Do I really have Obstructive Sleep Apnea?

[TheDreamer]

And, if so....how long have I been suffering?

Well, I'm obviously a newbie, right? Don't recall the details of the conversation I had with my doctor during my last annual physical that led him to schedule me a sleep study. I know I objected to the idea, and contemplated bailing on it. But, I went through with it on December 1st.

The thing went worse than I had imagined. It hurt having the electrodes applied to my head, and it was really uncomfortable all around, etc. I have no idea how I managed to sleep at all....though I know I did for the first part of the study, because I had one of my waking dreams. Where just before it got too intense...the tech woke me up to do the second part.

All I remember was the discomfort of the thing on my face, blowing air, making noise, etc. And, then suddenly it was time to wake up....allegedly I slept at some point during that. I did some quick research on stuff the tech told me afterwards, but I eventually put the memory of it behind me.

Then yesterday, I got the letter from my doctor about the results (the letter is dated December 5th, not sure why it took to the 27th to finally get it....I only live a couple blocks from the doctor's office).

It says, AHI is 34, with treatment it came down to 5. Recommending 7 cm, c-flex of 1 with an Opti-Life mask and large nasal pillows. My first thought was to put things off until after the holidays before following up. Though now I'm thinking of calling him first thing on Monday.

Now, other than money concerns....I'm wondering about power issues. Just moments ago, the power went out for a few seconds. Not all of my computer is on a UPS, so it was pain getting things all happy again without rebooting. I have lots of other UPSs around my condo protecting other things, but I hadn't really thought of getting UPS for the bedroom. Even though I think I do lose some pressure from my Sleep Number bed due to power fluctuations. Though the fact that my new air cleaner won't turn itself back on after a power outage is kind of annoying.

I guess from the quick skim, I'll just plan to get that additional Powersource 400 that I've been thinking of getting for sometime....for the bedroom instead. And, before I get around to the other UPSs that I've been thinking of getting.

Wonder what else I have to look forward to.....

The Dreamer

[Wulfman]

And, if so....how long have I been suffering?

Well, I'm obviously a newbie, right? Don't recall the details of the conversation I had with my doctor during my last annual physical that led him to schedule me a sleep study. I know I objected to the idea, and contemplated bailing on it. But, I went through with it on December 1st.

The thing went worse than I had imagined. It hurt having the electrodes applied to my head, and it was really uncomfortable all around, etc. I have no idea how I managed to sleep at all....though I know I did for the first part of the study, because I had one of my waking dreams. Where just before it got too intense...the tech woke me up to do the second part.

All I remember was the discomfort of the thing on my face, blowing air, making noise, etc. And, then suddenly it was time to wake up....allegedly I slept at some point during that. I did some quick research on stuff the tech told me afterwards, but I eventually put the memory of it behind me.

Then yesterday, I got the letter from my doctor about the results (the letter is dated December 5th, not sure why it took to the 27th to finally get it....I only live a couple blocks from the doctor's office).

It says, AHI is 34, with treatment it came down to 5. Recommending 7 cm, c-flex of 1 with an Opti-Life mask and large nasal pillows. My first thought was to put things off until after the holidays before following up. Though now I'm thinking of calling him first thing on Monday.

Now, other than money concerns....I'm wondering about power issues. Just moments ago, the power went out for a few seconds. Not all of my computer is on a UPS, so it was pain getting things all happy again without rebooting. I have lots of other UPSs around my condo protecting other things, but I hadn't really thought of getting UPS for the bedroom. Even though I think I do lose some pressure from my Sleep Number bed due to power fluctuations. Though the fact that my new air cleaner won't turn itself back on after a power outage is kind of annoying.

I guess from the quick skim, I'll just plan to get that additional Powersource 400 that I've been thinking of getting for sometime....for the bedroom instead. And, before I get around to the other UPSs that I've been thinking of getting.

Wonder what else I have to look forward to.....

The Dreamer

I'm not sure how many questions you had in that post, but......with an AHI of 34....."YES", you do have (severe) OSA and you've probably had it slowly creeping up on you for some years.

Welcome to the forum.

Den

[TheDreamer]

Well, my aunt (retired MD) has chimed in on the results....she says "the recommendation for the sleep study results seems very appropriate" and "Hope this new treatment will improve your health greatly for the new year."

Wonder if I want input from my mother, she's bound to try to dissuade me, put me down, put down doctors, etc....say that everybody on the planet has OSA, and its just greed.... Kind of like she said everybody on the planet has scoliosis, and that I did look crooked as a child, but I was just lazy and she didn't beat me enough (claims my other aunt used to beat my cousin to fix her crooked back). And, then there was her answer for my being diagnosed with depression...its all in my head, and I just need to stop being depressed.

The Dreamer

[sleepycarol]

At this point is there any reason to share this with your mother?

My mother was very domineering and had her own opinions -- after I was an adult, and after I got wiser, I didn't always share everything with her right away. Can you focus on your treatment right now without worrying about your mother? What she doesn't know won't hurt her and may very well be a life saver for you!! After you are more comfortable and she sees the positive impact it is having on your life (although it may take a few months) how can she argue with success?

Good luck.

[Wulfman]

Well, my aunt (retired MD) has chimed in on the results....she says "the recommendation for the sleep study results seems very appropriate" and "Hope this new treatment will improve your health greatly for the new year."

Wonder if I want input from my mother, she's bound to try to dissuade me, put me down, put down doctors, etc....say that everybody on the planet has OSA, and its just greed.... Kind of like she said everybody on the planet has scoliosis, and that I did look crooked as a child, but I was just lazy and she didn't beat me enough (claims my other aunt used to beat my cousin to fix her crooked back). And, then there was her answer for my being diagnosed with depression...its all in my head, and I just need to stop being depressed.

The Dreamer

Sounds like "POSITIVE" comments to me. I would say that if your mother has anything negative to say, have her talk to your aunt (the retired MD). (is she your mother's sister?)

And, I agree with everything Carol said. This is YOUR therapy.....nobody else's. The sooner you get on with it, the better.


Den

[TheDreamer]

Okay, I called to make an appointment with my doctor this morning, and he had a time of 9:45....so in I went.

He came in telling me that I had failed my sleep study. Quickly went over the detailed findings from the sleep study, gave me a hand out (after spending sometime discovering that only one printer was now visible from his computer and it was out of toner, and then some time to resolve that). Then, he wrote me a couple of scripts and told me of some of nearby places I could get the DME order filled out.

I went with the one nearest my home (and on the way home from the doctor's office).

They/RT could see me right away. RT handed me the equipment, went through its use and care. They were out of stock of the heated humidifier though, so that should be in in a couple of days...though perhaps later due to the holiday. And, then another person explained billing etc.

They are going to submit a bill of like $2058 for everything (though it might be lower in the end due to whatever the insurance company dictates as write off). But, they explained that my insurance until the end of the year is $5000 for DME, $1000 co-insurance max (of which I still have ~$785 to go)....and that it is 90/10. I'll get a bill for whatever 10% works out to be.

I guess it's good that I went in now rather than later....next year my coverage will only be 80/20 (co-insurance max will be higher, but DME max will stay the same). Not sure if next year's FSA can be used for when I get the bill. Of course, I don't know what the rules are on using money that hasn't gone into my account yet. This is my first year trying FSA.

Have a follow up with my doctor in 3 months, unless I have trouble before then.

I asked to have a copy of the sleep study results....guess I have some reading to do tonight. Wonder if I want to keep my scheduled call to my mom tonight.

The Dreamer

[john_dozer]

Sounds like for your original post, you weren't happy with the mask.

You should be able to try different masks. Some are quieter than others for sure. Some are pretty constant with their noise while others change noise between inhaling and exhaling.

Eventually you should get used to any of them so you shouldn't have to wait for perfection. But it may be worth trying a few different one. The script should give the RT the latitude to try different masks. Sounds like it may be too late, but when the time comes for a replacement you could try that. You could also try the cpapauction.com site to pick up unused masks cheap although the price will begin to add up. You might want to search/lurk here to get a general idea of what people think of some of the masks out there. You should also read the comments at cpap.com on various masks to get an idea of what users think.

[TheDreamer]

Hmmm, I didn't ask what replacement schedule was allowed for mask stuff....I'll have to make a note to ask when they have the humidifier in.

