Hi Everyone!! im new!!

[pollyanna40]

had my sleep study and im servere sleep apnea,airway collaspe 60times an hr,waited 7 mths and finally got my cpap,i was so excited,couldnt wait to feel awake and alive and do normal activities again,i was sooo happy,got all set up and mask fitted perfectly,airflow copeable,i could even sleep on my belly,i thought this is gonna be Amazing!!!! first day of mask and i woke up feeling very very shaky and more tired,i thought my head was gonna explode,felt shakey and ill all day,by day 3 of mask i foned sleep apnea clinic,i was crying saying the mask hurts and i cant cope,they had me in and said everything was ok,im only doin 3 airway collapsed an hr which is normal,by day 5 i was cracking up,cry shaking ,pressurre to my head (unbearable) was on pain killers,light headed,i wanted it all to end,night 6 of mask i made the decision not to wear mask and i woke up Great!! Tired but great!! no head ache no pressurre no shakes no lightheaded,felt not ill, so iv not had my mask on for two days now,i know when im asleep im in trouble my sats on the data base is not good,oxegen levels below 85,holding breath for 1min plus,on an average 60 times an hr air collaspe,but cant cope with the mask and how it makes me feel,i will seriously end up cracking up as im more tired on the mask plus ill, its two evils! i feel like a FREAK cause everyone says how brill the mask is and how its changed there lifes!! Why not mine!! im desparate,id seriously poke my eyes out for a good nites sleep!! why does the mask not work for me!! i cant give it a few wks on mask to get used,cause id be in a mental ward b4 then,iv done 7mths with untreated severe sleep apnea,and coped (so im not soft) but 6 days on mask,was bad i couldnt cope!! has anyone else had this ,r am i so different?? all this has happened this wk..... thanks for reading.....paula x x P.S forgot to say im still snoring mega bad with the mask on,hubby says ,and its showing vibrations on the data of the machine x x

[rested gal]

Hi Paula,

Hey, it's going to be ok. You're not a freak -- you're having the same sort of VERY rough start that many new CPAP users have, in one way or another.

The worst thing the medical professionals or home health care equipment people can tell you is, "Give it time...you have to get used to it..." without doing much of anything to help you actually get it all going comfortably. Comfortably enough to "sleep."

The mask is the #1 key, imho, to being able to "do CPAP."

The biggest problems usually are not about the machine, or the pressure. Most people's problems center around the mask. And if the only thing the people who provided your machine and mask can tell you is, "The mask fits. The machine is doing the job. You just have to get used to it...keep trying." they are failing at their job.

Kind people on this forum will help you get the problems worked out. It will be easier to help you if you'll fill out your Profile with the name of the machine and mask you were given. That info will then appear at the bottom of each of your posts so people can see it each time you post. Here's how to do that...

P.S forgot to say im still snoring mega bad with the mask on,hubby says

We'll help you get the "why" figured out after you let us know what mask you have. Gotta be the full name of the mask...not just something like "it goes over my nose." That's why filling out the Equipment stuff in your Profile will help.

Also, do you know what pressure you were prescribed?

And are you using "ramp" to start the pressure lower when you turn on the machine?

If you're using Ramp, do you know what pressure the ramp is set to start out at?

[kteague]

It can be hard for a pollyanna to maintain their persona when dealing with the frustrations of getting off to a troublesome start with CPAP. I've tried a couple masks that if my success depended on using them, it wouldn't have happened.

Rested Gal has got you off to a good start. Be encouraged that there will be things you can do to help things improve.

Kathy

[Sir.Squirtle]

Polly, Godbless I'm having trouble too. I'm on day five and can only tolerate Cpap 2 hours a night if even that. The pressure is a bit much even with a-flex...I have asthma. It takes me a while to get a breathing rhythm going, and when I do, I get tired after a while. Even after I take off the mask, my breathing stays labored like if I'm still having a hard time breathing out. Anyone had this? I'm fighting it too, Polly, so I'm in the boat with you watching the others on land.

[jedimark]

Polly, Godbless I'm having trouble too. I'm on day five and can only tolerate Cpap 2 hours a night if even that. The pressure is a bit much even with a-flex...I have asthma. It takes me a while to get a breathing rhythm going, and when I do, I get tired after a while. Even after I take off the mask, my breathing stays labored like if I'm still having a hard time breathing out. Anyone had this? I'm fighting it too, Polly, so I'm in the boat with you watching the others on land.

