British Snoring & Sleep Apnoea Association

I was officially diagnosed with OSA 5 days ago though I'm sure my husband would say that he diagnosed me a few years ago, and have had my CPAP machine for 3 nights now. My Epworth test scored very high and my diagnosis is severe, I apparently spend more time not breathing than I do breathing whilst asleep. I was rushed up the list and so it has been 21 days from sleep test to getting my CPAP machine. Before I say anymore, I am very very grateful for the help and advice from my clinic and the fact that it is all treatable makes my whinges rather silly, but I have taken an emotional dive in the last 48 hours and was so relieved to find this forum and know that for once in my life I am probably actually quite 'normal'!

I admit that I was feeling quite negative when I saw the array of masks as I do get clostrophobic and even wearing those dust masks for decorating etc, sends me into sweats so not a great start. I've managed an average of 2.7 hours sleep per night according to my machine and I now feel more tired than I ever have. My greatest problem is that other than the snoring and the ease with which I fell asleep if I dared to sit to relax through the daytime, my symptoms were very minimal. I have never fallen asleep mid any activity whether it be driving, working or day to day stuff, I only fell asleep when I sat down comfortably and I know that I should be able to sit and watch TV or read a book without falling asleep but it's always been a 'just me' quirk, that I can't.

I also have pernicious anaemia which involves intramuscular vitamin B12 injections every 12 weeks and tiredness is a major symptom of that condition too. The tiredness for that is most noticeable 2 weeks before my B12 is due and for about 3 days afterwards, until it kicks into my system. A CPAP machine isn't going to treat that condition so that's not going to go away which is OK.

Oh dear, what a whinger I've become . I suppose my biggest fear is that, getting used to this machine, so far, has been hell and possibly for what?! I am suffering sweats from feeling hemmed in with the mask, my nose and throat are really sore already as well as 2 patches of 'rashy' sore skin on my forehead where part of the structure of the mask sits. I can't seem to breathe enough to use the air that's being blasted at me and so have a feeling of my chest being like a balloon. It feels like the machine is trying to rush me, I'm exhaling but it's still trying to push air in at the same time! I do get to sleep eventually but soon wake because I'm so 'blown up' and uncomfortable. I have ended up having to use my ventalin each night that I had the machine and yet it's been months since I've needed that, as my asthma is well medicated.

I am so torn right now! I am, believe it or not, usually a 'just get on with it' sort of person but I have met my match this time! I realise the dangers of leaving myself without treatment especially as I am scheduled for quite major surgery soon, so that's not really an option BUT long term I can't see the gains. I have read other peoples stories of great improvement in their quality of life due to how disruptive their symptoms were before but I don't have that incentive as I don't have those problems. The one symptom I have is also symptomatic of my other, unrelated, condition so that's here to stay anyway. I now go to bed with a mask on my face and the airflow prevents me from talking. So, where I used to snuggle into my hubby and we'd chat about our day until we fell to sleep, I now lay on my back, silently with my plastic barrier to any snuggles I used to get and inwardly so lonely!

I'm sure that if I haven't manicly depressed you all too much to reply, that you're going to tell me that it will get better, and I'm sure you're right. As my Mum said yesterday, I don't do 'change' very well and it just feels like this has come along and burst my little bubble with a very loud POP and I now feel worse, more tired and irritable than ever before. It's not like catching something that 7 days antibiotics will cure is it, this is it, this is life now and at 41 years old I feel old before my time, lonely (though my hubby is so supportive) and broken!

I will be as quick to write about the positives of all of this, when I have found them!

I hope you're all well
Best wishes
Kazzie

Hello Kazzie and a BIG welcome! Thank you so much for posting and for being so courageous in telling us what's going on for you at the moment.

It is quite a lifestyle change to discover you've got a serious medical condition that needs lifelong management .... and to say that this can be a nasty shock is really an understatement. We've all been there. You are not alone and you are certainly in the vast majority who think 'Heck (or worse!) Will my life ever be the same again?'

I've been living with a CPAP machine for over 10 years now. It was strange at first, but I'm sure your husband, like mine, will be grateful for more quiet in the bedroom so HE can get to sleep(!) and that you will be around for much longer than if you hadn't been treated ... your risk of a heart attack or stroke in your sleep would have been considerably increased before treatment and now it is back to normal!!

