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[Pressure] You CAN Adjust your own CPAP Pressure
#81
RDI = respiratory disturbance index
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#82
Toby6698,
No one likes to read long posts, so will try to summarize my experience.

May 2014 to October 2014.

This is how long I had to wait from first landing in an ER not being able to catch my breath, to getting a sleep study done, to seeing a sleep doctor, and then being sent to a DME for CPAP and mask.

Within that 5 months time, my BP was through the roof (160/90), my anxiety level was high, didn't sleep more than 2 hours a night. Had to take an early retirement because I could not function. Apparently, the Sleep Center, my Doctor, or the Respitory Therapist and DME didn't seem in any hurry to treat me!

When I look back at the experience, I tend to get a bit angry because I was treated like a child by the sleep clinic and the Respiratory Therapists. Their attitude is: Just do as we say, we know best, and don't ask questions. Dealing with my Doctor and DME was much the same.

I was diagnosed with Severe S.A. with an AHI of 36.

My sleep doctor sent me off to DME with a script for an Auto CPAP (after practically begging him for an auto machine instead of a straight CPAP), but he perscribed a wide open setting of 4-20.

It was during this time, I found this Forum, and learned how to narrow my pressure range and set a comfort setting for exhale pressure, which I needed, and DME never mentioned it.

My Doctor seemed ok with me adjusting my own pressure when he saw that my AHI was consistently <1, but the Respiratory Therapist at the DME had a "fit". They wanted me to stay at a setting of 4-20. I have found the DME to be incompetent, and only caring about money, not the patient.

I don't believe that we blindly give advice, and always tell the patient to see the Doctor if they are experiencing other medical issues.

I too, hope you will stick around; we need medical professional that take the time to understand the patient's point of view.

This Forum is about patient empowerment!





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#83
Many of us were prescribed auto CPAPs and instructed to self-titrate. I'm sure I am not alone in receiving that prescription. It's not for everyone, but it made me successful with the therapy, and the forums are a good informal source of information for patients like me to consider, along with other research and our doctors.

An interesting study would be to compare the efficacy of treatment between a cohort of patients that are involved in their therapy and make adjustments on their own, and a group that relies solely on the physician, DME and RT to provide expertise. I wonder which group is more likely to succeed in optimum therapy as measured by compliance, AHI, RDI and qualitative sleep scores>
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#84
(10-02-2015, 01:43 AM)big_dave Wrote: Not to mention, it may be difficult to find a doctor willing to work with someone who has been using self-treatment.

You are in Eugene... you might consider giving OHSU a try, they actually have a very good program
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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#85
(10-01-2015, 10:19 PM)Toby6698 Wrote: I guess if I had created paragraph's in my writing that you would have read far enough and read about the experience I had encountered with a patient who wanted me to increase his pressures or show him how to do it, without a prescription. Even I felt that the patient was correct in his thinking and that a pressure increase was probably all that he needed. But, I am so glad that I didn't give in to his requests and begging to show him how to adjust the machine, because if I had of, he probably would've delayed going to see his doctor even longer and would not have had the small cell malignant tumor in his esophagus that was causing the increased blockage in his airway as soon as he did. A rare event, but just trying to say that it is not always wise to assume what has or is causing the changes in your body or with sleep apnea. This specific event made a definite believer out of me.

Perhaps that saved his life in this case.

However, something like 50% of the CPAP patients give up. I think frustration with the system is a large part of the problem. They're just not getting the help they need from the medical professionals. Even if they have a fully data capable machine, most of the doctors don't look at the therapy data and make adjustments. They suggest another sleep study, which is probably unnecessary, and probably won't help as much as reading the home therapy data and making adjustments.

The patients decide they're getting screwed and they probably are. CPAP could be a lifesaving technology for them, but the system is so concerned with their prerogatives that the patient ends up not using the life saving treatment.
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#86
(10-02-2015, 02:02 AM)Toby6698 Wrote: Just because you have never witnessed a person having a heart attack, CO2 induced coma, cardiac arrhythmias and other issues caused by incorrect pressures, including death, doesn't mean it's not real and doesn't happen. These issues happen more frequently than you know, especially if you are not around the CPAP life and hundreds of different users on a regular basis. Any of those who have warned against doing this, are probably doing so because they have seen it happen 1st hand, not because they are ranting or worried about losing money over it.....a very critical judgment.

First, Toby, many of the things that you have said the DMEs provide free of charge have never been offerred to many of us nor were we made aware of them in our early days with CPAP therapy. In fact during my first 2 years of therapy(?). I was never able to speak to an RT with a question concerning CPAP therapy and I tried many times. First, I could never contact one directly and they almost never returned calls when I left a message. Second, I got some very misleading information from the head RT who claimed to be a CPAPer.

What I am trying to say is that not all medical people involved in the treatment of sleep apnea have the lofty goals that you seem to have and some are just downright stupid.

I picked the wrong post to reply to and left the wrong paragraph in my reply but I would like to ask a question about one of the statements that you made. I am being curious not sarcastic . How would too high of a therapeutic pressure cause a heart attack?

I was sent for sleep testing because it was felt that my heart arrythmia was caused by sleep apnea not the other way around.

Best Regards,

PaytonA
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#87
(10-02-2015, 09:08 AM)Sleeprider Wrote: Many of us were prescribed auto CPAPs and instructed to self-titrate. I'm sure I am not alone in receiving that prescription.

You are not. I also had a sleep doctor who trusted me to fine-tune my pressure settings because he understood that the professionals don't always get it right the first time, and that pressure needs can and do change over time, AND that when a patient has learned what to do and how to do it safely, there is no more risk to that patient adjusting their own pressure than there would be if an MD, RT, or DME rep had done it.

In fact if you are a typical KP patient you will likely go through home sleep testing (4 channels only), diagnosis, and titration and receive your machine without ever seeing a sleep doctor. Not even the doctor who signed off on your prescribed pressure(s). Whether you regard this as adequate patient care or not, you as the patient are really set up to have to take care of yourself with your CPAP therapy.
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#88
(10-02-2015, 12:20 AM)Toby6698 Wrote: Yes, the S10 is a very nice machine. I hope that is working well for you.
Thanks , working well for me as the S9 AutoSet before it
AHI below 0.5 with over 7 hours sleep each night, what can you ask for more ...
wasn't like that at the start, things only improved when learned about computers and internet oldman and finding this wonderful community

There is no S10, AirSense 10 or A10 for short
Not all AirSense 10 models are nice, AirSense 10 CPAP is entry level machine
Not so nice to dispense this type machine to gullible patients, just for the lousy DME to make few extra $$$, they get paid the same money from insurance for any machine in the series (billing code E0601), whether bottom end or top end

I recommend, everyone should be given an AutoSet, an AutoSet can be used either in fixed pressure mode or auto adjusting mode ...
2 machines in 1, win win situation but suppose not from the lousy DME perspective

As for patients with heart disease problems ... not likely to be surfing around here, more likely under the care of their own team of doctors

[Image: Tea-Pot.jpg]


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#89
KP = Kaiser Permanente
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#90
(10-02-2015, 03:35 PM)surferdude2 Wrote: KP = Kaiser Permanente

Thanks Dude -- I wasn't sure if I should spell it out.
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