It does go away... the key is Persistence.. (I know everyone keeps saying that, but it really is true)

[Drkirishdancer]

Don't worry, I'm a newbie too so we're in the boat together. I've been using my macine for a week now and I'm really trying to use it every night despite being more of a zombie then usual. I was tired before but, this is a whole new level of sloth- I crave sleep. I'm trusting that it will get better- my doctor seemed convinced that, by August when I see him again, I'll have more energy. I'll keep you posted if I start feeling better- I know having a full face mask works better for me (the nasal pillows had me feeling like I wasn't getting a full breathe).

[robysue]

first day of mask and i woke up feeling very very shaky and more tired,i thought my head was gonna explode,felt shakey and ill all day,by day 3 of mask i foned sleep apnea clinic,i was crying saying the mask hurts and i cant cope,they had me in and said everything was ok,im only doin 3 airway collapsed an hr which is normal,by day 5 i was cracking up,cry shaking ,pressurre to my head (unbearable) was on pain killers,light headed,i wanted it all to end,

First of all, I want to assure you that you are NOT the only one who has had this kind of reaction to starting on PAP. While my problems were not "my mask hurts" related, they were severe---severe enough for my husband to insist upon calling the doc's office.

My own story starts with a 2 or 3 month crash&burn that started right with the beginning of therapy. I went from being fully functional, albeit a bit tired (NOT sleepy) during the daytime to being a basket case. Pre-CPAP I was experiencing a fair amount of minor arthritis-type pain and almost daily daylong mild-to-moderate headaches (that turned out to be chronic migraines). In the first two months, I was experiencing severe sleep deprivation due to severe insomnia that settled in on night 3. I was falling asleep constantly and was terrified that I'd fall asleep at the wheel. I was on an emotional roller coaster and in tears much of the time. Between "regularly scheduled" appointments and semi-emergency meetings with the PA, I was at the doc's office twice a month for the first three months of therapy.

By the end of third month, I'd been through two pressure changes, had a third sleep study done, and been switched from CPAP/APAP to BiPAP. The switch to BiPAP was a godsend to me since it positively addressed the constant issue of aerophagia. The insomnia remained, as did the migraines. I'm now 9 months into therapy: I am now pretty regularly starting to feel more like the way I did before starting PAP. And on the occasional day, I can tell some subtle, but important positive differences in how I feel. They start with the fact that my arthritis type pain has completely disappeared.

I tell you all of this not to discourage you, but rather to first to reassure you that you are NOT the only one who has experienced what you're going through (so you're NOT the FREAK you are worried you are) and also to give you hope: If you work hard at making PAP work for several weeks or months, you will eventually get to a point where you can see some benefit to the therapy. You already know your body NEEDS the therapy because of the O2 desats. And you already know the CPAP works in the sense that your AHI has gone from 40+ untreated to around 3 under treatment and that in turn means your body is NOT experiencing the O2 desats when you use the machine. You owe it to yourself and your loved ones to make a serious, substantial, and long-term commitment to making the therapy work for you in terms of your daily life.

night 6 of mask i made the decision not to wear mask and i woke up Great!! Tired but great!! no head ache no pressurre no shakes no lightheaded,felt not ill, so iv not had my mask on for two days now,i know when im asleep im in trouble my sats on the data base is not good,oxegen levels below 85,holding breath for 1min plus,on an average 60 times an hr air collaspe,but cant cope with the mask and how it makes me feel,i will seriously end up cracking up as im more tired on the mask plus ill, its two evils!

This is exactly[/it] the reason that I stubbornly put on that damn mask every single time I wanted to go to sleep: I knew that I needed to make the PAP work for my long term health, and I was terrified that if I didn't mask up and I slept in any fashion resembling my pre-CPAP sleet, that I'd feel GREAT (relatively speaking) and that that would make it near impossible for me to stomach the idea of masking up the next night, and the night after that, and the night after that. So each and every night, I'd tell myself that I could NOT afford to not mask up just for that night because I could not afford to let myself start sliding down that slippery slope of "I don't think I'll mask up tonight because of <fill in reason>": If I had allowed myself to start down that slope, I think I would have completely abandoned PAP by the end of a week or less of sleeping without the mask.

i feel like a FREAK cause everyone says how brill the mask is and how its changed there lifes!! Why not mine!! im desparate,id seriously poke my eyes out for a good nites sleep!! why does the mask not work for me!!