Please be assured that having xPAP doesn't mean an end to intimacy as you've enjoyed it before. It simply means incorporating putting your mask on when you're ready to sleep. I can snuggle against my husband because the hose can swivel and thus be moved out of the way and all the material is quite soft and pliable. The only complaint is that he can get a little breeze when he's not expecting it on his face from the valve where my exhaled air comes out. OK so it's not the sexiest accessory but you and he WILL adapt to it in time!! I'm sure he's glad you are going to feel less tired ... the OSA has a considerable effect on your mood and sleepiness, even though you are still being treated for the pernicious anaemia. You should start to feel a bit more optimistic soon.

However, let's look at a couple of specific problems, which I'd like to reassure you are common to nearly ALL of us when we start xPAP. You are NOT repeat NOT being a whinger, but simply trying to come to terms with something that is completely new to you. AND ALL CREDIT TO YOU FOR STICKING WITH IT.



The sweats are normal, and will go away once you try to deliberately relax. I think they're related to something else which I'll deal with later.

As regards the soreness in the nose and throat, have you been given a HUMIDIFIER? This will moisten the air before you breathe it in, and I think you'll find that this makes the whole procedure far more comfy for you and will alleviate this problem. Contact your sleep clinic ... but hang on because there's a couple of other things to mention!!

The rashy skin (and sore spots) are also quite normal as the face needs to get used to having something placed against it. First of all, make sure that your skin is nice and clean and dry before putting your mask on. I found I needed a 'corn plaster felt doughnut shape' to fit between the sore spot on my forehead to give the skin a chance to heal. Other people find that a pad of gauze also proved helpful ... you need to make sure though that it doesn't make your mask leak. Do make sure that you have a good mask fit .... lie down with your machine OFF. Put the mask on and pull the mask tabs gently so that they are symmetrical and that the mask just sits gently on your skin and is not pressing down hard. Depending on the type of mask you have, adjust the mouth tabs first and then the forehead ones. Once you've adjusted the mask you can put the machine on. This may be all you need to do.

Oh and moisturise the sore bits well in the daytime too .... good excuse for a nice present of some pricey swish cream perhaps!!!



I can't speak for the Ventolin and your asthma, but I think I can suggest a way forward for the first part of your paragraph.

Many xPAP machines (and you don't tell us which one you're using so I can't be 100% sure, hence my word 'many') have a feature that makes it easier to breath out than breath in. This is called an EPR (expiratory pressure release). Some of us need this feature, some don't. Most of us don't start off with our clinics enabling this feature, but if we find that we have the effects you are suffering, we have to go back and ask for it to be enabled. Explain this to the clinic and ask to have the EPR on your machine enabled, or to have another machine given to you with this feature. Oh, and sorry, with all this helpful air going into our bodies, we do burp and fart more than we used to so don't be surprised by this!



You put your feelings into words very well. I don't think there's a person on xPAP treatment who hasn't felt exactly the same. I know I did!

You will be able to use your machine in hospital when you have surgery and it's vitally important that you tell your surgeon and anaesthetist that you have OSA as you'll need to have a special eye kept on you when you come round. Also you'll need to use your machine when you sleep in hospital. You and your hubby will come to a new understanding about chatting in bed and snuggling. And it will be extra special because it will be unique to the two of you. You WILL find that you have more energy during the day and your mood should pick up. It's always a difficult start, but once you become used to your machine and mask, there's nothing you can't do .... holidays, overnights with friends ... life WILL continue as before, but it will take time to get used to it. If you do intend to travel, make sure you have an extension lead and a foreign plug adapter as part of your kit!!

The problem with OSA and its management is that it is so much more common than you might think, but it's still a bit taboo and you can't see into everyone's bedroom at night! You are still young (I'm old enough to be your mum) (JUST!!!!) and although I thought I could take on all of life's challenges, it's only recently that I've learned that sometimes you need other people's experiences and encouragement to take on something new. It's NOT weakness on your part and I admire your determination to succeed and am cheering you on, but sometimes you do need a bit of input from someone who's been where you are now!!

