Cats, menopause and CPAP

lynninnj wrote: ↑

Thu Oct 20, 2022 7:16 am

Get your ex out of your head. He isn’t helping you now.

I'm angry because he really needed it and still needs it, but because he wasn't savvy enough to self advocate and didn't know anything about this equipment (back before we had YouTube and all the Internet resources like this one) he was failed by the medical system that just wanted to bill for an expensive piece of equipment. He was basically told that it's his fault and he has to get used to it or else.

And when I think about patients like my mom who also isn't as savvy it makes me really angry. If the therapist didn't have settings for me, he should have followed up to find out what they were. This is people's health and lives that they're messing with. I work in a pharma-related field, and I'm really passionate about people getting the right care and the right education.

This pisses me off. People shouldn't have to be relying on patient networks for basic therapy info.

I called the respiratory therapist at 7:20 a.m. to let him know I think the machine is not working right. we'll see if he calls back.

KittyMom22 wrote: ↑

Thu Oct 20, 2022 7:34 am

lynninnj wrote: ↑

Thu Oct 20, 2022 7:16 am

Get your ex out of your head. He isn’t helping you now.

I'm angry because he really needed it and still needs it, but because he wasn't savvy enough to self advocate and didn't know anything about this equipment (back before we had YouTube and all the Internet resources like this one) he was failed by the medical system that just wanted to bill for an expensive piece of equipment. He was basically told that it's his fault and he has to get used to it or else.

And when I think about patients like my mom who also isn't as savvy it makes me really angry. I think these medical companies are not paying attention at all. If that therapist didn't have settings for me, he should have followed up to find out what they were. This is people's health and lives that they're messing with. I work in a pharma-related field so I'm really passionate about people getting the right care and the right education.

This pisses me off. People shouldn't have to be relying on patient networks for basic therapy info.

I called the respiratory therapist at 7:20 a.m. to let him know I think the machine is not working right. we'll see if he calls back.

I understand the passion behind where you are coming from now. Nobody here will disagree that the system mostly sucks where OSA/Papping is concerned. This can be expanded more broadly to other forms of healthcare as well like your mom.

How much sleep DID you manage to get before your rude awakening? What did the machine say was your AHI?

I don't want to sound contrary but you are expressing what many first time folks experience with papping.

It is imperative that you are as determined to make this work FOR YOU and be your own advocate. Maybe once you figure your own new situation you can help him out, or help others here. If you make up your mind that you can't do this or that you can do this, either way you will be right. It's up to you to choose and be open to support. One by one you check off the boxes until you make this work. The DME guy will prob say there is nothing wrong with the machine and there probably is not.

Please, let us help you. I tell other pappers I know to come here to learn because there is a wealth of info here. Be open to it and you WILL do this. Expect a few bumps but you will get there.

All the machine says is that I used it for X hours and the mask fit was good. The app gives similar info. There's nothing labeled AHI on the output.

I thought the respiratory therapist was going to explain things to me. All he did was set the machine up.

After much effort, I found my script online and it does say "5-20", so I left a message for the doc to call me.

KittyMom22 wrote: ↑

Thu Oct 20, 2022 8:39 am

All the machine says is that I used it for X hours and the mask fit was good. The app gives similar info. There's nothing labeled API on the output.

That's the default from factory setting for what the sleep report shows.
There is a more detailed (by a little bit) sleep report available but you have to make a change to a setting to get it to show up.

Explained in the clinical manual
https://media.resmed.com/sites/3/202106 ... ER-ENG.pdf

Patient View (setting in the menu) must be changed from the default "Simple" to "Advanced"

Thank you. My AHI last night was 0.5. I used the machine for 5.5 hours.

I am unable to access my original sleep study results but I recall being told I had 8 interruptions per hour, which is mild.

Which is why, honestly, I can take it or leave it. I don't feel this is life-threatening. There are other options.

Oh and the resp therapist put the SD card in yesterday.

chunkyfrog wrote: ↑

Wed Oct 19, 2022 10:44 am

Before cpap, I snored so loudly, it scared the bejeebers out of the cat.
That was a couple cats ago.
The current cat curls up next to me while I'm sleeping.
She avoids my arms because they move too much.

OMG that's too funny!

KittyMom22 wrote: ↑

Thu Oct 20, 2022 8:52 am

Thank you. My AHI last night was 0.5. I used the machine for 5.5 hours.

I am unable to access my original sleep study results but I recall being told I had 8 interruptions per hour, which is mild.

