Discouraged with results - new to boards

[sleepjusttodream]

Hello everyone,

Confession - I've been lurking around here quite often since getting the diagnoses of OSA about 3 months ago. I've been using my machine (info below) for over 2 months now and have to admit I am a bit discouraged with the results I'm seeing.

By the time I was referred to a sleep specialist I had been seeing my regular physician regarding my fatigue issues for almost a year. Every bloodtest had been run and I was at the stage where I believed I was having serious mental health issues - I began to question everything - is this all in my head? Am I just lazy? Depressed? It was horrible.

Finally I was referred to a sleep specialist and eventually had a sleep study performed. When I received the results I was both happy and incredibly overwhelmed. Happy that there was, indeed, a physical reason for why I felt so incredibly bad, and overwhelmed at the thought of needing this machine strapped to my face and all the petty vanity that comes with that.

So, here I am 2 months later and not feeling all that much better. There are still a couple days a week that I cannot function, and find that if I "overdo" it one day then I will pay for it the following day. Does this sound familiar? Is it just me?

I've recently switched masks as the first one I tried left sores on my nose, had various leakage points, and was generally not a good fit. Could this have something to do with my less than stellar results?


I guess I should be lucky that this is fixable but I suppose I just expected so much more from treatment. Anyone else out there have this same experience? Will I ever be at 100%? Oh, and I've gained 6 pounds since starting treatment...ugh.

Thanks so much for tolerating my whining

[Pugsy]

Does your machine really look like this one?
https://www.cpap.com/productpage/3 Discontinued model over 5 years ago. No data available on this machine either.

Or this one?
https://www.cpap.com/cpap-machine/respi ... cflex.html
Proper name in the equipment drop down menu (look for PR grouping)
PR System One Plus CPAP with CFlex+
This machine offers no useful data. No way to tell if your mask is leaking and/or affecting therapy. No way to tell if your pressure is adequate and the events are well taken care of.
So no way to tell if your lack of perceived improvement in how you feel is due to problems with cpap therapy or not.
You might want to read this
What to do when you realize your machine is a "Brick" (what we call a machine that doesn't offer full efficacy data. Second blog entry I think.
http://maskarrayed.wordpress.com/

Should you happen to have a full data PR S1 machine...you can use SleepyHead software which I have links for it in my signature.

[robysue]

sleepjusttodream,

Welcome to the forum.

As pugsy points out, the machine you've listed in your signature is a very old and obsolete one. Please click on Respironics Confusing names---a guide for Newbiesto go to a posting with pictures of all the generations of Respirionics machines.

After you determine whether your machine is a PR System One (as seems likely), you then need to determine whether it is a

• System One DS150, which is a very basic brick without even Flex
• System One Plus (DS250), which is a brick with no efficacy data
• System One Pro (DS450), which is a fixed pressure machine that records full efficacy data
• System One Pro with AutoIQ (DS450AutoIQ), which is a fixed pressure machine with a limited number of APAP days for a limited amount of autotitration.
• System One Auto (DS550), which is a full data APAP,
• PR System One REMStar 60 Series Auto CPAP with Heated Humidifier and Heated Tube (DS560TS), which is a newly released System One APAP with an integrated heated hose.

We need you to provide accurate information about your machine so that we can help you better.

If you cannot figure out which of these machines is yours, then you should take the humidfier tank OUT of the machine. And when the humidifier tank is out of the machine, turn the machine over to look for its model number. Somewhere on the back or the side you should find a model number and that will tell you which of these models you have.

Confession - I've been lurking around here quite often since getting the diagnoses of OSA about 3 months ago. I've been using my machine (info below) for over 2 months now and have to admit I am a bit discouraged with the results I'm seeing.

As discouraging as it is, some of us take longer than two months to start seeing results. Particularly if we're having specific adjustment issues to work out.

So, here I am 2 months later and not feeling all that much better. There are still a couple days a week that I cannot function, and find that if I "overdo" it one day then I will pay for it the following day. Does this sound familiar? Is it just me?

Sounds familiar to me. Only it took me about 4 or 5 months to get to the point where I was functioning for 5 days every week. Even now, some 17 months into therapy I can "overdo" one day and pay for it dearly the next.

I've recently switched masks as the first one I tried left sores on my nose, had various leakage points, and was generally not a good fit. Could this have something to do with my less than stellar results?

