A little frustrated with treatment so far :(

[Ender519]

Ok.. sorry for the book that follows.. I am male and in my early 30's. For years I have been exhausted and my memory is completely shot, and my wife has complained about my snoring to the point where she sleeps in the guest bed some nights. I took a sleep study on March 30th and was promptly told I was basically the poster child for sleep apnea. My AHI for the first hour was 137, or basically every 30 seconds average. From what I remember, I was told that my O2 levels got down into the 80's, and that I had what they considered to be severe apnea. I was fitted with a mask in the sleep study and they ended up prescribing me a pressure of 14.

I had the presence of mind to insist on heated humidifer and some sort of exhale relief, and what I got was a Respironics M-Series CPAP Pro.. all in all a fairly nice machine.. c-flex, heated humidifier, smart card, the works. And I ended up choosing a ResMed Swift LT nose pillow (I have a goatee so none of the nose or face masks seal properly), and a chinstrap, the velcro kind that goes all the way around your head. And truth be told, it wasn't too bad after a few days in the sense that it doesn't bother me to use the machine, and with C-Flex set on 3 it isn't too uncomfortable breathing out. I've heard a lot of people champion BiPap, never tried one myself, and so far I am doing alright with just the cflex.

So my main issue is this.. after 4-5 days, I wasn't feeling better. Most of the people I know on xPAP therapy feel loads better. Well, I don't. Not only did it not get better, some days it gets worse. I feel more tired than before I started this whole thing. The machine does have a smartcard reader, but I'm not too keen on shelling out $200+ on software and reader when the DME will do it for you for free. The menus on the Respironics aren't terribly detailed, but this is what I got.. Leak rate of 31L/min, and AHI of 10-12. Coming down from 130ish that AHI is a huge improvement.. but something tells me it should still be lower.. 5-15 is considered "mild apnea" after all. But my wife says I still snore every now and again, and I still wake up like I can't breathe. Now here's the kicker.. one night I wake up where I REALLY can't breathe. Apparently I stopped breathing long enough that the machine's auto shutoff kicked in and the CPAP shut down. I had to rip my mask off and gasp for air.

Anyway, I voiced my concerns to the DME.. they had me bring in the machine and verified no excessive leaking. The leak rate is normal for this mask under that pressure. They told me they did note some central sleep apnea events on the sleep study and said that this means the brain stops telling you to breathe and it happens in a small number of patients. She said that she would talk to the doctor about it right away and they'd call me later in the day. They called back and... they are changing my pressure from 14 to 15... yeah... not much change there, is it?

A few days later, I'm still not doing better so I page out to the doctor and talk to him directly. He told me to change the pressure back to 14 and I got the distinct feeling that he thought I was overreacting about this.. he told me to just give it some more time and let him know how I was doing in a week. So I made a followup appointment.

A week later, I'm still not feeling well.. I feel more tired than I used to, and I bring in my machine so they can download all the data off of it. And my AHI is still hovering around 10, leak rate in low 30's.. blah blah.. and I'm getting 6-7 hrs of sleep a night. I expressed my concerns again and my doctor's take on the situation is that he feels the sleep apnea is relatively well controlled and that he feels my reaction is one of stress, and he writes me a script for Xanax. That's right, he basically said "chill the f*ck out, pop some pills and go home" albeit in a nice way. He said he has seen this with many people, and to give it more time.

I am now on my third week of CPAP therapy, and a bit frustrated because it feels like either I am worrying WAY too much or expecting too much too soon, or my concerns are being brushed aside when they shouldn't be. I for one am worried that they noticed CSA on my sleep study, and from what I've read that means I should be on a bipap with spontaneous breathing timing. I know it's a hell of a lot more expensive, and I don't want it just to have it.. truth be told I'd rather the machine I was given just do the job and be done with it. But I don't know if I'm being irrational, or if I have a bad doctor. He clearly isn't interested in trying me out on another machine, and clearly thinks taking Xanax will calm me down and help the therapy. I don't know what to think. I don't want to go through the hassle of changing doctors and alienating this guy if he's right, I just feel like I don't have a solid answer.

So what do I do?

[track]

From a non expert...sounds like you might worry too much and expect too many immediate results. This stuff takes time...it sure has for me....but you should be elated that you have knocked your AHI down over 100 points....that's a major accomplishment and has to be super beneficial to your overall health in the long run. As a young man..you are just starting the journey to a longer more healthful life. Congratulations.