As my story indicates, you are NOT a FREAK. Although I know exactly how you feel: I screamed, "WHY AM I A F**ING FREAK?" to my hubby in the middle of many a very bad night and on a very regular basis during those first few extremely difficult months.

The sad facts are:

While most people tend to respond positively to the mask within the first few weeks of therapy, very, very few people see immediate improvement during the first week of therapy. And almost no-one sees the kind of immediate relief you seemed to be expecting after a mere four or five days of CPAPing. So readjust your expectations: PAP is not a miracle cure for most of us.

As with any kind of medical treatment or therapy, there will always be outliers: People who do not respond to the treatment in the expected fashion. For many medical conditions, there are a variety of different drugs/therapies to try, and if the patient cannot tolerate the side effects of Drug A, there's the opportunity to switch to Drug B and see if it works any better. Unfortunately, however, with severe OSA, there's no real alternative to PAP in terms of quickly and consistently bringing the AHI down below 5 (the normal range). Surgery is very painful, has a success rate of maybe 50%, and "success" is defined as getting the AHI cut in half---hardly "effective" therapy in the sense of genuinely eliminating the OSA. Oral appliances may be effective for mild and mild-to-moderate apnea provided the problem part of the airway is indeed something that can be positively affected by the oral appliance. But again, success is not defined as "getting the AHI down to normal"---it's defined as cutting the AHI by something like 50--75%, which still leaves a person with severe OSA experiencing at least twice as many apneaic epidoses per hour. For the outliers with severe OSA who make a real, honest effort at making PAP therapy work and who are still having severe adjustment problems after several months, sometimes the docs will admit that it maybe better to half-treat the OSA with an oral appliance rather than not treat it at all with a PAP. So accept the fact that you are in the group of outliers for PAP, but don't get let that interfere with the hard work you need to do give PAP a genuine, fair trial (of several months) before simply giving up.

For PAP therapy in particular, there seems to be very little knowledge about why some patients develop severe quality-of-life problems AFTER starting PAP, and thus have a difficult time adjusting to PAP. And it seems as though many docs are not particularly interested in exploring this issue. It is known that quality patient education helps get folks compliant and stay compliant; but quality patient education is sorely missing for most new CPAPers. It is known that a large number of new CPAPers give up way too early in the process, but the speculation on why those who give up do is typically not particularly reflective and has a certain blame the patient undertone to it: The mantra seems to be: Patients give up because they find PAP inconvenient, uncomfortable, and occasionally embarrassing to use. And the "comfort" issues are primarily ones related to mask leaks and mask fit: If the patient tries multiple masks, one should make the PAP comfortable enough to use every night. Don't fall into the trap of believing that mantra and simply deciding "PAP is too uncomfortable to continue and it's ok to give up on it".

Unfortunately, those of us who ARE outliers (and remember you are NOT alone in having the severe negative physical reactions to starting PAP), are pretty much dumped in the deep water and expected to learn how to swim on our own. It is up to US to find a way to make this therapy work so that we can benefit from the very real positive things it does for our bodies in terms of managing the apnea and thus addressing the problems (both current and future) caused by the frequent nightly O2 desats, the frequent nightly arousals, which though we don't remember them put much physical stress and strain on our hearts and lungs since we're essentially in "Fight or Flight" mode all night long. And there are ways of finding our own way of making it work. You've made a start: Post here with your specific problems in trying to cope with CPAP, and you'll get plenty of suggestions to try. You're already getting suggestions---take the time to read them carefully. Many of them may strike you as useless (for now), but some of them will seem reasonable. And if none of the reasonable ideas for tackling a particular problem work, try some of the ideas that initially seemed useless to you---because one of them may provide the key to getting through a particularly difficult problem to resolve.

i cant give it a few wks on mask to get used,cause id be in a mental ward b4 then,iv done 7mths with untreated severe sleep apnea,and coped (so im not soft) but 6 days on mask,was bad i couldnt cope!! has anyone else had this ,r am i so different??

You've had untreated OSA for much longer than 7 months. You've only known about it for 7 months. What triggered the referral for the sleep study in the first place?

As for feeling like you'd be in the mental ward if you continue: Yes, it can feel that way at times for us outliers. In those first two or three months I regularly though that I'd land in a mental ward myself. Because it's tough when you don't respond as expected right away to this therapy that the docs and many, many patients keep telling us will make us feel better REALLY, REALLY SOON.

