Five months in and not getting anywhere

[echo]

Hey chipbutty - I'm not as experience as others on this board, but I can share my 2 pence with you

I was titrated on "somewhere between 7 and 10" and have used almost every pressure in between, both in CPAP and APAP mode. My AHI has been consistently below 1.0 and I still felt horrible. Had blood sugar, thyroid, blood work, the works - all checked and all basically "OK" according to the highly educated docs The sleep doc basically told me to change the pressure if I still wasn't feeling well. She said at 10cm I was getting central's so that's why I didn't try anything above 10... until now.

Well one thing that I can see from my P&B APAP is "flow limitation runs" -- from what I've read most people ignore this because it doesn't seem to affect them negatively when the number is high. But then there is a whole discussion about UARS (Upper airway resistance syndrome - it could be described as a 'mild hypopnea' but the mechanism is not necessarily the same as OSA? I am still trying to understand it. Also I've read that bi-levels may be more effective for UARS). Anyway I thought - let's try to reduce those flow limitation, because all the other numbers were OK.

Each week, I raised my pressure by 0.5 cm, until I found that at 10.0 my flow limitations were still too high, at 10.5 they were half of what they were before (and I started feeling GOOD), and at 11 I started getting too many central apneas (and I felt horrible again). So now I'm at 10.5 and it seems to be working for now, even though the AHI hasn't gone up or down a single digit-- but those flow limitations are much less. I do have a bit of aerophagia as I'm falling asleep on 10.5, but it doesn't seem to be a problem during the night. In the mornings and during the days I'm starting to feel a bit "normal" again.

I have no idea if you can see data on "flow limitations" on your REMstar, but (while researching other things, etc), I would start at a pressure and increase by 0.5 cm every week, and see whether you can feel a difference. I think a 1 cm increase is too much, just based on my own personal experience. If I had jumped from 10 to 11 without trying 10.5, I would still have been lost. So change in the smallest increments possible! And stay with a pressure for at least a week before making another change. That's just what *I* would do...

And what about snores? Can you see if you're still having a lot of 'snore' events?
Also sleep position makes a big difference. Though with that said, I guess if you are getting low AHI on your back as well as other positions, then maybe it's not the culprit.

And of course, ditto to what everyone else said. In the end OSA may only be a small part of the whole story. RSL/PLM and GERD are probably both a good thing to get checked for.

You have a great attitude, so keep at it and don't give up! We're all cheering for you!!

[chipbutty]

Thanks echo. Very interesting. I'm not really familiar with flow limitation, mainly because my machine doesn't appear to capture that data as it's blank when I look in Encore Pro Analayzer.

I remember reading about UARS when I first got diagnosed and like you I've read about it and was confused. It appears to be very similar to OSA but not, in that it doesn't cause a complete obstruction

My average snore index is 3.2 or 24 snores a minute. This is very misleading though as most nights it's only 1 or 2, then I've had three nights with 300, 400 and 500 which has inflated that reading. I just put that down to congestion. I do have perennial rhinitis and use a steroid spray which pretty much keeps it under control.

[gasp]

...I'd not been sleeping well for years and didn't know why. I tried just about every sleep remedy going and read all the books. Then last year I started to wake in the night sweating and my heart going like a steam train. You've all been there! I was shattered for months on end and fell asleep at every opportunity. It was something of a relief when they finally diagnosed me with mild/moderate sleep apnoea....

I'm surprised that if you had night sweats and your heart was racing that you were diagnosed with mild/moderate versus severe. What were your numbers from your sleep study (not from titration - but from the study)?

But I'm now feeling pretty down, demoralised and frustrated. I am still shattered, exhausted and moody. I feel just as tired as before I started CPAP. I probably have one reasonable nights sleep a week where I sleep for 5 or 6 hours solidly. I check my data every couple of days and I can see that CPAP is doing its job. My average AHI is 0.7. I just struggle to sleep. Leaks were an issue early on and I seem to be hyper sensitive to any leak and this wakes me up. Though some nights the leak rate graph is almost flat and yet I still waked up constantly throughout the night. I seem to be stuck in a vicious cycle.

