Just diagnosed and on ASV - PLEASE tell me things get better

Hi all. I'm a definite newbie to the apnea thing, so I'm still learning all the lingo. I was diagnosed 2 weeks ago with severe complex sleep apnea. I was set up with an ASV machine and have been sleeping [if you can call it sleep] with it for a week now. I was happy that Google led me to this discussion forum because I'm hoping to find some real-world assurance that I will someday get used to this thing and finally, finally get a good night's rest.

My 3-night sleep study from hell revealed that I experience an average of 96 events per hour, which apparently is pretty bad. Bad enough that the sleep people didn't even wait for me to consult one of their doctors before they set me up on the machine. My first actual consult is next week. I didn't look at my machine's make and model before I left today, but it was extremely expensive. My pressure is set to 13, ramp set to 5 minutes. I use a nose-only mask, which may not be the best idea (I'll get to that in a minute).

Having not slept well for years, I was excited to be on the machine, expecting to take to it quickly and start waking up refreshed in the morning. But so far, only frustration. Overall I'm having trouble dealing with the fact that "sleep" has now been completely redefined for me, both in concept and practice. Prior to my diagnosis (and yes, considering I was obviously not sleeping well before), sleep was solace. It was an organic thing: nap on a flight, go to sleep snuggling my wife or baby daughter, fall asleep watching infomercials, etc. Sleep has now become very technical, and only possible in one position, under one set of circumstances, and in the one place I keep this machine. And I have this thing on my face. Oh, and if my mouth happens to open at any time, I'll shoot up gasping for air. Awesome.

The sleep people told me I'll eventually get used to this thing and perhaps even addicted. My sleep will be so wonderful, they promised, that I'll get over the fact that I'll need to lug this thing when I travel, or that backpacking in the mountains is no longer an option for me.

The ramp is nice. It's easy going for the first few minutes, but as the pressure ramps up I find myself fighting panic attacks. I eventually succumb to the machine and fall asleep around midnight, but my wife says she hears me gasping thru my mouth periodically. I wake up at 4:30 am almost on the dot *every* night. Why 4:30 every morning? No clue, and no, I don't feel the least bit refreshed. The first few nights I put the mask back on and tried, unsuccessfully, to fall back asleep with it. The last few times I've shut the machine off, tossed the mask, and slept til my usual wake time. Not rejuvenating by any means, but at least I'm free of that machine and can fall back asleep.

I'm sure I'm not alone. Will I ever get used to this manner of sleep? Can anybody offer any advice? Should I try the full face mask? I used the full mask for my 3 night study and did not have a good experience. The nose mask is much more comfortable. But what about the mouth thing? Doesn't anybody ever need to cough at night? How does this all work if you have a cold?

As you might surmise, I'm a very, very tired guy that really could use some reassurance and advice.

Thanks!

Welcome to the forum Sleeplease. You are in good hands here. If you rewind the tape for me 6 months. I was in the same place as you.
It will definately get better. You will see there are alot of nice and helpfull peple here that can help you. They will be along shortly I'm sure.

Hi there and welcome to the forum.

Your experience sounds similar to mine. I actually have REAL central apnea, with little obstructive. doctors don't know what is causing it.

Anyways... the year of 2012 and 2013 I started having bouts of waking up gasping. Mostly as I was falling asleep, and occasionally during the night. It wouldn't go away and I became scared. I did a lot of research and actually self diagnosed myself with Central apnea. After seeing 2 doctors who said they didn't think i had apnea, i went to the sleep doctor for a consultation. The doctor laughed when I told him i thought i might have central apnea. he literally told me that he was almost certain i didn't and didn't recommend a study, but i decided i wanted to have one.

Had the sleep study, which was hell. 02 saturation went down to 80%, and was told i definitely had apnea. Mostly central with a little bit of obstructive.

I got my machine and it took me a good month to get used to it. I was in a severe state of depression for about 2 weeks. Sleep had always been something i took for granted. i looked forward to sleep. it was safe. Starting CPAP(asv) completely redefined what sleep meant to me. I could no longer fall asleep on the couch. can't doze on an airplane, can't go camping, etc etc. My body also fought the machine for a while too. My fiance would also report hearing me gasping with the mask on at time. I think my brain and body had to re-learn to work with the machine, and it took a while.

