Please HELP- Newbie in search of answers

[WindyCityEsq]

Hello, this is my first time on here. I was just diagnosed with sleep apnea yesterday.

I'm currently seeing a neuro doctor who specializes in sleep disorders. The results of my sleep study came in. I stop breathing 57 times every one hour, and my blood oxygen saturation level is reduced to 66%. Doc says 30 apneas per hour is classified as "severe," so the fact that mine is almost double that is not good. Doc also said that S02 levels below 90% are dangerous, and bc mine is 66%, I am very at risk for heart attack or stroke. So now, I'm scared poopless. Gotta get this thing under control.

As a way of background, I'm 29 years old, female, about 70 lbs overweight. Medical history includes diagnosis of ADD and GERD. I work long hours- about 60 hours per week (sedentary), plus I commute for an additional 18 hours per week. I get an average of 6 hours of sleep per night, although sometimes I get less if there's a big deadline.

My doc wants me to return asap for a second sleep study, this time with a CPAP machine. Assuming the CPAP is effective at reducing my apneas, doc will write a script for a machine. I called my health insurance today, and they said they will cover my equipment and supplies- anything that the doc includes on his script will be 100% covered by an in-network DME.

So now for the question: I am totally ignorant regarding sleep apnea machines and supplies, and pretty much everything. I figure that I need to get schooled on this, especially if my insurance will pay for anything that's included on the script-- as in, I want to be able to tell my doc the exact equipment (model) to write on the script so that there are no issues later.

I did some research online. I think that maybe the ResMed S9 AutoSet with humidifier is what I want to get. What do you guys think of this? Are there cons to this piece that I should be made aware of? Is a newer/better model available? What features should I be looking for?

RE: Masks: Sometimes I breath through my mouth, sometimes through my nose. So I think a full mask is probably better for me. But is this something that my sleep study will monitor and be able to tell me (whether I breath through my nose, my mouth, or combination?) I want to get the smallest mask possible that is still effective. That it is effective is my paramount concern, but I would be lying if I said I don't have vanity concerns. I'm worried that my husband will think I look like Hannibal Lector and not want to initiate spontaneous "romantic" time anymore :/ Anyway, is there a mask that you'd recommend? What features should I be looking for? What other supplies should I make sure are written on the script?

I suspect that I've been suffering from sleep apnea for about 8-10 years. (! Oh my gosh, I can't believe that-- I am just now realizing that. Wow. So thankful that my husband practically forced me to get a sleep study). Anyway, I'm eager to get started on therapy, but I'm concerned about the fact that my brain has been surviving on 66% SO2 levels for so long. Are the odds high that I have sustained permanent damage to my brain, and other parts of my body? Or will I eventually rebound back to base with CPAP therapy? And if so, how long will that take?

My doc thinks that my sleep apnea and ADD are connected. Is this true for anyone else out there? After CPAP therapy, were you able to get off adderrol? That would be wonderful for me- I hate the risks that drug poses on my heart. Same question for GERD. Is GERD and sleep apnea connected? After CPAP therapy, were you able to get off omneprazole?

RE: weight loss: I walk 2 miles a day, 5 days a week for exercise, plus I follow weight watchers decently well, but have had a very very very hard time losing weight. Doc says that sleep apnea (and the severe sleep deficit it creates) interferes with the body's ability to successfully convert glucose into energy, and that it also affects one's appetite. Did anyone lose weight after CPAP therapy? If so, how much? If I could lose some weight, that would be awesome. Is exercise in conjunction with CPAP therapy recommended? I would assume that exercise would be good for one's oxygen levels.

Can I still go scuba diving and fly on planes on days where I've use CPAP the night before? Could I use CPAP *on* a plane for an overnight, overseas flight? (does the air pressure make that a no no?)

Lastly, is there anything else that I need to be doing to get my ducks in a row as I plan to go into this second sleep study with a CPAP? Things I should ask the doctor or my health insurance? So new to this, I don't know where I should start.

[Bill44133]

Suggested reading:

http://maskarrayed.wordpress.com/what-y ... me-part-i/

[cpapernewbie]

ON CPAP device:
For 7 years I have tried both S9 Auto and various PR models from the tank, M Series and the more recent System One 550 and now the 560. The 560 and S9 Auto are equally comfortable to use and quiet.

The S9 is better in the color panel display and the travel bag but the System One model 60 or the 560 is superior in the humidifier design and performance.

However the challenge you are going to face daily is not with the CPAP device but with the mask.

Best advice I can give you is to start with the minimal & lightest mask - the nose pillow
Suggestions: Resmed Air Fit, Bell and Swift FX

If OK - you are all set with the minimal footprint on your face

If not, then try Nasal Pillow: try Wisp,Activa or ....

the worst is the full face mask (for claustrophobics like me)

[Badnvsleep]

First, welcome this is a great place for advice, information, and support.

Second, from one newbie to another, I have been doing this for just over 1 month now, I would start at the top section of the home page and start reading. There is a lot of good information and may provide answers to many of your questions you now have or may have in the future.

