Newbie, in a weird place, looking for answers.

Hi all,

I'll try to keep this short but forgive me if I ramble a bit, I'm actually in a really odd place, and I don't know what to do. Perhaps someone out there can help or share similar experiences? I really need help!

I'm a 42 year female, who drank and smoked through her 20's. Quit all that and went to the gym religiously, in her 30's. Then hit her 40's... walked quite a lot, ate Paleo and slept really well...

until everything changed.

I started noticing that I couldn't lie face down for a massage anymore, without my nose 'bunging up'. Then my throat started collapsing during sleep (I think I was taking too much magnesium, because that stopped when I quit supplementing). But it was soon replaced by an inflamed? sinus problem (dry or swollen turbinates?) that left me unable to breathe at night (when asleep - I'm a nose breather). And now... post nasal drip... mucus closing up my throat.

For about 2 years I've been waking up gasping for air but it's not always for the same reason. Sometimes it's because of my nose, sometimes, it's because of my head position blocking my throat, and more recently because of the mucus.

OK, I did some research and concluded that I have narrow and elongated jaws (a long face) according to Dr. Mike Mew, and there's not enough room for my toungue and I probably have a narrow airway. I'm self diagnosing all the way, but it makes sense to me. That's why the phlegm is blocking it up. The reason why I think it's just suddenly happened (although without knowing it I think I've always been a bit of a mouth breather during the day, especially with exercise) is because of hormones. I think maybe I'm peri-menopause and that has dried up my nasal mucus membrane, or dried up my airway... Again, self diagnosed, but it seems to fit.

I went to a doctor when I could (he said deviated septum and allergies) prescribed me nasal sprays and medicines that did nothing (I have no history of allergies). And dentists/orthodontists - none willing to treat me with orthotropic or face pulling methods to restore my palate to a larger size. (I live in Asia, not easy to find someone who is that forward thinking. They prefer to throw antibiotics at you) and so, I'm kind of left to take matters into my own hands as much as I can.

I've tried many methods to treat the self-diagnosed sleep apnea - tennis balls in my sleepware to keep me off my back (helped at the start, but then I started gasping awake on my side and front too). Elevated pillows. Sleeping sitting upright. But the gasping has continued, and it's gotten to the point of ridiculous. Waking up several times a night, no longer feeling refreshed and alert in the morning. Actually dreading the night time, and being afraid of going to sleep.

It's no fun waking up with a huge gasp, feeling hot, having my heart pounding and racing, repeatedly. I knew I was putting undue strain on my heart. So when the chest pains started, and I realised how out of breath I was, just walking 100 meters down the road, and the gasping and not breathing got to ridiculous levels, I had to just... do... something! I was actually in quite a state, dreading the night, and wondering how I was going to get through it. (I seriously talked myself into a panic thinking I might be having a heart attack)

I was in rurualish China, so I went to see a local doctor, who said my heart was 'fine', gave me a ECG, said ''also fine'', but couldn't explain the nasal problems. I asked him, through a translator about sleep apnea machines, and he was able to give me the address of a shop selling Resmed products. So, I just bought a massively overpriced, imported S9 CPAP machine. I was given a brief overview in Chinese, again with a translator, about how to use it, a mask fitting, and a mini-trial. So far so good.

But no sleep study.

My thinking was anything is better than more pressure on my heart... and short term I'm just gonna switch it on, and prevent giving myself congestive heart failure.

But now I guess, I realise that I need to know what my minimum and maximum settings are. And I need to do that by trial and error (and hopefully some good advice from you guys) because there's no chance of a sleep study (in Chinese or English!) between now and... I don't know when. And I'm on my own here!

I slept with it last night.

It started at 4, ramped up to over 9 and I kept it on for about 1 1/2 hours.

During that time I remember distinctly that level 4 seemed like I wasn't getting enough air. And I had 2 apnea events - one filled the mask with air against my face, and the other was mucus in my throat... so much mucus! So I stopped my experiment, and got up. I could hardly breathe due to the amount of mucus in my throat. It took a lot of 'hawking' in my throat to shift it.

I also felt light-headed, weird and dead dead tired... I didn't like the light-headed feeling at all. Is that normal to begin with? Or was I hyperventilating?

If I am hyperventilating, then I suppose my max number should be lower, yet I still had two apnea events at 9, that weren't fully prevented, so that suggests it needs to be higher? Argh. What to do?

I want to love this machine, and I'm prepared to put in the work to get used to it (I feel like I have no other choice) but I'm stuck in China for the time being and so need to figure out how to set up and get going on my own. I'm doing my homework, and I know it's not routine, but I really really really feel like I have no other choice. My situation is pretty ridiculous, but I'm really scared for my heart, and literally do not know what else to do.