Yep, this could very well be a major part of your "less than stellar results". An uncomfortable mask that leaves sores on your nose, and also has problems with multiple leaks could easily cause enough sleep fragmentation to make your results less than stellar. Let's hope the new mask is a big improvement. If not, take it back to the DME sooner rather than later. Most mask manufacturers allow returns of masks that don't work out for the first 30 days or so. Take advantage of this fact. And keep in mind that some folks go through 6-12 masks (or more) before finding one that works on their face for their nose.

I guess I should be lucky that this is fixable but I suppose I just expected so much more from treatment. Anyone else out there have this same experience? Will I ever be at 100%? Oh, and I've gained 6 pounds since starting treatment...ugh.

Lots of us get off to a rough start, even rougher than yours if you can believe it. But with perseverance we finally do adjust.

The weight gain, however, seems a bit unusual. Are you sleeping much less restlessly in the sense of moving around in bed at night? Or is it that you are so tired during the daytime that you are not getting your usual amount of exercise?

[DavidCarolina]

Hi,

It may seem like an incredible burden, but the truth is that youre just getting started. It may be that you need to get to your ideal weight also, so all
the effort and hassle can be overwhelming.

But keep reading most of the posts here. This is an incredibly useful resource. Everybody has different unique problems. You have to be your own doctor.
You discover little things that help by trial and error and by science combined.

There are eventually other options too--oxygen, meds, (Im on klonopin), stomach sleeping, more pressure, not eating after dinnertime, etc.

Think of it like you've just gotten started, and the first judgement you can make is at about a year. This condition isnt for people who arent mentally tough, disciplined, and organized.

[Otter]

So, here I am 2 months later and not feeling all that much better. There are still a couple days a week that I cannot function, and find that if I "overdo" it one day then I will pay for it the following day. Does this sound familiar? Is it just me?

I guess I should be lucky that this is fixable but I suppose I just expected so much more from treatment. Anyone else out there have this same experience? Will I ever be at 100%? Oh, and I've gained 6 pounds since starting treatment...ugh.

Eleven months in, I am better, but still nowhere near 100%. I believe I had UARS, if not full blown apnea, when I was in high school, and OSA for at last 13 years before I began treatment. This messed up my sleep badly, and I suppose it's not surprising that it's taking a long time for my body to sort itself out. The slowness of my recovery is frustrating, but the glimmers of hope keep me going. And it certainly beats life (or death) without CPAP.

I've recently switched masks as the first one I tried left sores on my nose, had various leakage points, and was generally not a good fit. Could this have something to do with my less than stellar results?

Absolutely. Getting the mask right is the hardest part of this therapy for most people, but it's also critical. Without a reasonably good seal, the machine can't do its job. And the mask has to be comfortable enough not to disturb your sleep or you're just trading one problem for another.

Thanks so much for tolerating my whining

We understand. CPAP is a mangy bitch and her whole litter of pups. But the dogs can be tamed if you are stubborn enough to keep trying and flexible enough to let go of the things that just aren't going to work.

As the others said, please verify that the machine in your signature is really the model you are using. Hopefully, you've got a more modern machine that gives useful data. If not, you should try to get one. Home CPAP data doesn't come close to polysomnography, but when your therapy isn't working, it's really hard to tell what's going on if you don't have even basic data to look at.

Also, consider switching to text links in your sig instead of pictures. This is a situation when a picture is not worth a thousand words. In fact, it's not even worth five or ten words. The pics are too small to differentiate reliably, and machines with very different capabilities often have the exact same housing. Hence to find out what you're using, we have to click on the pic and go read the model description on cpap.com. It's far easier to just read the name here on the forum.

[rolisrgti06]

I am experiencing weight gain as well. Been on CPAP for a month and have gained 7 pounds despite eating around 2000 calories a day. At my height and weight I should be losing 1 to 2 pounds a week at that level. I have now taken drastic measures and have gone down to 1000 calories a day. I didn't sign up for the weight gain with CPAP. That is precisely the last thing I need right now. On my first follow up, my sleep doctor and I are going to have a long discussion about this. This is not acceptable.

[Drowsy Dancer]

From looking at my data, it took me about six weeks of faithful, consistent use to adjust to the machine preliminarily, and several weeks after that for my numbers to start looking fairly good. Ditching my first mask for nasal pillows was a big help. Mask preference is SO individual--and critical. And ever since then it's been two steps forward, one step back over and over again as I discover more things that I can do to maximize my treatment and improve my health (eliminating some bad sleep habits has been the latest fix).

My doctor warned me one month in, "It's going to take you a long time to come back from the desat[uration]s you were experiencing."

PS where in WV are you? I lived in Lewisburg for a year in the mid-1980's.