight and hope that Monday's app is more fruitful. I just don't know what to try if that is unsuccessful. I can't keep running my business into the ground.

Maybe if I got sick pay, and my business ran itself while I am unable to do it, I could be more patient?

Hints on equipment and masks for people who sleep on their sides and like to turn over, don't like colds, and who have exceptionally normal noses and relaxed flappy lips appreciated.

TB

**jackyk** · 18 June 2010, 18:01

hiya. im a relative newbie too. i started off with flexi-fit mask, which was full-face and bloody awful to say the least. i soldiered on for 3 weeks , bit like you. i then went to drop-in centre to discuss my options and left with mirage quattro full face mask . my life is transformed. i sleep on my side but do tend to turn over in sleep. i manage fine with this and often wake up opposite ways to falling asleep.
it is hard to get used to it and can sympathise when its your own business and no sick pay etc. hope you get sorted really soon, keep us informed plz

**TiredBoy** · 18 June 2010, 19:23

Thanks. That's what I need to hear.

TB

**Biggles** · 19 June 2010, 08:38

Hi, sorry to hear of your difficulties, it does take some getting used to. Over 5 years for me and I won't go a night without my mask if I can avoid it. Bad colds are tricky !

I've been using the Respironics ComfortCurve mask for several years now; it's a nasal mask and I can sleep in almost any position. Once the air flow is set up it is difficult for me to open my mouth so that is another problem solved for me. I no longer 'dribble' and hubby is pleased I can't talk

Seriously, we now both have a good night's sleep. I used to toss and turn and kick hubby unmercifully before life with the mask.

Hope to hear you are getting some good sleep very soon, best wishes, Jan

**OldCrow** · 20 June 2010, 16:43

It does Take Time. Persevere.

You describe exactly my experiences at the start of CPAP; I thought I was being subjected to some 1984 techno torture and that I'd never be able to continue long term. Now into my 6th month and yes, there are still a few irritations; I think there are going to be some leaks when you turn whatever.
Ask your supplier for a mask fitting - it was key to me as there is a definite "sweet-spot" between having the mask too tight and too loose - my mirage is designed to float like a hovercraft skirt and there is a "just right" setting.
Yes, it's scary, annoying and totally alien at the beginning but I've grown used to my mask now and it no longer bothers me. Still get woken by leaks sometimes and I think 4-5 hours continuous is a good session - but it's very deep sleep and I usually wake having hardly moved. The cold air blowing is quite weird at first and you can get a pretty dry mouth but I now find it pretty hypnotic. I think it took me about 6-8 weeks to come to terms with it - so just persevere and be determined; it certainly won't feel right straight away. There is nothing you are experiencing or reporting that we haven't gone through - I really did hate the thing in the beginning but it's quite comforting now. Good luck.

**Kaele74** · 20 June 2010, 22:06

Hi TiredBoy, if it's any consolation I've been going through similar things over the last few weeks. I was diagnosed a few weeks ago and I reckon I've only had two occasions where I felt any benefit from my machine. Strangely the first night when constantly waking, readjustments, tightening, loosening, etc, plus bad dreams about removing the mask but it miraculously being back on my face within seconds (!)... well, it was the best night I had over about 2 weeks. I actually kept a record of it every day too:

Night 1
Hardly slept, had bad dreams about the mask (I thought I was taking it off, then it was miraculously back on again)
Up at 8:30

Night 2
Slept well until around 4am, when the mask started leaking. Couldn't stop the leaks so removed it (about an hour)
Up at 9:00
Pain on forehead and down beside nose from pressure of the mask. Loosened it ready for the next night's sleep

Night 3
Took a long time to get to sleep, then felt restless. Woke around 2am when the mask started leaking again. Removed it around 2:30
Up at 8:30
Feeling exhausted, pain on forehead and beside nose not as bad today
Made an appt with the sleep clinic for tomorrow, to change the mask

Night 4
Got to sleep ok but woke as night 3. Mask removed again

**Collected smaller mask... hoping it will make a difference!**

Night 5
Worst night I've had so far. Constant leaks, cold air all over my face and in my eyes. Gave up by 1:30!