[boston]

you stole my story, sounds just like mine.
same age group, everything, even the goatee and pressure.

I have the same equipment as you except i dont use a chin strap and my machine is an auto, not a straight cpap.

you may ask the doctor to change your prescription to an auto set at 7 - 20. you can then wait a week or 2, see what pressures your using, and make adjustments to find your sweet spot.

i was initially prescribed 14 also, luckily with the auto, i found 12.5 was my sweet spot, however the auto is set 12-17 and hits 15 regularly and occassionaly 17. i usually keep an ahi of 0.8 or less. but it took time.

Also, it took me about 6-8 weeks to really start feeling rested and awake again. slowly i stopped falling asleep in the evening, during movies, etc., i had more energy, just keep in mind, youve been sleep deprived for some time, so it may take awhile to recover. i dont have any experience with centrals, but im sure someone else here will be along to help with that.

[ozij]

The machine does have a smartcard reader, but I'm not too keen on shelling out $200+ on software and reader when the DME will do it for you for free.

Wrong approach. It's your body, your sleep, your treatment - tracking your own data should by your own responsibility. The information you'll get, and the ability to improve your sleep based on that info is worth far far more than $200.

The menus on the Respironics aren't terribly detailed, but this is what I got.. Leak rate of 31L/min, and AHI of 10-12. Coming down from 130ish that AHI is a huge improvement.. but something tells me it should still be lower.. 5-15 is considered "mild apnea" after all. But my wife says I still snore every now and again, and I still wake up like I can't breathe.

That's too high as an end point. And you may be desaturating on those apneas and hypopneas. Ask your doctor to prescribe and all night pulse oximetery to see how you're doing.

Now here's the kicker.. one night I wake up where I REALLY can't breathe. Apparently I stopped breathing long enough that the machine's auto shutoff kicked in and the CPAP shut down. I had to rip my mask off and gasp for air.

I wouldn't be so sure the auto shutoff closed shut down the machine: maybe your electric cable jiggled? I doubt any leak - with the mask on your face - will cause auto shutoff to get into action. However, just to be on the safe side: cancel that option!

Anyway, I voiced my concerns to the DME.. they had me bring in the machine and verified no excessive leaking. The leak rate is normal for this mask under that pressure. They told me they did note some central sleep apnea events on the sleep study and said that this means the brain stops telling you to breathe and it happens in a small number of patients. She said that she would talk to the doctor about it right away and they'd call me later in the day. They called back and... they are changing my pressure from 14 to 15... yeah... not much change there, is it?

A cm can be a lot of change - and can make a significant difference.

I just feel like I don't have a solid answer.

So what do I do?

You ask your DME for the a copy of the detailed report, and study it. Especially the night when the machine shut down -- you should be able to see on the report exactly what happened in your breathing just before the machine shut down. Make a point of asking for detailed report, not the summary.

You start studying the subject: viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html
The first post on this thread will give you important links.

You get hold of your PSG report, and note how may CSA's you had, and what - if any - was their relationship to either pressure, or arousals. Pressure induced CSA's may abate as your body gets used to the therapy - and those caused by arousals disappear once obstructive apneas no longer wake you up.

You ask your doctor when he expects your AHI to come down, and why they made those 14 --> 15 --> 14 changes. If he doc. did not see your detailed report before suggesting those changes, you had better find out why your doc does not use available data to support his decisions. Could be he does not even know it's available - he may be worth educating -- or he may be worth nothing.

Don't waste time arguing with your doctor about the kind machine you need - discussing an S/T backup does seem anxious and premature at this point. You will be more convincing if you have your data in hand - and get the doc. to discuss it with you. Don't expect your concerns to be taken seriously by the doctor if you yourself won't take your data seriously enough to track it.

Some DME's don't even know the machines give detailed reports -- another good reason for you to get your own software, and take your health more seriously that any DME.

I track my own data using software, and change my own setting based on what I've learned and on what I see.

Welcome to the forum, and good luck!

[rested gal]

Welcome to this message board, Ender.

If you know how to go into the therapy "setup" menu on your machine, look for the setting called "Auto Off." If Auto Off is turned on, turn it "off."
If that setting is already turned "off" (as it should be, imho) do check the power cord connections. As ozij mentioned, the connection could jiggle loose.

Accessing the therapy setup menu for the M Pro machine:
http://www.apneaboard.com/REMstar%20Pro ... 0Guide.pdf

Please check your Private Messages (button for that is at upper left of this page, at "User Control Panel.")

