Advice wanted for new CPAP user

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Permalink Reply by Kath Hope on December 22, 2011 at 15:30

Hi Mike and welcome to the forum.  You've come to the right place for help and support!

Sorry to hear you've not got off to a good start - sounds very much like me in the early days  It's also not easy accepting that this is for life, but once you get your treatment successful and start to feel the benefits, ie healthier and more energized, then I'm sure, like most of us, you won't want to sleep without the CPAP.

The hose lift you've just bought should help tremendously with not getting tangled up with the tubing, but the comfort aspect and getting the 'right' mask is so often trial and error.  Take a look at my story over on the website - Kath's Story  I honestly hated CPAP at first and thought it would never work for me.  Now I would never sleep without it!

Tell us what the worst problems are at this stage to see how we can help.

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Permalink Reply by Mike Spicer on December 22, 2011 at 15:50

Thanks Kath,

The hose lift has arrived today so I'm hopeful that will help. The mask feels very restrictive and tight (tighter apparently because I have a beard so needs to be tight to prevent leaks). I was also surprised as to how big it was,coming right up my forehead and down to my chin. After three nights I have bruises on my cheeks and forehead, obviously from where I have laid on the mask in the night and, because I'm still not sleeping, the whole palava just feels very awkward and gets worse as the night progresses. I used to read myself to sleep but, needing reading glasses, this is no longer possible.

At least I now know I'm not alone!

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Permalink Reply by Darryl Milligan on December 22, 2011 at 16:13

I had got used to tiredness, and had modelled my life around it. According to my consultant, I have had OSA, undiagnosed for probably 25 years. I was diagnosed on 23/11/11, and received my CPAP on 19/12/11. At first I had a ResMed Mirage Quattro FX mask. I could not get used to that, I spent most of Monday night trying to address an itch between my snout, and my mouth, and trying to stop the gale blowing into my eyes every time I moved my mouth. I got straight onto the hospital, who gave me a FlexiFit 407 nasal mask yesterday, which doesn't leak when I turn over, and now that I can reach the itch, I don't have one to scratch. Keeping my trap shut was surprisingly easy.... I just pretended the wife was talking! I had a fantastic night sleep last night....

Yeah, it might mean sleeping like a "Borg" off Star Trek, but I have not needed a nap since I started (I usually had 2 to 3 naps per day!). I found the pressure no problem, and mine is on 12 at the moment. The mask was the main thing, once you have one which you can live with, I reckon you will have no problems. Persevere, ring the lab that prescribed it, and list your gripes to them. Mine promised to buy me whatever I need to make things comfortable. I queried the level of expense being high for NHS, but the Nurse laughed and said, "don't worry, we don't pay for it, we bill your GP!" With that, I am happy to accept whatever makes things easier. How about asking for a nasal mask (they appear to leak less for me), and one of those tube holder stands? (I see you have got one of those....let me know what they are like).

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Permalink Reply by Terry Vella on December 22, 2011 at 20:20

Mike, It does get better, it just takes time and you are probably like me impatient. I love my CPAP because I feel fresher each day when I used to walk around like I was in a coma. I still have a long way to go but are on the upside. I can no longer sleep without my CPAP. I have a Resmed Autoset CPAP which is silver and I call her 'Silvie', I think my wife gets jealous when I say I am going to bed with Silvie. The hose lift will make a dramatic difference. Also try mask liners, especially if you have a beard this should really help the mask leaks. Make sure you get the mask right even if you have to change a number of times I try 5 masks before I got the one I like and are comfortable with. It took me about 6 months to get everything ironed out and comfortable with the whole lot some people can get it right the first night, we are all different. Good Luck, stay positive and keep using it. Keep us updated with your progress.

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Permalink Reply by Mike Spicer on December 22, 2011 at 21:53

Thanks guys for the feedback.

The mask I was given at the Sleep Disorder Clinic was a ResMed Mirage Quattro. There was talk about different ones but I never saw or tried one. Is there anywhere I can try a variety of masks because i feel that this one is not the right shape for me, although I realise that after only three nights, I may be prejudging it.

Thing is, I am dreading going to bed and I don't want that.

Sleep well everyone!

Mike

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Permalink Reply by Kath Hope on December 22, 2011 at 22:16

You've been given a full face mask Mike, so obviously you are a mouth breather.  This cuts down your choices, and the biggest problem you have is the beard.  What I would do is ring your hospital first thing in the morning and tell them you're trying your best with the mask they've given you, but it's just not working and you don't want to be left over christmas like this.  Hopefully, they'll try to help you as you need to try out the different masks.  You can obviously purchase one yourself, but that would be very risky without having tried it first.  Your hospital should have a good selection for you to try.  If you go for a nasal mask you will need a chin strap as well to keep your mouth closed, and not everyone is happy with these.  Some people adapt to them though.

