Tips For Problems Sleeping With CPAP or Non-Invasive Ventilation
What the manufacturers of the equipment don't tell us, is that using a CPAP or non-invasive ventilator for all sleeps can be challenging and not without hiccups! However, despite these minor issues, it really is very important that we use our equipment for ALL sleeps for the sake of our health, and on the plus side, for those of us with sleep disordered breathing conditions like sleep apnoea, we don't always appreciate it, but we are fortunate that our condition can be treated without having to take pharmaceutical medication which always come with their own side effects,
The following are my own tips (and those shared with the charity from real life users of CPAP and non-invasive ventilation, but please keep in mind they are not meant as a substitute for medical advice. However, I hope they prove useful. (I certainly wish I'd known about these tips and products when I was first diagnosed). We also sell the popular book CPAP & Ventilator Secrets which is packed with useful tips and advice and Dr Steven Park, a marvellous ENT and Sleep Consultant has written a helpful book, which I was so impressed with that I agreed to write the preface for the book 'Totally CPAP.'
You will also get tips from other mask users in the very active Private Facebook Group and the Public Support Forum, where you can discuss all things regarding Sleep Apnoea, CPAP, Ventilation + Snoring etc.
TOLERATING CPAP AND VENTILATION
A lot of people find it hard to tolerate their equipment at first, so it's a good idea to set it up during the day whilst relaxing, such as watching tv, to practise using it, rather than waiting for bedtime when you have no other distractions and are desperate for sleep. If you need daytime naps, use it during these too for shorter periods. Practise wearing the mask only, without attaching it to the CPAP, to get used to it. Remember most people take at least 2 weeks to get accustomed to using their masks and machines (some a lot longer), so this is very 'normal' and you are not alone in this! Also see the page dedicated to people new to wearing a mask which you can also download to keep as a reminder when struggling 'Desensitising Tips.'
Before addressing the causes of leaks, a special mention has to go to 2 products. Firstly, the Silent Night Mask Liners as these give such a positive experience for most mask users - both for mask leaks (whatever the cause) and also for face marks.
Secondly, many people actually purchase the CPAP Moisture Therapy Cream solely for the reason in helping with mask leaks. Whilst it's benefits are primarily for hydrating the skin and healing damaged the skin, due to it's thicker consistency, people find that it can actually help create a better mask seal.
Mask leaks are the No 1 problem people struggle with, hence the largest section of this article, and a good mask seal is imperative for successful treatment. High leaks mean your therapy will be compromised, and there are several reasons why your mask may be losing it's seal so here's some causes and fixes:-
You'll notice that we don't sell the shaped CPAP Pillows either, as whilst they can certainly help some people, the success rate isn't good for the majority of mask users. We actually used to sell these, but stopped when the feedback on them was only about 30-35%, as we only sell comfort products which have at least a 70% success rate for all people. I have personally tried 5 different CPAP pillows manufactured in the USA and 3 in the UK, and they didn't work for me! (You'd have thought I'd have learned my lesson after buying the first few, as they're not cheap either ). It depends on the length of a person's neck and what type of mask they are using as to a person's success with them. Of course, if you have spare cash it's worth trying though.
I personally prefer a softer pillow that I can scrunch up to give my neck support and it's better for side sleepers to try to get the mask to hang over the edge of the pillow. This works well for many people until they turn over in their sleep when the mask will end up in the middle of the pillow, so try placing the pillow lengthways so that it's narrower. Lots of people claim this works well, as when turning over in the night the mask, theoretically, should overhang on the opposite side of the pillow.
If you do like a firm pillow, I would recommend a Buckwheat Hull Pillow which can be bought on Amazon, as you can make indents where the mask goes and they do stay in place well - plus they have other health benefits.
Another tip is that many people find a silk or satin pillowcase helps to cut down on marks from the masks and headgear, and in fact satin pillows themselves are marketed for this purpose (anti-ageing) so it makes sense.
