Blindsided by the machine

[tamower]

Please weigh in on my experience, I'm very disheartened.

My doctor prescribed a sleep study because I was waking up at night to pee and sometimes my heart would start pounding furiously afterward. These episodes disappeared almost completely when I stopped having the occasional cigarette and quit vaping altogether. Other than a few times when I couldn't get back to sleep quickly after an episode, I have never felt excessively tired in the daytime. I do not nap and don't get sleepy driving. Most of the time, I feel rested when I wake. My kids tell me snoring is not a big issue with me.

Around two months after the doctor gave the prescription, I received a flimsy home sleep kit that I went ahead and attached to myself and bluetoothed through my phone. Thursday last, a girl at my doctor's office called me, said I had sleep apnea and would be getting a call from someone about a cpap machine. I asked the girl what the sleep test showed but she admitted she didn't really know. She sent me the sleep report and what I got from it was that I was significantly desaturating at night.

Yesterday (Friday), the DME company called me to pick up the cpap. Knowing nothing about this issue or its associated hardware, I went in. I wouldn't know a cpap mask from a slingshot and so chose one randomly from a rack on the wall. The girl showed me how to turn on the machine and put the mask on me. I recoiled violently and could keep it on only a few seconds. The girl clucked at me and then focused on vague threats about compliance. I had to sign all these papers promising I would wear the machine or else. I was extremely startled to find out that this machine phones home to my insurance company.

The DME lady did not give me a clue as to what would happen next. I googled how to manage this situation and saw recommendations about wearing the hardware before bedtime. I did that and continued to violently recoil from the feel, the smell and what seemed like artificial breathing. I called my daughter over to test the machine and she put the mask on three times, gagging each time and jerking it off.

Thinking I should push ahead or risk dying in my sleep, I put on the machine when I went to bed at 10:30 last night. It was very repelling but I calmed enough to to drift off to sleep, probably because it was the end of a long week and I was normally tired.

It is not normal for me to wake more than one time per night. But last night I surfaced the first time at 12:30 am. The machine was in the floor, still whirring away. I picked it up and put it back on. The mask thing nestles right under my nostrils and kind of seals up around them. Suddenly, I was smothering and ripped it off my head. Breathed through the episode and put the thing back on. After this I just dozed and didn't really sleep and surfaced again an hour later. This time, the machine was still on my face but I'm gasping for air again like being waterboarded. I ripped it off again but eventually put it back.

I woke up again at 3:00 am, this time having a panic attack. The machine was in the floor again (I don't know when it went away) and I had blood on my face from scratching it off my head while asleep. Took my sat, it was 94. The panic attack continued. I did everything I could think of to get back to rest, including turning off the machine, unplugging it and moving it to another room. Without the machine, I finally went back to sleep again at 5:30 am and slept undisturbed until 9:30 this morning, which is ungodly late for me.

After waking, I felt terrible. Accustomed to feeling quite well, I had a thudding headache, a stuffy face and could not see straight for a half hour. (I have to note that I forgot to put water in the machine. The DME lady mentioned something about this but I didn't think of it again.) My left arm hurt and I began to worry I was having a heart attack. I have a bloody scratch on my face and deep purple circles under my eyes. I have been paralyzed with exhaustion all day and on the edge of a panic attack. (I don't normally have panic attacks.) I cannot make good sense. Since no one told me it was a good idea to cancel all activities after receiving a cpap machine, I had a birthday party to go to in the next town today. I had to have someone drive me because I did not feel safe or all there. It was an altogether terrible, horrible bad day. I found this forum while scrolling my phone at a birthday party a few hours ago that I now barely remember.

I'm now looking at having to put that machine on my face again. I think my insurance is going to excommunicate me. Is this just the way it is?

[chunkyfrog]

Wekcome to the zoo.
You are not alone.
Many of us started out with similar experiences.
It gets better.
Hang around, and the experts will be along to help.

[loggerhead12]

That's pretty terrible. Not one person whose job it is to help you actually helped you.

You did proactively come here for help, so you're smart and capable of doing this. Read up, learn how to ask the right questions and figure out the answers.

[HoseCrusher]

"Is this just the way it is?"

Yes, but...

Perhaps we can help you change your perspective and expectations.

Putting a mask on your face, hooking it up to a machine that blows air, and trying to go into a restful sleep is a little "out there." However, if you re-frame things to think about going diving you quickly realize and accept that the mask is a benefit. You can actually breath underwater. As you lay down and get ready for sleep, put a vision of diving in an exotic location in your mind and play a scene in your mind that goes something like this.

https://www.youtube.com/watch?v=gvf1vq8h-ec

Another visualization is that of a fire fighter going into a smoke filled room and rescuing someone.

Wearing a mask is unnatural but having improved blood oxygen levels is helpful to maintaining health. You have to kind of psyc yourself out that the benefit is worth more than the inconvenience of having a mask on your face. Eventually you will find that you embrace the idea of having a mask on your face.