Also, look at the top section on the home page for "Pugsy" and go to her signature line, she has a link that is a great place to start, not the Sleepyhead link that's for later. Try this link as well: http://tinyurl.com/2arffqx and this one: http://adventures-in-hosehead-land.blog ... -with.html.. Both have great info and may answer some of your questions. I am sorry if my links don't work, still learning here.

Advise, it takes time to get use to having a mask on at night and sleeping and even finding a mask you like. Be open minded, the one type you think that may not work just might work best for you. Everyone is different when it comes to masks, it's like buying a new car, test drive a couple and find what fits you best and that you are most comfortable with. I got lucky on the second mask, others go through 4 or 5.

Don't be afraid to ask questions here, there are no numb questions. Someone here has the answer or knows where to find the answer.

And lastly, this is not a cure, but a treatment for sleep apnea, I look at it as a life style change. Everywhere I go my machine is with me if it is overnight, I don't like the way I feel without it now.

Good luck......

[Janknitz]

Welcome, you've come to the right place!

Exercise is fine--you'll soon have even more energy to do it. It's fun, it's great for your circulation and the health of your body.

But exercise will not make you lose much weight. Plenty of people manage to get obese even if they are very active. You seem to be an active person, yet you gained 70 lbs in spite of exercising.

With apnea that's gone on for a long while and weight gain IN SPITE of regular exercise, more than likely your metabolism is way out of whack. Sleep apnea messes with hormones that control appetite and blood sugar (insulin, leptin, ghrelin among others), and adrenal and thyroid glands too.

So to lose weight, you're going to need a dietary approach that works to normalize your metabolism. Here's a good place to start: http://www.dietdoctor.com/lchf

All these things work together:
CPAP to treat apnea
Improved sleep
Improved diet
Keep up the exercise

When all these things fall into place, your weight should come down, but more importantly, you're going to fee AWESOME!

[Captain_Midnight]

WCE writes, and asks...My doc thinks that my sleep apnea and ADD are connected. Is this true for anyone else out there? After CPAP therapy, were you able to get off adderrol? That would be wonderful for me- I hate the risks that drug poses on my heart. Same question for GERD. Is GERD and sleep apnea connected? After CPAP therapy, were you able to get off omneprazole?

1. So many posters hereabouts have noticed a significant increase in cognitive ability (including me) that I would say that sleep apnea can, indeed, cause cognitive and attention impairment; and, successful, optimized xpap therapy does help this (in my case, the change was impressive).

2. I've read posts of OSA patients being able to stop many drugs. (I'm not a physician, and I don't give med advice. Check w doc first). That said, I salute anyone who wants to go Rx-free, or nearly so. Your concern about the risks of drugs is a valid one.

You might want to check out the "success stories" tab at the top of this forum. It will give some answers to your (excellent) questions, and let you know about some other benefits to which you may look forward.

Good luck. BTW, best advice? Expect a few "speed bumps" and keep a sense of humor.

.

[PST]

From one Windy City lawyer to another, welcome. I'm just going to address one question no one else has yet:

Can I still go scuba diving and fly on planes on days where I've use CPAP the night before? Could I use CPAP *on* a plane for an overnight, overseas flight? (does the air pressure make that a no no?)

You can definitely fly after using CPAP. Everyone does. I have used CPAP on an overnight, overseas flight before. It helps if you have a deeply reclining business class seat with a little privacy, but air pressure doesn't matter. The good modern units all adjust to the pressure in your environment (within reason) and deliver proper pressure whether you're in Chicago, Mexico City, or the sky. I can't claim actual knowledge of scuba, but I can't imagine it would be a problem. The pressure provided by CPAP is really not very big. When we inspire by expanding our chest cavity and creating a pressure differential with the outside world, we tend to pull our upper airways shut. (The illustration that used to be used was sucking liquids through a paper straw, which sometimes would collapse, but a youngster like you might know nothing but plastic straws.) All that's needed is enough external pressure to splint the upper airway open against that suckage. It doesn't push air into the alveoli under pressure like a respirator would. We are still doing most of the work.

[MitzyG]

PS...I have the S9 Autoset and I love it. The water is easier to fill and not spill. The thing is quiet and the display turns off so that you aren't disturbed all night. Normally I'd have to put tape over it but this one turns off (the good ones turn off). You could ask your doctor if s/he has loaners. My first one did, but didn't offer it! I know this is an unpopular comment...but I bought the skin for my S9 Autoset and it really made it feel more "homey". It matches my bedroom and doesn't make me feel "marked" as someone with a "problem". New doctor noted it and I told her I knew it was silly. She was really supportive and said that there are some people who really need the encouragement, particularly children. She hadn't seen it before but I think she was impressed.

