Newbie still in shock!

[WalkingZombie]

I received my sleep study results earlier this week. The diagnosis was severe obstructive sleep apnea/hypopnea syndrome. I am a 47 year old female with no history of snoring, and my husband has never heard me stop breathing or gasp for air at night. I've always believed I sleep like a rock! My doctor sent me for a sleep study because of my low energy level. She said we'd start there and if I didn't have apnea, then we'd check my thyroid, etc. Well, I thought it was gonna be a waste of my time, cause I couldn't possibly have apnea...not me! Now that I've been diagnosed, it explains alot. As I've since been reading, it is probably the cause of my memory loss (I was certain I was in early stages of alzheimers) and my loss of concentration. I'm dreading the next step, but am set up to go next Wednesday to spend the night again and see what will work for me. My husband, who is 9 years older than me, and had ALOT of apnea symptoms has been using a bi-pap for about 6 years.
I'd appreciate any advice y'all could give me. I'm still in shock, and in a little bit of denial. LOL I've even wondered if they mixed up and sent me the wrong test results, but I know they haven't.

[apneawho]

Hi Newbie,
Even though I suspected sleep apnea, I was in shock when I got my results too. I remember feeling the utter shockand disbelief, and then relief that I finally had some explanation for all my symptoms. You have a great support group here and you will be okay. Sorry you have sleep apnea, but you have an ailment that can be treated successfully so don't despair. Now that I am being treated, my husband has realized that I was not the only reason for his sleepless nights and he is going to be evaluated this week.

[robysue]

Yes, it's shocking to get the diagnosis---even when you are half expecting it.

What to do next?

First: Read and RE-read Janknitz's excellent post What you need to know before you meet your DME. It's got plenty of tips on how to get the machine you WANT instead of the machine the DME wants to give you.

Second: Call your insurance company and find out about your coverage. How much they pay and HOW they pay for the equipment. It's particularly important to know if they pay for the machine by code number. It's also important to understand what your copays for the equipment will be and whether you must meet a high deductible before the insurance company will pick up any cost at all for the CPAP equipment. And note that coverage for durable medical equipment is likely to be quite different than coverage for perscription drugs or medical tests. Also get a list of DMEs that are considered to be in-network so that you can comparison shop the DMEs instead of just blindly going to a DME that the doctor just happened to fax your equipment order (perscription) to.

Third: Start doing some research on the available CPAP/APAP machines. Decide which machines are acceptable to you and which machines are not. Around here, the advice will be to hold out for a machine that records full efficacy data---in other words a machine that records leak data and data about apneas and hypopneas. And perhaps other useful data as well. Without a full data machine, you can't trouble shoot if (when) something doesn't go as smoothly as you and your doc hope things will go. User software should also be a consideration if you hope to monitor your therapy yourself on a daily basis. But don't bother asking the insurance company, the DMEs, or the doc about software choices: They all seem to think folks with OSA are babbling idiots who are incapable of understanding the data these machines record and are inherently incapable of making intelligent decisions about our therapy based on that data.

Fourth: Start interviewing DMEs that are in-network for your insurance. When you call them, you should politely state that you've been recently diagnosed with sleep apnea and you expect to be prescribed a CPAP machine. Then ask them: If I were to use you as my equipment provider, would you be able to set me up with a <machine or machines of your choice>? If the answer is NO, politely hang up and continue looking for a DME that will provide you with the kind of service you want.

Fifth: Do NOT feel as though you must accept a machine that records only compliance data from a DME that you've never heard of on Thursday afternoon just to get your therapy started Thursday night. You will be sleeping with this machine for the next five years (or more) and you will have a five year (or longer) relationship with the DME. If you are NOT comfortable with the hard sell to get you to accept an Resmed S9 Escape or a Philips Resprionics System One Plus with C-Flex when you talk to the DME after talking to the docor, then WALK. Do NOT sign any papers saying you refuse treatment. Simply tell the DME that you intend to purchase your equipment from a different DME that will provide you with the equipment you need. Remember: You are under no obligation to use a particular DME unless your insurance company specifies the DME. And even then, you've got the (possibly expensive) choice to buy everything out of pocket if need be.

Best of luck

[DoriC]

You've got yourself a pretty sharp doctor. You have many of the classic symptoms of sleep apnea and thankfully it is a treatable condition as you are well aware of with your husband's therapy. You're fortunate that your husband will be able to help you adjust. There are many husband and wife hoseheads here. If you're feeling really anxious about your titration study perhaps you can take some anti-anxiety med with you if your Dr agrees. Just think of all those symptoms you have disappearing and your improved quality of life, something to look forward to.

[Airplaneman]

I laughed and was happy to hear a diagnosis. To me I had alrady read about CPAP as my brother in law is on one. I was happy because this meant my tirdness problem and fear of falling asleep driving or at work had a solution. My doctor assured me I was in for a dramatic change in my lifestyle and I belived him. It has been one week on CPAP and its a new life with tons of new possibilities now exists. I hope you get over your shock and get excitde like I did.
With kind regards,
AIrplaneman

[rested gal]

After you read the great information at:

LINK to Janknitz's excellent - "WHAT YOU NEED TO KNOW BEFORE YOU MEET YOUR DME Part I"
http://maskarrayed.wordpress.com/what-y ... me-part-i/

Stick this next link in your back pocket, so you'll know the entire names of machines which give "full data" (the ones in blue) as well as which ones you want to reject (the ones in red) --
viewtopic.php?p=307168#p307168

Fifth: Do NOT feel as though you must accept a machine that records only compliance data from a DME that you've never heard of on Thursday afternoon just to get your therapy started Thursday night. You will be sleeping with this machine for the next five years (or more) and you will have a five year (or longer) relationship with the DME. If you are NOT comfortable with the hard sell to get you to accept an Resmed S9 Escape or a Philips Resprionics System One Plus with C-Flex when you talk to the DME after talking to the docor, then WALK. Do NOT sign any papers saying you refuse treatment. Simply tell the DME that you intend to purchase your equipment from a different DME that will provide you with the equipment you need. Remember: You are under no obligation to use a particular DME unless your insurance company specifies the DME. And even then, you've got the (possibly expensive) choice to buy everything out of pocket if need be.

robysue's telling you right. If the DME is not willing to provide the machine you want, and you show an unmistakable sign of walking out to take your business elsewhere, you might be surprised at how some of them will suddenly decide they can get you the machine you want, after all.

[ameriken]

When I got my diagnosis, I wasn't in shock at all. In fact, quite the opposite, I was relieved and it was a welcome diagnosis. Like you WalkingZombie (love the username!), I thought it was early onset Alzheimers or perhaps something worse. So, when I first discovered that I might have sleep apean, I was anxiously awaiting to hear that would be the diagnosis. Instead of dreading what came next, I was rather excited about it because it meant I was getting closer to feeling better. I think I would have been in shock if it was NOT sleep apnea because then I'd really worry what it might be. My biggest fear was 'No you don't have sleep apnea, and we don't know what you have".

I'm lousy with technical advice, but what I can say is to go at this with a really good attitude. IMO, successful CPAP therapy is 90% in the mind. Many folks encounter difficulties that I think are more mind than they are equipment. