poor sleep even with a cpap

[mandy1756]

I've read quite a few threads, often late at night when I can't sleep, because I'm worried about my husband. He's has sleep apnea I guess for about 12 years and had a cpap machine for about 6 years. For several years, after getting used to it, he was sleeping better but recently has been waking up tired, aching and never refreshed. He hates the machine and the mask, hates going to bed, even though he knows he can't do without it. Everything is a massive effort and he has had two bad chest infections since October that have taken ages to clear. It just feels like his quality of life is so poor, just getting by with no energy etc. Have other cpap users had similar experiences? He's had the machine checked and been told all is well.

[Aspasia]

Hi Mandy,

I'm sorry your husband is having such a hard time.

Perhaps it might be worth him going to his GP for a full check-up? If the CPAP was helping before and isn't now, it may be that he has developed an additional health problem which is causing the tiredness. There are quite a lot of health problems that can. If you think about it, even a cold can sap the energy levels, and pretty much anything that involves inflammation will as well, because the immune system has to work overtime.

[Sleep2Snore]

Hi Mandy,
There may be a few things to check. But before I go down that route I wonder how he hates the mask or machine as most people that have used a machine for some length of time find it almost impossible not to use them and most people will admit to loving their machines. Is it that the mask does not suit him or is it that he does not have a humidifier and gets a bit dry?

Anyway, as above post suggests he may have another problem going on. Get him along to get checked over.

They checked his machine and gave it the ok. I had three machines they told me were fine, but they always were on start up, but during the night the output would go down. Does it sound the same to you after it has been on for a while?

Is there a tiny leak around the tubing, it is amazing how tiny split can't make the pressure drop. Even a tiny hole can't loose a lot of pressure.

Has he had a change of mask type as I found the vent on these masks are not the same and can affect the pressure reaching the patient.
Alsi is the mask still have a good seal?

If he has a Nasal Mask, is the air short circuiting through the mouth? Not a problem if it is a Fullface Mask. The same can't happen if he has Nasal Pillows.

Not least, has he put on any more weight lately? If he has he may need a pressure tweek. Some clinics will just put it up and see what happens, others will do a test again. I don't know what pressure he is on or if he has an APAP or CPAP machine, he should only need an adjustment if it is a CPAP.

It is possible he only needs a slight adjustment of pressure, but as he has had chest infections get him checked out.
If he had a cold along with the chest infection and he has a Nasal Mask it will obstruct air going down the nose, but if he had a Fullface Mask he would have been able to breath through the mouth, not to say he was not affected by the chest infection. If it hss been going on longer than the chest infection then contact the clinic, he may need slightly more pressure or a new machine if it looses pressure during the night.

Let us know how you get on.

Start by checking for leaks, then with the Doctor, if okay, focus on the machine.

[Sleep2Snore]

I'm tired after allow that.
Forgive any typos hard to do allow that on a phone with a touch screen

[symmit]

If his equipment is six years old it really needs inspecting and replacing if it hasn't already. I have not had a chest infection or anywhere near as many coughs or colds since going on cpap.

Also he is six years older,there is plenty of non related stuff that could be making his general health and mental outlook worse, I came close to a complete meltdown last year and have had to change my lifestlye and take some supplements to get back on track.

[mandy1756]

thankyou

Thank you all for your help and advice. He is going back to the clinic and is due for a blood test at the doctors. He's had other health problems, pacemaker fitted last year which is ok now, but has put on, then recently lost some weight.

I've thought for a while that the equipment is leaking a bit little hisses coming from the mask and hose I think. He has had the CPAP changed regularly though, but has never had a humidifier which we had wondeerd about as he sometimes spits up bloody streaked mucus in the morning.

Saw on another thread about cleaning it daily with a baby wipe to keep the seal tight, does this help? I think he hates it because it is uncomfortable so even though he sleeps better than without it, it isn't restful sleep, and also the straps leave unsightly marks on his face.

I wondered about the chest infections being so bad were maybe because the equipment collects bacteria which is constanlty being breathed in and out. I saw an advert about a special bag that doubles up as a cleaning thing for the whole machine that works with ionising it - does anyone know of this?

[Aspasia]

I had problems with mask leaks, too. The mask would be fine when I put it on before I went to bed, but then it would shift in the night, and that would cause leaks which woke me. I've found that mask liners, such as RemZzzs, make an incredible difference to that problem. With a liner, there's hardly any shifting and no more leaks either. You can also cut your own liners out of old T-shirts or other soft, thin, cotton-rich cloth for the same result. There's a video/advert about RemZzzs here http://www.youtube.com/watch?v=D0AXWt3hDhM, so you can see what the shape is (if you want to make your own) and how it works. Intus sells RemZzzs in trial packs as well as full-size packs.