I am a very active sleeper. I hold the vision that I am a ballroom dancer. The mask is my partner and I try to do my best to present it in its best form while I am tossing and turning in my sleep. The idea is to turn the wearing of a mask from something that is imposed upon you to something that you can have some fun with. For the record, I can't ballroom dance for crap but my mask appreciates the efforts I go through to make this therapy work.

This is not easy (unless you are a diver ) but it can be managed. Keep trying and understand that we are here to help in any way that we can.

[chunkyfrog]

I fantasized about being an astronaut--sometimes a S.C.U.B.A. diver--or a fighter pilot.
Masks are cool.

[zonker]

I fantasized about being an astronaut--sometimes a S.C.U.B.A. diver--or a fighter pilot.
Masks are cool.

says the woman with the steam punk leather covid mask!

[cyberdreamer]

Sounds a bit like my initial experience. I was given a dumb CPAP machine that didn't measure any stats (even tho I never did a titration study), I wasnt given a humidifier (so dry, felt like someone was pushing daggers through my nostrils!), I was told to put vaseline in my nose in case it was dry (so wrong!) and they wanted to charge double the market price for the machine! I was sure I would never use CPAP after this failed experiment!

Fortunately, possibly through some divine intervention, I later learned of another physiotherapist who worked with CPAP to treat sleep apnea. This one loaned me a Resmed S9 APAP and I comfortably slept for 6 hours in the first night. My point is to hang in there!

Initially, you want to take it easy. I made sure to fall asleep at least once with the mask then if I woke up during the night, I would just take it away and go back to sleep. Eventually, you won't even feel the mask in your face after a few weeks.

Your first assignments on the road to feeling better:
- Find out what PAP machine and mask you have and let us know.
- If you have the sleep study, please post a copy of it here.
- Install the OSCAR app in your computer
- Insert your machine SD card in your computer (you may need to buy an adapter)
- Post the results from the OSCAR app in this thread so we can see what went wrong.

[ChicagoGranny]

Please weigh in on my experience, I'm very disheartened.

Just know that tens of millions of people successfully use this strange therapy. You can too. First, drop the victim attitude and switch to a can-do problem-solving attitude.

Maybe reading some of the success stories thread at the top of the index page will help you with the attitude change.

As you move forward in this process, please stick to this one thread so members can easily follow what you have tried.

Welcome!

[Miss Emerita]

I would feel disheartened too if I'd been treated the way you've been. But you've come to a good place for help. A couple of thoughts in addition to the ones above:

* If you live in the U.S., you have a legal right to a copy of your sleep study report. Please request it. Blank out your personal information and upload a scan, or at least convey the key information.

* For most insurance purposes, all you need to show is that you used the machine for 4 hours a day. Doesn't matter which 4 hours, doesn't matter if they're continuous, and doesn't matter if you were in bed. So continue using the mask and machine during the day or evening to help yourself get used to it. That time will "count" toward your 4 hour minimum.

* New masks can smell awful. Try washing yours in warm soap and water, rinsing well. Do that first thing in the a.m. so it'll have a chance to dry.

* For every kind of mask, there are videos on line that show you how to fit them. Take a look at a few of those and see whether there are ways to adjust the straps to make the mask more comfortable for you. When you do that, be sure to try the mask out while you're lying down hooked up to the machine, lying in the positions you prefer.

* If you feel super-freaked by the mask, during the day just hold it up to your face for a bit off and on during the day, without putting the straps in place or hooking it up to the machine.

[joeljjk11]

Like many I think you will learn that you have to take the cpap therapy into your hands. In my experience the doctors and DME suppliers are useless, and at worst will tell you blatantly misinformed or wrong information. I would do some research online and post your questions here, good luck.

[Movieman]

Like many I think you will learn that you have to take the cpap therapy into your hands. In my experience the doctors and DME suppliers are useless, and at worst will tell you blatantly misinformed or wrong information. I would do some research online and post your questions here, good luck.

I agree! My doc is ok, but DME is utterly useless!!!I just hate that they give you machine and say it will help you feel better. I asked before I started on CPAP 2 yrs ago what are possible side effects of CPAP and respiratory department looked at me like I was nuts. Then, I started having all these issues excess gas, chest discomfort, etc. and they said, well that can happen. I’m like aren’t those side effects then? Idiots! I then stopped using it and gave machine back. However, I was still tired so found new doc and started on CPAP 2 1/2 months ago. Still having issues but trying hard. You definitely have to be proactive. I’ve worked some issues out but not great yet. So I completely understand tomower

[tamower]

Thank you all for your kind words...

I did not intend to sound like a victim because I don't consider myself one. I got caught flat-footed being treated like a baked ham and that's on me. I shouldn't have accepted such a significant, life-changing, stressful alteration on a Friday evening an hour before quitting time. I should have questioned the clucking DME clerk more aggressively. All that's my fault but I didn't know what I was doing. That said, I am struck about how this all came about so quickly with not a doctor in sight. I mean, how do they really know that some glob of tissue is blocking my airway at night? As a smoker for many years, isn't it more likely that I have COPD and am desatting because of that? Wouldn't oxygen at night be more beneficial than strapped-on forced air?

As I expected though, I have learned a great deal from your helpful posts but I have to ask a question. Is it really true that the machine doesn't know when I use it? I wore the thing as long as I could during a movie this afternoon. It's repellent but I can tolerate it as long as I am sitting upright and can lift up the mask once in a while to catch my breath. Awake, it's not a problem when I open my mouth because I can consciously wait on the smothering feeling to pass. When my ears pop or feel like they're bulging outward, I just lift up the mask for a bit, breathe, swallow, shake my head to clear my ears and put it back on. When air shoots up in my eye, I move the mask to resettle it again. I can't do all that when I'm asleep.

Thanks for the offer to examine the sleep study report. I have a doctor's appointment on Wednesday to discuss it. If I don't get a good explanation, I'll upload the study then. I took the SD card out of the machine and took a look at it with my computer but there's no understandable information on it. As for the machine, it's a Phillips DreamMapper. The mask is also made by Phillips. The packaging says it's an "under the nose nasal mask." I've examined all the settings on the machine and it seems to me it does know when I use it.

Unfortunately, I've already violated my compliance agreement so all this discussion is likely moot. After that first night, I was so sick and exhausted that I couldn't face using the machine again. After a solid 12 hours of happy sleep, I am rested and revitalized and ready to move forward. I read many of the postings on this site and found them very positive.

Thanks again for all your helpful advice...

[Miss Emerita]

The data recorded by the machine will include the times of usage, and the doctor may hassle you about daytime use. But for most insurance companies, the times of usage don't matter.

What is the range of pressures your machine is set for? Your description of what happens when you use it during the day makes me wonder whether your minimum pressure is too low. That can make people feel air-starved. Most people need a minimum of 6 or 7 to feel OK, and yours may be set at 4 or 5. That's something to bring up with the doctor.

Also find out -- if you don't already know -- whether Flex is turned on. This lowers the pressure a little bit when you exhale and feels more comfortable to many people.

By the way, Dreammapper is the name of the app you can use with your machine. Your machine is probably a Phillips Respironics Dream Station Auto CPAP. Could you check to see whether that's correct?

[tamower]

Miss Emerita...

I have the user manual right here: Phillips Respironics DreamStation CPAP, CPAP Pro, Auto CPAP. I've read this manual through three times. It says nothing about my issues.

I don't know what Flex means. If that refers to the "ramp" thing, then this machine has a button for that. In the book, it says this device is equipped with a ramp feature that your home care provider can enable or disable. I've not pushed the ramp button but I can if I should. Will that make it easier to breathe with the headgear on?

As for the range of pressures, when I turn on the machine, it says 5.0. Is that what impedes breathing? If there is supposed to be a "range" of numbers, I've not seen them. I've watched the screen when I'm awake and the number doesn't change. The rest of the time, it seems the mask part is in the floor. I put water in the machine. When I turn it on, the water symbol says 3. I don't know if that number is adjustable or if I should adjust it.

The book says the "My Info" screen should list Therapy Hours, AHI, Mask Fit and Periodic Breathing. I've been all through the menu and all I see is Therapy Hours. That's at 3.9 over four nights. It sure seems like I got no credit for using the machine in the daytime. By googling, I understand AHI is like A1C, the lower the better. Maybe I could see that if I install the app? I downloaded the DreamMapper app but I haven't connected it because the machine is unplugged. When the machine is s plugged in, it glows blue even when it's off.

I talked to the DME lady today. Told her I was having trouble. She said I should pack up the machine and be ready to return it on Wednesday when I see my doctor. She seemed unnecessarily hostile and I can't understand why. I asked her if there was a class I could go to and she said no. She said many people cannot use these machines.

So that's the story to date. Sigh. I feel caught in a vortex. They gave this machine to me because of a test I took through my phone. I had no advance warning or clue to prepare for an overwhelming, life-changing event. So I have to carry this machine around with me for the rest of my life? I've never seen a doctor and my "medical provider" is a nurse. It's my job in life to bust nurses and remove their licenses. I did three last week. The sad thing is, without any machine or artificial breathing, I woke up at 4 this morning. My heart didn't pound, I didn't break into a sweat, I wasn't gasping and I didn't feel bad. My sat was 98. But I couldn't get back to sleep for some reason. I have to lighten up but it's too cold to fish...

[loggerhead12]

As for the range of pressures, when I turn on the machine, it says 5.0. Is that what impedes breathing?

Most people are uncomfortable with pressure that low. They feel like they aren't getting enough air.