New to this. My experiences...

I have always been a strange sleeper. When I was young I fell out of the top bunk of a bunk bed onto solid concrete and didn't wake up. I also slept through an entire Saturday. I'm currently 23 and when I started college I began to notice I simply needed much more sleep than others. I've always been a night owl as well.

One of the biggest blocks to figuring out what's going on has actually been my dad. He's an Emergency Room doctor, so of course I approached him with my sleep issues. I'm a night owl and I like 10-12+ hours of sleep a day if I can get it. When I'm on an 8 hour a night schedule I really only last 2 or 3 days before crashing and sleeping in class/on the job.

His answer was simple. "You just need to maintain a normal schedule. You can't stay up all hours of the night, and you need to force yourself up when the alarm goes off." Internally I knew he was wrong, because my alarm clock is made for deaf people. It vibrates the bed, flashes lights at me, AND has adjustable pitch, and I STILL don't wake up. For as long as 4 hours of it. I noted to my dad that as lazy as I can be, I really think it's more than that.

So, he stayed up for an hour or two and listened to me sleep (without my knowledge). When I woke up he told me my breathing sounded normal and that I don't have Sleep Apnea. Ok, that was easy enough. Must be something else.

Of course my friends/significant others that have shared my bed had a different story. One of my friends said he "feared for my life" and shook me to wake me up to "get me to breathe". So now I began to wonder if my dad, the knowledgeable doctor, had ulterior motives for my magical non-diagnosis.

I brought it up with him again, and he basically said, "Oh, so you think I can't do my job, well FINE, talk to a sleep doctor and let me know when he says I'm right." So I went and talked with the sleep doc. He scheduled a sleep study. It was a pretty hellish night because their bed made my back hurt, but I'm glad I went. I stopped breathing 37 times an hour.

Apparently I have very large tonsils, and the doc thinks that taking them out would help me some, and probably reduce CPAP pressure needed, but that barring a miracle I'll always need a CPAP. So, I go to my dad with the most non-inflammatory "I told you so" I could come up with and now he's going on and on about how I don't want CPAP, how it's a horrible treatment that doesn't do anything blah blah blah.... He recommends getting my tonsils out which I will do, but basically he's trying to convince me to not ever start with a CPAP because "You won't like it". My favorite comment of his for the conversation was "You might start using it if it helps you sleep." Well, isn't that what they're supposed to do...? Why do you think people strap themselves to air compressors in the first place dad? Maybe it....I dunno....helps them sleep?

Unfortunately for him, I know there's something wrong with me, and I am very motivated to fix it. He's great at pulling bullets out of people, but since there's no board through my chest, he doesn't see that something's wrong. Basically I think he's in denial and really doesn't want his son to have to be strapped to a vacuum cleaner every night for the rest of his life. That's noble, but I would rather that than feel what I'm feeling currently.

I have been AMAZED with my local docs after reading the horror stories on this board. I was scheduled for a separate titration sleep study (since they didn't have the time to titrate me in the last one) and my logic went something like this:

Hey, I'm planning on getting an APAP anyway, so why waste time/money getting titrated when the APAP will find the right number by itself?

What inspired me to write this is that I just called them to ask if we should cancel the study and I asked for a specific model of APAP. The response was, "Yeah, you won't need to have the second study, our supplier has had that model for a good while, so I doubt you'll have any trouble getting it. Insurance may want you on a normal CPAP or refuse to reimburse the APAP, but we'll fight that if/when it happens. I'll put that specific model on the prescription. Expect them to call you to deliver it." I didn't even have to ask them to put it on the prescription!

So, I'm really glad I'm taking a proactive stance in my treatment. If not, I would have waited another week to go back in for another not-so-fun night at the sleep lab just to have the same end result of being on an APAP. I'll let you know how mask selection and my first night go when I get there.

blarg wrote:So, I'm really glad I'm taking a proactive stance in my treatment.

Blarg, what an extremely interesting post.

I'm glad you did what you did.

Do keep us posted on how it goes. It's obvious you're gonna do extremely well. Your dad, despite what he thinks about "cpap", raised a smart son.

Yeah, there's a lot of denial out there. And still a lot of misunderstanding about OSA, even among very intelligent good doctors.

Thanks so much for the compliments. I will definitely keep you all posted as things happen.

At age 23 you are way ahead of the curve there. When I was 23 I was ... uhhh .... well let's not talk about that ... point is you are off to a good healthy start to taking great care of yourself.

Best of luck and welcome to the club!

blarg, welcome to the board! Nice to see a young man take charge of his treatment in the face of adversity! Well done!

One question came to mind. You didn't say which APAP specifically you were considering. If you're going to go that way, without a titration study, you'll probably get the best "bang for the buck" by getting an APAP that has reporting capabilities.....and not just compliance reporting, but AHI, pressures, etc. So you might want to double check the APAP you're considering. I use the PB 420E and the Silverlining software. Lots of folks here use the Remstar machines and the Encore Pro software (excuse me if I've got the model brand wrong, ya'll! ) But the important thing is to be able to monitor what's happening with yourself AHI-wise and pressure-wise, not just "The APAP was used for X hours during this reporting period."

Best of luck and let us hear how you're doing!

Kajun

TXKajun, I've already ordered the reader and software.

I'm going for a REMstar Auto with CFlex + HH. Might as well start with a comfortable machine, no? And I don't like the new HH design on the M-series, so I'm specifically asking them for the older unit.