A CPAP Humidifier normally helps with this, which mostly your sleep clinic will provide here in the UK, but if you still have a dry mouth after experimenting with the precautions below, it would be worth trying the Xylimelts we have recently added to the shop. Also keep a bottle of water by your bed or a cup with a lid (saves spilling a glass of water near your machine), but only drink just enough water to wet your mouth, as drinking can cause you to inhale any liquid (or food) if taken too close to your sleep time and can aggravate acid reflux.
The air from the CPAP or ventilator can cause dry mouth problems, but also bear in mind that some medications people need to take for various conditions are also responsible - as are some medical conditions themselves like Sjögren's Syndrome and Diabetes, so the air pressure in the mask tends to exacerbate this. There are some other precautions you can take though, such as:-
WATER FROM THE HUMIDIFIER IN THE MASK (KNOWN AS 'RAINOUT')
Many people can suffer from water entering their masks (commonly known as 'rainout') which can also give us a rude awakening from sleep (something we could well do without!). This is normally worse during the winter months, but can affect us during the summer too. It is caused by the heated water from the humidifier travelling up the CPAP hose and the heated water reacting with the cold hose, thus causing condensation. This condensation then starts to drip into the mask, but the good news is this is normally easily solved with tips and 2 products:-
FACE AND/OR NASAL BRIDGE MARKS FROM THE MASK CUSHIONS
Many people use the CPAP Moisture Therapy Cream to moisturise their skin and help with marks from the cushion itself - an added bonus is many people find this can also help give a better mask seal due to its' thicker consistency, yet a tube of the cream lasts much longer than expected! The cream contains no substances that will damage the mask and is safe if inhaled. Please DO NOT use any creams which contain oils, alcohol, petroleum jelly, paraffin or mineral oil (many creams contain these substances in disguise). Not only can they damage the mask, but can also be unsafe if inhaled. Petroleum jelly-based products like Vaseline can cause an accumulation of the jelly into the lungs, leading to potentially serious inflammation such as Lipoid Pneumonia!
Some people report what they believe are allergies causing rashes on their faces. However, masks these days are not made from latex and whilst silicone allergies are possible, it is much rarer for this to happen! Mostly, this is either a reaction to people not managing to clean off ALL facial oils from their masks (see under the Mask Leaks section for cleaning the masks) or it can actually be a skin reaction to whatever they're using to clean the mask cushions. Again both the Silent Night Mask Liners and CPAP Moisture Therapy Cream can also come to their rescue!
Some people find they can manage with the Liquicell Cushions on their own to sort nasal bridge masks, but others use them underneath the Silent Night Liners for extra protection.
FACE MARKS FROM THE HEADGEAR STRAPS
For marks made by the mask straps themselves, there are Mask Strap Covers available which come in either Single Fleece Strap Covers (for lighter marks or simply more comfort) or Double Fleece Strap Covers (for deeper marks). There are even Mask Neck Comfort Strap Covers available for those who get sores/pain at the back of the neck.
At first the headgear may feel uncomfortable, which is mainly because we're not used to having to wear anything on our heads to sleep - let alone the mask on our faces! This should get easier with time. However, if the straps are too tight then it will be uncomfortable and can also cause morning headaches and neck pain, so make sure it's not fastened too tight - just enough to prevent leaks. Often when people use the Silent Night Liners, mentioned elsewhere in this article, they find that as the mask leakage improves, they can often slacken off the headgear.
If the mask appears suitable, but the headgear is still a problem, see if your mask would be compatible to use with the alternative SoftCap Headgear. (I use this all the time with my FitLife mask and have also used it with many other masks, athough I can't get it to work with my Amara View mask). I personally find the SoftCaps more comfortable than any headgear that comes with the masks and purchase them myself. Another option would be if you have a different mask with headgear you prefer, check to see if it will work with the existing mask as often they will.
As previously mentioned, the Mask Strap Covers also help make the headgear more comfortable, as the fleece covers are nice and soft against the skin.