Which is why, honestly, I can take it or leave it. I don't feel this is life-threatening. There are other options.

Oh and the resp therapist put the SD card in yesterday.

Excellent.

It sounds like you found the clinical settings? It helps to have control over your own destiny.

I’m not gonna be the one to tell you that eight AHI is no big deal. If you normally sleep, let’s say seven hours, that is like having someone poking you to wake you up a total of 56 times per night. That doesn’t even touch on the oxygen desaturation and what the low o2 levels do to your organs.

Last night, despite the alarming wakeup, you can count on one hand how many times you went into apnea.

at some point, it will be helpful to take the SD card out of your machine and upload it. I know most of the long time posters prefer oscar which is a separate software which is an option. I prefer sleephq.com because I find it easier to post results and can upload before I leave the house and look at it later from the office. (see my last post on pressure change thread for example of this or click someones sleephq link.) this allows us to look closely at your settings, your leaks, your apnea events, even down to every single breath. If you were concerned about privacy issues with sleep HQ, I suggest using a variation of your name, and not necessarily your real name.

that said, you may not see this as having a successful night of sleep, but there are some posters who would love to have five hours uninterrupted with two or three events.

I find that if I have the mask on and plugged in and then tried to talk it hurts my throat. you may have had your mouth open when your rude awakening occurred and there are people here who can help you with that.

You can figure this out. Check off one box at a time like you are doing.

I'm not complaining about the results but I'm also thinking that 20 seems extreme based on what I'm reading. So if we can achieve similar results at a lower setting I would appreciate that.

Because waking up like you're falling out of an airplane is pretty dramatic.

At the VERY LEAST someone should have explained, "Hey this is going to start low and then increase pressure as you sleep. If you wake up suddenly feeling like you're falling out of an airplane, don't panic. It's normal."

KittyMom22 wrote: ↑

Thu Oct 20, 2022 9:51 am

At the VERY LEAST someone should have explained, "Hey this is going to start low and then increase pressure as you sleep. If you wake up suddenly feeling like you're falling out of an airplane, don't panic. It's normal."

welcome to the world of sleep apnea!

yeah, we are really going to need to see some oscar charts so that we can make some recommendations. get the software and post some charts.

your machine isn't out of control. it's reacting to the events you have during the night. it increases pressure then it falls back to the minimum, in your case 5. your settings may not be right for you, but in order to know where to go, need to see what the data shows.

good luck!

The wide open setting 5 -20 forces your machine to "chase" apneas and therefore have a higher pressure than you might otherwise need, because it doesn't respond quickly to apneas and they grow worse over the time it takes the algorithm to calculate what to do. Ideally the settings should be such that it PREVENTS apneas rather than TREATS them once they are already happening. That's why dialing in the settings is the next step, and to do that we need data.

5.5 hours your first night may not feel great to you, but you're way ahead of many of us in our first nights. It took me about 1 month to get to sleep more than 4 hours without interruptions.

4. I was pretty sure that Mom moving in would be the final nail in the coffin of any hope for a post-divorce romance

HINT: Don't wear your CPAP to dinner.

To be clear - it's the LOW setting that does the work... say from 5 to... teens, the max setting doesn't ever rise but if set too low, can 'cap' the min. when that wants to go higher, so if we need more pressure help, we raise the min. (to e.g. 7 or 10 etc).

KittyMom22 wrote: ↑

Thu Oct 20, 2022 9:47 am

I'm not complaining about the results but I'm also thinking that 20 seems extreme based on what I'm reading. So if we can achieve similar results at a lower setting I would appreciate that.

Because waking up like you're falling out of an airplane is pretty dramatic.

At the VERY LEAST someone should have explained, "Hey this is going to start low and then increase pressure as you sleep. If you wake up suddenly feeling like you're falling out of an airplane, don't panic. It's normal."

Don’t panic, it’s normal.

Too late, huh?

You may wake up feeling like you have an alien strapped to your face and want to rip it off and throw it across the room. (You’ve been warned).

Some of this is mask fit issues that someone here can help with. You probably jostled it and the leak woke you.

You may be surprised when you see your own data. It’s highly unlikely in my limited experience that you hit the max 20 settings. With data we can help you tweak ramp time and settings as you learn what works and doesn’t. I’m actually really impressed you got 5.5 and .5 AHI.