[Chirurgeon]

I am a newbie as well. Just had my titration night last night. They had said my O2 sats were in the 80s. Didn't tell me the number of episodes per hour, but that might have been because I had such a horrible night. The bed was awful. Last night was a little better, I had taken my own pillows. I started the night with a nasal mask but I found I was trying to concentrate on keeping my mouth shut and asked them to switch me to full mask. It wasn't so bad. The tech said they got good results. And I did go into REM sleep. He woke me later because they are told not to interrupt REM. Hopefully in my own bed I will find the right rhythm and get a good night's sleep. The DME is supposed to contact me with in a week. I will be hanging here to try and get some more advice.

TIA

[HerbM]

Welcome.

Glad you found this place -- the people here are very helpful.

I love my Resmed S9 Autoset.

People here will tell you that there is not much important difference between this machine and the equivalent Respironics and that is true. (Still I like the Resmed and I had my pick.)

You want a machine like these with full detail data. Also, you want the ClimateLine heated hose if you get the AutoSet (don't let them pawn off a weaker model like Escape etc.)

Don't panic. You have probably had the apnea while and you do want to get it under control (and like me, your weight if you can.)

Start reading with an eye not only for the best equipment but the ways that people succeed with CPAP AND the ways they choose to fail (and solutions to much of that.)

I had a really easy time getting started so do not make a good example for 'overcoming problems' but there is plenty of advice here for doing that.

One reason that my treatment start up was so easy was the great advice and help that everyone here gave me (and continues to give me and everyone who shows up seeking answers.)

Use your current fear to start developing the mindset that YOU WILL SUCCEED, whatever it takes (your life eventually depends on it.)

You have several built in excuse for avoiding your treatment (and even the rest of your diagnosis and start up) with the hours you are working and traveling.

78 hours out of your week is a lot so start planning RIGHT NOW to get your treatment hour in to the best of your ability.

The great thing is that most of the work is done WHILE YOU SLEEP and the effect will probably be to give you more energy and possibly a clearer more focused mind and memory which should help with your work.

My suggestion (and it's *my* goal) is to plan to have the mask own whenever you lie down to sleep.

You may not do that but it is effective to start with significant goals and do your best.

[chunkyfrog]

I told my doctor I wanted to get an Autoset (I was using my Elite)
because I was planning to lose some weight and wanted to maintain the ideal pressure as my weight changed.

[WindyCityEsq]

THANK YOU to everyone who has replied. I read a lot of the material you folks posted on those info links. Now I'm sort of feeling overwhelmed by all the mountains of new stuff I need to learn. Oy. I hadn't realized so many things could go wrong or need adjusting. I always figured, once you get your machine, it's a fix it and forget it type of thing. But between mask leaks, hoses, rain out, chin straps, taping, mask liners, cleaning schedule/procedure, data monitoring with software (?), making adjustments on your machine, etc.... I feel overwhelmed. I hope it's smooth transition for me. I guess I should expect the speed bumps, though. Thanks for everyone's help, I appreciate it.

[Bill44133]

THANK YOU to everyone who has replied. I read a lot of the material you folks posted on those info links. Now I'm sort of feeling overwhelmed by all the mountains of new stuff I need to learn. Oy. I hadn't realized so many things could go wrong or need adjusting. I always figured, once you get your machine, it's a fix it and forget it type of thing. But between mask leaks, hoses, rain out, chin straps, taping, mask liners, cleaning schedule/procedure, data monitoring with software (?), making adjustments on your machine, etc.... I feel overwhelmed. I hope it's smooth transition for me. I guess I should expect the speed bumps, though. Thanks for everyone's help, I appreciate it.

Welcome to the wonderful world of CPAP! You will begin to feel better shortly... It is worth every effort you put into it
The life you are saving is your own...

Don't be afraid to come back and ask questions.. no such thing of stupid questions... Also, do come back and tell us how you are doing.
When you get your equipment be sure to register and put your equipment in.

I wish you good luck..

[70sSanO]

Let me give you a little reassurance. I've been at this for over 10 years and it can be pretty simple.

Back in 2001 I got a straight CPAP without a humidifier, you needed to justify one, and a FFM mask of which there were probably only a couple to choose from. There was no heated-not heated climate non-climate-slimline-standard-auto-data-etc. It was just mask, hose and machine.

What really works is that you strip away all of the complexity and just take the attitude that this is going to make the quality of your life so much better. I have gotten to the point where using the machine seems more natural that not using it.

When you run into problems this forum is great. That is when you can start to think about what to do, don't worry about stuff that may never happen.

As for equipment , you want an data capable auto machine, even if you never look at any data. There ae more people on CPAP that have never looked at data than those who track data. The S9 "Autoset" is a good choice, NOT the Escape Auto.

Try a couple of Full Face Masks and find one that is comfortable. I personally like having a FFM because I think there is less irritation than blowing air up your nose with pillows, but that is must me.

As for weight I have lost weight, put on weight, and now lost weight and other than having more energy to exercise, CPAP has no impact on my weight, and as noted above exercise alone isn't the solution. That said, not being exhausted does help in being able to think more clearly and persevere when you make a push to lose weight.

John

[WindyCityEsq]

THANK YOU! I've created an account on here, and will update my w/my equipment once I get that figured out. Thanks again to the ppl who posted, I appreciate the support. Glad I found this place.