Newbie with some questions

Hi everyone. I'm new to the whole, sleep apnea thing and the CPAP, so I have a bunch of questions for those who have the experience and time with this. I did a sleep study a couple weeks ago. Just got the results. Apparently I stopped breathing or partially breathing 56 times in an hour. My blood oxygen dropped to 75%. In addition, I was told I have "leg movement" when I sleep, but it's not related to restless leg syndrome, although she didn't elaborate on what could be the cause (still weird to me). I got my CPAP (a Fisher and Paykel Sleep Style 600 and full mask a Resmed Mirage Quattro. My setting is a 13. The night before my study, I was in an car accident (rear-ended at a stop sign). Thought about cancelling, but didn't want the cancellation fee (which I found out later they wouldn't have charged under the circumstances, but you know HMO's. Also, that night, I couldn't fall asleep and was given an Ambian. Normally don't take anything. They also had me lie on my back (I'm a side or stomach sleeper generally). So that is all my information, now to my thoughts and concerns:

1. Diagnosis Surprise: With everything that was going on during the time of that study, I am left wondering if that could affect my numbers. I had a study done 10 years ago and everything was fine. My weight hasn't changed much (still have about the same amount of sleep to lose as I did then) but I'm obviously older. A few months ago, I was sleeping, as I had thought, pretty good. I was tired during the day, but I have Lupus, so I figured I was flaring. I came down with a never ending cold in November and I took an antibiotic (Levaquin) at the end of November, and started not being able to sleep through the night and had weird dreams, etc. I suppose it's possible that I had a mild apnea going before, but does it just start like that? Like someone threw a switch? I guess I'm struggling with the diagnosis (or accuracy of it) with all this. Seemed like in the past, I'd go through some trouble sleeping, but it would ease up.

2. Image Issues: The next struggle for me has been the image issues. I feel like an 80 year old man on oxygen. I'm sure I'm "hot" looking to my wife with this gear on. This is really bugging me. I know "your health is more important" blah, blah, blah... Did any of you struggle with this as well?

3. Equipment: Dealing with an HMO, I assume I got the "Yugo" of equipment and masks. Besides being all bulky, I'm not sure if there are better options out there? Where to start...where to look. Thoughts?

4. First Nights: So I've got the machine and have tried it two nights. The first night I was kind of excited to wear it. I was told by so many people and doctors that this "should make a big difference in how you feel..." so, I did start to wonder. In fact, I guess I was expecting miracles...Go to bed, wear the mask, wake up feeling all refreshed and energetic... Nope. Woke up feel groggy, worse than normal. Headache and dizzy. Day two, so far no headache, but the dizziness is worse. Not sure what to make of this, but it's not fun. Is this common? What else might I expect if it is (are there other "common" things that might occure). How long do the adjustments take? Besides this, I also feel flush and still tired. I have to say that I was waking up every hour there for a while, but I slept through the night. This morning I woke up around 5 (mask was bugging me) and 7am. Fell asleep again until 10am. I am not a late morning sleeper!! Only the phone ringing woke me up.

5. Concerns: So I looked over a couple sites on people's comments. One thing I had never considered was this thing being "addictive". In fact, I see it as a motivation to lose weight so I can get off of it (potentially). But addictive? I read somewhere about a woman who supposedly fell asleep with the machine and her power went out and she died??? How's that? Was it because she had the machine on? Was it because she slept without the equipment so her blood oxygen dropped and it was a shock to her system? This being "addictive" was not something I was told was possible. Like I said, I'd like to think I might some day get off (if possible). Nothing like spending an intimate moment with your spouse and snuggling afterward, but before you might drift off, putting your "gear" on...lol.

6. Other questions: Not that I'm planning on being in the hospital any time soon, but having been there recently with my dad may me ponder this machine and those times. If you go to the hospital, do you need your machine? What if they want to do surgery, does having sleep apnea affect your being put under? More of a curiousity than anything.

Well, probably more than enough of that. I'm very grateful to anyone who can answer any of the questions from person experiences.

Thanks again,

Larz

Welcome to the forum.

