side effects the next day

[Safisafi]

I was diagnosed with moderate sleep apnoea in February. I use a ResMed S8 Escape ll CPAP machine with humidifier and Swift LT nasal pillows -these leak, as do solid masks too. I have developed some side effects and as my consultant has a take it or leave it attitude am writing to you for advice.

Profile: I am a 64 year old female, slim - at lower end of recommended weight range, fit and active but unable to organise my life because of exhaustion.

Day after using the CPAP:

1 My body goes through the motions of breathing but I don't feel as if I am absorbing oxygen and become giddy. It took 20 minutes of swimming recently before I felt relaxed enough to breath naturally. I feel as if bubbles are rising over my breast bone. (Think I am stomach breathing?)

2 I feel muggy minded, exhausted and think my balance is affected.

3 I tried two or three rigid masks which leaked excessively and ended up with nasal pillows which also leak but are, at least, gentle to the touch. To reduce leakage I lie on my back all night which results in a degree of stiffness by morning - something I would tolerate if the benefits outweighed the difficulties.

4 The masks lower back strap causes chronic itching of the scalp (yes, I do clean the equipment.)

Benefits: When using the CPAP I get to sleep more easily and although aware of the mask leaking and having to adjust it (exhausting), do not waken sufficiently to have to keep going off to the loo!

Current Situation: I have decided to give the machine a rest to see if I fare better without it.

My breathing is immediately back to normal, my mind is less muggy, nor do I always feel the need for an afternoon nap, however, my night sleep is constantly broken again I'm exhausted and can't organise my life.

The thought of impending problems awaiting as a result of untreated SA is frightening.

Questions: Are my side effects familiar to you? Any suggestions to aleviate them? Is the machine set to high? (I overheard the number nine stated). Is it the leaking masks causing the problems? .......Is there any way, of trying out masks other than taking an expensive gamble and selecting by guess work from the Internet?

So look forward to hearing.........

[Tigers Fan]

Kit fixable

Hi Safisafi

It's wht we do - help each other out with this sort of thing.

Your side effects are very common.

For your chronic itchy scalp I can think of two suggestions: try Head and Shoulders Sensitive shampoo and conditioner (worked for me); buy or make some wrap around liners for the mask straps - eBay, hope2sleep, etc (too cumbersome for me).

Assuming you are fit and well and your symptoms are only as a result of not getting effective CPAP therapy, I think you have identified the problem areas - pressure and leakage.

For changes to your pressure settings, you should go back to your clinic. However, many of us mke our own adjustments. You can find out how on the internet very easily -Google 'Clinicians' menu and the name of your machine.' Don't do this if you are not confident. I always swear by adjusting a half centimeter of water at a time with a minimum of four days between adjustments - it is slow but safe and you can properly assess the effects of the change. You suggest your setting is too high bit I suspect it is too low.

DO you use the ramp function and exhalation relief (if your machine has it)?

If you can't get on with your mask, you clinic is obliged to offer you options or at least an alternative -probably a full face mask. When you have exhausted the clinic's ability to provide, there are two options - gamble with a mask from the net or go to one of the manufacturers - for £25-ish they do a mask fitting session, let you try all their models. How far away is your nearest Resmed or Respironics sleep clinic/office?

With the mask you have, are you rmembering that loose is best? Overtightening causes more prroblems than enough! You should have the straps just tight enough to stop leakage and then cinch in about 2 mm more.

Please feel free to come back with any more/other questions.

TF

[Richard]

If you have a problem with leaking masks, have you tried the Remzzz mask-liners, which you can buy from this site, I believe?

For CPAP masks these form a comfortable 'gasket' between the contours of your face and that of the mask. However, where the pressure is raised somewhat, they are not so effective in preventing leaks and the flatulent tones we are all so familiar with.

For higher pressure, ventilators rather than CPAP, you need something like 'Mepilex' to form a thicker 'gasket'. I discovered this almost by accident, and it has proved very effective.

This is what you do:- Mepilex is a surgical dressing, so you could only buy it on prescription; I have no difficulty getting mine. It comes in a number of sizes, the best for our purpose is the 15cm x 15cm size and comes in packs of five. You also need a pack of Remzzz. mask liners. (The following steps will tell whether you were ever a fan of 'Blue Peter' all those years ago) Instead of sticky-back plastic, it's Mepilex!

Take a Remzzz mask-liner and spread it out onto a piece of cardboard, a corn-flakes box will do nicely. Using a glue-stick, stick the mask-liner to the cardboard.

When the glue is dry, cut around the edge of the mask-liner, and the hole in the middle, so you are left with a cardboard Remzzz rather than a cotton one.

This is your template and can be used time and time again.

