Newbie Desperate for General Help - Introduction

[Nash]

Hi everyone! I am new to both the forum and to CPAP machines. I don't currently have insurance and am doing this completely on my own, so any help you could give me would be much appreciated. Unfortunately I found this forum after researching and purchasing my equipment. From what I read here I seem to have chosen pretty good stuff for a reasonable price. I have a Respironics dx500t11 (560HS - REMstar Auto with humidifier & SD card) and a AirFit F10 Large mask. I used a fitting template I found in a .pdf file for the AirFit. I am hoping I get lucky and it fits well without a lot of leaking. The CPAP I purchased has an auto function which I hope can help me to find my correct pressure? 

About myself: I am 50 years old and pretty sure I have had untreated apnea the majority of my adult life. I have been told that I stop breathing in my sleep by others. Recently, after a pretty large weight gain (100 lbs), I wake up about every hour or two with extreme anxiety and a feeling of being smothered. I NEVER sleep for more than a few hours. I used to think this was because I needed to pee. However I recently read an article that suggested that it is actually apnea that wakes you up and the need to pee is secondary. After doing some reading I found that I have many symptoms associated with apnea; depression, fatigue, anxiety, weight gain, low T, and a serious brain fog. I have now found myself spiraling out of control and just getting heavier (now 400 lbs) and more and more incapable of participating in any kind of normal life. At my wits end, and without insurance, I decided to take the chance and buy the equipment. I figured that I would be able to figure out how to use the thing effectively through researching on the internet and then I ran across this great forum. I realize I took a risk purchasing the thing without a professional but I am desperate. At this point it is either fix it myself or just give up.

Now that you know what equipment I have and a bit about my situation, I was hoping some of you might tell me where you think I should go from here. I am pretty good with software. I don't think Sleepyhead would be a problem for me to learn if that is what is needed. Any suggestions you all have would be MUCH appreciated. I have the CPAP, the mask, a bottle of distilled water and a desperate willingness to learn.  Thank you in advance for any help!

One question I have for sure is how do I go about finding my pressure number? Will the auto function on the CPAP help me to find it?

[DeepBreathing]

G'day Nash. Welcome to Apnea Board.

From what you describe it's likely you have obstructive sleep apnea. This is often associated with loud snoring and gasping - does this sound like you?

The need to urinate frequently is a known side effect of apnea and should reduce or disappear completely once you get your treatment dialled in.

#SleepyHead will be essential if you're flying solo on this, so download and install it. It's pretty user-friendly, having been written by a fellow apneac. Once you've been on the hose for a week or so #SleepyHead will show trends which will allow us to give some advice about your settings.

You have a good machine which will more-or-less zero in on your optimal settings. To get best value from it, you will need the clinician manual, which you can request from the link at the top of this page. Make sure you follow the instructions exactly, as there are hundreds of manuals available and it makes life much easier for our elves if you do follow the instructions.

As a start, set your minimum pressure to 7 and the max to 16. These numbers will no doubt change over time, but it's a reasonable place to start. If you find you're being starved of air, bump the minimum up a bit. If you find the pressure is uncomfortable when you first put the mask on, set the ramp to about 10 minutes - this will gradually build the pressure up to the therapeutic pressure. Set the flex to 2 - this may need to change later.

Some people take to CPAP therapy like a fish to water, but for most of us it's a journey. And often the journey is two steps forward, one step back. It's easy to be discouraged, but worth the effort if you can stick with it. The mask is probably the hardest part. Every face is a different size and shape, and there are dozens of different masks on the market. For a lot of people it's trial and error, and most of us have one or more discarded masks in the back of the drawer.

Given your physical condition, it's likely you have one or more other conditions as well as the apnea. If you haven't already done so, get yourself checked out by your GP to rule out things like diabetes and heart / lung conditions.

One of the main factors in CPAP success is having a strong support network. Apnea Board was set up to support fellow apneacs, and we're all here to look out for each other.

[Nash]

G'day DeepBreathing and thanks so much for your quick response! 

"From what you describe it's likely you have obstructive sleep apnea. This is often associated with loud snoring and gasping - does this sound like you?"

I snore so loud that it shakes the walls. And the gasping is out of control. 