Please stay in touch. You've made great strides in coming to terms with the management of your OSA, and I am sure that time - and getting help from your sleep clinic in the form of a humidifier and in the EPR enablement - will be all that you need. In fact I wouldn't be at all surprised if you end up helping other people at the beginning of their xPAP journey and being very good at it.

Kindest regards ... and phone your sleep clinic!

Alsacienne, you a very kind and welcoming person! You are a vast wealth of handy information too (as well as others around these boards). All the information you have posted are questions that had been lurking around in my mind too but I had forgotten to ask.

Thank you

I second that

Kazzie, your post is certainly not whingeing! I'm sure your post takes all of the posters here back in time.

It's early days and you're newly diagnosed, so things can only improve.

All the best.

Wow, thank you so much for your support. Sorry, I forgot to say yesterday that I have a Res med series 9 CPAP machine.

Funnily enough I did call my clinic straight after posting yesterday and I now have a humidifier and they altered the EPR. They also looked at the pressures on the read out and it apparently rose to 12.6 (I'm not into all the jargon yet to know 12.6 of what, exactly) and it woke me each time but my recommended pressure, if my machine were to be changed to constant instead of regulating, is 12.1 which apparently wouldn't make much difference. They did say that if I tried the 2 new changes and am still having problems of 'over breathing' etc then I'd to call back in the morning and they'd turn the machine down to 10 and look to gradually increase it at my pace until I tolerate 12.1. However, that would mean I'd still have some apnoea episodes but no where near as many.

I promised to be as quick to be positive as I was to 'whinge' and I have to say that last night was a huge leap in the right direction. I managed 4.6 hours last night which is a vast improvement and would have been longer but my son had a nightmare and needed Mummy. The 2 changes have made a big difference. I was comfortable breathing and while the previous soreness of my throat and nose are still there, last night didn't add to it and they do feel a bit better today.

I haven't tackled my forehead yet but on looking in the mirror this morning I must! I bruise ridiculously easily and my 'sore spots' now have underlying swollen purple bruises each looking like I am about to break out with horns which are not attractive but I did just have to laugh! I checked my straps last night and they are as loose as possible without losing the seal.

I did manage to sleep on my side too last night, without dislodging the mask but it's early days for my hubby as, while he is my rock in every way, he couldn't cope too well with the airflow on the back of his neck.

There is a light at the end of the tunnel and you are right Alsacienne, that it will all just become part of my life's routine. Holidays are a downer as we are avid campers and while we sometimes have pitches with electric hook up it's not often as we have a huge tent and can usually only go in the open field section of most sites. On the upside, hubby says that just makes it time for a caravan instead so we'll see.

I was never worried about intacmacy for me and hubby, it's the snuggles that worried me. He's never made any suggestion that he has a problem with this situation, the worries are definitely coming from me. I cried to my Mum on Saturday that I was worried he'd leave me, that I'm old before my time so he'd go find a younger (healthier) model, that he'd roll over in bed and glance at me in disgust but smile if I looked back at him. I have found myself badgering him to know his true feelings because how could he not have a problem with this? How can he not mind sleeping next to someone who can't perform the fundamental task of breathing on her own? My feelings are so alien and while I am encouraged by last nights improvements and I do know that it's me that has to get my head around this I still feel like damaged goods. I would feel lonely in a crowded room right now and even though I feel incredibly loved and supported, I feel like I've let my family down.

On a great note though. My daughter was having a sleep over about 18 months ago and my little boy went up to her guest and said 'if you hear a horrible gurgly noise in the night, don't worry it's not a monster. It's my mummy making her sleeping sounds'. This morning he said to me 'Mummy you don't make sleeping sounds anymore. When I woke up I went downstairs to find you because your room wasn't noisy. Your new machine is a magic one.' So we all stand to benefit from my magic machine!

Thank you again for you support and kind words because for all the support I am getting her at home, I think it takes someone to be in the same position to have a true incling of what it's all about.
kindest regards
Kazzie

Kazzie, thank you SO much for replying. I'm glad the clinic responded in the two quickest ways they could ... and now just work with them and see what happens!! The 12.6 is your pressure setting, and there isn't a world's difference between 12.1 and 12.6. Pressure adjustments have to be tweaked VERY gradually (I know to my cost!!!) and allowed to settle for at least a week if not two between tweaks to get an overall level!! (Our 'scores' can vary quite widely from night to night!).

