CPAP not helping, what now?

First of all, I want to say thank you to the people posting here. I have been lurking here for weeks gathering information since my initial diagnosis of OSA. The posts here on diagnostic questions and equipment have been a godsend. Unfortunately none of my medical providers have been very helpful with information, especially the sleep lab. I think the information I found here has saved me a great deal of trouble and money, so again, God bless all of you that post here.

But now I have a problem that I have not seen on here, but the important background info first. Switched to a new doctor and on my first visit, he said “You look tired, are you having trouble sleeping?” He asked all the right questions and had the initial diagnosis of OSA within five minutes. Diagnosed with OSA on sleep study a month later, then had the first titration study a month after that (a disaster due to an inexperienced PSG tech). The guy never listened to me when I told him I never slept during the study and he insisted I did. I called the lab later that day and insisted that someone look at the data as I felt he wasn’t experienced enough to know what was going on. I told them I felt this because he did no patient education of any kind, just slapped the mask on me and left. Sure enough, they call me back and tell me that I had “microarousals” all night and offered to repeat the study at no charge. Mind you they still insisted he was “very experienced” but just missed this finding. Two days later, same lab, same PSG tech, I asked a lot of questions and insisted on seeing a selection of different masks (thanks to info learned from reading this site). Got the Hybrid mask and managed to sleep 4.5 hours. Again, this guy comes in and insists I must feel better. I told him no, I don’t. Who would feel better after only 4.5 hours of sleep? I said. I tolerated the mask and CPAP just fine, but still did not feel better. Pressure is titrated at 11 cm.

Another month later, I get a Remstar M series Auto PAP with humidifier and a Hybrid mask (again due to info from here and a long fight with DME and insurance plus a $350 upgrade charge from regular CPAP). I have been using it for 10 days now and tolerate the mask well with no leaks or other equipment related problems. I had the RT set it up with a range of 7 to 15 cm on the Autopap. The problem is that I still wake up every night, still have the headaches every morning, still feel “foggy” and unable to focus, still irritable and depressed, just like without CPAP. The only improvement I’ve seen is that I don’t have to go to the bathroom as much at night. I increased the lower end of the pressure from 7 to 9 then to 11 for the past 2 nights with no change. The AHI on the software display is about 10 every night. I was diagnosed with an AHI of 5.0 with avg of 25 apneas per hour, no RLS or other problems noted, only mild OSA but still there. I called the RT at the DME and she recommended turning the pressure down to 6 to see if maybe that will help. I don’t understand how that’s supposed to help when I was titrated at 11 but ok. Just woke up an hour ago with my heart racing and trying to catch my breath. So after all this I’m faced with the possibility that CPAP is not going to help me. I told the guy at the sleep lab it didn’t help during the study and so far it still isn’t. I’m afraid they may have missed something else. So before I go back to my doctor and tell him it’s not working, what else should I try? Other than obesity and mild hypertension, I don’t have any other medical problems.
Thanks - Jim

Jim,

Be very careful that you don't end up confusing yourself with all the info you are gathering from so may sources (like the multitudes of us here)

In regard to valid OSA, it does seem to take quite a while before most of us got (yet) any sort of 'balance' with this therapy. There are the confusing types of machines, the confusing range of pressures they run at (autos & bilevels), and the confusing issue of masks.

Sometimes it is far easier to start with basics such as a straight cpap at a validly recommended titration setting (say for you 10-11 cms). then run with that for a while (perhaps trying nasal mask, nasal pillows, hybrid, & if really interested a f/f mask). If you have an auto. Try it as a cpap for a while (with ramp or cflex) and then when you feel you are making some progress, start to widen the envelope.

I am in little doubt that newcomers get confused into difficulty with the variety of 'opinions' and choices that can be picked up, tuned into here.

Among the 'old timers' there are lots of stories of how long it took to make good headway.

Take it slowly & carefully.

Good luck

DSM

Jim,

I may be able to offer you some hope. You're obviously a complicated case, but that doesn't mean that you don't have OSA, and that doesn't mean that what you're doing is wrong, but it does mean that you need to make changes. It also means that you are probably the only one who cares enough about this to figure out what the changes are that need to be made.

To give you an idea of how much perseverance may be needed, I can tell you that my own AHI also went up after starting xPAP therapy. It took about a month before I figured out that my full-face mask was pushing my jaw back, thereby increasing my apnea rather than decreasing it as the pressure went up. Switching to a nasal mask resolved that issue but then I had to deal with congestion. I tried a number of things to resolve congestion, but none really worked until I stumbled upon the Grossan nasal irrigator. Next, there was the aerophagia to deal with, and while I haven't conquered that yet, it is tolerable for the most part.

Are your problems the same as the ones I had? Beats me. You're the one who is probably going to have to decide what works and what doesn't for you. You could always try finding another sleep lab, but I'll warn you that the odds are not in your favor if you rely strictly on the "medical folks" to fix things. Their track record is none too good.

BTW, I love the panhandle there where you are, Jim. I've got a graduate degree from Texas Tech, and also spent a couple of years in Amarillo way too many years back.

Good luck. Hope this helps. Also, getting the Encore Pro software is highly recommended for helping you resolve things.

Regards,
Bill

Here is my non medical opinion.

Since your titrated pressure is 11, I would narrow the range on the machine to 9 - 12 or 9 - 13. Or you could try it as a cpap as suggested above.

I share your frustration about having a tech try to convince you that you feel so much better on 4.5 hours of sleep. I am a zombie (cpap or not) at less than 6 hours of sleep any night.

Hang in there.

Other then what others have said.