MORE HELP WITH ANY MORNING SKIN MARKS
Assuming you have tried everything to avoid getting marks in the first place (like not over-tightening your straps and trying the products available, as unfortunately not every product works with every person), and you still have marks on your face - do not panic! At first sight after removing your mask the marks will be worse, but the majority of them will diminish fairly quickly, depending on your age and skin's elasticity. For any remaining marks, rub your skin with your fingers in circular movements to increase the blood flow and stretch the marked skin. Splash your face with cool water and pat dry with a towel. For further help it's now a good idea to moisturise your skin - perhaps even with the night cream you don't use now due to wearing the mask. You can even try skin plumping creams that are now widely available. Finally, you can use skin concealers and foundation, but choose powder based ones, as liquid ones can get into the creases and make the marks look worse!
Remember to drink plenty of water during the day too, as this helps hydrate our skin!
AIR PRESSURE TOO COLD OR TOO WARM
Sometime people complain the air is cold, but bear in mind the temperature of the air is taken from our own bedrooms, so think about whether you can raise the temperature of the room itself - perhaps even by just closing the window. Same goes for if it feels too warm - perhaps open the window or at least keep it open during the day.
Adding a heated humidifier can also help when the air's too cold and remember the tips about on 'rainout' if you need to raise the temperature higher. Same goes for if you're too hot - see if you can lower the temperature.
Putting a Hose Cover on the tube can also help warm up the air - as can the addition of a heated hose, but I have to say I find a heated hose a bit too warm, but these are very good in countries with extremely cold climates. Some people place their hose under the bed covers, but remember this can cause the mask to pull and tug on your face as you move, as mentioned under 'Hose Problems' above. Also lots of people end up getting tangled up in the hoses.
AIR PRESSURE HARD TO BREATHE AGAINST
This can be a problem at first when we're not used to the pressure for exhaling, but many of the machines have pressure relief features (EPR on Resmed, C-Flex on Respironics, Smart Flex on Devilbiss and SensAwake on Fisher & Paykel) so speak to your sleep clinic about this. However, if the problem persists or if you have any conditions like COPD, speak to the clinic who may be able to prescribe BiPAP, which has a lower exhale. It is NOT recommended to adjust your own pressures......remember these machines are prescription items for a reason and the pressure is part of the prescription. You will never hear Hope2Sleep recommending pressure changes, as it's like advising someone to take extra prescription medication. Always be guided by your sleep clinic on these issues, and most sleep clinics are very helpful in working with the patient.
AEROPHAGIA (COMMONLY KNOWN AS WIND!)
This is a subject that causes embarrassment to a lot of people, yet is really common, especially when new to CPAP and ventilation. Fortunately, for most people it passes in time, and I can remember being doubled up in pain in the early days in a morning, but it rarely happens now. Mask leaks can also cause this, or if you've been using a nasal mask and you open your mouth during sleep - in this case you will either need a full face mask or the addition of a Chin Strap.
There is a good video on this subject below by a highy respected Sleep Tech:-
Nose bleeds are rare, but can happen when new to CPAP or ventilation, and for most people this does pass. The problem is more common with the nasal pillows style of masks. The first thing to try adding is a humidifier which sorts the problem for the majority of people, and a saline nose spray or gel from the chemist can help too. However, never hesitate in seeing your GP about this problem if it is persistent.
NASAL IRRITATION AND CONGESTION
Again, a humidifier for the CPAP or ventilator can help with this, but also make sure the filters in the back of the machine are up-to-date. Most of the machines have, not just the foam filter, but also additional disposable filters to catch the finer particles which can be a source of irritation. There are also the Bacteria Filters that have helped may people with allergies, sinus issues and asthma etc. They can be used with most brands of machines and some hospitals do give them out to children or COPD sufferers.
If all the above fails, try a saline nose spray or a prescribed one from your GP. It is also worth considering getting a referral to an ENT consultant who sometimes can offer surgery. (I have had surgery on my turbinates and septum, and whilst it hasn't cured the sleep apnoea, it's certainly helped me breathe easier in the masks).