First suggestion is to go up to the top of the page and click on the yellow lightbulb icon that says "Our Wisdom".....and start reading. Then, read some of the threads on several pages of the forum.....lots of people with the same questions. Use the Search function on some of the key words of your questions.

Get over the "image" problem with the equipment. It'll keep you breathing while you're sleeping and nobody gives a darn what you look like when you sleep in the dark.

Forget the "if I lose some weight I'll be able to quit using the machine" idea. The Sleep Apnea probably put the weight on to begin with. And, yeah, it's addictive.

If you have to go to the hospital, you should discuss the situation with your doctor.....but you'd probably need it there, too.

You may not have a "Yugo", but it's not data-capable. If they got your pressure correct, you may not need data, but many of us like to monitor our therapy, so if you're into that, you'll probably want to get a machine that IS data-capable.

Just remember.......we were ALL in your position at some point and in various ways. Some of us did our homework BEFORE we got thrown into the "sleep apnea money mill" and some got smarter shortly after......but, in any case, the therapy works for those who are willing to use it. Don't give up.

Den

First Nights -- ya, this is frustrating....I was also told that I would experience an instant and amazing improvement after my first night. Maybe I'll hit that in a month or two. Though there was some improvement (until sinus infection and now a cold...) I had found that getting out of bed in the morning to be less like rising from the dead.

Hospitals -- it depends. Probably best to bring it along, and then find out. I heard at our local AWAKE meeting that you use your machine there if you need it at the local hospital (and people have reported seeing people bring in their own machines and use them there). But, the hospital in Salina, KS won't let you use your machine there.

The Dreamer.

Larz,

I also am new to all of this and had my first CPAP sleep study last night!!! The sleep tech told me last night to not be surprised if I woke up groggy, foggy and just plain worn out. I got home at 6AM from the sleep studay, its now 3PM and I still feel out of it and groggy. She told me that since I haven't had oxygen when I sleep in YEARS, I might have gotten too much sleep!! (hard to imagine). That my body and brain aren't used to having a constant flow of oxygen and thats why you and I feel like we do, but its temporary. And like Wulman said, the sleep apnea is what put the weight on you most likely...from what my Dr. said sleep apnea makes your metabolism run 120mph in the opposite direction because at night, when your body is supposed to be resting and reparing itself, ours doesnt..it keeps running and running harder actually. Im a health freak and used to compete in bodybuilding...in the last year I couldn't control my weight gain, started having high blood pressure...again most likely all a component of sleep apnea. These guys here (and gals!) are awesome and can probably refute or agree with what I said (or my dr). Its pretty overwhelming but I think in the long run, this will be life changing, at least I hope it will...

Cheers

Mike

Hi, as far as "addictive" goes, we just mean that once we've got everything worked out, we can't fathom ever sleeping without the gear again because we feel so much better! There's no physical thing going on though - it's just air being pushed in a little more forcefully than it normally, rather more normally vs being half-blocked in your throat. Don't worry about hospitals - they're usually quite up on it all, and you wouldn't need to worry during surgery - the anesthetist deals with it, but only in the recovery room where you either bring your own machine (having set it up ahead of time with them), or use theirs, and it's only for a short time in any case. You would use your own in the hospital room if you wanted to, I guess.

Larz wrote:5. Concerns: One thing I had never considered was this thing being "addictive".
Larz

Larz, welcome!

If you mean addicted to:
sleep,
feeling rested in the am,
alert cognitive brain function,
recovering my health and strength,
improving my health and strength,
recovering from depression,
getting my sense of humor back,
quit simply, enjoying life again......

I'm addicted.

CPAP therapy is no more addictive than insulin for a diabetic. You have a health threatening condition for which there is no cure except a tracheotomy (you don't wanna go there).

Hey, we don our mask in the dark, we wear our mask in the dark, we don't have to put it on until we are ready to go to sleep. I don't know about your wife but my husband is more to me than good looks. He's my friend, my mentor, my support, my companion, my lover, my ... you get the drift?