You are right that it's early days! But you and your hubby WILL find the right 'angle' for snuggles without that extra breeze!! Try to treat it as a new part of courtship (if I'm not being too old-fashioned) and live, laugh and learn together. (And it is the TOGETHER that counts ... he too has a lot to learn about xPAP therapy and not to worry overmuch!)

You mentioned camping. It's funny because in my original post I nearly said 'the only holidays you won't be able to do will be camping'!! BUT I've read posts on other sites from Americans who do camp without hook-ups because they have got a small generator or can do a hook-up of some sort using car batteries. I'm NOT advocating this without expert advice! You CAN get batteries - I have one for long haul flights but it only gives me 4.5 hours use (my pressure is 14). It would give you about 5.5 hours use at 12 pressure. However, it's a small one, and I believe that BSSAA do have a much better one that would give you longer use (but it does cost a bit more, and I had to get one quick where I live in France.). You MUST get the right connecting lead from ResMed or the CPAP will blow a fuse and won't work (something to do with polarity ... again gleaned from the US sites I visit infrequently.). But you CAN camp rough, IF you plan ahead ... and have a couple of nights practice safely at home before you set out!!!

As for the lumps and sweet spots! The skin will eventually get used to your machine's mask but for the meantime do try putting a 'buffer' between your mask and your skin. Moisturise well in the daytime, and make sure that the skin is dry before fitting your mask. And the bruises? 'Touche Eclat' was made for this!!



But sweetheart, you ARE breathing on your own!! The air is coming from the room in which you are sleeping, just as anywhere else!! What the machine is doing is putting the air under pressure so that it keeps the airways open when your own muscles are relaxing because you are asleep! You can't keep any of your muscles tense and working when you're asleep and neither can your hubby!! The machine is just helping you to keep the muscle tone in that particular spot (your throat). It's like having a cat flap in a door. You can open the door to let the cat in, but the cat can also get in when you're away through opening the flap on its own. The xPAP machine is the cat flap because it helps get the air to the right places (heart and lungs and brain) when you're away ... asleep!

I don't think there's a lady alive who hasn't feared her partner (or hubby) might trade them in for a younger model during a moment of self-doubt. But it takes a very special lady who will go the extra mile to keep herself well and alive by facing up to and managing a serious health condition. I think your husband, once he's come round to accepting the changes, will be even more proud of you that you've managed to be so pro-active in your own healthcare and want to be with him for as long as possible!



I hope you will permit me to be honest with you. You have shown great courage in writing this and I think that you need to know that what you are saying is 100% NORMAL AND HEALTHY. It's just that most of us don't manage to put such thoughts down on paper.

I suspect that before you were diagnosed, you'd been suffering from OSA for some considerable time, waking goodness knows how many times a night, and not knowing it, getting no real deep sleep and still managing your best during the day time with all the household and childcare tasks .. and possibly even a job on top. However hard you try, and how much you seem to succeed you will inevitably get worn down by this to the point where you can have periods of low mood and even depression. That would certainly contribute to the 'alien' feelings you are feeling, and they are often quite random and illogical ... not least because they are linked to your brain trying to make sense of thoughts when you're sleep deprived - perhaps not in hours of sleep but in hours of QUALITY RESTFUL sleep!

I understand your reference to 'damaged goods' but I think that this may be because you don't perhaps understand how many THOUSANDS of people use CPAPs every night all over the world!! We really are a considerable community!!! Lots of famous people suffer from OSA too! You could always look at http://www.apneasupport.org/celebrities ... 20-15.html for starters! But try working your example of 'damaged goods'/'unable to breathe for myself'/'let my family down' ..... what if you had a broken leg with your leg in plaster and a crutch? I doubt you could apply these thoughts to yourself ... and let's take it a stage further, supposing you suffered from diabetes and needed to take insulin by injection and needed to avoid sugars, cakes, honey and all the nice nibbles that most families love ... would you feel the same? I don't think so. I might be wrong ... but I think you are being SO HARD on yourself and you really don't need to. You haven't let ANYONE down ... not even your husband, because you are doing the maximum to make sure you are around on this earth for as long as possible for YOU, YOUR HUSBAND AND YOUR FAMILY!!!!

