New and I have questions.... (Bit long, sorry)

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Permalink Reply by Terry Vella on February 23, 2014 at 22:32

Welcome Amanda, on the nose being blocked, are you using the humidifier, if so, you may want to try adjusting the settings up or down a bit.

Your AHI should be as low as possible but below 5, some people can get to zero some nights but it's not possible to be there all the time. I use the same machine and mask, with our CPAPs, when an apnea is detected the pressure will rise to the required pressure needed to open your airway and stop anymore apnea's occuring, so we will have some.

You need to keep your leaks as low as possible and be compliant to get there, be patient, relax and be positive about this therapy.

When you get a bit more familar with CPAP, I can send you a link to free software so you can analysis your data more.

Two tips for new users are have the hose coming from above your head either over a bedhead or you can buy a product called a hose lift or you can make one yourself.

Also to help with leaks and comfort, use mask liners, you can buy them over the net or you can make you own cheaply, I can send you the instructions.

I'm not really sure about the nose operation.

Some people have mentioned forgeting to breathe when awake, eventually our brains and bodies will tell us to breathe, it's the way we are made.

I know this all sound daunting but we can help and support you, once you get used to it, you will be helping others, it all comes with time.

Try to relax with your CPAP, it is your best friend now and it will look after you as long as you let it, it's Monday morning here in Australia so have a good sleep.

And please ask any questions anytime.

 

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Permalink Reply by June Ostiadel on February 23, 2014 at 22:47

Hi Manda, I'm not the expert, however, might be able to answer some of your questions from my own experience. My nose easily gets blocked recently, more so some I've used the CPAP machine; I always have to use a nasal spray before I fit the mask, only one spray up each nostril though. AHi:if the reading is so high when using the CPAP is sounds to me like it's not doing is job, like it's leaking (I'm no expert). Also you shouldn't have to wear the mask so tight that it is marking your face so much (mine marks a little sometimes, think when I've been sleeping heavy) and brushing your cheeks. It is, however, causing a short of dint on the top of my nose. I have appointment on 17 March at sleep Clinic so I will mention this; think I might buy one of those nose cushions. Yes I sometimes do forget to breath! I'm not aware of it until I take a big gasp of air. Hope I've helped a little, I'm sure Kath will be along with lots of other advice. I have to try get some sleep now. ..

Nice to meet you, will catch up later. June

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Permalink Reply by 99 on February 23, 2014 at 23:41

have you machine blowing prior to putting your mask on 

advise no surgery as they tend to make things worse in the run  

when you forget to breath this is central apneoa very serious perhaps you have both osa and csa

a little way out treatment is try lose weight and an alkali diet no sugar

suggestion one level teaspoon of bicarbonate of soda and one teaspoon of molasses mixed together at night

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Permalink Reply by Elianna Halsey on February 24, 2014 at 3:42

Hi, Manda.  I feel your frustration.  Discussion boards, this one in particular, were very helpful to me when I started on therapy a little over 2 years ago.  When I started with my bipap I felt like it was suffocating me if my nose was in any way blocked.  I tried multiple things, including adjusting the humdifier settings, but in the end nothing worked as well as using a generic Afrin nasal spray and dealing with the rebound congestion it causes.  I decided it was worth the congestion during the day to be able to sleep at night.

As far as your AHI, I would recommend giving it a little time to see if you continue to adjust to therapy.  Your numbers will probably fluctuate a bit as your are getting used to the machine.  If they continue to be significantly above 5 talk with your doctor/clinic; they may need to adjust your pressure settings.  

The mask issue is definitely a problem.  Finding the right mask can be a challenge, but I would recommend you continue looking.  If you are having to strap it on so tight that it is causing you pain in your neck and bruising your face then you definitely do not have the right mask.  They can be a little uncomfortable, but should never cause that much damage.  I also tried the mirage quattro when I first started therapy, but wasn't able to keep it from leaking.  I switched to the Resmed Mirage FX and have used it ever since.  I've tried several other masks in the interim (hoping that I might find that one, magic mask that would be incredibly comfortable) but have not found one that works better for me than the mirage fx.   

The problem with forgetting to breathe is called central apnea, as mentioned in the comment below.  Your brain controls your breathing by monitoring the level of certain gases in your blood.  When certain levels get high your brain normally tells your body to take a breath and exhale, blowing off carbon dioxide and replacing it with oxygen, etc.  When you have central apnea somehow the signal to take a breathe and get rid of those gases is interrupted and you stop breathing.  Sometimes it is a disease process that causes this; other times they have no idea why.  I am in the "they have no idea why" category.  It is serious and as I was told, it's a really good thing you are being treated because it can be deadly. So, keep searching for a mask that fits you well so you can stay compliant with therapy and live a long and healthy life.  

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Permalink Reply by Kath Hope on February 25, 2014 at 0:02

Firstly Amanda, good to hear you're sleeping and don't need the sleeping pills - many of which can make sleep apnoea worse.  CPAP does take a little while to get used to for some people until you can iron out the problems, and great to see you've already had some good advice on here, but I'll still add my penny's worth:-

NASAL STUFFINESS PROBLEMS

It's very important to get your nasal airways as clear as possible, and it's likely it's back to the dreaded nasal spraysMake sure you get prescribed ones from your GP and also try the Breathe Right Strips you can buy in your local supermarket or chemist to help open up the nostrils further.  Humidification has also been mentioned, so if you didn't get a humidifier then ask your hospital for one.  If all else fails, then check on this post about the extra Bacterial Filters, which many people swear by (especially those with allergies, asthma and COPD).  I use them myself, but unfortunately the hospitals don't usually supply them http://hope2sleepguide.co.uk/forum/topics/cpap-bacterial-filter-one...

AHI

As Elianna says, don't worry too much about this being high as you're just settling into the therapy, and with you being on a CPAP trial at the moment, the hospital will be checking this data so they can see exactly what you need.  Mask leaks can push these figures up too, and you said you're struggling with this at the moment with your current mask.

MASK

People are very lucky if the first mask they try works for them.  My own consultant says "you often have to kiss many frogs until you find your prince."  The Quattro is not a good mask for me either, but is superb for some people.  If people have a 'bump' on the bridge of their nose then these people often have problems with the Quattro as there's not enough cushioning around the bridge area.  I got lots of nasal sores from it, and in fact I avoid all traditional masks that go near the bridge of my nose.  No one mask works for everyone, and have a read of the blog I wrote on choosing masks, which will hopefully give you a good idea of the ones to ask the hospital if you can try them http://www.sleepapnoeablog.com/choosing-a-cpap-bipap-masks-for-slee...

We can never find a 'perfect' mask because we weren't designed to have to wear one for 8 hours a day so sometimes people need to purchase the odd comfort accessory (or even make things) to help them.  The most popular comfort accessories are:-

• Hose Covers - needed when using humdification or to make the hose look pretty and less clinical
• Hose Lift - helps stop the hose from pulling + dragging on the mask, causing face marks + also helps with humidification (stops water entering the mask)
• Mask Strap Covers - prevents face marks from the straps and these come in either single or double fleece
• Mask Strap Covers for Neck/Cheeks - as above, but these have a cover that goes right round the back of the neck as well for people prone to the neck area particularly.
• Soft Nasal Cushion Pad - to protect the nasal bridge area.

Assuming you haven't got long to go until to go back to the hospital, it might be worth hanging on until you know which mask you'll be using and what you'll need.  However, at least you know there are things available to help us.

I certainly wouldn't be looking into reconstructive surgery as there will be a mask out there for you, and like I said I avoid ones that go near my nasal bridge myself, and I'm a mouth breather too.  (At the moment I use the FitLife and Hybrid) by 2 different manufacturers.

FORGETTING TO BREATHE

This is very common whilst awake, and in actual fact I've just been speaking about this in the Facebook Group.  Lots of people do it who don't have sleep apnoea, and it's normally when we're concentrating.  It's not particularly good for us, but it doesn't mean it's happening in your sleep.  However, the data on the machine will show your hospital whether it's happening whilst you sleep (known as central apnoeas, as has been mentioned already).  There was an article in the Daily Mail about this a few months ago http://www.dailymail.co.uk/sciencetech/article-2509391/Do-EMAIL-APN...

Sorry my reply was long too, but I wanted to cover all your questions and hope what I've written and what the others have said helps you.

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Permalink Reply by Manda Liversage on February 26, 2014 at 21:57

Hi All

Thanks for the extensive detail I have had from your replies.  I have plenty of things to refer to when I have my appointment and I'm so glad I asked for help. You're wonderful, all of you.

Kate - I'll be making a shopping list as soon as I come back from the hospital.

I do have a humidifier with my machine, but kept getting condensation build up and it was dripping on my face waking me up so I gave up with it until I see the hospital.  I would quite like to try it again before I go back.  Which way should I vary it to stop the condensation build up? And for interest, would the answer to that question be the same direction if I was trying to resolve the congestion?  (I have an H5i which is currently set on 3).

Thanks again.

Manda

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Permalink Reply by Kath Hope on February 26, 2014 at 22:45

You're welcome Amanda and hope your appointment goes well. 

Glad to hear you have a humidifier and the water ending up in your mask (known as 'rainout') is often worse in the UK at this time of year as the heated water reacts with the cold bedroom air.  To eliminate this turn it down, but the problem is that you may not be getting enough humidification, making your nasal stuffiness worse.  This is normally fixed with putting a Hose Cover (I mentioned previously) onto the hose which acts as insulation, then you can turn the humidifier higher again.  The hose also needs elevating with humidification so that any water drips back down into the humidifier rather than ending up in your mask.  The Hose Lift (I also mentioned above) are great for this, but before I had one I used to drape it over my headboard. The hose lift is better because it's taller and has a swivel for when you turn from side to side, but the headboard is better than nothing.

Keep us posted Manda, and good luck!

Kath

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Permalink Reply by Manda Liversage on February 26, 2014 at 22:51

I'll try the humidifier again tonight and in the absence of a hose cover I'll tuck it under my heated overblanket with me :)  Oh - and I'll raise it over the headboard which is quite high for now. But I'll add the lift to my shopping list ;)

Night night all x x 

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Permalink Reply by Kath Hope on February 26, 2014 at 23:04

That's an idea Amanda, as it should help keep the hose warmer, but when you get the hose lift and hose cover you'll see what I mean.  I would never use CPAP now without my hose lift, and I wish I'd been the inventor of it

Sleep well x

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