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Permalink Reply by Kath Hope on January 9, 2013 at 17:12

Welcome to our forum Mark, and glad you found us with you struggling.  Hopefully the full face mask will help you and you'll soon be on good therapy with renewed energy and good health.  Feel free to start any new discussions for any help or advice you need.

Look forward to talking to you.

Kath

mark peters said:

Hi, Im Mark and Im new to this sleep apnoea lark, I got my cpap machine on christmas eve and have struggled ever since, changed from a nasal mask to one that goes over my mouth now so hopefully I can discover what real sleep is.

 

I look forward to getting to know you all

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Permalink Reply by Terry Vella on January 9, 2013 at 19:51

Welcome Mark, as Kath said please start a discussion and tell us your issues, I think we have a good success rate if helping and supporting others with our illness. At least you know your not alone.

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Permalink Reply by Steve Clarke-Keating on January 18, 2013 at 15:53

Thanks again Kath for the info about the site and forums.

I've had quite the ride with apnea. I was diagnosed in December of 2011 by an ENT and then referred to the sleep clinic thats nearest my side of Manchester. I was finally given a CPAP in March of 2012 and it all went downhill from there!

I always thought the thing that would bother me most about CPAP would be the air pressure. I couldn't picture how it would be to have a machine inflate my lungs for me essentially as opposed to the natural breathing rhythm. Turns out that I'd not at all be bothered by that but in fact find the mask a completely heinous experience!

Having that full face mask clamped to my face was stopping me from getting to sleep even at the depths of tiredness. Shortly after I picked up a cold, then a chest infection, then tonsillitis and then worst of all, even though it doesn't sound it, I developed a post viral infection in my lungs. It got so bad the cough was almost constant and I'd end up coughing until I couldn't breathe or my head would feel like it was exploding. The extreme dryness was made worse by the CPAP even with the humidification so I had to stop using it. After some testing and final diagnosis and a steroid inhaler, the infection eventually cleared up but I'd gotten to such a negative place about CPAP that I couldn't stand the thought of using it anymore. After a couple of technical follow ups at the sleep clinic where I told them about the medical issues that stopped me using it, and getting a smaller mask because they realised that the large size was too big and leaking too much, I still couldn't get used to it.

One of the main problems for me is that due to a neck condition, I suffer a lot of tension headaches that always creep on towards the end of a day. Having the sleep mask clamped to my head, particularly the forehead part, was not working for me at all, it would make having a headache much worse. Not to mention the deeply ingrained negative attitude towards it.

I will interject here that I became fed up of the sleep clinic's attitude towards non-compliance, they pretty much treat you as a child. I've also had to discover all the issues that can crop up with CPAP usage on my own, they tell you nothing and just expect you to get on with it. I ended up putting off appointment after appointment to avoid further tellings off and like a yo-yo dieter I'd tell myself "I'll start next week".

I went searching a few months later for alternative face masks as it was clear I'd never be successful with the full face ones as they come. I was lucky enough to come across the Philips Respironics range at the time, and they'd just launched a new one in the states called FullLife. I still don't think its available over here. The thought of using a mask with no forehead bits was very encouraging so I forked out the £140 odd to get it imported after using the measuring tool to pick the right size.

It was also a boon to have a mask that doesn't obstruct your field of vision. Meaning you could wear it during waking time to get used to it but still watch TV or rear or be at the computer etc. However, I still had the nasal problems I'd been having since before I got the CPAP originally and discovered that from mouth breathing, even with maximum humidification, I'd wake up gasping in the night for moisture and ripping the mask off. This ruined it again and I'd all but given up.

It got to late November when BBC aired their Goodnight Britain two part special. Seeing someone get used to a non humidifying CPAP machine so quickly, plus the sheer almost depression of having no life at all due to the long term extreme fatigue. The program on BBC One showed that the chaps apnea was quite bad, but then I remembered my diagnosis as being severe as I stop breathing around 38 times an hour for anything up to a minute. It didn't help to know things like the boyfriend that I'd recently broken up with lost his former partner to sleep apnea that had gone untreated for too long. All this just made me realise that I had to get a grip.