Remember: For most new CPAPers it takes time to start feeling better. For us outliers, it takes time for us to start feeling as good as we felt before CPAP. That should be your initial goal: Can you make CPAP work well enough that you don't feel any worse than you felt before you started? If so, then CPAP is a big plus because of what it does for your body and it's no longer a big negative in terms of adversely affecting your quality of life.

What to do in order to achieve this goal? First, be open and honest with hubby. Have a heart to heart conversation with him (again) and ask him to pick up as much of the stupid stuff as possible for the next couple of months---things like the cleaning and the cooking and all those other chores we women tend to worry about---so that you can focus as much of your attention on making the CPAP work for you. And tell him that you will unfortunately be very needy for a few weeks---but that you really, truly need to make this work and that you need the extra emotional support as well as the help with all those things in your daily life that now feel out of control.

Second, make a commitment to yourself to NOT give into the dark side: Promise yourself that you WILL mask up each night at the beginning of the night and give it a solid trial.

Third, start addressing mask comfort issues. The mask should not hurt. Also consider whether you've got leak problems and get them fixed.

all this has happened this wk..... thanks for reading.....paula x x P.S forgot to say im still snoring mega bad with the mask on,hubby says ,and its showing vibrations on the data of the machine x x

Snoring may indicate you need more pressure.

[JointPain]

I've been back on the hose for the last two months or so. I was first diagnosed 9-10 years ago, was very compliant for a long time, then gradually became less and less compliant until I had effectively stopped using the CPAP. Bad mistake on my part.

So, I'm not a newbie from the whole "how do I cope with this" perspective, but my body went through some interesting adjustments the few weeks back on CPAP. There were some days I did feel a whole heap better, but in the beginning there were also many days when I was dead tired and really, really wanted more sleep.

My pet theory is that my body was actually getting the effective rest it needed from sleep, as opposed to the trauma it was suffering sans CPAP, and was sending me signals that I needed lots more of that good sleep. One or two nights isn't enough to undo all the sleep deprivation and physiological damage accumulated over years of sleep apnea suffering.

The good news is that that all went away. (Well mostly. Last Sunday afternoon, everyone in the family was exhausted and we all napped for a while, but I was just like everyone else.) People comment on how much better and less tired I'm looking recently. For me this all happened relatively quickly. For a real new CPAP user, it might take longer, even a lot longer, as you've got all sorts of other adjustments to make, both physiological (e.g. breathing with pressure) and psychological (e.g. claustrophobia).

So keep at it. You might need to make adjustments to your mask, pressure, humidity and so on to get the treatment optimized for what you need, but there's heaps of help here on all those aspects.

[ameriken]

My pet theory is that my body was actually getting the effective rest it needed from sleep, as opposed to the trauma it was suffering sans CPAP, and was sending me signals that I needed lots more of that good sleep. One or two nights isn't enough to undo all the sleep deprivation and physiological damage accumulated over years of sleep apnea suffering.

This has been a pretty good thread. And I think I've heard what JointPain said above...something about 'sleep debt' and your body actually feeling more tired after starting on therapy? Maybe it's recognizing what real sleep is and is starting to crave it, so instead of feeling better, you actually feel just as bad if not worse?

I'm also a noob to the whole cpap thing (actually bipap). I've got both OSA and CSA and other breathing disorders that have been plaguing me for the past few years. I just finished my 14th night on the machine and have not had any problems whatsoever adjusting to the machine or the mask and I'm pretty much able to sleep through an entire night. I actually get about 8 to 9 hours of sleep every night (the same as prior to the machine).

What I have had concerns about, which this thread seems to address, is how quickly one can expect to be running marathons, so to speak. Of course, I don't really mean that however I thought I'd be feeling far better than I am.

So I guess it must be pretty normal to take take a while before feeling closer to 100% (assuming one can tolerate the mask and machine)?

[Pugsy]

What I have had concerns about, which this thread seems to address, is how quickly one can expect to be running marathons, so to speak. Of course, I don't really mean that however I thought I'd be feeling far better than I am.

I am still waiting for that marathon. Doubt it will ever happen but now I am satisfied with waking up and not feeling like I just ran the marathon.

Some people are lucky and see a night/day difference in how they feel. Others get only tiny glimpses or barely discernible changes. Sometimes there are simply other factors unrelated to OSA that the cpap machine can't fix.....meds, pain, other health issues, hours of sleep, fragmented sleep and many, many other things that affect how we feel during the day.