THE DREADED 'ITCHY NOSE SYNDROME'
This is another really common complaint by mask users, and especially when new to wearing a mask. It is mainly caused by the air from the pressure contained within the mask, causing the very fine hairs on the nose and/or face to be 'blown' by the air, causing that tickling/itching sensation. Of course, it's also a great annoyance when people have managed to get a good mask seal, to then have to disrupt the seal to place a finger inside the mask to ease the itch by scratching the skin. Believe me I've laid there for many hours in the early days trying to resist the itch and it's no fun when trying to get to sleep! The good news is that it does improve with time.....
A few remedies to try:-
DIFFICULTY FALLING ASLEEP WITH THE MASK ON
It can be challenging at first drifting off to sleep with the mask on and air blowing - just like it's hard at first for children to tolerate teeth braces. This is another reason for practising using it during the day. Try not to go to bed until you're tired and ready for sleep. There are lots of things to do that will work for different people - for me personally, reading with the mask in place, worked for me. Use whatever method works well for you to help relax.
Listening to relaxing music is a big hit with lots of people, and we've recently added the marvellous SleepPhones to the website. Many people have told us they wish they had been around when they were new to their machine and mask. These work well with the masks and people have found other surprising benefits, like helping with mask leaks and doubling up as sleep masks to block out the light. Of course, they also block out the sound of the machine, for people extra sensitive to noise. They are one of the few products we sell which are suitable for people who don't suffer sleep disordered breathing and need to wear a mask - my son stole my first one and hubby the 2nd pair (he uses them when gardening too) - so I finally bought myself the wireless version and NOBODY is stealing these from me .
PROBLEMS READING WITH THE MASK ON
If you're like me, and read to wind down in bed, then you may come against problems if you need to use glasses to read. I tried many times to read before I put the mask on, but found myself often falling asleep with the book in my hand and no mask on - not a good idea! I bought a magnifying glass, which helped, but made my arm ache holding it, as you need a fairly large one. I then discovered E-Book Readers. They're not cheap, but worth their weight in gold. I've now owned 3 different ones and my absolute favourite is the Amazon Paperwhite Kindle. Here's why:-
Amazon Kindle Review (one day Amazon might pay me for this )
I love everything about the Kindles, and the most important feature for people who have to wear a CPAP mask without their glasses is the fact that the font sizes go unbelievably large, and there are so many different font sizes to choose from.
Buying books is really easy, unlike some of the other e-readers I'd tried, where I had to download them to my computer first. You can choose your book on the Kindle, purchase it, yes again on the Kindle, and Voila...... your new book arrives directly onto the Kindle via the wireless connection. You can also buy a 4G version so that no matter where you are, you can purchase your next book and don't have to plan ahead. I have bought books whilst travelling on a train and also in Spain on a beach!
Can you tell I'm a total convert? Apart from helping me read with the CPAP mask on, my Kindle can hold thousands of books, so no more packing loads of paperbacks in my suitcase for holidays. After all, we need as much space in our cases for our machine, masks and accessories. I would never dream of not taking my ventilator with me, as I aim to enjoy every minute of my holidays and not struggle with exhaustion on them!
Some people like the e-readers that can audibly read to them. This doesn't work for me, but I know many people who love this. I don't think the Kindles have this feature anymore, but am sure there are other e-readers out there that do.
The Kindle I use is the Paper White latest version, because it now includes a backlight, which means I can read without the bedside lamp disturbing my husband. This to me is the best Kindle ever made! I haven't actually researched whether having the backlight on a Kindle is good for our eyes (like the Kindles without the backlight are), but quite honestly I don't intend to, because it works well for me, and if we read about everything that isn't good for us we'd be worried about doing anything! Obviously, we can't get away with everything, but most of us have enough common sense to look after ourselves.
I hope this helps, and you can use this link below to go directly to Amazon to buy or review the Kindle (and it's an affiliate link so if you are thinking of purchasing one, using the link will help give a few pence towards our Charity - and every little helps thank you).
I do hope some of these tips help, and as new products come out and new ideas come to light I will edit this article. Who knows....one day we may not need this kind of help if a cure for our problem comes along in the future If this ever happens, you can guarantee I'll be the first one to shout about it so keep in touch!
Best Wishes for Safe Comfortable Sleep.
© Kath Hope, 2016 – Hope2Sleep Charity