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When you first turn you machine on the display should show 2 boxes, one of which should be called "my options" and the other "sleep report". "my options" should be coloured blue. If it is not coloured blue rotate the dial until it is blue. Press the dial to select "my options". This should change the display to a menu. One of the first options should be ramp time. Rotate the dial until ramp time is coloured blue and then press the dial to select it. The display will change again to show the ramp time control. If you rotate the dial clockwise the ramp time will increase. If you rotate the dial anticlockwise the ramp time will decrease. If the ramp time is "Auto", rotate the dial anticlockwise to get specific ramp time control. If this doesn't work then something is wrong with your machine and you should take it back to the supplier.
Have you changed the filter recently?
No, CPAP does not cause Sjogren's syndrome. It can, however, be a pain if you have Sjogren's. The only thing you can do is get the best humidification possible.
To set your humidifier start it somewhere in the middle of its range. If you are still dry turn it up one step and try again. If you start to get condensation you have hit the limit of the amount of water the air will hold, so turn down one step.
This can be improved with heated tubing to prevent condensation. Proceed as above, but If you get condensation keep increasing the tube temperature until it stops. You can make the heated tube even more efficient by insulating it, either with a specifically made CPAP tube insulator or just a plain old scarf (or equivalent). Also, try to tuck the tube under the cover with you to keep it warm.
It is possible to get special medical humidification devices which are usually used in hospital. They are expensive but they do deliver the maximum amount of humidification possible. I have never heard of anyone using one of these at home but it is theoretically possible.
The though also occurs that you could try breathing through your mouth with a full face mask. It may just be less uncomfortable than the sinus pain. If my instructions of humidifier or heated tubing use were too terse, just reply here and I'll try to expand a little for you.
Best of luck.
I'm really unsure as to the benefit of using a device such as the VirtueClean or SoClean. I'm sure the do sterilise your machine, but why? As soon as you turn your machine on it is sucking in non-sterile air. As long as you clean/replace your filter regularly there is nothing in the machine to sterilise that won't be back there is soon as you turn it on.
To put it another way, after nearly 2 decades working with PAP machines, the only time I've seen anyone catch anything from their CPAP machine is when they didn't empty their humidifier chamber. Mould, yeast and bacteria all need significant moisture to survive and grow. If you empty your humidifier chamber every morning (as you should) and let it dry, this is adequate to stop anything growing in it. If you regularly get condensation in your tube, then hang it up to dry out and that should take care of that.
Millions of people around the world happily use CPAP without sterilising it and they have no trouble. There is nothing inside your machine to sterilise. I believe these sterilisation devices are entirely unnecessary and have never seen anything to suggest otherwise.
I can tell you that from a mechanical point of view, and backed up by mountains of research, CPAP does not increase the amount of air you breathe. It opens you airway, but the amount of air moving in and out of your lungs (your tidal volume) is unchanged and is purely determined by the work of your muscles. I know this sounds counter intuitive, but CPAP is a CONSTANT pressure system. There is an in flow and an out flow, keeping the pressure in your airway constant. The amount of air that moves in and out of your lungs is determined by a CHANGE in pressure caused when your muscles work to either expand or contract your lungs. This is not changed by CPAP. Think of it like this: when you jump you change your elevation (if only a little bit). Now whether you stand on the ground floor of a building and jump, or on the top floor of a building (starting at a higher elevation) and jump, the height you can jump is the same. You may start and finish at a higher or lower level, but the change in your elevation due to the jump is the same.
That does not mean that cold air from CPAP can't make you feel cold, it just doesn't do it because you are breathing more air. There may well be some aspect of CPAP use that causes hypothermia in some patients, but I seriously doubt that it simply because of the amount of cold air they are breathing. Largely because without CPAP they would be breathing the same amount of air at the same temperature as they do with it. Also, a good humidifier can make the air warmer than it is in the room around you. It is more likely that some internal biological imbalance is causing the hypothermia. I'm afraid I haven't heard anything about this before. But I do know that CPAP only removes an obstruction from your airway. It does not change the amount of air you lungs push in and out.
If it works, then great! I would simply suggest to anyone else thinking of following a treatment course such as this that you do so in consultation with your doctor, and have a sleep study to demonstrate that it is working. If it is working then the sleep study will only confirm this. However, it may be masking a sleep disorder which is still causing damage to health. If the treatment is effective there is nothing to lose in being thorough.
I had a patient once who swore by his buckwheat pillow.
Modafinil definitely does not treat sleep apnoea, nor was it ever intended to. It helps reduce hypersomnolence (makes you feel less tired) and is primarily used in treating narcolepsy. If you have sleep apnoea, it may help you feel less sleepy during the day (or whenever you are awake) but it will not reduce the severity of the sleep apnoea and you will still be suffering all of the damage it causes.
L/min does indeed stand for litres per minute. 1 L/min of leak is very little. ResMed leak data subtracts what it expects the controlled leak level to be before reporting leak. Controlled leak is the air that flows out of your exhalation port (something which should happen). This is why you can get a leak of 0 zero on a ResMed machine but you will never get that on a Respironics or a Fisher & Paykel machine. A leak of 0 - 5 is very small. Over 20 is starting to get sizeable but ultimately, unless the leak is massive the machine will compensate (all models that I have ever heard of do this), so all that really matters is your comfort. We always say that is a leak isn't bothering you it's not a problem. It is very unlikely that you will not be bothered by a leak that is big enough to be a serious problem.
The size of the drop in your oxygen is only a part of the story, and not the most important part. Even with only a small dip in oxygen saturation, if there is an EEG arousal (i.e. interference with what your brain is trying to do in sleep) it can still be damaging to both your quality of life and your health.
It is possible that you have positional OSA that is much worse on your back. The fact that you slept so we'll with the Auto SV BiPAP may or may not be significant. The Auto SV can be set in a number of modes and I assume that you don't know how it was set when it worked for you.
With such limited info I really have no idea exactly what is happening in your case. If I were you I would keep working with your health professionals but make sure that you drill them for information as much as you can. Make sure that they explain to you what they are doing and why. It can be very complicated to nail down the exact cause of sleep related respiratory disturbance in some cases (trust me) but there is a structured way to approach it. If there is a range of different people working on your case it can be easy for the process to get confused as each person only has part of the story. You need to be the one who keeps everything working logically and together in a sensible direction, because you can't always rely on others to do it for you (even if that's their job).
In short, educate yourself a bit and make sure everyone explains what they are doing at every step. Ask questions. Good doctors will be happy to answer them and involve you in the process.