When you get time try the mask on with air coming thru and try to talk. (maybe someone with a full mask can better guide you. ) Maybe not talk. During the day you should work on paying attention to where your tongue is on the roof of the mouth. ((can someone please help explain what I am trying to say?))

I find it’s very uncomfy to have my mouth open/speaking with air pressure behind it. If you experience it while awake you will be able to better handle when asleep. This may be different than when the mask moves and you’re getting leaks. Teasing out whether its the nasal or oral part of the mask that is leaking will help you address it. My nasal cushion leaks a fair bit on some nights but not drastically. Lanolin on the nose helps create a better/tacky seal. Sorry I can’t add more wrt the oral part of the mask.

KittyMom22 wrote: ↑

Thu Oct 20, 2022 7:34 am

lynninnj wrote: ↑

Thu Oct 20, 2022 7:16 am

Get your ex out of your head. He isn’t helping you now.

I'm angry because he really needed it and still needs it, but because he wasn't savvy enough to self advocate and didn't know anything about this equipment (back before we had YouTube and all the Internet resources like this one) he was failed by the medical system that just wanted to bill for an expensive piece of equipment. He was basically told that it's his fault and he has to get used to it or else.

Been there, done that, and have the scars.

There is a presumption among many doctors (and not just sleep doctors) that patients are somehow "easier" to treat the less they know about their conditions and their treatments. My guess is that your ex was given what we used to call a "brick" around here: A CPAP machine that recorded no data other than usage. So even if he had known what to do, he would have been stymied at trying to figure out how to make this crazy therapy work for him instead of adding aggravation and nighttime agony to his life.

And when I think about patients like my mom who also isn't as savvy it makes me really angry.

Your anger is both justified and shared by many of us here at CPAP.

If the therapist didn't have settings for me, he should have followed up to find out what they were.

Did you have a so-called titration study where they had you in the lab and on a CPAP machine while a tech was responsible for increasing the pressure based on what the tech was seeing in all the data gathered by the belts, the EEG, the flow rate into your lungs, etc?

The reason I ask is this: It has become an accepted practice to use a wide-open APAP in the patient's home for several weeks instead of a formal titration study in the lab. The rationale is multi-pronged:

• people don't sleep well in the lab
• one night's data might not be representative of how a person responds to CPAP
• people are more likely to sleep half-way decently in their own beds
• using an APAP over several weeks to titrate the patient provides multiple weeks of data to use for deciding on the final recommended settings.

In other words, the idea is that a few weeks of data on the machine is more likely to tell the doctor how much pressure you actually need than a one night lab study will. Typically after a few weeks, the data is read and if the AHI is nice and low, the minimum pressure setting is usually set to just a bit below the 95% pressure level (or sometimes the min will be set right around the median pressure level). That will typically mean the machine does not need to do rapid, significant pressure increases when breathing patterns that indicate the airway is in danger of collapsing are present in the wave flow.

Now please don't think I'm defending the tech who left you hanging: If the idea is that your sleep doc wants to use your APAP to do the titration in your home instead of making you come to the lab, the tech should have told you that. The tech should also have told you that the machine was using the factory defaults, and the tech should have set it up so that you could see your own AHI.

I called the respiratory therapist at 7:20 a.m. to let him know I think the machine is not working right. we'll see if he calls back.

You will be told the machine is working correctly.

And there's no reason to believe that it's not working correctly.

I know that you're concerned about being woken up by what felt like a hurricane blowing through the mask. (Been there, done that, and have the scars---so I know exactly what you mean.)

But until someone looks at the data recorded by your APAP, no-one will know why the machine chose to increase the pressure and no-one will know how fast and how much the pressure increased before it woke you up.

It's irritating to be told this, but the best thing to do when the machine wakes you up and it feels like a hurricane, is to just turn the machine off and then back on. That will reset the pressure back to the minimum settings and end the hurricane. And that should allow you to get back to sleep, hopefully in not too long of a time.

KittyMom22 wrote: ↑

Thu Oct 20, 2022 9:47 am

I'm not complaining about the results but I'm also thinking that 20 seems extreme based on what I'm reading. So if we can achieve similar results at a lower setting I would appreciate that.

Because waking up like you're falling out of an airplane is pretty dramatic.

Until you actually look at the data, you don't know if your machine ever got to 20cm.

When you got into the advanced menu on your machine, there should have been a 95% pressure reading. Do you recall what that number was?

And either downloading your full detailed data into OSCAR or uploading it to SleepHQ would give you a much better picture of why the machine used the pressure that it did during the night.