Not Happy Newbie!

[LibbyLou]

Hello - I'm new to CPAP and have been lurking around here for a bit and finally decided to sign up because I'm beyond frustrated with this whole experience so far.

I suspect that maybe I've had issues for years that were just never diagnosed, as I honestly can't remember ever waking up feeling especially refreshed. But in May of 2013, after a bout with strep throat (that I didn't go to the doctor for, not smart, I know), everything just went haywire. Long story short, after a bunch of bloodwork that didn't show much except for a Vitamin D deficiency and a slightly positive ANA (which is now normal), many repeat primary care doctor visits and a visit to a rheumatologist, I finally had a sleep study done in June of 2014. It showed that I had 72 RERAs, zero apneas and zero hypopneas, and I was diagnosed with mild OSA. I dragged my feet on the CPAP for a while, researching other things like silent reflux (I found out I had reflux recently as well, never knew it) and nasal obstructions that could be fixed with Breathe Right strips, etc. but nothing was helping me feel more rested, so I finally went and picked up the CPAP for an auto-titration in February, and was given one for the 90 day insurance compliance period a little over 2 weeks ago.

Which brings me to now, and me hating CPAP. My problem is, I feel like I'm falling asleep with it so much easier than I did at first, and I'm able to stay asleep longer, but I'm still waking up feeling awful. When I first got it, I was having issues with my mouth opening and then that waking me up, but now that even seems to be a lot better. But I still feel like I'm not getting any rest. Granted, I do still wake up a couple times normally during the night, and sometimes toss and turn a bit before falling back to sleep, but it's much better than it was. I just feel like I should FEEL somewhat better by now. Or am I expecting too much, too soon?

I was also referred to a neurologist recently because my primary doctor wanted to rule out something like MS because of symptoms I was having. I had a brain MRI which was clear, he ordered an Evoked Visual Potentials (don't know the results of that yet) and did some other bloodwork, which was all good. The only thing he did was put me on iron supplements because of an extremely low ferritin count.

I'm not sure if I'm just whining here where I know others might commiserate, or what I'm looking for, honestly! I feel like the mask is fitting properly as far as I can tell, although at times I will notice if I try to lay with my face squished too far into the pillow, I will get a little leak and then have to readjust. I wonder if I'm waking up during the night more than I think because of that, and that's keeping me from resting? I don't know, but I'm tired of being tired. If anyone made it this far and wants to share any tips with me, I'm all ears (or eyes, I guess). Not sure what additional info could be helpful. I use the ramp feature when I turn the machine on, and my max pressure is set at 7. My primary care doctor mentioned me seeing an ENT (I saw one who diagnosed the reflux, but didn't care much for him, so she referred me to a different one) who could maybe talk about other options besides CPAP, since she seems to feel like my palate and uvula are a little low? But the pulmonary doctor I saw after my sleep study took a quick glance down my throat and said "Oh, you could drive a truck through there!" The doctors I see, and even the respiratory therapist where I got my CPAP, all look at me and seem shocked that I could have sleep apnea. But shouldn't they all know, being professionals, that it's not necessarily an issue of size?! I have gained about 30 pounds over the past two years, but only since all of this started, not the other way around. Sigh.

Thanks (if anyone read this)!

[Julie]

Hi, welcome. I'm a bit confused because your study apparently found no apneas, only RERAs, yet you're trying to make Cpap (designed for apnea) work... can you explain this any better please?

[LibbyLou]

Hi, welcome. I'm a bit confused because your study apparently found no apneas, only RERAs, yet you're trying to make Cpap (designed for apnea) work... can you explain this any better please?

Thank you for replying!

I have been told that's what I need to do, is try CPAP. That's the ONLY reason I'm trying to make it work. I'm so desperate to feel rested after so long of feeling awful every single morning. I have read so much, been told so many things, seen so many doctors, I'm getting overwhelmed and confused.

[WildMtnHoney]

If your ferritin levels are extremely low, you've got anemia, so of course you're tired!! I think once you get that fixed you'll be feeling at least a little better

[LibbyLou]

If your ferritin levels are extremely low, you've got anemia, so of course you're tired!! I think once you get that fixed you'll be feeling at least a little better

Well, that's kind of what my neurologist thinks could be part of the issue, but then my level was extremely low back in 2013 and my then doctor didn't seem to think had anything to do with anything. And my primary care doctor now doesn't think much of it either. I'm not sure how long it should take before I start to feel any better, if that is indeed the issue. I've only been taking the iron for about a week now.

