CPAPtalk.com

Hey y'all - she said her pressure is 16. That's on the high side.

Kat, I believe your machine is straight CPAP? If so, it has no exhalation relief, meaning that breathing out against your pressure is difficult. A different machine with exhalation relief would be a start.

Also, you might do better with a BiPAP machine. Some people at higher pressures find them more comfortable. Maybe some forum members using BiPAPs could chime in.

And for what it's worth, I wanted to chuck my APAP machine out the window every night for the first month I used it. And no, I didn't get a lot of sleep at first.

Kat, like others have said, if you can ask questions or tell us what is specifically bothering you, then we can help.

Lisa

Ldrakekat wrote: I wanted support. I wanted understanding. I wanted to know that I'm not the only person who has felt this way. Apparently I am. And yes I am angry/tired/emotional and I wanted to vent. And I choose to vent to here because I thought I would find people who understood how I felt. I am brutally honest. I tell it like it is and I don't mince words or tolerate being dumped on, personal attacks, bullied or insulted without giving as good as I get. Especially when I am tired and angry. This lack of sleep is affecting my life, my work and my emotions. All of you who point fingers at me and shake your heads and judge me clearly haven't a clue. And you don't know how lucky you are.

I will also be brutally honest. Change your attitude. You have vented, you have PISSED OFF some of the best people on the board. Suck it up and work on your attitude.
Do we have a clue - you bet we do. Every single one of us uses a cpap machine of some sort and are happy that such simple, and effective therapy exist with no side effects to ensure that we reduced the chances of dying via heart attack, stroke, diabetes and the chance of getting dementia. Be glad and praise the god you worship that you were diagnosed before some of the symptoms starting destroying your life.

I help look after my mother who is in a wheel chair and has dementia due to strokes, all you have to do is figure out how to make this simple non invasive therapy.

You will not get any help from me until you apologize to the board. Act like a two year old and you will get put into time out.

Pugsy wrote:Do you want help making this work?
BTW would you look at the machine you have chose in your profile and see if it looks like your machine.
The machine you have chosen has been discontinued since pre 2007 unless you didn't get it from a DME or normal supplier.

My machine is a REMstar Pro C-Flex+, but I couldn't find an option for that. It has a built in humidifier. It's actually 2 machines that can be taken apart and I've just learned by looking at the info that the humidifer is heated. Which would have been nice if they told me that at the doctors office. sigh. Frankly I wanted nothing to do with this machine and did just what I was told to do. Which was, "don't touch the dials it's been set up for you." Someone mentioned something about ramp and I see there's a ramp button, but the manuel doesn't tell me what it's for. The manuel just says, "when the airflow is on, this button allows you to activate or restart the ramp function." I don't know what that is. What is the ramp function? Thank you for being helpful Pugsy.

Ldrakekat wrote:

Pugsy wrote:Do you want help making this work?
BTW would you look at the machine you have chose in your profile and see if it looks like your machine.
The machine you have chosen has been discontinued since pre 2007 unless you didn't get it from a DME or normal supplier.

My machine is a REMstar Pro C-Flex+, but I couldn't find an option for that. It has a built in humidifier. It's actually 2 machines that can be taken apart and I've just learned by looking at the info that the humidifer is heated. Which would have been nice if they told me that at the doctors office. sigh. Frankly I wanted nothing to do with this machine and did just what I was told to do. Which was, "don't touch the dials it's been set up for you." Someone mentioned something about ramp and I see there's a ramp button, but the manuel doesn't tell me what it's for. The manuel just says, "when the airflow is on, this button allows you to activate or restart the ramp function." I don't know what that is. What is the ramp function? Thank you for being helpful Pugsy.

The ramp feature lowers the initial pressure for usually the first 20 or 30 minutes, so it allows the patient to fall asleep with a more comfortable pressure. Then it 'ramps up' the pressure after that time when hopefully the patient is asleep.

As LoneStar said, 16 is quite high. If you're willing, you can learn how to change the pressures on your machine and you can lower it to a more comfortable pressure, however that could also compromise therapy. For some reason, most in the sleep industry tend to be useless when it comes to patient care. You've got to take charge of your own therapy and unfortunately cannot count on your own doctor. Good sleep docs are rare indeed. They also don't like anyone changing their own pressure, but myself and many others do it anyway because if we waited on our doctors, we'd be dead by the time they helped us out.