The leg movements sound like they could be Periodic Leg Movements or just a reaction to your breath being cut off by an apnea and your body's reaction to that suffocation, struggling to get that next breath. They often go away w/successful CPAP therapy, but only time "on the mask" will tell for sure.

"They" always like you to sleep at least a portion of the night on your back as it is while on your back and/or whilst in REM sleep that you tend to have the most breathing "events". They want to be able to treat you at your worst, not just at your best.

Yep, things change from 10 years agp and, yep, you're 10 years older. So why did you have a sleep study 10 years ago? OSA detection and recognition has improved since then.

Yup, most likely there are better options out there than the CPAP you got since local DME suppliers tend to like protecting their profit margin by providing bare bone compliance data only CPAPs to unsuspecting cients. Especially when involved w/an HMO. I'm not familiar w/the Fisher and Paykel Sleep Style 600 but its easy enough for you to look it up at cpap.com. I'm too lazy at the moment, I have slow speed dial-up. Besides you can get a good taste of what is available out there in CPAPs at cpap.com

Unfortunately, MOST of us do NOT experience the miracle of great sleep and feeling rested the first night or even the first week of CPAP therapy, as you've found out for yourself. Sometimes CPAP therapy acclimation takes Patience, Perseverence and a Good Sense of Humor.

You are MUCH MORE likely to die in bed W/O CPAP therapy than w/it. Even if you were to lose power during the night it would be HIGHLY unlikely that you would NOT wake up eventually due to shortness of breath.

Yuup, if there is any chance at all that you will end up spending one night or more in the hospital you should TAKE YOUR CPAP. Even if you are going to have an in and out procedure that requires even light sedation, TAKE YOUR CPAP. Always make sure that your medical professionals are aware that you have OSA and are using CPAP. Your wife should know how to set it up, put your mask on you and start your therapy at the proper pressure, including how to change the pressure if necessary. When under general anesthesia and even sedation you are closely monitored - it is in Recovery that you are in the most danger and need to be on your CPAP every minute. You just are NOT that closely monitored in Recovery. ALWYAS MAKE SURE YOUR ANESTHESIOLOGIST is aware you have OSA and are on CPAP BEFORE surgery or being sedated.

As far as your "possible Yugo" Fisher & Paykel. It WILL provide excellent therapy, F&P makes a very good CPAP, they just aren't "into" the full data capability bit - yet. Resmed and Respironics have been the leaders in fully data capable CPAPs and the Resmeds have no peer when it comes to ease of access to and the amount of data available via their LCD screen.

Thank you for the replies. I guess this is still just so heavy to get my hands around. I keep accumulating these major things like Lupus and now Sleep Apnea. Get's depressing...

Curious about this dizziness in the morning. As I look through the forums, I read a lot about ear issues. I was hoping it was an adjustment thing that would go away. Any thoughts?

HI! I just had my sleep studies over the past several weeks and my appt with the RT/ DME is tomorrow. Definitely check out the yellow light bulb at the top of the page. There are links to the machines that people seem to like the best- when I first called the DME they were going to give me the bare-bones machine, but I called my dr. back and now I'm getting the Respironics m series with cflex. I agree that it seems overwhelming at first, but you gotta do what you gotta do, I guess, and obviously, from the people i've observed here, it can be done!

Victoria - You said you are getting a Respironics M Series with C-Flex. There are several models of Respironics M Series with C-Flex.

If you want it to be "data capbable" (and be useable with software) is has to be one of these 3 -

Respironics M Series PRO with C-Flex

Respironics M Series AUTO with C-Flex

Respironics M Series AUTO with A-Flex (also has C-Flex).

If you don't care about data capable there is -

Respironics M Series PLUS with C-Flex. The PLUS is a "bare bones" machine with exhalation relief but is not data capable. This model has a smart card but it only gives compliance ( how long you used it) If you want a data capable machine DO NOT accept the "PLUS" model. Also, if you want to set your machine to a range of pressures, you need one of the AUTO machines.

You didn't specify which model of the Resprionics M Series with C-Flex you are getting. I just want to be sure, if you want a data capable one, that you get the right model.