Struggling Newbie - Resmed S9 VPAP ST

Looking for some guidance as I seem to be failing before leaving the gate.

Began having some fatigue issues a few years ago. Sleep Apnea runs in my family. Wife (heavy sleeper) did not notice me struggling to breathe until a few months ago. Rarely have issues falling asleep - usually just the waking up part

Was diagnosed last month with OSA and CSA after an in-lab sleep study. Had 76 apneas and hypopneas with AHI of 35.9. The technician had difficulty adjusting my settings and admitted she was adjusting them right until the study ended. Woke up several times with constant pressure from machine (constant positive with no release).

Prescription was:
Bipap
Pressure 14/10 with Time Insp at 1.5 and Rise at 3.

Received a Resmed S9 VPAP ST with heated humidifier and the Comfort Gel Full Face mask

Was very excited to finally get some relief only to find that after a week I feel substantially worse.

Issue 1
The machine now seems to not follow my breathing and I find it harder to use every night - more frustration than patience at this point. My normal breathing rhythm changes through the night but the machine never wants to let me down into long, slow breaths and is pushing and pulling at different rates. This causes me to start to drift off to sleep only to be awakened as the machine gets into an opposite rhythm - I am trying to inhale/exhale while it is doing the pushing rates at the wrong time. This jolts me awake with an adrenaline rush. After several hours of this I feel like I am the Hulk and ready to smash something with a ton of frustration and adrenaline. This makes it hard to sleep and the longest duration of actual sleep has been about 2 hours consecutive. Had to take a night off so I could get some sleep (sounds backwards).

In addition, there have been several times (where like my sleep study) I woke up with constant pressure from the machine. Thought it was my imagination the first night but now am wondering if it something happening when I am in deep sleep.

And lastly, the pushing against my exhale is sending any mucous deeper into my sinuses and ear giving me constant backup. As a lifelong allergy sufferer this is never a good thing and disrupts the normal drainage causing me to adjust my sleeping position so it drains better...further disrupting my sleep.

Issue 2
And more disturbing to me, I feel much worse with new symptoms which increase daily. I now have dizziness, chest pain, and a huge mental fog, weird sensation of noticing my daytime breathing, and a new ones today with random eye watering and nausea.

I know the standard advice is to just hang in there and it will get better but it seems from reading other posts that there is a gambit of responses to this therapy. Annoyances I was prepared to deal with and I don't mind the mask on my face, noise from the machine, etc. but I'm trying to avoid being one of those people who puts it in the closet because it doesn't seem to help.

Have calls into both my DME and Dr.'s office to see if there is anything that can be adjusted.

Thanks for listening.

Welcome to the forum.
So sorry that things seem to be getting worse instead of better.
I can't help with your machine issues except to suggest that you add your machine model name to your subject line to get the attention of the forum members who have experience with machines similar to yours.
So add "Resmed S9 VPAP ST" to your Struggling Newbie subject line.
ResMed machines in this model line do tend to be rather strict taskmasters and you aren't the first to complain of breathing being out of sync with the machine.

You might check with your DME to see if there are some minor adjustments (rise time, etc) that would enable you to get into an easier rhythm with the machine. Maybe some of the forum members with experience with your model of machine can offer some insights into those possible adjustments.

The CSA part of your diagnosis and the central component won you the special machine and the machine's feature of wanting to make you breathe (when your centrals crop up) have been known to take some time to get adjusted to. It just isn't as easy for you as it is for those of us with plain Jane vanilla OSA.

So do get with your medical care team to see if there are some adjustments in the settings to make things easier. Don't wait.
While we might go along with "give it time" if you were just saying "I am not better"...the fact you are saying "I am worse" means you need to try to address your problems sooner than later.

Thanks for the support and info Pugsy.
Good to see so many people on here supporting each other.

There doesn't seem to be an option for the machine in the profile list (under S9) but I've updated it with the "s" model as well as my subject line update.

Update as I'm writing this, my ENT's Dr.'s office called and said that they couldn't help me as the machine was too specialized for them and that the company they referred me out to will have to help me. The "Specialist" required is also my DME. I know my "specialist" works two jobs and this is her second job (explained during my fitting). Hopefully, she will get back to me today.

Not so sure about where this is going but I'll post an update after I get a response.

The equipment choices in the profile are all tied to products that cpap.com has sold or currently offers for sale. They have never offered the S9 VPAP ST and that is why you won't have that choice available. I would suggest that you leave your machine notation in your comments section like you have it and just don't list the normal machine selection...if you leave it pointing to the VPAP S people will get confused...they will see it first and not look at the comments line and likely try to give you ideas based on the S9 VPAP S which won't help you.

JohnBFisher (forum member) has extensive experience with your type of machine but I haven't seen any posts from him lately.
Hopefully he is just away for the holidays and will be back soon.
If you have time you might read some of his various posts because a lot of them will address some of your issues.
search.php?author_id=44411&sr=posts

Normally he will respond to the ASV type of questions and posts...that's why I suggested you add the VPAP ST to your subject line so as to get his attention.
We don't have a lot of forum members with experience with your type of machine but we do have a few and someone will come along...and/or we will keep bumping your thread to the top of the page to get attention.