Place the template over the piece of 15x15cm Mepilex, taking care to place it on the side that has the adhesive film.

Now, using a ball-point pen, carefully draw around the rim and the central hole of the template, so you are left with a square of Mepilex marked out with the line you have just drawn. Now, cut along the lines.

You are left with a mask-liner in Mepilex. Pull away the adhesive film and position the Mepilex onto the mask itself.

You will need to adjust the straps to get a comfy fit, but this is far more comfortable than anything else I have tried. There's a degree of trial and error at first, and each 'Mepilex Mask Liner' should last a week or two.

You might like to wear a sleep-mask; these are obtainable from Boots, Lloyds, etc. and help to ensure a good night's sleep.

Hope this helps you.

[ElleCee]

Hi Richard,
I have acouple of questions regarding your recent post.
1. Would Mepilex help for pressure points when using a full face mask?
2. What is a sleep mask?
Thanks
Lorraine

[Tigers Fan]

Very interesting!

Hi Richard

Perhaps not a lot of use with Swift LT nasal pillows, but of great interest to full face mask users -like me!

Mepilex seems to be for retail sale at about £3.50 per sheet (£17.50 a pack of five) so a Richard Liner is quite expensive. Cheaper by prescription - what do you tell your GP? Mine takes quite a lot of convincing before he spends anything!

Do you use regular or Lite Mepilex.

And the crucial question: what effect does it have on the silicon cushion (assuming you stick it to the mask and not to your face!)? How long have you been doing this and what deterioration, if any, of the cushion have you noticed in that period? The Richard LIner peels off easily after it's usefl life?

This would do away with the need to stretch a RemZzzs and no more having your nose tickled by a stray edg!

TF

[ElleCee]

TF,

Do you get pressure marks on the bridge of your nose from your mask?
I am desperate to find a solution.
And thanks for asking Richard the sensible questions

Lorraine

[Tigers Fan]

Pressure Marks

Hi Blondie

What a question! Of course I don't get pressure marks on the bridge of my nose!

I assume you are still fallen out with your DreamWeaver and so you are talking about your Quattro giving you marks that you don't want. I'm aware of one reason and one only for pressure marks on the bridge of your nose.

Straps too tight.

Sorry about the interruption! Geetan had given up meowing to remind me of the time and was chewing my ankle.

Right! Quattro. Wind the head rest all the way out, maximum extension. Lay down, assume your sleeping position. Tighten all the straps way too tight. Close your eyes very tight. Switch on. Wind the head rest in till the leakage at the top just stops. Probably need to lay on your back for the next bit. Loosen the top straps equally, a bit at a time, no more than 2mm (very little indeed) each go. Loosen till the leakage just starts again and then tighten again till it just stops (providing you lay absolutely still). You should at this stage have a light contact between the cushion and your face/nose and a light contact between the head rest and you forehead - both so light thay are almost a floating contact.

Now for the bottom straps. Well, first off, gently push the center of the bottom of your mask. You should feel the cushion compress against your chin and the top of your mask and head rest lift away from your face and forehead. Can you feel the place where the mask pivots - probably your cheekbones? OK - stop pushing! Tighten the bottom straps 2 mm each and deal with any leakage caused at the top of the mask - just tighten the top straps enough to just stop the leakage. Carry on the process, tightening the bottom straps to stop leakage and then the top ones to stop the leakage caused. You are looking for the place where all leakage just and only just, stops.

Wiggle your chin vigorously and tighten the bottom straps to just stop leaks whilst wiggling. Wiggle your nose. Now jiggle the mask -don't move it over your face, more vibrate it. Fix leaks - just.

Now feel the compression/weight of the cushion on the bridge of your nose- push the top of the mask in. Is it light or heavy. It should be light, almost floating. If it isn't, loosen the top straps till it is, till leaage occurs, then cinch in a tiny bit each side, top. The headrest should be light on your forehead, too.

When you get the light, tight position at the top of the mask you can play with the bottom straps all you like - using them to adjust the weight of the cushion on your nose. Tighten the bottom, lighter at the bridge of your nose. Lossen the bottom straps, heavier on your nose.

Working on the principal that lightness of touch will not cause a sore nose, the above should sort you out. Don't leave this till bedtime, by the by. Choose a time when you are at ease and you won't be disturbed for an hour. Play with your mask till you find what is right for you - on each side and on your back. Have fun! Lightness of touch is all!

TF

[ElleCee]

Thanks TF,
I have printed out the instructions and will be having a play when I go to bed.
I will let you know how I got on tomorrow. 'Tis not often I go to bed to play with my equipment you know

Thank you
Lorraine

[Richard]

Hi Lorraine,

Of course, I should have pointed out that Mepilex is only suitable for a full-face mask, and you will find it far more yielding than the gel around the rim of the masks we generally use.