I'm sorry you're feeling so down. You haven't been on therapy very long and you mentioned that early on you had problems, which may have led to you not getting solid therapy and therefore relief for some time. One thing I think is common for most people is that it takes months to begin to feel like you're on the road to wellness. For some, many months - just for reasons such as you discussed such as getting a comfortable mask. I don't know if this is true for you, but one thing I've noticed is that a mask works well on the first few nights when I'm getting used to it and sleeping lightly. Then when I fall into deeper sleep, I disturb the mask and it leaks or some such thing. It took a long time to know what will work for me. Even so, I still have wakenings when I have to adjust this or that.

The more you can relax about all the details you have to cope with having apnea, perhaps the easier it will be to resolve your issues. You are proactive and have certainly tried many things, such as:

I have all the accessories that us cpap'ers acquire. Let's see: Chin strap (I bought that right at the beginning when I realised I mouth leaked and I only had a nasal mask), Papillow and SleePap pillows ( neither of which I really like), pad-a-cheeks, tights (or panty hose as you call them in the US), medical tape (I should have shares in them), Hose Buddy, CPAP wipes, Dr Bronner's soap, Humidifier, KY Jelly , Lanolin, Macks's earplugs, Ayr Nasal Spray, Chin up strips. The list goes on.

I don't post on here that often, though I check up on here daily, but today I really felt the need to! I've been feeling desperate for the past month. I don't really know where to go from here.

Your AHI is good, but it may take some time for your body that had to undergo perhaps years of apnea to adjust. Staying in close touch with the forum early on was especially helpful for me. I applaud you for posting this!

So to recap: relax. Relaxing isn't easy for some and for those it's hard for it's needed the most. Five months is such a short time. Hang in there! I'm rooting for you!!

[echo]

I do have perennial rhinitis and use a steroid spray which pretty much keeps it under control.

I think you'll find you'll get a lot of flack for that on this forum
Sounds like you're getting congested a lot. That can of course affect how well the CPAP therapy is working! Have you tried stopping the steroid sprays and trying a neti pot or similar instead?

[chipbutty]

Thanks for the support Gasp. When I was hooked up for the night with the oximeter I think they said I had around 20 odd events each hour. I think. When they tried to find my ideal pressure just before they gave me the CPAP they put on a APAP for the night. I slept so badly that night that they couldn't get much meaningful data and they tried me out on 10cm2. That certainly has worked in so much as it's stopped most of the events. Because my data has looked fine they kept on 10cm2, until I asked to try 9cm2 to see if it cut down on the air swallowing.

I agree with the mask situation. I've learnt not to get excited about having a decent couple of nights with a new mask Getting the right mask is certainly an integral part of the entire process. A very difficult balance to find one that is both comfortable and minimises leaks. The Quattro can do both for me but it's an absolute pain trying to prevent those initial leaks before I turn off the light. It seems to react differently each night I put it on even though the settings are the same. I don't think my deep nose bridge helps with that mask. It's a very fickle beast. The mask that is

[chipbutty]

My congestion isn't too bad echo but maybe I should pay more attention to it some days. I've been irrigating since 1998. I started off with the water pik and last year bought myself the Rolls Royce of irrigators, the Grossan Hydro Pulse. Well, compared to my original Water Pik it is like a Rolls Royce. I tend not to use it unless I have a cold. I guess I am just lazy and I could probably benefit by using it each night which would mean I could use the nasal spray less. It's just so much easier to use the spray

I do have perennial rhinitis and use a steroid spray which pretty much keeps it under control.

I think you'll find you'll get a lot of flack for that on this forum
Sounds like you're getting congested a lot. That can of course affect how well the CPAP therapy is working! Have you tried stopping the steroid sprays and trying a neti pot or similar instead?