I use a bilevel S9 VPAP machine but my machine is a "plain" VPAP and not designed to work like yours since I don't have any strong central component to my sleep apnea. You have a special problem requiring a special machine so try not to be disheartened.
Eventually people do adjust but some people just have a harder time of it than others.
So about all I can offer is that you aren't alone and what you are experiencing is not uncommon unfortunately. Like I said before...if you weren't saying "I am worse" we might just be happy with "give it time" but since there are some things that can be done to try to make the adjustment not so painful...it sure is something that you want to check in to in hopes something will help.
You gotta get the sleep first to have any chance of feeling better.

I can sypathize with you. My machine is very much like yours. I also have a lot Centrals. When I first got it I thought my sinuses would explode with so much pressure. I finally went to the doc (ready to quit therapy) but he adjusted the pressure down a little and encouraged me to keep trying. It really has helped with the feeling of pressure against my face. I'm not sure but I think there is a drawback to turning the pressure down. I'm waking up practically every hour on the hour but going back to sleep. I've had the vpap since 08/13/12. I'm also not sure what the constant waking up is doing to REM and other indicators of quality sleep. On another positive, I'm just starting to feel better during the day and it may be due to using the vpap machine every night. Hang in there. You will begin to feel better as time goes on.

Update -
So my Dr. told me to contact my sleep specialist - my specialist calls me at 9:45pm (13 hours after I left a message) and says....call your Dr. I love the old Abbott and Costello skit but who's on first here?

My specialist believes we need to change some settings but cannot confirm it as that has to come from the Doc - which makes sense, but the Doc wouldn't deal with my questions and sent me back to my specialist who will have to have her supervisor call the Dr. office to get it sorted. Then she has to come out to my house in a few days to change the settings.

So I am now getting a fuller picture of how my particular situation works:
ENT - sent me to a Sleep Clinic (part of same business but also a separate entity) for a sleep study, they in turn sent my report to the ENT who gave me the findings, and then sent the information back to the sleep clinic to fill my scrip...then they farmed me out to a "Specialist" (who works for the DME) because the Sleep Clinic doesn't deal with machines supporting OSA and CSA. Which is ironic as my "Specialist" informed me she isn't sure how to change the settings on my machine and would "have to dig out the manual".

So I am starting to feel as if the medical support team here isn't going to get me where I need to be or at least if they do it will be an unnecessarily painful journey. If I had access to the settings I would just do this myself but I was informed during my orientation that I didn't have access due to insurance compliance reasons.

In the meantime, I am reaching out to some people I know with CPAP's for their doc's info and good ole' Google for other practices to have a plan B ready if this doesn't improve.

Anybody else seen this kind of malarkey or as a newbie this is just my hazing?

dwrek wrote: "
Anybody else seen this kind of malarkey or as a newbie this is just my hazing? "

Having been on this forum since August it seems pretty clear that your experience with your doctor and the DME is more the rule than the exception. It's a disgrace but it is what it is. That's why most of us come here to try to learn from the trials and errors of those who came before us ( and of course Saint Pugsy)

Update - so after wrestling with the DME/Specialist and Sleep Clinic and getting managers involved I was finally after a few days able to get an appt. with my doc. They were unable to pull the data off of my modem as my house is a GSM black hole so I copied my SD card data and emailed it to my DME who sent it over to my Doc.

Long story short, he thinks my pressure is too high but will need a new titration study to get better settings. Also thinks the machine is not working properly (or set properly ) as it gets backwards from my breathing often and doesn't let me slow my breathing as I fall asleep. Based on last time I probably won't get in for a week or two and then a few more days for the DME to get their piece done.

So in the meantime, I debate on whether to stop using it until they can get me adjusted or put it on for an hour or two a night to invariably get awakened when the machine can no longer compensate for my centrals. I'm sure either way my compliance is hosed so I will just fight that battle after they get me adjusted.

Good news is that I seem to have adjusted to wearing the mask and for the few hours I use it every night my AHI goes down to 5 from 36.

More updates to come.

If you're able to sleep and get your mask working in that kind of situation, you're doing pretty well!

I might ask them about getting an ASV. You have to "fail" bipap st to get an ASV - maybe you could argue you have They probably wouldn't buy it, but you never know

It is tough at first.. If you lower the pressure .6cm on both the inspiratory and expiratory pressure and every couple nights increase .2cm until you get to the RX pressure is a easier acclimation ..I have the same model vpap st s9. It's a great machine.
The therapist settings to control your device can easily be found on the internet.

Im a sleep tech and our lab switched to your machine tonight. I would definitely make sure the machine your using is the same as what was used during the study. Most labs usr respironics, which is apples to oranges tothe s9. Personally, im having trouble as we speak because 4 cm on resmed feels like 10 cm on the respironics. Settings are totally different on these machines. Hth