[Julie]

Hi, and welcome. Have you been told that once asleep your mouth falls open? If so, you're losing all the pumped air that way like so many of us and raising your pressure will not help at all. Try using about 2" of micro- or trans-pore tape from a pharmacy on your mouth overnight (fold a corner so you can pull it off easily) and see if it helps (as a trial). If so, then you probably want to look into a "full face" mask like the Quattro, or Ultramirage (don't worry, they don't cover your whole face )! The DME will only read your "compliance" time from the card (all the insurance co's care about) but the software will tell you the relevant details about what's working, why and why not by providing results for many parameters vs. just time spent on the machine.

[Ender519]

Thanks for the replies thus far. Believe it or not, the DME I have is relatively nice about things.. they are within walking distance from my work and offer a free service where they will pull the data off the card and go over it with you, and I also didn't know if I was truly going to stick with this machine or if they were going to try me on another. This is why I hesitate to pay for the software, but maybe down the road I'll get it..

From the general responses I'm getting it sounds like I need to give it some more time.

Part of the reason I didn't go into the doc's office armed to the teeth with data is I didn't want to antagonize him, you know.. be one of those patients that tries to diagnose themselves. I wanted to give him a chance to read the data off the detailed reports and offer up any suggestions. I also did not specifically ask for a BiPap S/T, I just asked him that based on the CSA events and what he was looking at, does he think I have the right machine? I'm not always good at reading people but this guy, the way he's reacted to my concerns so far, I think he might write me off as a hypochondriac or someone that is trying to do his job for him, and I'm really not trying to be a difficult patient, I just want to feel better...

My expectations are probably a little too high at this point, I am just frustrated that I don't really feel any better, and that some of the symptoms of OSA are peeking through. I do wear a chinstrap and my mouth stays closed at night, and I'm not leaking air more than I should be. I also tested the auto-off by holding my breath on purpose, it does make the machine go off, and I have since turned off that feature.

[mdbarthe]

Hi, Ender, welcome to the forum. Boston already spoke to this, but you have to realize that for many years you have been waking up every 30 seconds or so during periods when you thought you were getting good sleep and your body needed to replenish itself. You have a huge sleep deficeit to make up for. That's why it is going to take some time. You are on the right track, though; you're concerned about your therapy and you've come to others who know what you are talking about and can relate.

I also encourage you to get the software and begin monitoring your therapy. I was on CPAP for over two years before I started checking. The main reason I did was for the very reasons you cite; I wasn't feeling rested anymore even though I was 100% compliant with my therapy. The data showed me several things which, when I made some adjustments, completely improved by situation. The auto-pap or APAP machine was the key to being able to make those changes.

Good luck and stick with the forum!!

[Ender519]

I did notice that most of the people on here have auto cpap or bipap machines.. relatively few seem to have straight cpap.. Problem for me is that I've read enough to know that auto cpap isn't a magic bullet.. it does give you some options and can make your therapy better, but it can also make some problems worse.. and with the fact that my doctor is of the mind that he's there to manage this thing, not me, I'm not sure how I could convince him I need a different type of machine. I tried to approach that subject and his response is that he believes we have the right machine and chalked it up to stress.

I'll see how I do.. I have another followup appt in 2 weeks so hopefully this will take a turn for the better in the interim.

[boston]

an auto can also be set to straight cpap, and if your therapy begins helping more, but then you find it going backwards, you can use it set at 7-20 to check what pressure you need, without having another sleep study.
originally i was prescribed cpap at 14, my DME requested a apap (the only decent thing my DME ever did), my doc agreed and wrote the script for 7-20.
as i said before i found my sweet spot, which right now my 90% pressure stays about 13.5 (with a setting of 12-17).
2 months ago it was more like 16.
I even tried 14 as straight cpap, and got the worst 2 nights ive had yet.
I think if i hadnt had received an apap that i would had to have been titrated again.

just something to think about. everyones needs are different, your doing right by gathering the info you need to make a good decision.

[inernest]

I'm just about in the same boat as you. 3 weeks in too. I spent a week with a nasal mask before I couldn't take it any more and bought a swift LT. I'm still tired. Some days I feel better than before I started, but most days I feel the same or even worse.

I have yet to sleep a full night without waking up, but I'm finally not removing my mask in the middle of the night.

It's a struggle, just know that you're not doing anything wrong.

Everyone around here says it'll get better. Some days I don't think I believe it.