I am wondering if a pressure of 6 is to low for your hybrid mask? Which may leave to much CO2 in the mask. Is there a minimum pressure for your mask?

Your question of why a pressure of 6 when you have been titrated at 11 is a good one. I would ask that to the Dr.

Do not give up.

Getting everything all working together is a struggle as several comment above have indicated. I struggled much like you and was maybe in some denial, but finally I told my self I had no alternative but to make cpap work. Since then i am on the mask at least 7.5 to 8.5 per night. I have slowly started feeling more and more refreshed and rested. Using this forum and my taking charge of my therapy has helped me to overcome the many hurdles presented in getting it all together. Using the encore pro software daily details report allowed me to see my progress. For instance, I didn't realize I was mouth leaking and this was effecting the therapy. I now have this under control and have seen improvement weekly.
My recommendation: Stick with it and use all these many forum contributors to help you understand how to manage your therapy. I can assure you it can get better. Also, you may have quite a sleep deficit from OSA to overcome and only your cpap therapy can correct this.
Good luck

Jim-

Just a point: AHI is an index of the number of apneic events per hour on average PLUS the number of hypopneic events per hour on average. Therefore, you could NOT have been diagnosed with an AHI of 5 and 25 apneic events per hour on average. Even if you had NO hypopneas during study, your AHI would have, at a minimum been 25 attributable just to the number of apneic events per hour on average that you reported that you had. Any hypopneas would have raised the AHI beyond 25. And, for your information, an AHI of 25 is considered to be either "moderate" or "severe" (I don't recall exactly which) according to the AASM classification.

So, my best advice would be to stick with it, and pester your doc for help till you get it right. Better than waking up dead one morning.

Chuck

GoofyUT wrote:Just a point: AHI is an index of the number of apneic events per hour on average PLUS the number of hypopneic events per hour on average. Therefore, you could NOT have been diagnosed with an AHI of 5 and 25 apneic events per hour on average. Even if you had NO hypopneas during study, your AHI would have, at a minimum been 25 attributable just to the number of apneic events per hour on average that you reported that you had. Any hypopneas would have raised the AHI beyond 25. And, for your information, an AHI of 25 is considered to be either "moderate" or "severe" (I don't recall exactly which) according to the AASM classification.

Thanks for the laugh, Chuck. I thought I was being geeky this morning in my post to RG, but you got me beat. .

Regards,
Bill

HEY SLEEPYJIM,
I AM HAVING ALL THE SAME PROBLEMS YOU ARE AFTER ALMOST 9 MONTHS ON CPAP.......THAT SAID, I AM DETERMINED TO MAKE THIS WORK..........CALL ME STUBBORN, HARDHEADED, OR JUST A REAL PAIN IN THE BUTT....I'VE BUGGED EVERYONE HERE AND WILL CONTINUE TOO UNTIL THEY STOP RESPONDING........I DO ON DAYS FEEL SOMEWHAT BETTER.......BUT I ALSO GET DISCOURAGED.......I MAY GO BROKE........BEAT MYSELF UP FOR NOT DOING BETTER OR KNOWING MORE STUFF.....BUT IN THE END I WILL PREVAIL........SOOOOOOOOOOOO HANG IN HERE AND WORK WITH THOSE WHO KNOW BETTER........THE ONLY OTHER ADVICE I CAN GIVE.......IS THIS STRUGGLE SURE BEATS THE ALTERNATIVE..................ELLEN

Sleepyjim,

I'm with DSM on this one. Since you've only been on therapy for about 10 days/nights, it could be too early to feel the benefits of it, yet. Also, I've become a firm believer that Autos when set to ranges (especially wider than 2 or 3 cm) can be disruptive to sleep (depending on the person).
My suggestion would be to set your machine to CFLE mode and at your titrated pressure of 11 and try that for a couple of weeks. It can take several months to respond to this therapy, depending on how long you've had OSA and the severity of it.

Hang in there.

Den

I COMPLETELY agree with EVERYTHING that Den said!!!

Its a tough, twisted journey, but it DOES work. So buckle up, relax and settle in and you'll get it to work for you as many of the rest of us have.

Chuck

BTW Den, I too have come to conclude that straight CPAP is better for sleep after you find out what the right pressure is. Auto-titration I believe is GREAT for arriving at the right pressure in the near-term, but for the long-term, CPAP seems to provide the smoothest sleep, at least for me.

Sleepyjim,
1. I had a period of feeling much WORSE on XPAP than I've ever felt without it. I'm convinced that is because arousals before were undetecteed and didn't bother me near as much as fully awakening with treatment.

2. I have found that swings in pressure with a wide ranged auto setting very bothersome. I get my best rest with a close range auto setting.

3. Mask hassles seem to be the biggest obstacle to rest now. But I have been having this mixed success since February already. Hang in there. It will get better.

Get the software and use it. It tells you a lot about the night.

TerryB

GoofyUT wrote:I COMPLETELY agree with EVERYTHING that Den said!!!

Its a tough, twisted journey, but it DOES work. So buckle up, relax and settle in and you'll get it to work for you as many of the rest of us have.

Chuck

BTW Den, I too have come to conclude that straight CPAP is better for sleep after you find out what the right pressure is. Auto-titration I believe is GREAT for arriving at the right pressure in the near-term, but for the long-term, CPAP seems to provide the smoothest sleep, at least for me.

IMO, the ONLY virtue of the Auto is to help find (or verify) the appropriate fixed pressure to use in your therapy.....in a shorter amount of time.
Having a machine with data recording capabilities and the software to interpret it are by far the MOST important tools that an XPAP user can have.

Den