Ramp is a feature that allows you to start with your pressure lower and then it "ramps" up over a period of 30-45 minutes to full pressure. Ramp helps especially when you are new to therapy. It is designed to allow you to get to sleep before reaching full pressure. Some folks find that ramping helps them, others don't.

Your machine DOES have exhalation relief - that's what the FLEX is. You need to get a copy of the clinician's manual for the machine to learn how to set it. Folks here that use that machine may be able to .pdf you a copy.

With patience, you can do a search here for information on changing or setting your FLEX setting and also the ramp feature.

Oh, and as you've discovered, most doctors don't have a clue about CPAP machines and can't help you. If you got your machine at a DME (medical equipment store), well some of them are helpful and others are not. This forum is the best place to learn about your machine/mask and how to "conquer" them both.

Lisa

Madalot wrote:

Pugsy wrote:You may not realize it but there is a reason that Madalot has that ID... Mad-a-lot. She understands completely your frustrations as do everyone else here.

Thanks for supporting me in this, Pugsy. I appreciate it. I thought I was being pretty supportive of the OP. In my situation (which I realize OP isn't familiar with so I'm not holding it against her) -- her comments were pretty hurtful to me as well.

I am sorry. I did not mean to be hurtful to you. You asked be an honest and genuine question without condemnation. I did not intend for my answer to hurt your feelings. I dunno, maybe I wouldn't have been so abrupt if I didn't feel under attack by many of the other posters. But, your question did not make me feel that way and so I am genuinely sorry if I've hurt your feelings. It was unintentional.

I am betting you have this new machine.
https://www.cpap.com/cpap-machine/respi ... -plus.html

You probably just noticed the Remstar part. It happens all the time. No big deal. I had to ask because some people are using older equipment from maybe friend or other family member.
From the equipment list in your profile look for PR System One Remstar Pro Cpap with CFlex.
Humidifier is also... PR System one Heated Humidifier.

It really is a good machine and with some education about its functions it won't seem so foreign to you.

Ramp is a way to start out at lower pressures and ease up to your prescribed pressure. And yes, 16 cm is like breathing into a wind tunnel. And yes, it does make it extremely hard to keep the mask from flying off your face.

How about we get you a manual that describes your machines features in better detail? I know you don't want to have to go down this road but we must. I don't want to tell you to change anything. For right now you need to learn about the 2 comfort features on your machine and maybe use them to help you get used to this machine.
Ramp is one and CFlex is another.
CFlex is exhale relief...so that it isn't quite so much like exhaling against a tornado. There are 3 settings available.
I usually suggest that people start with the middle setting. There is even a Demo feature to test them all if your supplier hasn't locked you out of that and they shouldn't have. It is strictly for your comfort and they have done a disservice to you if they have.

Give me a couple of minutes and I will send you a private message with a link to get the provider manual. This manual is different from the user manual you have now. The provider manual explains things more and even tells you how to change things like ramp and CFlex among others.

Regarding ramp...while it is nice it comes with a price...hard to adjust the mask for 16 cm of pressure if ramp starts out at much lower pressure. For now.. I would concentrate on just getting used to the machine, mask and pressure.
Deal with leaks and such later. Take one challenge at a time.

It is hard work, not easy by any means and full of frustrations. It is what it is though. The alternatives aren't so hot either.

Despite what I said about the medical community, the one really good thing your doctor did is discover that you have sleep apnea...even if you don't feel it yet.

Oxygen desats to 80% is pretty bad. That alone is putting a huge stress on your heart and can lead to heart problems, stroke, loss of memory, dementia, and I've heard of links to alzheimers. Sleep apnea is not just about not sleeping well. It's about not breathing. Or should I say, it's about suffocating while you sleep. You're suffocating 30 times per hour. That is once every 2 minutes, and an apnea can be anywhere from 10 seconds short to 30 seconds to a minute, and even up to 2 minutes long. That's 30 times per hour that you're not breathing and stressing your body out. Sleep apnea is a slow, silent killer.

So, while conciously the machine is stressing you out and you hate it, without it far more serious stress is happening inside that will kill you and your body hates what is happening even more.

I sincerely hope you'll try and find a way to live with it before the serious effects start hitting you.

Your machine may have a couple of nice features that aren't in the manual it shipped with, but would be described on a sheet of paper that may have been included with it. These are included in my unit, which displays "v2.50" on its screen when powering up after being unplugged. One is silent mode, which reduces the number of normal situations that would cause it to beep. The other that I use is humidifier preheat, which is activated by holding down the knob for five seconds when the selected menu option is "therapy". This will preheat the humidifier for up to 30 minutes. The insert also mentions more configurability for ramp in the basic non-provider setup menu.

Ldrakekat,

You really need to step back, calm down and get your anger/ feelings in check. We all understand how you are feeling we have been there and there are those who are still having troubles and struggles. It is OK to be angry but direct that anger in a different way. There are great people here with LOTS of great advice and help which will only benefit you.

SO please, for your health, step back and calm down, then let us help you figure out what needs to be done.

Kat -

You are getting great info from Pugsy and the others here.... I however do not use your type of machine.... but probably have some of the same features.... the ramp function is awesome. My pressure isn't as high as yours.

Its overwhelming at first.... I'm only 29 (will be 30 in Dec) and I went into my sleep study just to humor my husband. But it turned out I'm pretty bad... Desat of 72% as my lowest... and my AHI's off the chart in REM. It was affecting my work, being tired all the time.... I'm kinda doing this prior to surgery as well, I'm having gastric bypass in May. So I kinda understand, however its not a requirement

Pugsy has helped me alot with being a newbie as well....

You can do it!

See if CFLEX is enabled on your machine.

Turn the knob until it says CFLEX or Flex. Push in on the knob. It should show you some choices on the FLEX setting. If you turn it to a higher setting, you may get some relief on exhaling.

This is one of the settings the user can adjust herself.

Unfortunately, the DME can lock you out of this setting, so you may not be able to change it.

Although, if you want to, you can go into the "secret" settings and change this and other things if you've been locked out by the DME.

Kat,
We have all been where you are...and we do understand. So you have gotten the venting part out....Now lets move on to what this group can do to help make your therapy a success.

I am curious as to what surgery you are having that required sleep study. To me only one comes to mind weightloss surgery. I have been that route too if that is the path you are on.

The good thing is you found this group. There is an awesome collection of people with tons of experience that I truly believe that can find a solution to any problem you have related to your sleep issues.

I think you got some good tips to start with. Pad-a-cheek liner or use an old t-shirt for now. It works well. Keep in mind that most people here go through many different masks until they find the one that works the best.

I would be considered a rarity because the first two masks I tried work great. But don't discourage. The key here is patience.

I had to take a few days off from work after I my sleep study and titration study as well as after I started on CPAP. I was terrible sore and exhausted. I think my body said "thank god!!! She finally got the message!! We are out for a few days so we can actually REST!"

This is a huge learning curve and adjustment period. Learning to sleep with air blowing in your face and hardware on your face and rolling over with this darn hose!

I would first start with the liners and working on getting the mask to fit comfortably. Wear the mask during the day before you go to bed. I use to put mine on about 30 minutes before I went to sleep and just sit and read or watch TV. Now when I put my mask on...it tells my body sleep time...I am out within a few minutes.

Just be patient...it takes time and this too shall pass...and before you know you will be a pro-CPAPer.

Ldrakekat wrote:

Madalot wrote:Why are you posting here? If you want help to make it work, you couldn't find a better place with information, knowledge and support. The people here can help you get through this.

I wanted support. I wanted understanding. I wanted to know that I'm not the only person who has felt this way. Apparently I am. And yes I am angry/tired/emotional and I wanted to vent. And I choose to vent to here because I thought I would find people who understood how I felt. I am brutally honest. I tell it like it is and I don't mince words or tolerate being dumped on, personal attacks, bullied or insulted without giving as good as I get. Especially when I am tired and angry. This lack of sleep is affecting my life, my work and my emotions. All of you who point fingers at me and shake your heads and judge me clearly haven't a clue. And you don't know how lucky you are.

Eh, fellow CPAP machines. Why bother trying to help this idiot because all he is looking for is attention. If he would think positive instead bitching all the time he might get to like it.

Cuda wrote:When did this forum have no rules of conduct? If unregistered users can come on here with that mouth does that mean anything goes from now on? We all can use any language we want? Just wondering.

To some extent, yes. If the posts are too 'over the line' peer pressure sets in and the poster either becomes more civil in their postings, or they stand a high probability of being banned. Maybe you remember several months ago a poster called EricinNC and the vitriolic messages he was posting about the S9 machine. He also got off on some tangents and directed two or three very caustic messages directly at me. An email to the board owner requesting a review of his posts got him banned very quickly.

So yes, we are quite free to freely express ourselves, but we are not free to indiscriminately engage in a free-for-all of postings.