People with beards tend to have more success with the Respironics ComfortGel Full or the Fisher Paykel Flexifit 432.  I'm also wondering if my favourite mask which works for me - the Respironics FitLife would be better, but your hospital might not stock this one as they're more expensive.  This one seals around the edge of your face instead and I wear it underneath the chin.  It would depend how long your beard is.  Have a look on the website at the two Respironics ones to read more about them, and if you Google the Fisher Paykel one you can check that one out too before you go to the hospital.  Here's the link to the website Shop

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Permalink Reply by Darryl Milligan on December 22, 2011 at 22:19

I was "guided" to the same mask by my clinic..... but when I rang them and moaned it was too claustrophobic, they made me an appointment for next day, and showed me a range of masks...I read up on them so had a rough idea what I wanted. Ring your clinic...

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Permalink Reply by symmit on December 23, 2011 at 8:05

Hi Mike. It gets easier, I've been on CPAP for 13 months and now cannot imagine going back to life without it.

There are various companies selling masks online, if you have the financial means you may want to go down that route (I did) - the Sleepweaver is a great choice for a nasal only mask for bearded people as it uses a cloth seal that is inflated by the air pressure, as mentioned above also the Fisher and Paykel full face masks (flexifit 432 / forma) seal to the chin (I had one, was very effective but a little more noisy than the others).

The quattro FX is softer and more flexible too and may be worth a try.

Even if you're normally a mouth breather it is worth trying a nasal mask, after all you may be only breathing through your mouth because of the airway issues that the CPAP is trying to relieve - you'll find a nasal mask much easier to live with (I use a sleepweaver)

Dare I suggest losing the beard :)

Good luck, and welcome!!

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Permalink Reply by Mike Spicer on December 23, 2011 at 18:56

Thanks all for your comments.

Kath, may I say that the hose lift made the night much easier but the mask issue is the same - I don't think the issue is the seal or the beard as much as the shape of the mask which isn't made for someone with a face shape such as mine (basically pretty round) so it just sticks into my cheeks and barely touches my chin.

I'll take the advice received and contact the hospital now. I'll let you know how I get on.

Thanks again,

Mike

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Permalink Reply by Kath Hope on December 23, 2011 at 21:51

Pleased to hear the hose lift's helping and sounds like you need a change of mask though.  Hope you can manage to get some decent sleep over christmas until you can get into the hospital.  Try putting the straps in places they're not meant to go (ie upwards towards the top of the head) to see if that helps - even using bits of bandage if necessary.  I was exactly the same as you at first - it seemed like no mask was there to fit me, but there is one out there for you.  It's just a case of finding it!

Mike, I also meant to say, I also 'have' to read before I go to sleep so try to find a way to do this if that's your routine.  In the early days I used to read before I put the mask on, but I ended up falling asleep without it on a few nights.  I invested in a large strong magnifying glass, but now I have an Amazon Kindle E-Reader which I have increased the font size to the largest possible.  With the FitLife on I can see to read without my glasses, even through the mask.  The Hybrid mask is a good one for reading, but they don't usually work well with facial hair.  Another option would be to check on 'Kath's Blog' on this site where another member has mentioned magnetic glasses which can be bought on Ebay.

Don't suffer alone over christmas.  I'll be popping onto the forum and I'm sure others will to.

Mike Spicer said:

Thanks all for your comments.

Kath, may I say that the hose lift made the night much easier but the mask issue is the same - I don't think the issue is the seal or the beard as much as the shape of the mask which isn't made for someone with a face shape such as mine (basically pretty round) so it just sticks into my cheeks and barely touches my chin.

I'll take the advice received and contact the hospital now. I'll let you know how I get on.

Thanks again,

Mike

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Permalink Reply by Mike Spicer on December 26, 2011 at 14:53

Thanks Mary.

Unfortunately the hospital I got it from is moving over Christmas so I won't have a chance to speak to them until the 30th.

Four days to wait!

Cheers,Mike

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Permalink Reply by martin mucznik on December 26, 2011 at 17:54

hi mike,i tried allsorts of masks over the years but now wear a swift mirage two, nasal mask this just fits up your nostrills so no problem with beard.i could not get on with it at first but hey ho it works now.i dont sleep very well anyway due to other illness so tended to be a long job ,but got there in the end.keep trying,best wishes,muz

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