I also had a problem with the headgear being very uncomfortable and leaving marks on the side of my face. You can get (or make) fabric wraps that go around the straps to cushion them. The ones ResMed sell are just rectangles (curved at the ends) of soft fleece fabric with a velcro closure along the long sides. These wrap over the straps where they are in contact with your face and then velcro closed to make a soft tube around the strap. They stay in place very well, and make the headgear a lot more comfortable. They also work as a cushion for the chin strap, if you put it on over the headgear rather than under. And there are hardly any marks on my face in the morning.

Neither of these would be difficult to make rather than buy, if you wanted to, as the fabric isn't even hemmed.

I'm sorry your husband is having such an uncomfortable time, and I hope things improve for him and for you.

[symmit]

Daily mask cleaning is essential, plain water, or whatever you wash your face with should be fine, unscented alcohol free wipes also.

Comfort and mask marks on the face are signs of over tightening or a badly fitting mask, there are hundreds of masks available check out the uk websites of intus, hope to sleep and others, it may be that a small investment in something different, even alternating between a couple to give contact areas a rest, may help.

[tallishbloke]

poor sleep even with a cpap

Hi Mandy

Sounds like your other half is struggling.
Going back six years, many CPAP Services in the UK were still using fixed pressure CPAP systems where the machine runs at 1 single pressure through the night,. These tend to have to be adusted now and then dependent upon the individual in terms of changes of their sleep apnoea because of weight changes etc. A number of Services now use Auto-CPAPs which adjust minute by minute to the individual's requirements.
Another key aspect is as some other suggest is the mask. It is extremely difficult to use CPAP if the mask is not right - this could be a poor fit due to being worn, or it is the wrong kind of mask now for him. There could also be a leak in the tube etc
Additional health conditions can also makes things more complicated. If his system is working perfectly, delivering the correct pressure for him,without leaks etc, then other conditions could be causing him to have excessive tiredness.
Basic messageis, if he is uder a sleep service, he needs to get checked out. If he is not under a sleep service, he needs to get his GP to refer him ao a Sleep service so they can get things checked out

Good Luck, and give me a shout if you need any more assistance


Best wishes
TB

[mandy1756]

developments and more questions

Yes he has been under the sleep clinic at Blackpool and had varous responses from the technicians, a recent one much more supportive than the previous one and have increased the pressure. And they may get him in to do a re-assessment. He's got to have a blood oxygen test first tho. So at least they are looking at it now.

I've been looking at masks, and seen a fabric one which looks interesting and leaves less marks on the face. He had a respironics one once with a gel liner that seemed more comfortable but they are expensive, haven't checked if you can send them back if not right. I can tell his is leaking it doesn't sound like it has a good seal.

How often should you clean the equipment, and should it just be the mask, or tubing as well? I feel that bacteria could collect in the tubing and be a source of further infection. He's had two bad chest infections, one was really bad and we were on holiday in Spain and it comepletely ruined the week.

[Sleep2Snore]

Should wipe mask every day to keep inside and seal clean.
Tube and mask washed every week with the liquid soap you use to do the dishes, mask dried and tube hung up to dry after rinsing it with water.
Baby wipes do fine for cleaning the mask on daily basis.
Try to avoid the ones with a high alcohol content as they can affect the silicone seal.

Hope it helps.

[tallishbloke]

problems

Mandy

Most mask manufacturers recommend daily cleaning of the mask seal - they tend to recommend washing up liquid as the detergent of xhoice - it is the most efficient at breaking up the oils from your face that the mask picks up, which in turn, ocver time, can degrade the quality of the seal. It is extremely unlikely that the mask itself has caused the chest infections . . . there is no majoer evidence of this in published literature.
Sounds like he is on a fixed pressure device, and the pressure may no longer be adequate.
If there is mention of oxygen testing they may be looking at the blood gases. This tells you how much oxygen he has in his blood stream as well as looking at the pH (Acid / base balance) and the amount of carbon dioxide. Higher than normal levels of carbon dioxide can point towards worsening obesity, ventilation problems, lung problems etc. If he has headaches in morning, it could be pointing to OHVS (obesity hypoventilation). Fixed pressure CPAP may not be adequate. He may require auto-CPAP , bi-level auto-CPAP or BiPAP.
A decent service will help pinpoint these issues, provide the right treatment, or refer to someone who can provide correct therapy.

as I said, if you need further guidance please let me know
Regards TB

[symmit]

In just over two years i have had no chest infections with cpap use but i was never susceptible to them in the first place. Have the filters been changed on the cpap machine?