I just can't make it right again

[Country4ever]

As I've mentioned before, around Christmas, my numbers started going down. yes, I gained a few pounds, but I honestly don't think that's causing all this trouble. The day after Christmas I got a terrible cold (which I hadn't had in about 13 years). I do have Fibromyalgia and have spent the past 13 years going through perimenopause.......both things causing me terrible problems (fatigue/headaches/sick feeling/cognitive problems, etc.).
But about 2 years ago, I started on cpap and a little later was started on an antidepressant, which helped alot. Last year was wonderful for me. I always had energy, motivation, happiness. My cpap numbers during all that time were great. AHI always less than 5 and leak rate mostly low. But beginning in January, it all went to hell. I haven't had one morning with an AHI less than 6-9 and my leak rate is usually .30-.50. I don't know what happened!
I had the pressure tested at the DME's (although the way she did it was strange), I've changed all the tubing and headgear. I've played around with pressures.
My previous pressure was 7.4. I've tried up to 9 and it doesn't really change anything except makes my leaks worse.

I don't want a FFM, as it sounds like they have their own set of problems.
I use blue painter's tape which totally occludes my mouth. I use Swift original pillow, size large. I just don't understand where all those leaks are coming from. For the most part, the pillow fits snug most of the time.
Previously, if my leak rate was high, my AHI would be (falsely) low. But now both numbers are always high.
I use the ramp so my moving around before sleep isn't counted.

I'm exhausted all the time again, anxious, having migraines again, cognitive problems, etc. I don't know if I'm having a fibromyalgia flare and its causing my bad numbers, or if my bad numbers are causing all this other stuff.

I haven't gone to my sleep doctor, as he'll look at me like I'm an alien when I tell him all this. He's a nice guy, but doesn't seem to know much. I do NOT want another sleep study, period.

Why would something be working so great and then all of a sudden stop? Why is my pillow leaking so much? Isn't that the only place it can leak if my mouth is taped shut? Is it coming out my ears?? haha

I don't have software.

I'm still not getting up alot at night to pee, so I must be getting some benefit from it..........but I want more.
I just can't believe how bad my numbers are and I can't seem to do anything about it.
Am I doing something wrong??
I'm so bummed. After feeling good for awhile.........I don't want to lose that wonderful feeling! Right now, I feel desperate for good sleep again.
Thanks for your help.

[dave21]

I don't know much about fibromyalgia but it's entirely possible that could be causing a problem in your sleep if it's happening whilst you're asleep. However if you're tired and exhausted all the time and waking up a lot it's entirely possible that your pressure isn't high enough. Maybe something has changed internally in your body that's affecting these figures.

Have you added or changed any medication or drunk alcohol in the evenings? That could all have an effect.

Without your data it's not going to be easy to diagnose as this would show if the pressure isn't high enough. It would also tell what type of events, e.g. Obstructive or Central Apneas you're having. I know you said you would prefer not to go back and see your Doctor and trust me I understand that as I've been there too but they should be able to check your data from the machine if they have ResScan and that wouldn't then need you to have another sleep study.

The other option if you're really against going back would be to purchase a card reader and download ResScan to read your data and read up here in the forum on how to do this.

Weight can/will have an effect on Obstructive Apneas but over the 4 years I've both dropped about 42 pounds and put on equally 30 pounds at another point and my AHI's really didn't differ that much, they've always been around 4.5.

[DoriC]

I don't know much about your mask but is it possible you need a replacement mask or new pillows or a different size? Just thinking out loud.

[Jersey Girl]

Dori,

I was thinking the same thing. How old is your nasal pillow? Could it use replacing? Is it still the right size for you? Sometimes, it's the little things that cause all the trouble.

Regards,

Jersey Girl

[banarabbyt]

I use the smallest size pillow, I accidentally wore a Medium one time and my mask leaked like crazy. Do you have small or large nostrils? lol I know that's a funny question.

[KatieW]

Just wondering if it could be this:

I have a friend who started getting enormous leak in his mask. Turned out that there are 2 little oxygen outlets, which were plugged by clear silcone plugs. Since he wasn't aware of them, he didn't notice when they fell out.

Anyway, I hope your solution is something simple like that. Check the hose, connectors, pillows--maybe it's leaking there.

[Country4ever]

I just changed the pillow the other day. I use a large even though I have a smallish nose. Anything smaller than the large one leaves more room around the prongs for air to get past. In my desperation last night in the middle of the night I got out an old "M" one and the leak was worse. So I think the large is what I need.....but if I move just a fraction of an inch at night, air rushes through the sides of my prongs. I feel like I'm going crazy and I think its because of this darned machine not working now. Well, actually, I guess its me that's not working right!

[jweeks]

Hi,

Have you tried using Lansinoh? If not, give it a try. You can find it in the baby products area of your grocery store or at a drug store. It comes in a purple tube. It is a bit expensive, but a little goes a long way. It works miracles on nasal pillow leaks.

-john-

[ozij]

Why would something be working so great and then all of a sudden stop?

Because we are living human beings and things about us change. Change can be expected in everything.

Why is my pillow leaking so much? Isn't that the only place it can leak if my mouth is taped shut? Is it coming out my ears?? haha[/quote]
The Swift and Swift II can leak from the sides, and from the barrel.
Open this link to the user guide look carefully at the illustrations for disassembling and assembling, and make sure all those parts are assembled correctly.

When is the last time you bought a new mask. If you meant "mask" when you said you changed the "headgear", then I misunderstood you. If not, it's possible that your nasal pillows have simply worn out, and you need new ones, or the barrel caps, or the grooves on the barrel itself/

It is also possible that the little weight you gained changed the shape of your face slightly, and the Swift is no longer the right mask shape for you. Try one of the many other nasal pillows masks if that's what you prefer.

You'll find a large selection here:
https://www.cpap.com/simple-find-cpap-p ... illow.html

[Country4ever]

Thanks everyone,

Yes, I've tried Lansinoh, but leaks continue.
Yes, I've changed everything there is to change and checked for leaks and tightness everywhere.
Here's something interesting: Also around the holidays I began wearing a mouth appliance for TMJ disorder. I've read that in some cases it can worsen OSA.
I tried sleeping without it a couple weeks ago, and my numbers were even worse, but I had a bad night of sleep in general.
Last night I decided to try sleeping without it again, and I lowered my pressure to 7.6. My numbers were finally good again! First time in several months!
Leak: .08, AHI: 5.1.
I will sleep a few more nights without my oral appliance and if my numbers stay good, then I'll know it was that. I'm so excited to think I can fix this, but yet I'm bummed because I was supposed to wear this oral appliance at night for the rest of my life so that my jaw joint doesn't lock.
I sure hope I can reproduce these results again tonight! Nothing like a good night's sleep!!