This was all late last summer. now i am sleeping better. i still have some fragmented sleep and it SUCKS that I can only sleep in one location and have to rely on a machine, but it is better and I do usually feel better. It should get easier for you, you just REALLY need to give it your all. you might struggle and it might be one of the hardest things you have to deal with, but do it for yourself and your family.

Incidentally, i had a bad night last night....

Masks are a very personal thing and the key to successful therapy.
A mask that I love you may hate. A mask that I love this week, I may hate next week.

You will need to share a lot more info with us before we can help.
The make and exact model of the machine and humidifier you have.
The make and model of your mask.
Heated hose?
Your exact machine settings. If you have an ASV machine there will be more numbers in the settings.
And more info on your sleep study when you get it.

My AHI was only 84 in my study and now on ASV it is down to 1.4.
I still get up for a bathroom brake most nights but get 7 or 8 hours sleep per night.

You will want to spend a few hours reading the reviews of different masks on our sponsors web site, to educate yourself on which mask might work better for you. I have tried about a dozen and switch between them still. I am always looking for that perfect new mask.

icipher, we definitely have similar situations. I forgot the exact numbers, but mine is also mostly central and some obstructive. Similar sleep study experience, too. As I read your response and started identifying with you, I was hoping you'd say that after nearly a year, you have done a complete 180, are sleeping wonderfully, and are totally over the frustration from the change. The fact that after all of that, you still have that frustration, fragmented sleep and bad nights is disappointing. Don't get me wrong-- I very much appreciate your response and am ecstatic that I've found somebody almost immediately that I can relate to. I just find myself at this point wishing the long term outlook was brighter...

Welcome to the forum.

This therapy is a challenge even when only doing the cpap single fixed pressures. You got "lucky" in that you need a special machine which comes with its own challenges.

Some people can use these machines with nasal masks...I do ( a nasal pillow mask with great success and I see pressures above 20 often)..but you will have to learn to keep your mouth closed and that's a challenge which is common no matter what machine or pressure is used for lots of people.
If you can't keep your mouth closed for the bulk of the night then you would need to consider a full face mask.
Not only does the air escaping your mouth wake you up...it is also allowing precious therapy to flow right out the mouth.

Can you normally breathe through your nose only during the day or do you have problems with chronic nasal congestion or have trouble getting enough air through the nose only from maybe a severely deviated septum? If you can normally breathe through your nose just fine then it may be possible for you to learn to keep the mouth shut or maybe keep it shut with some sort of chin strap as a reminder. If you can't breathe through your nose and just have to mouth breathe due to a physical impairment then you will have to go the full face mask route. I don't know about you but if I can't breathe easily...I don't sleep so great.

Regarding colds and the nasal congestion that goes along with them...if I can get my nose open a little I can usually sleep "okay" when I have a cold. The humidified air helps and while not the greatest of sleep..it's about as good as I would sleep if I had a cold and wasn't on cpap therapy. We manage to get it done...and yes, people cough and if they use a full face mask they just either cough into the mask or pull it away from the face for the cough.
I have never had nasal congestion so bad that I couldn't breathe through my nose to some extent with a little help from saline spray or a tiny bit of Afrin when I have had an upper respiratory infection.

So yes, you will get used to it but it won't be without challenges. It will get easier I promise. Some people take to this therapy like a duck to water but those people are actually in a minority. For the majority of people it takes a lot of work and usually means overcoming various hurdles along the way. Just remember that any issues you may have .....a lot of other people have had the very same issues and they were able to successfully conquer those issues.

SleepPlease wrote:I wake up at 4:30 am almost on the dot *every* night. Why 4:30 every morning?

Is this new since just starting the machine or did you wake at this time prior to the start of this therapy?

When you get it figured out please add your equipment to your profile. Your stated pressure settings don't quite go along with what I would expect from an ASV machine so maybe there's more to it.

SleepPlease wrote:The last few times I've shut the machine off, tossed the mask, and slept til my usual wake time. Not rejuvenating by any means, but at least I'm free of that machine and can fall back asleep.

This is a bad, bad habit to get into and bad habits are easy to make and difficult to break. You won't ever start to feel better doing this. I do understand where you are coming from though so I won't harp on it right now after just a week of therapy but just remember...bad habits are hard to break.