And with my doctor now telling me she thinks my palate and uvula are low, makes me wonder if I DO in fact need CPAP. I'm sorry if I'm coming across as scatterbrained, but one, I'm tired (always, but it doesn't get easier to handle), and just plain confused by everything.

[archangle]

Do you really have a REMstar SE CPAP machine? Take out the water tank and turn it over and look on the bottom of the blower unit for something like REF 220.

Edit: How to tell what model machine you have:

[Pugsy]

Welcome to the forum.

You might google UARS.... Upper Airway Disturbance Syndrome and see if anything there might pertain to your situation.

Also...can you confirm exactly which machine you are using? The humidifier you have chosen won't work with any 60 series machine and the PR S1 60 Series SE machine is the most basic of entry level machines. No usual data available at all.
If you are unsure about the exact model there should be a 3 digit model number on the bottom of the blower unit...usually preceded by DS or REF. Tell us that model number and we will be able to know exactly which machine you are using.

[LibbyLou]

I forgot to mention that I was also put on Flonase for swelling in my nasal passages, but so far it doesn't seem to be doing much for me. And the ENT I saw who diagnosed me with reflux didn't seem to think my sinuses/nasal passages or reflux had anything to do with the apnea. But then again, I'm not sure he was very thorough.

[ChicagoGranny]

I'm still waking up feeling awful.

Download Sleepyhead, post some images in the forum and discuss it.

[WildMtnHoney]

Has anyone bothered to investigate *why* your ferritin is so low?

Also, are you taking your iron w/vit C? It helps absorption, so when I as anemic, I was always told to take mine w/a small serving of orange juice.

It'll take longer than a week to raise your levels. Are they planning to retest?

[archangle]

I'm still waking up feeling awful.

Download Sleepyhead, post some images in the forum and discuss it.

She lists a PRS1 SE model, which doesn't record much useful data for SleepyHead.

[LibbyLou]

Welcome to the forum.

You might google UARS.... Upper Airway Disturbance Syndrome and see if anything there might pertain to your situation.

Also...can you confirm exactly which machine you are using? The humidifier you have chosen won't work with any 60 series machine and the PR S1 60 Series SE machine is the most basic of entry level machines. No usual data available at all.
If you are unsure about the exact model there should be a 3 digit model number on the bottom of the blower unit...usually preceded by DS or REF. Tell us that model number and we will be able to know exactly which machine you are using.

Do you really have a REMstar SE CPAP machine? Take out the water tank and turn it over and look on the bottom of the blower unit for something like REF 220.

Edit: How to tell what model machine you have:

Sorry, when I scrolled through the list of equipment, I thought that was the correct one. I just looked and the machine says REF 1117254, humidifier REF 1095653.

I have read about UARS, and even mentioned that to the pulmonary doctor, but he didn't really seem to think much of it as a diagnosis.

[LibbyLou]

Has anyone bothered to investigate *why* your ferritin is so low?

Also, are you taking your iron w/vit C? It helps absorption, so when I as anemic, I was always told to take mine w/a small serving of orange juice.

It'll take longer than a week to raise your levels. Are they planning to retest?

Well, nobody up until now has really even cared about my ferritin level, so no, the reason for it being low hasn't been investigated. I was strictly vegan for almost 2 1/2 years before all of this started, not sure if that may have anything to do with why it started. I am assuming they will be retesting, I go back to the neuro in 2 months.

Download Sleepyhead, post some images in the forum and discuss it.

I guess I can't really do that yet, since they took the memory card out and put a modem on it to track everything for 90 days for the insurance.

[Pugsy]

REF 1117254, humidifier REF 1095653.

Not model numbers.

Model number on the blower unit is a 3 digit number on a little sticker on the bottom of the blower. Probably also has an 8 digit number beginning with 2014 or 2015 on it.

[archangle]

I'm looking for a 3 digit number like this if your machine has one:



The number you gave didn't give me much information. It's the label on the bottom of the blower, not the humidifier. Do take out the water tank first, so you don't spill water into the unit.

Does your unit have an 8-segment display like this:



Or a knob and LCD display more like this: