Adjust your own pressure?

[jayman13]

Does anyone adjust the pressure on their own CPAP? I've used a machine for 12+ years. 8 yrs ago, I lost 100 lbs. As the weight went down, I adjusted pressure down until finally, I put the machine in the closet cause I didn't need it anymore. On the bad side, i gained the weight back. On the good side, i had 4 yrs as a normal sized person, enjoyed some activities, etc.

Originally, my machine was set at 16. Weight down, weight up, high of 18, now at 17 I don't want to have another sleep study (cost!) but would like to find an optimal pressure. It feels like 17 might be too much and my chest feels a little sore in the morning, but less and I have headaches sometimes. Mask leaking has always been a problem regardless of model. This is due to my fat face, plus cheeks get squished by the pillow when I lay on my side which is my preferred position.

So, Id like to find the optimum. At visit to doc couple months ago, i told him (practictioner) that i played with pressure setting but she didn't seem too concerned. After visit, i lowered the pressure some and started getting more headaches. So I asked at the health store about a home pulse oximetry test to see if i was getting enough oxygen. This is a no cost thing from the health supplier store for one night as long as doc orders a prescript. Another alternative is to get it online for $125. for 7 nights. There is no prescript needed (they sort of ask you some questions and an "online" doctor prescribes it) They send you the device and at the end of 7 days you sent it back. They take the history off and send you an analysis

Heath store called doc and instead, he ordered a different CPAP for a month. It is a variable pressure thing with a range of 5-20. Supposedly, it adjusts itself to the pressure i need and keeps a record. After a few weeks, the doc reviews the record and finds optimal pressure for me on my regular machine. Problem is, at the low start up pressure, it's like a ramp that lasts until you get to sleep. In my case, the startup, low pressure lasted over 2 hrs and i felt like there wasn't enough air. I could sense the pressure building slightly but not anywhere near the 17 which is was my norm. When I finally got to sleep, I woke up repeatedly with a headache which subsided if I breathed in/out deeply. I wasn't gasping or choking (I don't think) but obviously wasn't getting enough air. At 5:AM, I disconnected the loaner machine and went back to my own This was Wednesday night.

Needless to say, i had a crappy night. Because I wasn't able to connect (played phone tag all day) I didn't get the final word from doc or health store. I used my own machine last night and got a reasonable sleep but still not sure if the pressure is too high. Now is seems there is confusion on doc's order. it was supposed to be a BIPAP with a pressure of 5-25 not a CPAP. Apparently variable CPAPs only come with 5-20. So now they want a higher upper pressure. Health store tech thinks doc (actually it is doctor helper like a nurse practicitioner) don't know what they are doing. It isn't the upper pressure, but the lower pressure I can't take. If they decide I need a BIPAP, not only must there be a sleep study to prescribe it but the cost of another machine looms.

This is not the direction I want to go. Yeah, it should be motivation for me to loose the 100 again since I was able to do it once, but i'm sure others will agree it is easier said than done at my age. (64)

So bottom line, has anybody had experience like this?

[darotem]

As you can see on lot of posts on this forum many people are setting their own pressures. This being said, in order to find the optimal pressure you would need a software and a data capable machine. Since you hsaven't mentioned your machine brand and model but only that its 12 years old I don't think it has this capability. The loaner you are using might have it and you will be able to get this info when you return it. You would need to know what was the pressure that you spent 95% of the night and and set your number accordingly. With an APAP you should set the lower number about two numbers lower than your 95% and the upper two numbers higher than your 95%.

[Wulfman]

Yep. The vast majority of us on this forum are knowledgeable about changing our own pressures and have data-capable machines that tell us how our therapy is working.

Which machine did they give you? Most APAPs have a pressure range of 4 - 20, although I've also seen 3 - 18 and 3 - 20.

If your previous pressure had been 17, and they're giving you that one set 5 - 20, and they honestly BELIEVE it will adjust the pressure to what it needs, they're not very knowledgeable. To be effective, an APAP needs the minimum pressure set very close to where it will take care of almost all of the events during your sleep. Anything too far below that and it takes the machine too long to respond.

If you still have your prescription, you can purchase a data-capable machine (including an APAP/Auto) from online suppliers like https://www.cpap.com

Your profile shows that you registered last November. If you haven't clicked on the lightbulb icon above "Our Wisdom", it's a MUST READ for anyone using this therapy.


Den

[jayman13]

My curent machine is a ResMed S7. Before that I can't remember but it had a manual pressure adjustment. I figured out how to adjust the screw but was just trial an error to lower the pressure after I lost weight and reverse when i gained it back. When it started making noise (not a result of my adjusting), it couldn't be fixed, so I got a new one (Current ResMed). That was back when i had good insurance.

The loaner (actually, i paid $125. for a month rental) is also a ResMed. The model is Autoset II. Per original order earlier this week, doc said low 5 and high 20. There was confusion as to whether doc thought it was CPAP or BIPAP. They assumed it could be set at 5 and 25 but the APAP only goes to 20. When they heard I had problems they wanted to increase the upper pressure to 25.

I finally got them to understand it was the low pressure where I couldn't breate. After lots of communication between doctor (nurse pract) and technician at Air Way Oxygen store, they reset my machine to 12 and 20. From what I hear you say, that may not work and it should be close to what I need. My interpretation of that is near 17. Maybe 15 and 20 would be more realistic?

I'm going to give it a try tonite at 12-20 and see what happens. If it doesn't work, I'll use my own (it's easier to switch while still laying in bed rather than get up, put my glasses on and figure the low and high setting change on the auto set.

The auto set does have a data card and at the end of two weeks, (depending on when i get a sucessful start) they will run a report and send it to my doctor. The idea is to find my optimum pressure so i can set my own machine. (like I couldn't do it myself). Wanna bet they won't tell me what to set it at. Instead, they'll suck a doctor visit (and charge) out of me just to tell me the pressure should be "X" Alternatively, they may say my situation it very difficult and urge me to have another sleep test which they've already suggested and i told them no.

I did read the wisdom but other than the jokes I was pretty familiar with most things (not machine models). I also know about power failure. Fortunately, that has only happened once in the last 10 yrs.

To be completely honest, I am writing a book on sleep apnea. Actually, it is an Ebook for some guy to put on a new website and it will focus on CPAP alternatives. My name won't be on it, but it was on the advance check. (Hey, it's money and I can use it.) Of all the alternatives, the only one I can agree with is loosing weight. My own experience proved this. As a side note, having the weight off had a lot of benefits (even sex was better) and i wish I could do it again. I suppose the throat surgery stuff would work for some people who aren't as fat as me, but I'm alergic to pain.

[Severeena]

I have and I even had to bump up my hubby's pressure as soon as the therapist left our home.
The person running the sleep study only allowed him a pressure of 10 and he was using 17.
ResMed machines are the easiest to adjust.
I talk to the doctor before I do anything though.

[Guest]

For the folks that adjust their own pressures -

Do you prescribe your own medications and freely change your dosing, as well? Why would CPAP be any different? It's still a prescribed setting. Everyone adjusts to CPAP differently, and requires a unique setting. You're physicians should be ashamed of themselves for turning a blind eye to this. That is poor medicine, and potentially dangerous. Everyone wants the quick fix....the diet pill fix. These "diet pill" auto-titrating machines are not nearly as accurate as a formal titration would be.

[DreamStalker]

For the folks that adjust their own pressures -

Do you prescribe your own medications and freely change your dosing, as well? Why would CPAP be any different? It's still a prescribed setting. Everyone adjusts to CPAP differently, and requires a unique setting. You're physicians should be ashamed of themselves for turning a blind eye to this. That is poor medicine, and potentially dangerous. Everyone wants the quick fix....the diet pill fix. These "diet pill" auto-titrating machines are not nearly as accurate as a formal titration would be.

Where did this loony blow in from?

Actually I have changed the dosing for my hypertension meds ... I use a blood pressure monitor. Isn't science wonderful?

[freepostg]

For the folks that adjust their own pressures -

Do you prescribe your own medications and freely change your dosing, as well? Why would CPAP be any different? It's still a prescribed setting. Everyone adjusts to CPAP differently, and requires a unique setting. You're physicians should be ashamed of themselves for turning a blind eye to this. That is poor medicine, and potentially dangerous. Everyone wants the quick fix....the diet pill fix. These "diet pill" auto-titrating machines are not nearly as accurate as a formal titration would be.