Can anyone help with advice, please?

Why does the machine leave me feeling light-headed and 'odd' and slightly woosy after using it, and is that 'dangerous?

Thanks so much, and please, if anyone can give me some advice I'd really really appreciate it. I'm in quite a weird place and I don't know what to do.

Welcome to the forum. As a first step, use the link below in my signature box to the video tutorials -- the one on the S9 machines will get you familiar with all the features and settings, including the clinical menu where the pressures are set. Is your machine an S9 Autoset, Elite, Escape, or Escape Auto?

Kaiser Permanente routinely sends newly diagnosed patients home with auto-adjusting CPAP (aka APAP) machines to figure out what pressure they need. They set the minimum pressure of 4 (the lowest it can go) and the max pressure at 20 (the highest it can go), and they let the machine go where it needs to go throughout the night. After a week they look at the data recorded by the machine to narrow the pressure down to a (hopefully) optimal range for that person. So if you have an Autoset you can follow the same approach -- but set your minimum pressure at 6 since you already know you don't like how 4 feels. That's very common, the "not enough air" feeling at 4 -- most people bump up the minimum pressure right away because of this.

You can use SleepyHead software (link below) to start looking more closely at what goes on during the night -- pressure changes, mask leak, apneas, snores, etc... We can give you feedback if you post screenshots of some of your SleepyHead reports. It's all doable.

The two apnea events you mentioned -- were those experiences you assumed to be apnea events or were they apneas flagged by the machine? In any case the goal of PAP therapy isn't necessarily to achieve a "zero apnea" night, that is not always realistic for some people. So having a couple of apneas doesn't necessarily mean you need more pressure. You need more time on the machine, and more than a night or two, to start figuring out the best pressure(s). Maybe start with min pressure 6 and max pressure 14 (just so it doesn't swing all the way up to 20 while you're trying to get used to it). If after a few nights you find the pressure is bumping up along the 14 line most of the night then you can start gradually increasing the max pressure.

I don't know why you felt light-headed after using the machine -- possibly anxiety and the strange sensations that go with trying to sleep with the contraption for the first time?

Thank you so much for your reply @kaiasgram really, it means a lot.

I will take your advice and (figure out) how to change the settings, though I think it's only on 4 while it starts (ramping) up. The times later when I accessed the information screen it seemed to be up around the 9 point something mark.

I assumed they were apneas as I haven't yet been able to figure out what the machine is telling me, and all the information it records.

My machine is an Escape Auto so I do have the computer chip recording capability, not that I've figured that our yet. So I have to look more into that. I also don't yet know how to change the settings on my machine so thank you for the video tutorials. That will help a lot!

So, if my understanding is correct, the way these machines work is that you set the min and max. The machine (intelligently?) selects what you need from within those parameters (somewhere in the middle?) (so up around 9 in my case) and when it detects that you're having an apnea it fires up to the maximum setting. After that event it then runs at a higher setting than before, in the hopes that that will be enough to prevent another apnea. Is that how it works?

What happens if you set your settings too high? Can you get too much air? Are there bad health effects long-term?

Also, just in case you maybe have an answer, what about my throat mucus? Is that an issue? Will it prevent the machine from working properly? Will I still choke and gasp, or have to clear my throat?Ssince i entered peri-menopause it has become thick and sticky, and pervasive (in my already narrow airway). I'm sure that is what has triggered this new sleeping pattern - hormones! I'm also feeling general daytime breathing restrictions, rapid heartbeat, tingling and dizzyness. Perhaps, if it's not a common ration to CPAP, my weird light-headed feeling could be more to do with that, than with the machine? I jsut don't know, but am having to learn so much! :/

Again, many thanks for your reply.

Hi - unfortunately the Escape gives no data beyond 'compliance' (how many hrs you use it... insurance co's care, the rest of us don't). 4 is the default low machine setting, but not enough pressure to breathe at for 99% of us and we generally raise it to e.g. 7 when starting out. The high pressure setting is not as vital, though could be put on e.g. 15 to start, but also could be left at 20 (machine default high). The mask is important in terms of comfort and leaks, and can make all the difference of course.

Not knowing anything much else medically about you and not being doctors, we could only speculate (not a good idea - everyone has their own take plus their 2nd aunt's sister's story!) about your health otherwise. Have you recently seen a good ENT doctor and/or gotten a recent diag. on the mucus thing? If not, try to get one... but don't let them tell you you need immediate surgery on your tonsils, uvula, or anything else until you've gotten more opinions and discussed it with your GP as surgery too often ends up not being a good idea at all for OSA patients who really need just better C- or Apap treatment... it's just that surgeons see things in terms of nails when they're the hammers ! You also may have environmental allergies - something else to check out.