SleepPlease wrote:icipher, we definitely have similar situations. I forgot the exact numbers, but mine is also mostly central and some obstructive. Similar sleep study experience, too. As I read your response and started identifying with you, I was hoping you'd say that after nearly a year, you have done a complete 180, are sleeping wonderfully, and are totally over the frustration from the change. The fact that after all of that, you still have that frustration, fragmented sleep and bad nights is disappointing. Don't get me wrong-- I very much appreciate your response and am ecstatic that I've found somebody almost immediately that I can relate to. I just find myself at this point wishing the long term outlook was brighter...

To elaborate, I would say that 75% of my nights are great. I no longer feel CONSUMED by this as I did when i started therapy. I will often go 2 weeks with all great nights, then i'll have that one night where I wake up once gasping with an accelerated heart rate. It's hard for me to brush these nights off as a person who thinks logically would want to know the root cause, but doctors either don't know, don't care, or don't think it's anything to worry about so I just keep going.

Feel free to message me here if you need any further support or have any other questions. It was a major struggle in the beginning for me, so I want to be a resource for anyone who is new to this.

Pugsy wrote:Can you normally breathe through your nose only during the day or do you have problems with chronic nasal congestion or have trouble getting enough air through the nose only from maybe a severely deviated septum?

I think I'm a nose breather in general. At least I don't recall any times throughout the day where I have to open my mouth to breathe. However, I am asthmatic and tend to clear my throat a lot during the day. Not sure if I did so at night before using the machine.

Pugsy wrote:Is this new since just starting the machine or did you wake at this time prior to the start of this therapy?

This is new to the machine. My normal wake time is 6am, and it takes me 3 alarms to wake up. Without alarms I wouldn't wake up on my own until 10am. But since the machine, it's 4:30 on the dot, no alarms. Weird.

Pugsy wrote:When you get it figured out please add your equipment to your profile. Your stated pressure settings don't quite go along with what I would expect from an ASV machine so maybe there's more to it.

Will do.

Pugsy wrote:This is a bad, bad habit to get into and bad habits are easy to make and difficult to break. You won't ever start to feel better doing this. I do understand where you are coming from though so I won't harp on it right now after just a week of therapy but just remember...bad habits are hard to break.

The way I see it, I have a job to go to in the morning with people who expect me to work, make decisions, hold meetings, etc. Some sleep-- even less-than-productive sleep-- is better than none at all. I see your point, though. As long as I try to steal freedom now and again, I'll never get used to the bondage.

SleepPlease wrote: The sleep people told me I'll eventually get used to this thing and perhaps even addicted. My sleep will be so wonderful, they promised, that I'll get over the fact that I'll need to lug this thing when I travel, or that backpacking in the mountains is no longer an option for me.

The ramp is nice. It's easy going for the first few minutes, but as the pressure ramps up I find myself fighting panic attacks. I eventually succumb to the machine and fall asleep around midnight, but my wife says she hears me gasping thru my mouth periodically. I wake up at 4:30 am almost on the dot *every* night. Why 4:30 every morning? No clue, and no, I don't feel the least bit refreshed. The first few nights I put the mask back on and tried, unsuccessfully, to fall back asleep with it. The last few times I've shut the machine off, tossed the mask, and slept til my usual wake time. Not rejuvenating by any means, but at least I'm free of that machine and can fall back asleep.

I'm sure I'm not alone. Will I ever get used to this manner of sleep? Can anybody offer any advice? Should I try the full face mask? I used the full mask for my 3 night study and did not have a good experience. The nose mask is much more comfortable. But what about the mouth thing? Doesn't anybody ever need to cough at night? How does this all work if you have a cold?

As you might surmise, I'm a very, very tired guy that really could use some reassurance and advice.

Thanks!

Welcome to the board. Sorry you had to join us.

The sleep people are probably a little too optimistic, but most of us do end up loving the machine in the end if we stick to it, get good advice, and work through the problems. This board is a great source for working through the problems that the medical mafia doesn't handle.

For some people, ASV machines have a difficult adjustment period. If you're going into ASV mode the machine so to speak decides when it's time to inhale, even though your CSA affected brain doesn't think so. It takes a while before your brain gets adjusted to the idea of the machine being in charge. For most, eventually, someone throws a switch in your brain and a miracle happens and you quit fighting the machine.

We can give you better info if we know what machine you have. What does it say on the top of the blower unit? Philips Respironics, ResMed? Plus whatever other words you see, especially near the power button or display?

