Still Hopeful

I’ve had debilitating chronic fatigue, poor sleep, irritability, depression, mania, malaise, and difficulty concentrating for a really long time. 4 years ago a homeopath said so many people with CFS had sleep apnea that he didn’t even see them till they’d ruled it out. So I had a home study done and showed I have 11 apneas an hour. I tried cpap then with little success sleeping and thought maybe it was due to extra stress and gave up on it till things got better. Decided to buy a machine a couple of months ago and use the old nasal mask I was left with from the first go round. I sleep less and less with it, often not even being able to go to sleep. Have a tendency for mouth to fall open. I can’t seem to sleep with even a chin strap alone. I bought an Ultra Mirage Full Face Mask with Headgear recently but can’t sleep with it either. Don’t have insurance but can afford to experiment a bit and have a good GP. My father had severe apnea, probably his father and brother too who both died from heart attacks. Not sure where to go from here.

Not only do many CFS patients have apnea, but many patients with sleep disorders are misdiagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I was one of them. The joint and muscle pain my docs attributed to Fibromyalgia turned out to be the results of having Periodic Limb Movement Disorder. Continue to work toward fine tuning your cpap therapy with the help of some here, then see how many residual daytime symptoms remain. You may be pleasantly surprised to find them significantly improved.
Kathy

If you tell us what pressure your machine is set to and if you use the ramp(and at what setting), it will help. Also, what are your problems with the mask? Leaks, comfort, sore spots, etc. The more you tell us about the problems you are having the better answers and suggestions we can give you.

Brenda

Tape your mouth with the nasal interface.

How did you end up finding a pressure for the Remstar Plus?

Did you use a autopap and what did it find as your 90% pressure?

If you don't have insurance, you should have purchased a autopap then it would automatically find your pressure on the hour and it would allow you to start off sleeping with a much lower pressure, this helps you get to sleep.

The UltraMirage Full Face is about the quietest mask you'll find so I don't see that as being the problem why you cannot sleep with it, but it does take patientence and using the machine every night even if you can only wear it a few hours.

I suspect your pressure is wrong or the machine you have is not set up correctly, it should have a Ramp enabled so you can hit the Ramp button and fall asleep before the higher pressure kicks in.

Hi Kathy, Brenda and Snoredog!
Strange that there isn't more mention of apnea in CFS literature. Any improvement would be a Godsend.
I think the problem is that my mouth has a tendency to hinge open and the air starts rushing out of it. I have the REMstar Auto C-Flex CPAP Machine and it seems fine. Not sure about the ramp but I don't experience any problem with the pressure when I'm awake (though I did with the first machine 4yrs ago). It seemed last night that as I was falling asleep air started coming out of my mouth and so I had to take off the mask to sleep.
I don’t know what pressure it’s coming through at, nor what 90% pressure is.
The problem with the full face mask isn’t the noise but just the fact that it’s uncomfortable, around my nose especially. But I can try it again and see what happens.
Rob

I've recently had to switch to the UMFFM for my upcoming VPAPAdatp titration- I've used masks that don't even cover the end of my nose for the past 2 1/2 years (ComfortCurve, Swift, ComforLite, Breeze, etc); before that, I had only used regular nasal mask (Ultra Mirage, Activa) for 6 months or so). It took me a few nights to get the headgear customized for what works for me, but its great now. My mask fits perfectly; there is no way I could get it to stop leaking with the headgear straight out of the box, short of over tightening, head-stuck-in-vise-feeling. The 'one size fits all' headgear may work for some people- maybe they have bigger (taller?) heads- but I've found I need more adjustability to get a good fit .

All it took was scissors & some Velcro 'tabs' (recycled from old headgear- could have used new Velcro too). With the extra adjustment tabs in the back, my headgear is rounded, like the back of my head (top), instead of perfectly flat, like it originally was (bottom). You can also see I covered the forehead piece with polar fleece to make it more comfortable.



The 5 cuts I made