It was a pipe dream for me to see weight loss as a cure when a) you're too tired to do any of the exercise needed to make weight loss successful and b) long term fatigue ruins your metabolism so much that its very, very difficult to lose weight without almost starving yourself. Plus I'm aware that even if apnea started after being overweight for a certain period, there's no guarantee that losing the weight will cure the apnea, the soft tissues at the back of the throat don't always recover.

I knew I had to get on with it and just persevere, and eventually it would get better. At the start of December I made sure to put the mask on every night until it became almost habitual. I started seeing someone as well who was greatly disturbed by the snoring that occurs without CPAP so he was very encouraging for me to use it, which helped.

I also got a special nasal spray on prescription which is helping to keep my nose unblocked at night, and that's made a huge difference.

It's now mid Jan and I'm putting the mask on every night. Importantly, I've gotten past that mental block of using the mask and it doesn't bother me anymore. I am experiencing other problems now like washout, for which I've ordered a tube cover from this site today and I'm still removing the mask in the night with no memory of doing so here and there. If I wake up and its off I put it back on which I never used to do.

My main problem is general sleep hygiene as its called. I'm still going to bed far too late so even if I get 6 hours or so of CPAP, thats about all the sleep I've had so I'm still tired the next day. When I sleep longer at weekends and get 7+ hours of CPAP, then I feel pretty much human the next day, so the next thing is conquering this staying up late nonsense and getting my arse to bed by at least half ten! I think I kind of resent going to bed too early because I'm losing more of the day, which is stupid because the following days tiredness stops me from being productive. Whereas if I went to bed early enough and got enough CPAP, I'd feel well the next day and be able to do more anyway! But having days where I know CPAP is working for me is keeping me going using it, something I didn't think I'd be able to get past not so long ago! 

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Permalink Reply by Kath Hope on January 18, 2013 at 19:51

Wow Steve, that was a long read, but not surprising with all the problems you've had.  Good to read that you're now over the mountain though with just a few issues left that you're sorting.  Hopefully, the hose cover (which is on its way to you) will help with the 'rainout'.  Make sure you have the tube elevated as well.  The Hose Lift is great for this, if you haven't got one, and as well as helping with 'rainout' it helps make the mask feel much lighter on your face and rotates with you.  It's a shame Respironics didn't bring the FullLife across here.  I don't think the reviews were good enough, but great to hear it's working for you!

Getting to bed earlier will definitely help, and I'm speaking to myself as I type this, as a confirmed 'night owl.'  Have been one of these all my life!

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Permalink Reply by Terry Vella on January 18, 2013 at 21:12

Steve, welcome and I think you answered most of the questions yourself in your detailed reda, most of this is attitude, I think about 90% then about 10% mask and the CPAP is nothing because it does it all for you. Just with the air in the lungs, it doesn't make us breathe it, opens our airways so we can breathe. Some people g in with a negative attitude towards it from the start and they are the ones that normally fail and give up but you seem to have turned that around. It's the ones that go in with a positive attitude that know it will treat us, as there is no cure, are the ones that are more likely to succeed. Hopefully you can keep at it and reap he benefits of a good quality life and maybe some of the other issues clearing up like meny of us  have experienced, good luck.

Sorry I forgot good sleep hygine is so important and I think you know that and a smack on he wrist to Kath who should know better 

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Permalink Reply by Arie Klerk on January 27, 2013 at 19:24

Well, here I am, a Dutch sufferer. Since April 2010, OSAS is diagnosed and treated on me, after I fell asleep on the road at 80 km/hr (as worst thing, without injuries however) and missing too many good presentations in NATO, ILSC  and IEC meetings (just annoying while I was snoring loudly...). And of course it was my wife who told me to see a doctor. Which I didn't! Until I joined her on a visit to the doctor and saw a flyer on Sleep-apnoea from the Dutch "Apneuvereniging". I spoke to the doctor, he sent me to a specialist, who invited me to have one night sleep in the sleep-laboratory. Outcome: 49 AHI and a CPAP within three weeks. Now my Apnoea-index is down to 0.2 - 0.3.

You will not hear me talk about the AHI, as my S8 gives a too high number for that, it would be 8.6. Which neither I nor my specialist do believe in.

Since a week I am one of the coordinators for the ResMed user group on the forum of the Apneuvereniging (http://www.apneuvereniging.nl/forum/index.php) as I am a real fan of ResMed. The special reason for that is an incident I had last October in Oxford. We had a meeting of the IEC TC76 (laser safety) at the HPA in Didcot, but on the Sunday evening after arriving my CPAP broke down. My Dutch supplier would send a new instrument to my home address the next day, but Oxford was a bit further away (say time and money consuming), so I had to leave from the meeting and go home...

A colleague pointed me to the possibility of finding a ResMed representative in England, which appeared to be less than five miles from the meeting place!!! And, even better, they repaired my CPAP free of charge within 20 minutes. My impression of the English went up so high that I forgot cursing about the two parking fines of GBP 100 each in Oxford 

One of which was forgiven to me, the other was halved by paying quickly. 

I hope to learn a lot here and might even be a liaison between the British and the Dutch patients, OK?

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Permalink Reply by Terry Vella on January 27, 2013 at 20:35

Arie, welcome, from Australia not Austria, is it possibly time to upgrade to a S9, I use one and have for nearly two years and love it. We have software that is free called Sleepyhead that can be used on most machine where we see our daily data, minute by minute and everything is graphed like you get at your specialist. Anyway good luck, you seem to be doing well with your AHI.

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Permalink Reply by Arie Klerk on January 27, 2013 at 20:46

Hi Terry, I have ResScan 4.2 and know too well that my S8 gives hardly as much info as the S9. But unfortunately I received the machine in the moth the new one was introduced, so I'll have to wait another 2-5 years to get a new one...

However if you send me a few hundred euros, I can buy a new S9 myself...

Or should I just wait for the S10 and be the first to have one? I'm an Apple adapt too, you-know-what-I-mean ;-))

Arie

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Permalink Reply by Terry Vella on January 27, 2013 at 21:47

Arie, the way the EU is going I could buy a couple of small countries like Greece for a few hundred euros lol, the cheque is in the mail, I was going to say you may as well wait for the S10. With the S8 versus the S9, timing is everything and you probably didn't know about CPAP machines then anyway. I'm not a big Apple fan even though I have an IPhone for work.  

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Permalink Reply by Linda on January 28, 2013 at 21:41

Hi

Just thought I would introduce myself; I've only just got my CPAP machine a couple of weeks ago, after being diagnosed with OSA last November. I've been given nasal pillows, despite repeatedly telling everyone about my chronic sinus problems (investigations into my sinus issues resulted in the OSA diagnosis along the way).

I'm really struggling with the nasal pillows and some nights don't even attempt to use the machine if I'm really blocked up.  I've now asked for a review and been told they'll order me a face mask.  I'm feeling quite down about the whole thing now and wondering if I'll ever be successful in using the machine .

Linda

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Permalink Reply by Kath Hope on January 28, 2013 at 23:13

I'm not surprised you're struggling with nasal pillows Linda, with having chronic sinus problems  Apart from your nasal issues, the CPAP pillows are often not suitable for people new to CPAP.  Let's hope your new mask gets you onto therapy.  If you've not read my blog about choosing masks, you'll see I mention that nasal pillows aren't always a good option at first http://www.sleepapnoeablog.com/choosing-a-cpap-bipap-masks-for-slee...

Try to hang in there Linda - I know how disappointed you feel, as I was the same when I thought I'd never get my CPAP therapy working.  You will though, and we're all here to support you.  Let us know when you get your new mask, and the sooner the better so hope you hear soon!

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Permalink Reply by Terry Vella on January 29, 2013 at 2:42

Linda, welcome, the mask is the major issue with CPAP, once you get it right you will be fine. There are some tips and tricks to getting it right, so when you get it let us know the brand and model and we can help. The whole journey is worthwhile in the end.

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