Try to avoid the FFM (Full Face Mask) if you can. Some people use a chin strap to prevent mouth breathing. I make my own from a 3 inch Ace brand bandage wrapped 3 times around my head and secured into a loop with saftey pins. There are also commercially made chin straps.

However, some people do need FFM's.

PS... for context.

I am an otherwise healthy 30 year old male with no history of health problems. SO you can imagine how alienated I felt, thinking i was too young to have to deal with this and not knowing ANYONE with a similar condition.

I can say though, as a child, i was overweight and snored all through my early life until 16 when my tonsils were out. So I am guessing I had obstructive apnea to some degree for quite a while. I lost a lot of weight at 18. My weight loss which was pretty intense, I developed occasional heart palpitations i can likely attribute to the diet pills i took in conjunction with diet and exercise.

I was scared about my CSA being heart related, but I've had a couple echocardiograms and stress tests over the years which come back completely fine.....

archangle wrote:

SleepPlease wrote:
Try to avoid the FFM (Full Face Mask) if you can. Some people use a chin strap to prevent mouth breathing. I make my own from a 3 inch Ace brand bandage wrapped 3 times around my head and secured into a loop with saftey pins. There are also commercially made chin straps.

However, some people do need FFM's.

Why do you advise against a full face mask? Just curious what your reasoning is.

I use one as I have a deviated septum and can't breath well through my nose at night.

icipher, I hear you there too! I'm an otherwise healthy 37 year old. Sleep apnea has always carried a stigma for me since the only people with it I knew growing up were older and overweight by behavior. I was actually a bit embarrassed to tell anybody about my diagnosis. I've since learned that it can happen to anybody. I'm also worried about why my brain is issuing no-breathe commands to my lungs.

archangle, I actually brought the SD card from my new machine to work today to upload my stats to the website. Would have been nice if I had remembered to also bring the paper with the website on it, but I've got the SD card. Maybe if i start sleeping I'll also start remembering stuff?:)

It says Philips Repironics P-Series. I'll grab my manual when I get home.

I'd like to avoid the full face mask if at all possible. I used several during my sleep test and found the experience fairly horrible. The nose mask is much less cumbersome. I feel less like Darth Vader and more in control. It fits better and is generally less annoying.

SleepPlease wrote:The way I see it, I have a job to go to in the morning with people who expect me to work, make decisions, hold meetings, etc. Some sleep-- even less-than-productive sleep-- is better than none at all. I see your point, though. As long as I try to steal freedom now and again, I'll never get used to the bondage.

That's why I said I do understand and why I said I wasn't going to bust your... you know whats... too much after just being on the machine a week.
Stealing the freedom becomes a real slippery slope though. Just so long as you are aware of the dangers of that slippery slope and the lure of it. Don't let that little devil on your shoulder keep winning the argument or he will become a permanent fixture on your shoulder and all sorts of bad things can happen when he does that.

Let's work on your individual issues as best we can so that you don't look to all this as "bondage" and you are no longer needing or wanting to go down that slippery slope.

Do you take any meds of any kind even OTC? If so, what? Dose? When?
What specifically are your issues now?
Falling asleep...that one I assume?
Staying alseep...that one I assume?
Do you have many awakenings between the time you go to sleep and the time you wake up at the 4:30 time frame? If so, approx how many and do you know of any specific reason as to why?
Mask comfort?

When you get a chance look in my signature line for information on the software that can be used with your machine.
It's going to be a Resmed or Respironics machine I am sure and there is easy to obtain and use software available. Let's get it and use it. For ResMed...you need ResMed's ResScan..send me a PM and I will help you find it..you can also use SleepyHead with the ResMed machines. You can use either or both..whatever you like to do.
For the Respironics machine..you can also use SleepyHead and then there's the Respironics Encore software. I can also help with that one but I also need to know what operating system is on your computer as not all versions work on all Windows OS.

If you use a Mac...SleepyHead is your only option unless you have some sort of virtual Windows on your Mac.

Using the software would allow for evaluation of therapy itself...like are leaks possibly a factor in therapy quality or maybe sleep quality. Also tell us how long you actually stay hooked up in "bondage" You would be surprised at how many times people tell me "I use the machine 6 or 7 hours a night" or "I sleep 7 to 8 hours a night" and the reports show an average of 5 or so. So either they aren't using the machine like they say or they are sleeping without the machine and not telling us.
For right now...all I would really want to evaluate is leak...we already know you aren't getting optimal hours on the machine and no sense on harping on that right now.