[pollyanna40]

Hi thank you so much,really thank you,some replys brought tears to my eyes!! i did really have high expectations about this miricle cure machine!! its not! im understanding now,.but still the thought of putting it on,really fills me with dread,iv got an appointment with my consultant tuesday and another appointment with the ENT (ears nose throat)Fri they r saying im having a camera up my nose to see if all is well, its hard i really dont know wot to think ,wish i could wave a magic wand and all be well,7 mths ago my hubby kept waking me up cause i wasnt breathing that was my inital go to the docs,but iv suffered with snoring and tiredness for yrs!!my hubby is great and very supportive, soz its toke me ages to reply,finding my way round this site,,im gonna do my profile i need to look at my instuction leaflet ,iv not a clue wot machine im using..lol..will fill profile in later r tomorrow!! u all seen to know wot your on about iv not got a clue, im very glad if found u all,i need this,cause they way i feel now,im not in a good place!! im a strong postive outgoin fun lively person,(usually) i just want to be normal,i dont feel normal at all ..Thanks to everyone who has replyed and cared!! paula x x x

[ameriken]

Thanks Pugsy, I hope it does eventually get better. I'm tired of being tired

[pollyanna40]

Hi Paula,

Hey, it's going to be ok. You're not a freak -- you're having the same sort of VERY rough start that many new CPAP users have, in one way or another.

The worst thing the medical professionals or home health care equipment people can tell you is, "Give it time...you have to get used to it..." without doing much of anything to help you actually get it all going comfortably. Comfortably enough to "sleep."

The mask is the #1 key, imho, to being able to "do CPAP."

The biggest problems usually are not about the machine, or the pressure. Most people's problems center around the mask. And if the only thing the people who provided your machine and mask can tell you is, "The mask fits. The machine is doing the job. You just have to get used to it...keep trying." they are failing at their job.

Kind people on this forum will help you get the problems worked out. It will be easier to help you if you'll fill out your Profile with the name of the machine and mask you were given. That info will then appear at the bottom of each of your posts so people can see it each time you post. Here's how to do that...

P.S forgot to say im still snoring mega bad with the mask on,hubby says

We'll help you get the "why" figured out after you let us know what mask you have. Gotta be the full name of the mask...not just something like "it goes over my nose." That's why filling out the Equipment stuff in your Profile will help.

Also, do you know what pressure you were prescribed?

And are you using "ramp" to start the pressure lower when you turn on the machine?

If you're using Ramp, do you know what pressure the ramp is set to start out at?

[Pugsy]

Thanks Pugsy, I hope it does eventually get better. I'm tired of being tired

I hope you do see marked improvement. It does wonders for the morale boost we sometimes need to keep wearing this stuff night after night.

There were other small improvements for me.
Nighttime pee breaks went from 3 or 4 to 0.
Morning headaches reduced in number and severity.
The need to nap within 2 hours of waking went away but still needed to nap in afternoon some.

After 2 years no miracle marathon feeling but I also have other issues that would probably mess with how I feel even without OSA. Cpap doesn't fix those things. In my case just another cold hard fact of life. I turn pea green with envy when I read those "over night miracle" stories. I am content knowing my heart isn't stressed with desats and perhaps I would feel much, much worse if I didn't mask up each night.

[pollyanna40]

Hi Paula,

Hey, it's going to be ok. You're not a freak -- you're having the same sort of VERY rough start that many new CPAP users have, in one way or another.

The worst thing the medical professionals or home health care equipment people can tell you is, "Give it time...you have to get used to it..." without doing much of anything to help you actually get it all going comfortably. Comfortably enough to "sleep."

The mask is the #1 key, imho, to being able to "do CPAP."

The biggest problems usually are not about the machine, or the pressure. Most people's problems center around the mask. And if the only thing the people who provided your machine and mask can tell you is, "The mask fits. The machine is doing the job. You just have to get used to it...keep trying." they are failing at their job.

Kind people on this forum will help you get the problems worked out. It will be easier to help you if you'll fill out your Profile with the name of the machine and mask you were given. That info will then appear at the bottom of each of your posts so people can see it each time you post. Here's how to do that...

P.S forgot to say im still snoring mega bad with the mask on,hubby says

We'll help you get the "why" figured out after you let us know what mask you have. Gotta be the full name of the mask...not just something like "it goes over my nose." That's why filling out the Equipment stuff in your Profile will help.

Also, do you know what pressure you were prescribed?

And are you using "ramp" to start the pressure lower when you turn on the machine?

If you're using Ramp, do you know what pressure the ramp is set to start out at?