If these feelings persist, (and I don't doubt that they are very real and very persistent) and you don't manage to shake them in a few weeks' time once you have got your CPAP working as you would wish and are getting more good sleep, it might be worth having a chat with a professional to see how you can help yourself or if you need to explore them more deeply with someone else. I hope that they are just part of the current upheaval, and that once other things settle back to normal, they'll disappear or you'll have been able to work through them. Keep an eye on them, but it's more than likely they'll go of their own accord once you've got over the enormous shock of xPAP and its effects on those you love.

The S9 is a great machine ... quiet, discrete and pretty sturdy! Mine is well-travelled and you should find it becomes a good friend. It was a delight to read what your son said to your guests! When I have youngsters sleeping over (even with parents) I always show them my equipment, so that if they need to wake me in the night for any reason, they are not scared and know that it won't hurt them! I even let them try my mask if they wish and explain what everything does. In this way we can gently educate future generations to be more tolerant of any OSA sufferers they come across, and make it easy for xPAP using friends to stay!

DO keep in touch. You are making massive progress. WELL DONE.

Many thanks again Alsacienne for your continued support and encouragement. I managed 6.8 hours last night so a vast improvement on the previous 4 nights. When I went to bed I left the humidifier setting at the same as the previous night (no3) but I woke up about 2 hours into the night very dry and having the clearing throat problem again so I cranked it up to No4. That sorted the dryness and coughing but then I ended up with water in my mask which is what the clinic said would happen if it was set too high...not sure what to do now. That 2 hours of dry and really irritated my throat which was healing nicely so I needed the moisture but I didn't really want a shower whilst in bed (have to laugh).

I also think that I may have given the wrong impression about my wonderful hubby in my previous post.



He hasn't looked at me that way or even implied it. He's been 100% supportive and encouraging, the fears are all my feelings getting out of perspective because of how stupid it feels wearing a mask, how isolating it feels for me and in turn that means he's lost the snuggles and conversation too. We are in this together and will deal with it together as we always do. I just have a tendency to be a little insecure at times as I don't deal with change too well. I am a stickler for routine and a bit of a control freak, a time for everything, a place for everything and I do chores, jobs or whatever, in the same way every time. I don't rearrange furniture or drawers and I keep everything just so and I think that my biggest problem over the last 5 days had been dealing with the change. In my work I was hopeless at delegating jobs, I'd just get on with them myself, my own sweet way. Don't get me wrong I'm not a conceited drama queen that thinks everyone elses way is wrong, in fact quite often I end up doing things the hard way but I just like control and I don't like giving anyone else the chance to let me down. Now something has come along and changed 'my way' without asking me first. It's something that I realise that I can ultimately control but at the moment it's got me and knocked me sideways.

All that said, I do feel proud of myself today, I stuck with it.

It's funny because I did the same as you with the machine with my children.



I have sat down with them and told them everything in a way they'll understand but not be alarmed. I've also shown them the machine and the mask and let them see how it all works for reasons that you said, I don't want them to be afraid to wake me if they need me. That said, my 11 yr old daughter needed me in the night last night but she said that she knew how hard it had been to learn to sleep with the mask and I apparently looked so comfortable she didn't like to wake me so she curled up on the floor next to my bed - damn machine!

Well I'm on the up so I'm such a whinger now but still ironing niggles. I'm always open to advice so please fire away if anyone has any that will help with any of the issues I've said. While I like control, I do listen to opinions and ideas

thanks again and best wishes

A truly rewarding post to read! WELL DONE. I'm sure that you were having a real down moment when you wrote about your hubby and am so glad that you recognised it as being temporary and are now happier with the reality of what he's like! Our partners have to join us on the learning curve, and it can often be as hard for them as for us!

Just to say that the waterfall effect is known as RAINOUT and is very common. You'll possibly have to tweak your humidifier heating to between 3 and 4 to find the exact right value for you ... and you might find it easier to put the machine LOWER down than your bed and bedside table ... hot air (as water vapour) rises, so it can make it up through the tube but when it cools it falls back ... and if the machine and humidifier are lower than you, with luck the 'rain' will fall back into the humidifier and not on your face!! You'll get there!

WHAT PROGRESS! WELL DONE AGAIN ... and please do stay in touch. Let's hope that it's all good from now on!