British Snoring & Sleep Apnoea Association

Hi everyone,
Glad I've moved to a forum with several familiar names.
My story so far:-
From initial visit to my GP to getting machine from the NHS took 7 months in total. Seemed a long time but boy has the wait been worthwhile.
Was given an autopap machine with a full face mask as I tend to breath mostly through the mouth.
After a demonstration at the clinic on how to use the equipment it was off home trying to remember all the tips and advice I had gleaned from the forum.
I consider myself very fortunate to have been able to adapted to the therapy so easily from day one. First night spent mostly checking machine to see if it was working because it was so quiet.
After a few nights had sore bridge of nose and very dry mouth so gave clinic a ring and was given an appointment in two days time. Told to try a little padding on nose, but if that didn't work would be able to try a different mask. Tried the padding, but this served only to cause leaks, so have carried on without pad and nose is now getting used to the mask.
Whilst at the clinic was supplied with a heated humidifier. Got a bit wet the first night so made temporary insulator for tube using 'bubble wrap', worked very well but a little noisy, so bought 2 wraps off ebay for half the price over here including delivery (about 10 days).
Still getting quite a dry mouth even with the humidifier (have tried different settings), any advice would be most welcome.
My next appointment at the clinic is in 7 weeks.
Regards and best wishes to all, Mike

Hi MikeB
Welcome here mate.

How high is your humdifier in relation to you sleeping position? It helps to have the machine set up at least 6" below your head. That way any rain out will run back down the tube to the machine and not to your face. If it gets warmer I turn my humidifer down a bit and if the temperate goes down I turn the machine up a bit. This helps out with evening out the rain-out at different times of the year.

Hi Nuneatonman37 and Puffin,
Thanks very much for your replies, Glad to meet up with you both again. I will try to answer the questions in order.
The wrap is made of 'fleece' and it would seem once again you get what you pay for. The problem is exactly as you describe, condensation in mask (full face) causing leaks, and a quick shower if I lift mask away from face.
Heat set in middle of range, if increased get more condensation. bedroom temp. not sure but its not cold. Tank filled to just under max marking.
Have been looking for the wrap you mentioned but can only find it on USA sites, are they available over here?
Since getting the humidifier I have the machine on a stool about 15 inches below pillar hight.
I'm thinking of filling the wraps I have with cotton wool and selling them as draught excluders, do you know anyone with 6 foot wide doors?
Thanks to both of you for your replies,
Regards, Mike.

Now been on cpap for 8 weeks and am feeling better than I have for years.
'Rain-out' problem has now been addressed thanks to previous advice, machine is now no lower than 6 inches from pillow height.
Problem with sore bridge of nose much improved due to two reasons, one using non adherent dressing with padding removed, (padding caused leaks)held in place with micropore tape. Secondly have learned to 'nose breath' in order to use a nasal mask which the hospital gave me to try. I prefer the nasal mask but have to use a nasal decongestant to open the airways.
All these little niggles become insignificant when weighed against the benefits cpap gives. I feel I have gained at least 12 hours of life per week due to not falling asleep in the evenings and at weekends.
To anyone just starting or about to start on cpap therapy PLEASE be patient the benefits you can get from it are priceless.

Hi Nuneatonman37,
Thanks for your reply, I ordered a Resmed tube wrap yesterday at 3pm, it arrived today at 11am by post.
As Michael Cain says 'Not everybody knows this' but all tubes are not quite the same length Respironics are 2 yards long and Resmed 2 metres so have had to turn back the wrap at one end. Very easy to fit, I like the full length zip it makes fitting a doddle instead of trying to poke the tube through the sewn up fleece type of wrap.

12 WEEK UPDATE.
Still enjoying the benefits of cpap.
Been trying out a 3rd mask for the last few weeks, its a Respironics " Simplicity" nasal mask. Much smaller and lighter than the normal nasal mask and fits more towards the end of the nose. This makes it more comfortable as it won't press against the pillow as much and is less likely to become dislodged causing leaks when side sleeping. Unfortunately I'm still getting pressure sores on nose bridge even though still using the micropore tape, so I'm hoping to try a nasal pillow type at some stage.
I saw Consultant a couple of weeks ago for first follow up appointment, he said everything was going well and recommended "Flixonase" as a treatment for the nasal blockage. Been on this for about two weeks now but not seen any improvement so far, maybe need a stronger dose. Next appointment is in 9 months time.
All in all the slight discomforts are a small price to pay for such a large benefit.
If anyone who has experience of nasal pillows could let me know what problems could be expected I would be pleased to hear from them. Thank you.
Two important things I forgot to mention, Pre cpap I used to visit the bathroom 4 or 5 times per night, now only once if at all. Acid Refux occured 2 or 3 nights per week, since starting cpap not had one occurence. The benefits are far reaching so Hang on In There.

I've just been diagnosed and was interested to read your experience. I was previously getting up 3-4 times to go to the toilet every night, and began wondering if I had a bladder problem. Since starting on CPAP 4 days ago, I have only had to get up once and last night not at all! Amazing! I've got the nasal pillow mask and the first night the nostrils were so sore I just got up and smeared Vaseline in my nose otherwise I couldn't bear it. Checked with the pharmacist in Boots and he said it was the best thing as it is inert, does not move from where it is placed etc. I've also had rather bloodshot watery eyes in the morning and a sore back of head from the velcro strap. Although I'm getting a better quality of sleep I'm still very tired in the day and struggling to concentrate at work, but I feel so much better, no fuzzy morning headaches, so I think I just need to persevere with it. I think these boards are great, there is so much info.