The Dreamer.

[Kiralynx]

And, if so....how long have I been suffering?

Probably longer than you would like to consider... and you may find, as you get a handle on your therapy, that your depression lifts significantly. I've been at this for exactly two months and one day, and the difference with the outlook in that two months is significant for me.

Back in September, when I was diagnosed, I came out of the doctor's office crying because I could not face the idea of sleeping with a mask for the rest of my life. A few minutes ago, we had a major fuse blow, and I told my husband, "If you can't fix it, I'm going to a motel tonight! I need my Bipap!"

A large part of that adjustment came from reading the thousands of messages filled with useful information on this web site.

Wonder what else I have to look forward to.....

Masks that drive you crazy while you search for The Perfect Mask.

Pillows, ditto, while you find the ones which work for you.

Developing a whole new bed time routine, including nasal washes, refilling the humidifier, getting the mask on... and remembering to take the darn thing off if you have to get up in the night.

Waking without exhaustion, depression, panic from interrupted sleep.

Staying awake all day and not bashing your nose on the keyboard when you're writing to friends.

Having the energy to go places and do things. Recovering joy in life.


Your lady aunt, the retired MD, is a wise, wise woman.

[TheDreamer]

Well, the call to my mother was mixed. She had been talking with her sister (my aunt) earlier in the evening. Though my aunt doesn't know how people sleep with a mask and stuff, so nothing in the call to help with the apprehension of doing that for the first time last night.

During the call, I was skimming the results of the sleep study.....noting that I'm 6'3" and weigh 190 lbs, BMI 23.6. But, my mom still calls me fat, and why can't I be <120lbs again like her.....she's 5'5". Though she did mention that part of the reason she's been calling me fat the last couple of years, is that my neck has getting larger (though my waist has also gained a few inches). I'm not the <100 lbs toothpick that I used to be.

The conversation went down hill from there.

I then read through all the stuff I was given, and doing other web surfing... I guess I was trying to delay the inevitable of using the mask for the first time. I had considered that if I put things off long enough, that I would just crash without doing it. Eventually, I set out to try putting it on. It was a lot harder than I expected....not just the big difference in having to do it myself, compared to having somebody do it for me (at the sleep study) or helping me do it (at the Home Medical store). Not to mention that it is hard to do in the dark (the silly lamp next to my bed didn't work either, apparently never has since I moved in...but never had cause to try it until last night).

I also got up to use the bathroom a lot more than a typical night, during that first hour.

I normally start the night off sleeping on my stomach (in the winter time) and then switching to my back. So, now that I wasn't all wired up...I tried that with the mask. I couldn't find a spot on my pillow where the mask didn't leak horribly when sleeping on my stomach, and holding the mask in position with my left hand wasn't really a long term sleep on my stomach solution. Also during this first part, I seemed to figure out how to swallow without inflating my ears.

Eventually, I set out to figure out how to sleep on my back with the mask.

When I woke this morning....I couldn't tell if the mask was blowing or not....and it wasn't too noticeable on my face....but now with the mask off, my nose is feeling sore. I don't feel all that much better, though I didn't snooze the 20-30 minutes I've been known to do after my alarm goes off. But, probably because I didn't feel like doing that after trying to silence the alarm and having to untangle and remove mask first.

Now to figure out how to work the care of my mask into my morning routine. And, perhaps I need to acquire a nightstand for the other side of the bed to put the CPAP on....the blue lights were annoyingly bright. Not sure if pulling my blanket over the machine is really the best way to go.

Wonder if I need a different pillow now. I don't think my bead filled pillow will tolerate modifications. Wonder if I really did toss out my memory foam pillow....

It was interesting reading the sleep study report....like how the in-bed time was longer pre-treatment than post-treatment...but sleep time post-treatment was longer. Didn't know that I had even slept. It was kind of that way this morning too. No waking dream. Or, that there was no stage 4 sleep, lots of stage 2 sleep (stage 1 = .1%, stage 2 = 72.1%, stage 3 = 12.2%, stage 4 = 0%, REM = 15.5%). That I did snore....having always slept alone, I guess I wouldn't know that I did. I knew I experience leg jerks while sleeping (having sometimes experiencing one just as I'm about to fall asleep....or being woken up by one), and they recorded the occurrence.

The Dreamer.

[AuntieNae]

Hello The Dreamer
You have come to a great place for support and assistance. I too, am dealing with family members who think this is all a "scam" to "sell me crap" to "make their lives miserable living with me and this machine", etc. etc. I can tell you how much better I feel each day .. and that is what makes it all worth it to me.
AuntieNae

[Songbird]

Hi, Dreamer, and welcome to the forum. I stumbled across a thread that reminded me of what you were saying here: viewtopic/t37373/viewtopic.php?f=1&t=25 ... s+#p221619
I think J.A.Taylor's discussion with his mother was so well-worded... kind and caring, but very much to the point.

If my mother hadn't already passed on, I'd be checking to see if she wasn't living a double life (as my mom and as yours). I could practically write the script. Whether or not she decides to believe that SA is real and that you really have it and that it's really, really serious, I think the best thing you can do is to do an intensive reading project for yourself.... start with Jules' "Where A CPAP Newbie Should Start" thread in the Announcements section, above. You're the one who needs to be absolutely certain that it's real and that you need the cpap therapy every single time you sleep, including naps. (Cliffs Notes: It is. You do. )

Marsha

[TheDreamer]

Night 2 with the CPAP....tried a different cushion. didn't like it....makes different contact with my face that bothered me. RT has suggested the medium nasal pillow might be the right size for me (rather than the large that was prescribed). Think I'll try that one tonight.

Also my head was wet this morning....apparently I was sweating a bit...and the mask/pillow arrangement kept things damp.

Still rough adjusting to the pressure when I first put it on, but when I wake it just feels natural. How I sleep has changed. Though right now instead of getting up half a dozen times through the night to use the bathroom...I do all those trips during the first hour of getting into bed, but I sleep through the night. And, now no more dreaming.....

I picked up the humidifier this morning. Not sure if I can find distilled water to use in it for the first couple of nights.

I'm guessing the tank isn't dishwasher safe?

I have a bunch of stuff being delivered on Friday -- Powersource 400, Night Stand, Water Distiller.

Though not sure now if the Powersource 400 is big enough for all the stuff I want to put on it....guess I'll find out.

Still so much other stuff I want to buy....just a question of when. Like thinking of getting the EncoreViewer software and reader....

The Dreamer

[ziggytosh]

I think it's a great idea to get the software. I'm on a different make and model of machine, but I got the software recently and it's given me some useful information. It will really help if you need to increase your pressure at some point to really knock down that AHI. It sounds like you are a self-reliant type with lots of interest in the data and equipment. Those traits will serve you well in getting your treatment to be as effective as possible.

Sounds to me like you're doing really well. Sleeping through the night is a huge step forward. It won't be long before you start to notice that you are more refreshed and alert. Hormones and chemicals in your brain that replenish during sleep will start to change, and you may feel less depression (though it sounds like minimizing contact with the mom might be helpful in this regard too).

As far as not noticing your dreams so much, I think it's more likely that you are actually dreaming more because you are spending more time in the deeper phases of sleep, but because you don't wake up as often in the middle of the night your conscious mind doesn't have as many opportunities to take note of the dreams you are having. By morning, all but the most recent dream are forgotten.

Anyway, it sounds like you're really doing great and that the treatment will be effective for you. Just ride out the equipment issues. It gets easier.

[ozij]

I picked up the humidifier this morning. Not sure if I can find distilled water to use in it for the first couple of nights.

I'm guessing the tank isn't dishwasher safe?

No rules about that, depends on the maker and model, you might find it stated - one way or the other - in the instructions.

I have a bunch of stuff being delivered on Friday -- Powersource 400, Night Stand, Water Distiller.

Though not sure now if the Powersource 400 is big enough for all the stuff I want to put on it....guess I'll find out.

I don't know much about electronics and batteries - but more than one person has mentionde you can't / shouldn't put the huimidfier on UPS machien because the humidifiers need a sine wave - check that.

Congratulations on sleeping all night through. That gettting up all night long to pee is calle "nocturia" - should you want to search for it in medical journals .

O.