Finally...when is your follow up appt with your doctor to discuss therapy quality and effectiveness? Soon or far off or not scheduled yet?

Edit: I see you have your SD card with you at work...what sort of computer do you use?
You can find SleepyHead here
http://sourceforge.net/projects/sleepyh ... s/Testing/
You've got a Respironics machine...so you would need Encore Pro 2.13 I suspect if you have the model 960 ASV machine. Encore Basic won't work with that machine. Send me a PM if you want it...it's a huge PITA to use though. I would suggest starting with SleepyHead which is much easier even if a little buggy.

Do you take any meds of any kind even OTC? If so, what? Dose? When? Lisinopril, 20mg; Excedrin every morning because I wake up with a pounding headache.

What specifically are your issues now? I didn't actually have any sleep complaints. I went to my doctor about what feels like asthma: out of breath easily, constant tickle in my throat, need to clear my throat often. Doctor immediately recommended the sleep study.

Falling asleep...that one I assume? I'm dead tired all the time. Sometimes tough to make it thru the work day without falling asleep. I spend most lunch breaks (15 min) sleeping in my car. I choose sleep over eating lunch or any other activity.

Staying alseep...that one I assume? Absolutely no problems staying asleep. If I laid down right now I'd fall asleep in 10 seconds flat and stay that way for a solid 8 hours.

Do you have many awakenings between the time you go to sleep and the time you wake up at the 4:30 time frame? None.

If so, approx how many and do you know of any specific reason as to why? Not really. I wondered if it was nature calling so I've paid attention the last couple days. That's not it. I don't wake up gasping so it's not a mouth issue. And it's not a panic thing. At the moment I wake up, I'm still in sync with the machine. It's almost how I imagine a natural waking is for normal people-- except the sleep seems to have been non-restorative. All I know is that my eyes pop open at 4:30 and my first inclination is to rip the mask off and toss it off a 50 story building. So it could be a mask comfort issue, although I chose from a number of masks and this one was pretty darn comfortable. It may just be that my body gets sick of wearing it. Since I've not being on it long enough to realize any benefit, it still is very much a bondage situation. Maybe my soul is rejecting it and it takes my body a good 4 hours to follow suite:)

By the way, I really appreciate all these responses. What support! I already feel better. I hope that once I get used to this new life, I can also help others cope.

By "what issues now" I guess I should clarify...what issues related to how come you can't sleep with the mask/machine. What is making you think "bondage"
Trying to isolate whatever it is that is a problem causing you to not sleep so great with the machine and hopefully fix it.
So what issues related to therapy..not so much the issues that caused you to get here in the first place.

SleepPlease wrote:It's easy going for the first few minutes, but as the pressure ramps up I find myself fighting panic attacks. I eventually succumb to the machine and fall asleep around midnight, but my wife says she hears me gasping thru my mouth periodically. I wake up at 4:30 am almost on the dot *every* night.

This statement above lead me to believe that you had trouble falling asleep with the machine and of course the wake up at 4:30 means trouble staying asleep since you wake up and don't report being wide eyed and bushy tailed at that time.

Since you say you don't remember awakenings between time falling asleep and 4:30...that's at least one less thing to have to worry about.
4 1/2 hours of sleep (assuming the midnight is common) isn't enough to expect to feel better. I wouldn't expect you to be wide eyed and bushy tailed at that time.
Your body may be in a habit of sleeping in blocks of time...and that 4 1/2 hours may be a habit.

How long would you estimate it takes you to fall asleep?
And when is that follow up appt?

Oh...the headaches...those should abate with optimal therapy but they won't until you don't go back to sleep without the mask and machine. I had those killer headaches myself. It's from the imbalance between O2 and CO2O and when you sleep without the mask and machine...those centrals are messing with your oxygen levels big time. Every time you go back to sleep after removing the mask....you know what happens. We don't get any credit for 4 hours of use...it goes back to like we didn't use it at all in terms of what the body does and remembers.
The killer AM headaches and peeing every hour all night long were the first 2 symptoms of OSA to go away once I got my therapy tweaked and slept decent number of hours of sleep..using the machine. Energy levels...now those improvements were slow to come. It will be 5 years the end of this month. I still don't have the energy I wished...but I am coming up on my 62nd birthday and my body is beat all to hell and optimal therapy can only do so much. I do feel a lot better than I did or would do if I didn't use the machine though.