Hi Alice
Thanks for your info on nasal pillows, I haven't gone down that route yet as the Respironics "Simplicity" nasal mask seems to be suiting me at the moment. However I do still get pressure sores on the bridge of the nose if I forget to use a pad of micropore tape and am still having difficulty with nose blocking, think its time for a trip back to the Dr. as the saline drops and even the sinus rinse has little effect.
Funny isn't it how seemingly unrelated problems such as nocturnal toilet visits almost disappear once you start on cpap, I was convinced mine were due to a prostrate condition but once a night is now the norm.
Head strap tension is a problem at first, too tight and your head feels as if it will explode, too slack and leaks then become the problem, so you just have to persevere until you get it right, but they still happen from time to time even when you think you have got it right.
I also get wet eyes in the mornings don't know why unless it's slight leakage into eyes during the night, seems to dry up after about half an hour.
Sorry your still feeling tired during the day but I think you have to give it time, some people improve almost immediately but others may take a few weeks.
Please persevere as I'm sure it will all come right soon.
As you say these forums are so important to us people you don't get given the kind of info you find on here from the hospitals.
Best of luck, Regards Mike.

I am also getting watery eyes in the mornings, also sore eyes, although I have checked and the air is not blowing upwards into my eyes. Last night hubbie said the machine was noisier and he woke me up as he was worried too much oxygen was blowing out. I said it had been set by the sleep advisor. This morning I found that far more water was gone from the humidifier. It was down to about half full. Don't know if that's got anything to do with the temperature of the bedroom. Last night was chilly here in Sussex. I've also had a dull headache all day. More questions for the clinic, next appointment 1st October.

8 MONTH UPDATE:
Can't believe it's been 8 months since I started the treatment and I'm pleased to be able to say that the benefits still continue with no depreciation in the feel good factor.
However one problem persists, nose blockage, not a big deal during the daytime but at night with a nasal mask its another matter as I'm sure you can all appreciate. One minute all's well and the next breathing is like trying to drink through a straw that is being squeezed tight.
So made appointment to see Dr. who referred me to ENT consultant. Got to see him 2 weeks later (not bad on NHS is it), the outcome was a recommendation for surgery to straighten the inside of the hooter and widen the airways or as he put it Septoplasty and Diathermy to the Inferior Terbinates. The waiting time approx 6 weeks again not bad on NHS is it?
I did of course explain I have Apnoea but was assured this would not cause a problem. So am now hoping to be sorted out and on the mend before Christmas.
I have as usual read the relevant posts on this forum and once again found then to be invaluable, so thanks to everyone who has contributed on the subject.
If I survive the op I will inform you of my expeiences.

I'm also a new user, only had CPAP for about a month but only used it for 2 weeks due to a cold !
Once the cold cleared up I also started getting the sores on the bridge of the nose which I've still got. I'd be interested to see what people really think of the pillows because I have my first return appt with my Consultant in a couple of weeks so I'll see what he says.
I tried the padding too but didn't work, I've not got a coule of sores and a nice white pluke there as well !!!

Hi all,

As regard to Nasal Pillows, a lot depends on the type you get as there are different manufacturers. They all go about doing the same thing a different way.
I love the Nasal Pillows, though they stopped making the ones I use and I have not found the perfect Nasal Pillows to replace the ones I have.
Still trying to get another type I can use though.

In brief:

They are less claustrophobic to use.
Easier to fit and take off quickly.
Leaks tend to go away from the eyes as air travels away from the nose.
You can easily use them if you sleep on your side.
They came mostly with three different sizes of Nasal Pillow to suit your nostrils.
They are also a bit more robust than a lot of masks and a lot easier if you do a bit of traveling.

One slight disadvantage is they will hurt the nostrils when you first use them as they go slightly inside the nose. This lasted about month with me until my nose got used to a foreign body there.
It was not that uncomfortable and you get used to them quite quickly.
Once the inside of the nostrils settle down you will like them better than a mask, but they are not for everyone.

One other thing, be prepared to have your pressure increased slightly.
Most people I know that have changed to Nasal Pillows have had to have this done, but not all. This may be due to the fact that they do tend to leak slightly, but the air goes away from you so it doesn't annoy you.
Also some people get dry skin just below the nose, all that is required is some mosturiser, so borrow the wifes

You may have to try a few types till you get the one you like.

I would never go back to a mask again.

Long live Nasal Pillows

UPDATE
Thanks for replies regarding nasal pillows all info is most useful.

Two weeks after seeing Consultant I was offered a cancellation which I accepted and had the operation on 10 Nov.
Not having had an operation before I was expecting to feel quite sick and in pain afterwards but to my surprise did not feel sick nor did I need any painkillers.
Both parts of the operation were performed in about one hour followed by a one night stay in hospital, not wishing to keep everyone else on the ward waken with my snoring I had taken along a full face mask so that I could use my apap machine.
The most uncomfortable part of the whole procedure was the removal of the packing the following morning.
Now three weeks later I am back to using my nasal mask and can breath easily through the nose all night long without having to use a decongestant spray, so for me the operation has at least so far been a successful. I was warned that the problem could reoccur but for now the quality of life has improved yet again.
Overall far less painful than going to the Dentist for a filling (well my Dentist that is) or having an ingrowing toenail removed.
Hope this info is of help to anyone contemplating this type of operation.

Reading what you have been through is making me feel very positive, I am currently waiting to go in to have my cpap and will take on board all the lessons you have learnt.