"You have a good machine which will more-or-less zero in on your optimal settings. To get best value from it, you will need the clinician manual, which you can request from the link at the top of this page. Make sure you follow the instructions exactly, as there are hundreds of manuals available and it makes life much easier for our elves if you do follow the instructions."

You don't know how much better this makes me feel for you to say it is a good machine. I am very nervous about doing this as it is a large amount of money for me at this time. When I first ordered the machine I downloaded the original manuals from the Philips website. I should be all set there.

"Given your physical condition, it's likely you have one or more other conditions as well as the apnea. If you haven't already done so, get yourself checked out by your GP to rule out things like diabetes and heart / lung conditions."

You are absolutely correct. I am sure I have some other conditions that I did not list. I am definitely going to pay the doctor a visit soon. 

I am going to install SleepyHead now. I will read the manuals and set the values to your specifications. My mask is supposed to arrive tomorrow and then I will give it a shot. Should I bother with the humidifier settings? Or that crazy heated hose? Thanks again for your help, it really does mean the world to me.

[DeepBreathing]

The manuals available on the manufacturer's site don't usually include the clinician manual (unless you are a registered health care worker). They will get you so far, but you really need the clinician manual to get into the guts of your machine (which you will need to do).

I can't recall off hand how the humidifier is set on the REMstar - I think it's just a number from 0 to 5. Set it on a medium setting and adjust it up or down if you feel the need for more or less humid air. It's basically what makes you feel comfortable. The heated hose is used to prevent condensation within the hose, which can be a nuisance. If you are in a humid climate or a room where the ambient temperature is low, then the heated hose is probably a good idea.

[OpalRose]

It's been two years since I've used the system one humidity setting because I have a heated hose, but without searching for my manual, I believe it is a 1 through 5 setting.  

I would start with 2 or 3 and adjust up or down as needed.

[Nash]

I have requested the clinician manual and will read it when it arrives. Thanks for info on humidity levels/heat. Really appreciate you! You too OpalRose!

[Russatrice]

Hi Nash, welcome here and best of luck to you with your new therapy! Hopefully you will be feeling better very soon.

Just a tip for using the face mask: Any oily residue on the skin can make the mask move around and/or leak. It seems to seal better when I wash my face with a cleanser (or soap will do) before bed. For the same reason, people use liners, which can be bought or home made. Lots of info about this on this board if you use the search function here.

I've learned so much from the people here and you will, too. You're all set and off to a good start.

[trish6hundred]

Hi Nash,
WELCOME! to the forum.!
I wish you good luck as you start your CPAP therapy.
Keep in touch and let us know how things go for you on your sleep apnea journey.

[Nash]

Hi Nash, welcome here and best of luck to you with your new therapy! Hopefully you will be feeling better very soon.

Just a tip for using the face mask: Any oily residue on the skin can make the mask move around and/or leak. It seems to seal better when I wash my face with a cleanser (or soap will do) before bed. For the same reason, people use liners, which can be bought or home made. Lots of info about this on this board if you use the search function here.

I've learned so much from the people here and you will, too. You're all set and off to a good start.

Thank you Russatrice I appreciate it. I feel very welcome here and am hoping I can sort all this out. I am not going to lie, it is a little overwhelming. I do think I can get there with some help from you all. 

I will definitely take your advice and keep my face clean before wearing. I noticed that you have the same mask that I have ordered. I am in Chicago and it is on the way from California. Seems to be taking quite a while. I am hoping it gives me a decent fit. It seemed to be the best full mask out there for the money.

Thanks much for the encouragement and advice. I can't wait to see what it is like to not feel like a zombie all the time. 

Hi Nash,

WELCOME! to the forum.!
I wish you good luck as you start your CPAP therapy.
Keep in touch and let us know how things go for you on your sleep apnea journey.

Will do trish6hundred! Thanks for the support!

[Sleeprider]

Nash, you've gotten good advise so far. I know it's a lot to absorb all at once, but getting the machine setup and using it I think will be a big relief. The links in my signature describe how to best organize #Sleepyhead charts, and post them to the forum. We will be glad to help you make sense of them, but you will need to know how to take the screenshots and make them available. When you get a chance, please take a look at those tutorials. Good luck.