If Cpap (set-up properly for you with the right type of machine and mask) remains problematic after a good trial then go from there, but a proper sleep study should really be done. Many people here use nasal rinses (often saline) to manage blockages or leaks prior to bedtime, but again you don't know yet what's really going on, but please keep up here (same thread's best so we can follow things) and we'll do our best.

You're unlikely to have too high pressure unless the low setting (always the important one) is set above 10-15 (whatever pressure is reached by the machine on its own otherwise), and that doesn't look like it needs to happen any time soon.

I don't have access to a good team of professionals unfortunately, as I'm not home at the moment. I'm working in the field, in Asia (usually remote places, China, Laos, etc) so there are language difficulties, and maybe 'differences in standard about what level of care you receive. I'm also not in one place for very long, usually, so it's difficult to get continuity. That being the case I'm trying to muddle through this on my own. It's the only option I have right now, and I know it's not the 'desired' course of action, or the norm, but its all I've got right now.

The mucus is never ending. I've never had it before, and I've been checked out twice by local doctors, who who said it was allergies (I've no previous history) and the other said deviated septum. I took their anti allergic medication, nasal sprays, and sudafed, along with neti pot saline washes and salt water sprays, I also removed wheat and dairy from my diet. But it still persist. I'm convinced it's hormonal, because it's appeared with a bunch of other 'menopausal' symptoms that I didn't have before.

I don't know if CPAP machines are designed to deal with mucus blockages?

(And it may well be that I have a MUCUS problem, rather than a massive 'APNEA' problem) though I see them all as being part of the same messed up physiology.

I have narrow nostrils, constricted airways, and if I put my chin to my chest, physically, I'm no longer able to breathe. Same goes if I hold my head backwards. This sometimes happens during sleep. Sometimes it's my nasal passages being so dry and inflamed that I can't get air in through my nose at all. Other times the mucus blocks my throat and it feels something like an asthma attack. I just can't get air. - What I think is the result of having a narrow lower jaw, weak and constricted airways - what' been referred to at the 'Modern Melting Face'.

The mucus is causing me to choke, not breathe, and wake up gasping throughout the night - I hope the CPAP can still help, despite that, and isn't hindered by it.

It's an Escape Auto @julie, I know know if that's different.

Have you tried raising the head of your bed on 5-6" blocks? It often helps with GERD (which so often accompanies OSA) plus may help the mucus, though I can't say for sure, but it does sound like allergies. Have you access to something like Zyrtec (antihistamine)?

BT,

Welcome to the forum.

By any chance, are you using a humidifier on your CPAP and if so, which setting are you using?

Good point - too high a setting (unnecessary for environment) will provoke drips, congestion, etc.

@julie I can't remember what the doc gave me as an anti allergic pill, but it didn't do any good. I move around country to country a lot too, different weather, different seasons, it still persists... I raised my bed and when that didn't work, I actually tried sleeping upright (as the Buddhist nuns and monks do when they're on retreat) it was sooo uncomfortable that I didn't get much sleep, but still the mucus persisted. Pretty sure it's hormonal, but that's just my opinion, not a doctors (who can be pretty ehh... hit and miss? about these things out here. They're more likely to blame the weather or the aircon, and then prescribe antibiotics...) I don't mean that to sound 'off' but quite a lot of the places I'm in are not westernized... My previous appointment in China, I had about 6 other people just walk casually into the room I was in, and put their results down on the table, trying to talk to the Doctor (who was seeing me at the time).

i can't say if it's GERD or not, because I don't have the symptoms, but then they do call it Silent Gerd? don't they... So, I just don't know... thanks for your ideas though. I appreciate your thoughts.

By any chance, are you using a humidifier on your CPAP and if so, which setting are you using?

There is a humidifier on it, JimP, but I didn't use it last night (my first night). I'm currently in the tropics so I didn't want to overdo it. Do you think more or less humidity is good for dealing with this issue? would you recommend a level? And thanks for the welcome, appreciate it.

Each of us are different so I can't say for certain that my experience mirrors what others go through.

For me, if I have the humidity set too high, my sinuses do something where I don't breath as well.

Since I bounce between two different mask, I've found two different humidity settings. On my phillips respironics machine, a nasal pillow mask (P10) seems to work best at a humidity setting of 2. When I'm on a mask that covers my nose and mouth, a setting of 4 seems to work better in that my mouth doesn't dry out as much.

Another point that I noticed is that you don't use your humidifier when its particularly humid. Maybe someone can jump in here, but is it better to disconnect the humidifier or can you run it with the water reservoir dry? or do you run it with water in the tank and setting on 0?

By the way, do you have a good source of distilled water for your humidifier?

JimP wrote:Another point that I noticed is that you don't use your humidifier when its particularly humid. Maybe someone can jump in here, but is it better to disconnect the humidifier or can you run it with the water reservoir dry? or do you run it with water in the tank and setting on 0?

By the way, do you have a good source of distilled water for your humidifier?

Hi Jim, I just unattached that section of it (it's in two parts) so could run it without the humidifier. No distilled water yet, I used filtered drinking water (not mineral) for my test. It comes in a glass bottle, rather than plastic. Not recommended as a good idea I'm sure, but it was all I had. I'll try to get some distilled water soon. Thanks!

kaiasgram wrote:Kaiser Permanente routinely sends newly diagnosed patients home with auto-adjusting CPAP (aka APAP) machines to figure out what pressure they need. They set the minimum pressure of 4 (the lowest it can go) and the max pressure at 20 (the highest it can go), and they let the machine go where it needs to go throughout the night. After a week they look at the data recorded by the machine to narrow the pressure down to a (hopefully) optimal range for that person. So if you have an Autoset you can follow the same approach -- but set your minimum pressure at 6 since you already know you don't like how 4 feels. That's very common, the "not enough air" feeling at 4 -- most people bump up the minimum pressure right away because of this.

You can use SleepyHead software (link below) to start looking more closely at what goes on during the night -- pressure changes, mask leak, apneas, snores, etc... We can give you feedback if you post screenshots of some of your SleepyHead reports. It's all doable.

The two apnea events you mentioned -- were those experiences you assumed to be apnea events or were they apneas flagged by the machine? In any case the goal of PAP therapy isn't necessarily to achieve a "zero apnea" night, that is not always realistic for some people. So having a couple of apneas doesn't necessarily mean you need more pressure. You need more time on the machine, and more than a night or two, to start figuring out the best pressure(s). Maybe start with min pressure 6 and max pressure 14 (just so it doesn't swing all the way up to 20 while you're trying to get used to it). If after a few nights you find the pressure is bumping up along the 14 line most of the night then you can start gradually increasing the max pressure.

Great videos, @kaiasgram. Thanks. I set my min / max as you recommended, and hopefully no weird feeling tonight.

One thing though... I'm not able to download the SleepyHead software from your link. There's no .exe file to make it run? I'm sure I'm just not doing it right, but could you advise? I managed to download a folder onto my desktop but it contains folders: imageforums, platforms, printsupport and files... but I've done something wrong I think!

If thick mucus persists, can you get guaifenesin there?
When taken with water, it helps thin mucus--sometimes drinking water alone helps.

The sleepyhead program is in the sleepyhead folder - windows just hides the ".exe" extension from you. It's the file named SleepyHead-OpenGL.

But my understanding, as others in this thread have said, is that the Escape model does NOT record any data but compliance - ie, hours of use. So there won't really be anything to look at.

Does it tell you your AHI in the morning when you turn it off?

Julie and yaconsult: The Escape Auto does record total AHI.

It also records a pressure number (either average or 95% number, can't recall which). Unfortunately it does not break the AHI down by type of event (central apnea, obstructive apnea, hypopnea). So no leak data and if I recall correctly, no high res graphs. At least the total AHI and pressure numbers are something to go by when self-titrating.

BananaTree, I use a Mac so can't help with getting SleepyHead set up on your computer, but I know others will help you out. But given that you don't get detailed treatment data on your machine, software will be of limited use except to see trends over time in your AHI and pressure numbers (and hours of use count). The total AHI and pressure numbers are both available on your machine's display screen, though you have to get into the clinical menu to see them. The video tutorial I linked to earlier will show you how to do that.

Now don't laugh at my next question -- any chance you could exchange the Escape Auto for the Autoset? That would allow you to understand what type of apnea events are happening and when they are happening, and what is the pressure doing throughout the night (most helpful for narrowing down to a good pressure setting), and are mask leaks within acceptable limits. You may find it a little more challenging trying to self-titrate with the Escape Auto because of the lack of detailed treatment data that would guide you -- however, if you have a straightforward "plain old" case of obstructive sleep apnea, the total AHI and pressure numbers could certainly be enough to get you to a better place.

I didn't address some of the issues you asked about (mucous, etc.) because I really don't know and don't have any experience to draw on that could possibly be helpful to you. Shortly before I was (finally) diagnosed, I was waking up with a croupy-wet sounding cough (kind of scary) that completely stopped once I started on cpap.