My nights just kept getting worse with the smaller mask, with the last straw being last Thursday when I removed it at 11:30! I work in the same hospital that I attend, so I was lucky enough to ring Friday morning and see my nurse the same afternoon. I picked up the medium mask and have had two significantly better nights. But I keep having the same problems, albeit to a lesser extent.

Some people might read some of the nights up there and think "Wow, she was in bed a looong time". No. I very quickly dreaded the thing, so I was waiting until I literally couldn't keep my eyes open before going to bed. Some nights I wasn't going to bed til 1am, and I had to be up at 6am.

Something I realised was the amount of guilt I felt about needing to try something else. I have 3 different masks now, and after swapping my first one and being told the one I was handing back would just be thrown away, I was doing everything I could to avoid creating more expense! Ridiculous when you think about it. Nothing should be more important to me than my own health!

So I have a routine now which seems to be gradually improving things. This is what I do:

1 - increase the settling period to 30 mins (15 was soooo not enough!)
2 - sitting in bed for a few minutes so I can get used to the feeling, making sure the fit is right, before l lay down and settle
3 - with big leaking problems during the night I remove the mask entirely and leave it off for a few minutes, then start the process again when I feel calm enough to take the care I need to, even if it means sleeping for half an hour without it.

I sleep on my side and the full face mask (Mirage Quattro (medium)) has been the best fit. I've found it doesn't move too much during the night when I roll over, but I'm usually partially awake when I roll over (always, not just since 'the machine') so I can support it in the right position while I move.

TiredBoy, I really do hope you can find the right combination, and quickly! I wish you all the luck in the world and then some. It's tough being a newbie with all this and not feeling like you have the support you need, and I can't imagine going through it with the extra worry of your business. Good luck! I'd be interested to her about your progress, especially since we've both been battling for about the same amount of time. It's comforting to know I'm not the only one in here who's going through all of this 'right now'.

On a side note, I did read these forums after my first night on CPAP. It's taken me this long to return, and TiredBoy's post to make me sign up because despite all the great advice, reading about all the continuous long-term problems (however small they may be) made me feel a whole lot worse (ie "this is never going to end, I'll be going through this forever... OMG!"). That said, it IS a great place for advice and support. But sleep deprivation does some weird things to your emotions and you can't always see the good stuff.

I'm babbling (I do that a lot, sorry!). Good luck TiredBoy!

K x

**mintra** · 20 June 2010, 22:07

I had start up issues too

I had lots of issues, like you mention, but the effects of it working were so dramatic that it was just worth it.

I went through three different machines until I was happy, then I found how to change the settings in the machine and I became obsessive about tuning it to get the best reality hit.

I used to take the mask off, and go into old poor sleep mode, then I got an egg timer to remind me to put the mask on, I need non of this now.

After two years, I still get some of the issues which made me uncomfortable, but they seem almost irrelevant now, you do get used to it.

I am sorry that you feel that you were being told off, but I can see how long term users may have forgotten the original issues, as it does become really easy to live with this and very difficult to live without it, and old timers may just think pull yourself together man and just do it.

It is really important to believe that it is worth it.

Oh and by the way it is worth it.

**TiredBoy** · 21 June 2010, 08:04

Many thanks

Thank you all for your support!

Apologies to TF if I sounded a bit defensive, I do appreciate any suggestions. Thursday night was particularly rough.

Thanks for the tips on masks. I returned to nasal mask since and managed to get my average usage up to 4.3hrs. The longest stint is still about 2hrs, before I need to have a drink of water and a reset.

I think the main issue is about the cold dry air problems. I think that once the CPAP machine is sorted, that I will be able to get the mask problems sorted. I'm going in this morning with all the gear to the clinic, so I'll let you know how that goes. I've started a thread on the Machine forum in order to find out my options there.