And the current situation is that they're "not sure" if my insurance will cover the auto for permanent use. I've already made my list of questions to badger them with when they call me back and tell me it's not covered...lol. At least my experience with insurance companies thus far is that if it's in a gray area they tend to error on the side of $. One interesting thing to note is that the DME has older refurbished CPAPs (basically everything pre-CFlex) under 1k hours for 200 bucks cash for backups. They also like to work with Respironics, so I got lucky in that I was scheming for one anyway.

Lol, just got a call from the DME. "We'd like to bring out your medical equipment. I have an opening on the 18th..." I said, "Well, sooner is better, any cancellations?" "We can be out tomorrow between 3pm and 5pm." "Sounds great, and just out of curiosity, do you know which model you are bringing out? There was some contention over the exact model..." "We are bringing an Auto CPAP with CFlex." "Alright, thank you very much." "See you tomorrow."

If my first night goes this easily then I'll laugh until it hurts.

If it's an M-series I really don't care either, I just wanted auto with C-Flex. I'm rather happy this is all going so smoothly.

Good for you! When do you expect to take up the issue of the tonsillectomy?

Very Nice!!! I'm sure you'll be very happy with your machine. I love mine. You have a great attitude and will do quite well! I wish you much luck and good sleep with your machine. I didn't notice if you said what mask your getting. Be sure to let us know what happens.

Brenda

PS try to get them to leave the provider manual!

I'll probably get sliced and diced over christmas break while I'm visiting my parents. My dad is amazingly good at getting me under knives/poked/prodded/stabbed/whatever very quickly. It helps to have a doctor dad who can call favors in.

So I guess now the only question is if they'll let me keep the tonsils. lol.

Oh, that and the mask. I have some funds on my own, so I figure I'll whine at them for an Activa when they get here and if they have major problems with that then I'll try on everything they've got until I get one that I like. They are cool enough to offer a CPAP/BiPAP walk in clinic on weekdays, so all I have to do is show up and slam an Encore printout on the desk that shows I'm leaking if I am to get a new mask. That or just whine. Beyond that I can buy my own and/or wait for the 6 month mark if there's any issue.

Just another welcome, and a commendation on your determination to do what's best for yourself even though pursuing this was probably a bit uncomfortable. Your father, as a doctor, is not unusual in not having a good working knowledge of sleep apnea. I do give him credit for at least trying to observe you sleeping. Too bad he picked a block of time that was not representative of your overall sleep breathing. Some people even get their sleep apnea missed during sleep studies for reasons such as they only do it when sleeping on their back, after alcohol or meds, in certain stages of sleep, or they didn't sleep enough during the study to capture it. As an emergency physician, I wonder if he is aware there's a good chance that some of the heart attacks and strokes seen in ERs on night shift could have been triggered by sleep apnea. As you proceed in your treatment, be prepared for him to go thru some internal struggles with this, because he has to face the fact that he missed his own son's diagnosis, and may feel he's lost favor in your eyes. That may manifest as continued denial or defensiveness, but I hope he soon gets past all the side issues and sets out to become more knowledgeable and your greatest cheerleader in your treatment efforts.

About those efforts, titrating your pressure with the autopap will probably work out just fine but require some time tweaking and testing. With a titration night at the sleep center, in one night you have most of your answers, and can be assured that you aren't one of those folks who have centrals with higher pressures. And can see before making a purchase if maybe a bipap would better suit your needs, or even try more than one mask. Just some things to consider, though you probably already have. You seem to have a good grasp of your situation, so you are primed for success. Best wishes. Oh, and if by some chance you continue to have excessive sleep issues a few months down the road after your therapy has been tweaked and perfected and you've caught up on your rest, consider the possibility of other influencing conditions or even additional sleep disorders. But let's hope you're a new man in the very near future.

Kathy

Blarg.....I think you'll find that figuring out "which mask is best for you" will be the biggest difficulty you'll experience. With software.....and a tweaked mask, you'll do well. You have the motivation....and you're on the right track.

The Tech who worked for the ENT I went to....gave me some sort of odd-ball foreign (read "cheap") mask for my titration study. I wore it w/o hose for a week to get used to it before the study......then, used it with my M-series for another week before the bridge of my nose "wore out", got bloody, and wouldn't heal.

When I took the mask back, he handed me a CL-2......with hardly any help or fitting.......and I learned how to make it work for me....on my own.....by reading what the "old heads" have to say on this forum.

I would not have achieved success without them. You'll find that Rested Gal is a "jewell"........sit at her knee and learn from the master. As you read along, you'll find others in the "master" class. All will be helpful.

Also, if it turns out to be an M series, make sure you put it on or in somthing in case it is one that wants to leak.

I would hate to see another person with a ruined nightstand or floor.

Thanks so much for all your encouragement and positive words. I've got distilled water at the ready now, and I'm looking forward to tomorrow night.

It's crazy, I had my sleep study on the 7th, and it looks like I'll have my APAP on the one-week-iversary. I had my first appointment ever with this doc in late November. I'm still surprised it all happened so fast.

Very nice posts, blarg! Why do I get the distinct impression you're going to continue to fly through the learning curve at warp speed, and then educate your father about our disorder? In turn, he just may pass that information to his colleagues.

Regarding that need to sleep more than twelve hours, prior to CPAP treatment. Quite a few posters have mentioned that as well. Sleep architecture can get so deteriorated with untreated apnea that restorative sleep simply does not occur. Amazingly, a severely deteriorated sleep architecture can effect some people dramatically and others much less dramatically. One of the first things that many of us with sleep apnea have learned here is that both the symptoms of apnea and our response to treatment can be so very unique from one person to the next.

We look forward to hearing about your treatment successes. But we are also here to help with any little therapy challenges you may encounter as well. This message board is a veritable panel of sleep apnea consultants. Good luck, blarg, and welcome aboard!