Following my directions in today's earlier posting, depending on the size of your own mask, you should cut away any surplus that could interfere with your eyes, but the material will cushion the bridge of your nose, so don't cut too much away.

You shouldn't have any difficulty persuading your GP to prescribe Mepilex for you; he has on his PC every medication known to mankind, so he can't say he's never heard of it.

Just make sure it's the 15x15cm or 16x14cm he orders. There are 5 to a box and one mask should last a week. For repeat prescriptions, GP surgeries will only prescribe a two months' supply of any medication, so ask for three boxes at a time. I am fortunate in that all my medication comes free. You can check if you are entitled to a free or reduced cost prescription by going here:

http://www.patient.co.uk/health/Free-or-Reduced-Cost-Prescriptions.htm

And if you live in Wales, all prescriptions are free anyway.

The sleep mask does what it says on the packet. Wear it to cut out extraneous light, making it easier to get to sleep. You can get them from motorway service stations, airports and Asda carry them, too.

So, the routine is: 1. Make yourself a mug of hot chocolate and take it up to bed. 2. Read for 10 minutes while you have your drink and begin to relax, with the support of the bed-rest you just got off ebay. 3. Connect your CPAP and make sure it feels comfortable with the Mepilex in place. 4.Turn it on. 5. Put on your sleep-mask 6. Turn out the light, and in seconds, you're away.

Sweet dreams, nighty-night.

Richard

[Tigers Fan]

Risk of losing the thread

Hi safisafi

Have we been able to help you?

We are starting to wander off subject and we don't want to lose you.

TF

[ElleCee]

Hi TF,
Thanks for the instructions. I had a good fiddle last night and it seems to be better although I did have a problem deciding which way 'winding out' was.
I only woke 3 times during the night so that is an improvement on the way things have gone recently.
It might be due to weight loss and having a thinner face, tightening the straps as I had done, obviously wasn't the answer. I will let you know how I get on over the weekend.
The reason I have had problems with the Sleepweaver is that it has also been leaking and when it does leak it whistles really loudly and it wakes me up more often. I will be having another go with it soon but need a few decent nights sleep first.
Sorry to hear that you don't have enough hair to go blonde, still we can't all be perfect
Have a good weekend
Lorraine

[Tigers Fan]

In anticipation

Hi Lorraine

In anticipation of a blond confusion between all the way out and all the way in (hm! what about blond Catholics?) I also mentioned 'fully extended'. Whatever, did you achieve the desired 'lightness of touch'? Tonight will be a good night because of low humidity- should be able to make up for restlessness the past few nights.

I may not have enough hair to go blond but you have yet to prove you have enough blond hair to do Darth Godiva in a pinkmobile!

TF

[Safisafi]

side effects the next day

Wow! It's quite a science isn't it. I think I will have to go away and think about all of this. Perhaps I'm just lazy but I do think my technician should know one or two tricks to help. Instead I just get given the impression that I am troublesom when really I just want to conquer the equipemant.

Anyway thank you all for your suggestions and comprehensive instructions.

By the way, no one said anything about the dreadful non-breathing that happens to me the next day when I don't have the mask on. Does anyone recognise this problem? And have a solution?

Many thanks - Safisafi

[Tigers Fan]

Puzzled

Hi Safisafi

I don't think you mentioned non-breathing the next day if you don't wear the mask - I've read your first post twice more and cannot find a referenece to put it into context.

Having said that, I was struck again by you having to swim for twenty minutes in order to relax. In fact, your first two post-CPAP points remind me very much of panic attacks. Now, I think you are adding non-breathing to those post-CPAP effects and this suggests to me even more that you are suffering some form of anxiety. If this is the case, you could try the old remedy of breathing into and out of a paper bag, get your CO2 levels up and get you breathing more slowly and deeply - down into your belly rather than high lung and throat.

Ah! you meant ineffective breathing rather than that you cease breathing - so my comments above seem appropriate.

Do you wake up suddenly and experience these 'non-breathing' feelings? In which case I'd guess you have an apnoea (inspite of CPAP) and wake in a panic and gasping for breath - and then stay that way rather than calming down as you find you are able to breath again. Forcing yourself to slow your breathing and making each breath a belly in and out would help - and paper bag if you can't control your breathing.

And if none of that helps, straight off to your GP for a medical opinion!

Good luck. Can I also suggest you would better make friends with your equipment than conquer it.

TF

[Safisafi]

side effects the next day

Hi again!

No I don't wake up in a panic and gasping for breath when I have the mask on. I can't think why I would be panicing when I understand the logic of the treatment and really want to go with it, but the mid/body oes do strange things at times. However, I will search out a paper bag and see if that helps!

Best wishes - Safisafi