He`s baaaaaaaaaaaacccccccck!

[Wulfman]

For the folks that adjust their own pressures -

Do you prescribe your own medications and freely change your dosing, as well? Why would CPAP be any different? It's still a prescribed setting. Everyone adjusts to CPAP differently, and requires a unique setting. You're physicians should be ashamed of themselves for turning a blind eye to this. That is poor medicine, and potentially dangerous. Everyone wants the quick fix....the diet pill fix. These "diet pill" auto-titrating machines are not nearly as accurate as a formal titration would be.

"Poor medicine" is also practiced by clueless doctors prescribing the WRONG pressures from a one-night sleep study/titration. (I speak from experience on this one)

People with diabetes who use insulin, adjust their own medications according to what they eat......and "food" (wrong types) can be deadly to people with diabetes.

It's OUR therapy, pal. We also don't really advocate people changing their pressures without monitoring their therapy with data-capable machines and (preferably) software, but it CAN be done without data.....by how they feel. Studies have been done with this method (by educating the users).

So, take your "Chicken Little" attitude somewhere else. You're a dinosaur.....and you know what happened to the dinosaurs....


Den

[Jason S.]

In all fairness, I think "guest" has a point. IMO, after so many passing years and weight changes, cost withstanding, shouldn't jayman go back for another sleep study? I would. It seems a bit dicey to me to try to "self-medicate" given his time away.

On another note, is this a forum, where ideas and opinions are exchanged, or a self-titrating fan club? Is it my way or the highway? Why is "guest" chastized for his expressing his opinion? He didn't insult anyone, yet is called a "looney" and "chicken little" and asked to leave.

[Guest]

So you know more about sleep medicine and treatment than medical professionals? You know enough to be dangerous.....to yourself. I wish you luck, but next time you "self-medicate" and change your own pressure(s), I hope you don't fall asleep behind the wheel and injure or kill someone as a reult of your irresponsibility.

[Guest]

I guess the disheartening thing is that, for the most part, the folks in the sleep labs and DME Cos. truely care about the people that they educate, test, and serve; and do what they do in order to improve the lives and health of their patient's. So to hear about how miserable the tests are, and how "simple" it is to prescribe and adjust your own treatment really saddens me. If there's one immutable truth I've learned, is that most primary Drs. know nothing about sleep disorders, and are not equiped to troubleshoot, follow and support those patients long term. If most physicans can't adequately manage sleep disorders, how effectively can "patients" be expected to?

[DreamStalker]

Jason

You have not been here long to know that these guests are sleep lab techs who come here to troll when they should be titrating patients. Once you have been here long enough, you will learn why OSA patients end up here on this forum. It is not a self titrating club but rather a club of patients failed by the so-called medical professionals.

[Guest]

That is a good topic.....What could the labs, DMEs, and sleep docs do differently or better? What are your expectations?

[Wulfman]

In all fairness, I think "guest" has a point. IMO, after so many passing years and weight changes, cost withstanding, shouldn't jayman go back for another sleep study? I would. It seems a bit dicey to me to try to "self-medicate" given his time away.

On another note, is this a forum, where ideas and opinions are exchanged, or a self-titrating fan club? Is it my way or the highway? Why is "guest" chastized for his expressing his opinion? He didn't insult anyone, yet is called a "looney" and "chicken little" and asked to leave.

Because he/she/they show up frequently and try to proclaim how "dangerous" AIR is or can be.
As I said in my recent post, "it's OUR therapy". You can do whatever you feel comfortable with. If your insurance will pay for as many sleep studies as you want, then have at it. My opinion is that if you have "garden variety" OSA and have a data-capable machine and the software to monitor your own therapy, you don't "need" future sleep studies UNLESS there are some other issues showing up, such as Restless Leg Syndrome, needs that require Bi-Level therapy, Narcolepsy and many other conditions.

Also, one of the most important things this forum promotes is "education"......about the ins and outs of this therapy and what it's trying to treat.

Stick around for a few years and you'll have a better understanding of what those of us on the forum who HAVE been here for several years, have seen.
New users show up here, looking for information......because they've been poorly treated and kept in the dark by their "medical professionals".


Den