Thanks again

TB

**Poppy56** · 21 June 2010, 21:22

Have they given you a humidifier? My area gives these out and they make a big difference - no cold, dry air.

**OldCrow** · 23 June 2010, 01:10

Keep at it Kaele. It does get better.

I read your message with great understanding. I feel for you. 6 months into CPAP now, I'm used to it and it doesn't phase me at all now.
But...in the beginning I was just as you are now...I absolutely hated it, dreaded going to bed, stayed up as long as poss; felt like giving up, bothered by constant leaks and noise and felt CPAP worse than the apnea. None the less I have got used to it.
Firstly, what you are experiencing now is how it was for the majority of us. Don't expect it to come good straight away. Pace yourself; use it when you can and try and see the positive. Fit is important, not too tight and ask your supplier for help with this.
One piece of advice I found worked was NOT to use the lead-in or "ramp" period where it builds up gradually to full pressure... you end up just waiting in trepidation for the thing .. full blast straight away gets you both used to it and to see where the leaks are.
I know it sounds difficult where you are now but try and see it as a friend, not an enemy. As you are now, I dwelt on the negatives but eventually found things I liked ..such as really really deep sleep and the irritations, such as dry mouth and the sensation of being on the end of a hair dryer, eventually recede until they are just niggles. Just pace yourself into it, not expecting it all to come right all at once but watching for the aspects that do. Who knows, in six months you might be advising others. Good luck.

**TiredBoy** · 23 June 2010, 20:38

Thanks for all your support.

No humidifiers for Gloucestershire (and Herefordshire) users, but definite progress.

Monday - As my nose was getting saw, I got a nasal pillow to try. This was also fitted better, as I've been passed on to a higher ranking (and more experienced) member of staff. She knows considerably more than the first tech / nurse I had. Slight problems with connection on top of my head fouling bed head, but sort of fond a way round that. I could do with an elbow joint to hose. Nostrils saw after about 4 1/2 hours use.

Tuesday - I went to pharmacy to get a nasal spray and used it Tuesday night. Wow - I lasted about 6 1/2 hours! Although, I definitely breathed through my mouth a bit, and think I also had some apneas as I drooled a bit. I've noticed for some time now a connection between drooling and my wife's report of apneas. I think I'll try the chin strap tonight as I didn't feel as refreshed today.

Anyway, as I said I seem to be making progress, and I've been able to get back to work. 2 weeks without pay is all I can cope with.

Thanks again

TB

**Kaele74** · 24 June 2010, 20:58

A little less aggravation

Thanks OldCrow, I appreciate your comments.

I tried right from the beginning to be positive, but as you'll know it's not easy. However I did set aside some time last night to play with the fitting some time before I settled and it seemed to help. I've tried not using the ramp period and I couldn't do it. I settle much easier with the 30 minute ramp than anything else. And the dry mouth and hairdryer feelings haven't (yet) been an issue. So I have something to be thankful for!

I didn't realise until I read my post back after I read your reply just how negative I sounded. I AM getting used to it. I had a full night without the mask the night before last (to catch up on some sleep!), and I was more unsettled than usual, I think in part because I'd got used to the feeling of the mask so quickly (despite the leaks, occasional pressure pains and nose tickles)that it felt odd not to have it on. That surprised me.

I don't dread going to bed at the moment, but I do dread how my back will feel when I get up. I already suffer a lot with my back and part of the reason I think I had a better night last night was changing my sleeping position. But boy did I feel it this morning! I wish there wasn't a trade-off but I fear it may be necessary.

Oh well... I'm trying to look on the positive side - the joy of a challenge is coming through the other side successfully. Or something

**Kaele74** · 24 June 2010, 21:00

Good news

TiredBoy, I'm so glad it's all looking up for you

Long may it continue to improve!

K

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