Just another "newbie", feeling like I'm suffocating...

[Isme]

So I'm new to this forum... and to CPAP usage. I'm 12 days in at this point, actually. I was recently diagnosed with apnea after feeling like total crap for what seemed like forever. I thought this was FINALLY the answer I'd been looking for. I'm 27 years old with two small children. I absolutely need to feel like a normal human being again.

Anyway, I had the first sleep study done to diagnose the problem. Then I had another one done to "titrate" or something. I'm not really sure. I know it had to do with the air pressure. During the second sleep study, the technician said he'd had to bump up the pressure (from 7 to 9) to get me through some of my apneas. He'd also had me in a full face mask because he said that I'm a mouth breather (which I'm really not) and that it would be the best to prevent leaks. But when I went to go pick up my equipment, they said that my actual doctor had been VERY explicit about what he said I needed. I needed a "nasal pillow" mask, and a lower pressure of just 5. Both of those things would be awesome if they worked. The lower the pressure, the less chance I have of experiencing negative side-effects. The mask thing through me for a loop. Sure, it's cuter... And it's smaller... And most people prefer it. (Which is apparently why my sleep specialist recommends it for ALL of his patients, because he thinks it will increase their likelihood of full compliance.) But the mask I had during the sleep study seemed perfect to me! Plus, with an actual mask I don't feel claustrophobic. I just felt like I was getting extra air. It was nice. But with the nasal pillows, the air thingy has to go directly into my nostrils to make a seal, and that gives me the sensation that I'm suffocating. I know I'm not. I know that there is air shooting through my nose and I can open my mouth at any time if I need to... But I can't actually *feel* the air going into my nose when the mask is properly sealed, and the sensation of inhaling and feeling the silicone mask fill my nostrils like a plug just FREAKS ME OUT.

Of course, I found my way here and tried to figure out what I could do. I'd read a thread in which someone suggested sizing up on the nasal pillows to help with the suffocating feeling. So I sized up from an XS, to a small, and eventually to a medium. The medium helps a *little*. Enough to where I don't feel like I'm going to pass out from panic, anyway. But of course it doesn't fit as well as the XS pillows. And really, the improvement isn't that amazing. I still feel like I'm suffocating every night before I go to sleep. From various things I've read and heard from people, I'm beginning to think that the problem is the pressure and not the size of my nasal pillows. The medical equipment technician mentioned that it was a very low pressure. I mean, the machine only goes to 4.

At any rate, I have tried my best to be compliant and to get used to this. I have worn the mask every night without fail. I'm averaging 7.9 hours of treatment per day. I've even worn the mask for a couple of naps. But I do NOT like the sensation of suffocating. I also think that, while I am probably not having as many apneas as when I was untreated, I must still be having issues. I wake up with headaches some mornings. My eyes are super swollen when I get up. I'm pretty tired still. The exhaustion is not as bad as before, but it's not as awesome as I thought I'd feel judging from the way I felt after the 6 hours with the CPAP at the sleep center. I know that part of it is the "sleep debt" that they warned I would probably have to pay down before I experienced some improvement. But I also think a lot of it is that that sleep specialist decided to do the exact opposite of what the sleep technician had said I would need. I've not actually seen or spoken to this sleep specialist since he referred me for my original sleep study. I just feel like he's basing my care on his experience with various other patients. The only problem is, they are not ME.

So I called my medical equipment company to see if I could get some answers. I have an appointment with my sleep specialist next Monday, but I really didn't want to deal with this sensation of suffocation for the next week. After talking with them, I felt fairly certain that my issues are stemming from the really low pressure that I was "prescribed". I have a pretty nifty machine that's supposed to be able to adjust to my needs, but the doctor ordered that it be set on a pressure of 5, and 5 alone. So the medical equipment technician suggested that maybe there was some sort of mix-up with the paperwork when they put the order in for my CPAP machine. That seemed logical to me. I know my sleep specialist is SUPER busy. The medical equipment technician suggested that I call my doctor and see if he wouldn't double check on things, and possibly raise my pressure. So I called them. I have to drive out of town to get the card reprogrammed, so I was really needing to know the answer as soon as possible. Well, after I explained everything to the nurse/receptionist... she came back and said (kind of sternly) that my doctor was going to call the medical equipment company, and then he would call me sometime later today. It was just weird how she said it. I was a little afraid that I'd got the medical equipment guy in trouble by something I'd said. Not that it mattered at the end of the day-- my sleep specialist never called me back and I still don't have answers.

So at this point I'm just feeling frustrated. I don't feel like my concerns are being taken seriously. I don't feel like my care is being personally tailored to MY needs. I was hoping that all of this would help me ease my way off blood pressure medication, but I've actually been feeling worse in that respect over the past few days. I know that I have to be careful and compliant for these first 30 days so that I can get my insurance to approve the CPAP... But I'm wondering if I will always have to rely on this specific doctor to "okay" that specific medical equipment company to adjust the pressure and such on my machine. Will the machine run without the pre-programed SD card in it? Do I have any options here? Is it possible to get a second opinion if this doctor continues to blow me off? Does anybody with some experience have any advice to offer? I'll take anything at this point. I just want to feel better.

[poppi2]

Isme,
Sorry to hear your frustrations, but you have come to the right forum. You will get some good advice, but not from me as I am still very much a novice with this treatment. Good luck, Earl

[Isme]

Thank you Earl.

[Goofproof]

It sounds like your TECH knows way more than your doctor, my guess is he does. Jim Too bad doctors are GODs. They think!

[DegoDiva]

Sorry to hear you're having a rough time, but I admire your ability to stick with it! I'm brand new here, so far it be it from me to give advice on your settings and such, but it sounds to me like you need a dr. that will give you better attention. Do you have another one nearby, so you can get a 2nd opinion?

[Isme]

It sounds like your TECH knows way more than your doctor, my guess is he does. Jim Too bad doctors are GODs. They think!

This has been my thought from the beginning. The tech was able to explain so much to me. He really seemed like he knew what the hell he was talking about... Whereas my only meeting with the doctor was uncomfortable and awkward. He spent most of the time chuckling to himself and staring at my boobs. That appointment didn't exactly fill me with confidence, but he did give me the order for a sleep study, so I was happy enough. But what's the point of going through these sleep studies-- especially the second one-- if he isn't going to listen to what the technician is saying AT ALL?

Sheesh, I have enough trouble with doctors as it is. I'm trying to train myself to keep an open mind and recognize that not all doctors are self-important jerks. But I just keep running across those that are, and it makes life so much more difficult. I just want to get better. I don't want to have to keep going to the doctor for these strange symptoms that nobody can find a cause for. Getting diagnosed with OSA was supposed to provide answers for my many "hypochondriac-like" symptoms. But I don't feel much better. And if I keep falling asleep to the calming sensation of SUFFOCATING, then I imagine it will be a long while before I do.

[JointPain]

Hi Isme. Welcome to the forum and unfortunately to being a hosehead as well.

CPAP is a very personal thing. You need to do what works for YOU, even if that means doing something different from every other CPAP patient on the planet. (Except you really should wear the mask every time you nap or sleep.)

Your sleep specialist sounds nuts. It's unacceptable for him to force you to use pillows because he *thinks* other patients prefer them. Perhaps all his other patients do prefer pillows --- the ones that don't have left him.

I would find another sleep specialist asap. Perhaps ask your friendly sleep tech to recommend someone in your area. Just be careful with his advice. You want a sleep specialist who looks out for YOU, not one with too cozy a relationship with the DME.

A pressure of 5 is very, very low. It's possible there are valid reasons for it (although very unlikely), but I would definitely seek a second opinion. It's no good avoiding potential side effects if the pressure is too low to prevent the apneas.

Some people adapt to CPAP seemingly overnight. but many take a while to adjust. If it happens you're not in the first group, just hang in there and eventually you'll most likely start feeling a lot better. At a minimum, the apneas (once controlled) won't be damaging your body every time you sleep.

Keep an open mind on the pillows for the future. Once you've got used to CPAP you might find them more comfortable.

Although you might not be a mouth breather while awake, your mouth might open while you're asleep, and all the therapy will escape that way. You might want to investigate using a chin strap. (I need one.) Another useful thing to do is to keep your tongue pressed lightly against the top of your mouth, just behind the teeth. You'll need to practice it basically full time (awake and when going to sleep) so it becomes a habit. When the tongue is in that position it blocks mouth breathing and air going down into your stomach (which is uncomfortable and has to come out the other end).

Always sleep or nap with your mask on. (Unless there's a physical reason.)

Good luck.

[Isme]

Sorry to hear you're having a rough time, but I admire your ability to stick with it! I'm brand new here, so far it be it from me to give advice on your settings and such, but it sounds to me like you need a dr. that will give you better attention. Do you have another one nearby, so you can get a 2nd opinion?

Thank you.

I'm not actually sure if there is another sleep specialist nearby. The one I'm seeing serves a crazy-wide range of counties. During our initial appointment, he actually told me to get my husband to go to sleep-tech school (since he's a 3rd-shifter) because there is a dire shortage of technicians and such in our area. I took that to mean that there was probably a shortage of sleep specialists too. My assumption was confirmed every time I had to seek THEM out in order to prompt the next stage of diagnosis/treatment. I had to bug them to finally set a date for my second sleep study, even though they made it sounds super important that I get all this taken care of. I also had to hound them to finally call in my medical equipment order. The whole operation just doesn't seem very organized. I realize this is probably because they're bouncing from office to office throughout the week, but that really isn't my problem. It seems reasonable for me to assume that they will hold their crap together and provide me with the care that I need. But reason and assumptions don't seem to be getting me very far. If I don't hear back from the sleep specialist tomorrow, then I will try to do some calling around to see if there is anyone else in the area. I guess I'm just afraid that if I go to someone else, then I'll have to do all this over. Sleep studies suck. Sleeping without a machine sucks. I don't want to start from scratch... But then again, I don't want to struggle with this for months on end either. *sigh*

[poppi2]

More than one person on this forum will advise you to:

"Call the sleep lab and get copies of the full report and condensed graphs for your study and titration." Those are important medical records for you to keep. You should get a copy of your prescription from the doctor's office.

[Isme]

Hi Isme. Welcome to the forum and unfortunately to being a hosehead as well.

CPAP is a very personal thing. You need to do what works for YOU, even if that means doing something different from every other CPAP patient on the planet. (Except you really should wear the mask every time you nap or sleep.)

Your sleep specialist sounds nuts. It's unacceptable for him to force you to use pillows because he *thinks* other patients prefer them. Perhaps all his other patients do prefer pillows --- the ones that don't have left him.

I would find another sleep specialist asap. Perhaps ask your friendly sleep tech to recommend someone in your area. Just be careful with his advice. You want a sleep specialist who looks out for YOU, not one with too cozy a relationship with the DME.

A pressure of 5 is very, very low. It's possible there are valid reasons for it (although very unlikely), but I would definitely seek a second opinion. It's no good avoiding potential side effects if the pressure is too low to prevent the apneas.

Some people adapt to CPAP seemingly overnight. but many take a while to adjust. If it happens you're not in the first group, just hang in there and eventually you'll most likely start feeling a lot better. At a minimum, the apneas (once controlled) won't be damaging your body every time you sleep.

Keep an open mind on the pillows for the future. Once you've got used to CPAP you might find them more comfortable.

Although you might not be a mouth breather while awake, your mouth might open while you're asleep, and all the therapy will escape that way. You might want to investigate using a chin strap. (I need one.) Another useful thing to do is to keep your tongue pressed lightly against the top of your mouth, just behind the teeth. You'll need to practice it basically full time (awake and when going to sleep) so it becomes a habit. When the tongue is in that position it blocks mouth breathing and air going down into your stomach (which is uncomfortable and has to come out the other end).

Always sleep or nap with your mask on. (Unless there's a physical reason.)

Good luck.

Thank you so much! I hadn't thought about asking the sleep tech if he could recommend someone. He would probably a good person to ask, though. He was a chatty fellow and he mentioned that he works for several different doctors.

That was my thought about the pressure. I can see the benefits of going as low as possible-- if it works. But from what I'm reading, I've hardly come across anyone that uses a pressure of 5. I really think it was a mistake or a typo or something. It's so bizarre. Why focus on 7-9 during the titrate study (or whatever it's called) and then go so ridiculously low for my take-home machine?

As far as the pillows, I do think the could work for me. They are comfortable enough to wear. It's just the sensation of suffocation that's the problem. But I just remembered something else that I noticed last night-- the "suffocating" feeling is worse once the machine is turned on. I can have the pillows stuffed in my nose, and I seem to breath okay. But as soon as the air kicks up, I feel like I'm struggling. I'm not sure what's up with that. I do think that by refusing to let me even *try* the pillows, my tech was showing a little bias himself... But overall he seemed a lot more helpful and knowledgeable than the doctor. Even if he did push the full-face mask on me, he at least let me try on a few to see how they felt and stuff. It's just that I went from expecting the full face mask to taking home this adorable pink nasal pillow set. That would have been no problem if I'd been expecting it at all, but I didn't. Really though, the pillows should be fine. When the tech said I was a mouth breather, he was basing it one ONE night of observation. That one night happened to be the worst night of sleep I'd had in months. LOL. Not to mention that I imagine I did sleep with my mouth open when I was struggling to breath during my sleep. However, I normally have the opposite problem. I tend to clench my jaw and keep my mouth pretty tightly shut. Thus far, I don't see any need for a chinstrap or a full face mask on that account. What you mentioned about placing my tongue on the top of my mouth just behind my teeth-- that's exactly the position I've been assuming when I sleep with the mask. It helps to keep the air from coming into my mouth and filling my cheeks. Every time I wake up my mouth is firmly closed. In fact, I kind of feel like the tin man when I wake up in the morning. I'm always reminded of the scene where Dorothy finds him in the woods and is trying to oil him up. It takes me a few minutes to pry my eyes and mouth open. Which is just as well. I don't need to be looking or talking to anyone for those first few minutes anyway-- I'm a total grump when I wake up!

Anyway, thank you so much for your input! I will definitely try to remember to always sleep with my mask on. I did take a couple of naps without it in the beginning, and it was so awful. I could feel the difference as I fell asleep. I kept waking up with that choking flap-thingy feeling. I'd originally not wanted to "bother" with getting all the equipment on just for a little cat nap, but after I woke up from the nap feeling like crap... I realized there isn't much point in napping if I spend the entire time fighting to breathe. Since then I've only taken a couple of naps, and they have all been with the CPAP. The suffocating sensation is uncomfortable... But not nearly as uncomfortable as ACTUALLY suffocating in my sleep. LOL.

[kteague]

Hello and welcome. Just a few thoughts on your situation...

If changing doctors is too big a hassle right now, you could try to "lead" the current doctor where you need him to go, and just use him for - uh, well, er - if a need should arise. As was suggested, get your reports - not just the summary, it will be a few pages for each study. If you have garden variety obstructive sleep apnea, it's not as complicated as when there are variations from the usual. Maybe it will help if you call the doctor very early, ask when he'll be calling back, and tell them if he can't call back in a reasonable time, you'd like him to refer you to someone who can address your issues. If they try to stonewall you, tell them you'll just tell your referring doctor to call and hopefully he'll have better luck getting a response. Docs should want to keep the referrals coming, but if he has little competition, he may not care. There's nothing wrong with saying expectantly, I'm sorry, but it is not acceptable to allow to me to suffer unnecessarily. Do document your calls and messages, so if you run into any problems later you'll have ammo for the battle.

I wouldn't necessarily give up on that mask until you've tried it at a higher pressure. Your sense of suffocating may be more from the pressure being inadequate than not feeling the air. But don't wait too long. Many times there's a 30 day exchange policy. Every mask has a minimum required pressure to properly vent exhaled air. You do want to be sure your pressure meets your mask's (and any new one) needs.

Best wishes as you go forward. I personally suffered far too long at an inadequate pressure, dealing with a doc that wasn't helpful. I ended up taking matters into my own hands. I did eventually find a good sleep doctor. There are knowledgeable ones who care out there.

[wmcanally]

Hello Im also new to this forum. I too have experienced some of the same issues with my sleep doctor. I finally found out it was his staff not him. He didn't get some of the messages. I was prescribed a specific ( The DME has to fill the script as the Dr writes it) nasal mask. I wanted a full face mask due to my nose being stuffy at times and feared that i wowouldn'te able to wear it at times. I also wanted a didifferentachine than the one prescribed. I got the machine this Dr prescribes to 100% of his patients. The DME deals with the 2 doctors in the area alot and told me each Dr had their preferences. I dodon'tnow if they get a kick back or what. I kept calling until i was able to talk to the Dr. I told them i too was busy and worked and if he didn't call back id be there to get my files and find another Dr. This got the ball moving. He called me back within the hour. He wrote a additional script to read Mask of choice. That enabled me to get whatever mask i wanted. You can exchange within 30 days. The DME took my old mask and then gave it back. They are super nice people. They told me they had to throw it away the mmanufacturedidn't want it back even though they received a credit on the used mask. You have to find what will work for you . Not me or others you.

I then got excellent advise here on a reader and software. I am able to look each day or so to see what my sleep looks like as far as my readings. I seem to have a few issues with leaks from time to time. But i've come to believe that is normal somewhat.

I do feel better, some days more than others. Stay with it and i wish you good luck in getting this resolved.

[Lizistired]

Isme, Click on the link you posted for your machine in your equipment. I don't think you have that machine as it's been discontinued.

[Pugsy]

OP says in her comments she is using the new PR S1 Remstar Auto IQ. I don't think that choice is offered in the Profile drop down menu since cpap.com doesn't seem to offer it for sale that I could find.
Closet machine in the drop down menu would be the PR System One Remstar Pro with C Flex+. Humidifier choice would be PR System One Heated Humidifier.

[Lizistired]

Oh, Thanks Pugsy. The IQ is the new one that is only auto fro 30 days, right? That's not good as it sounds llike she is going to be managing her own therapy.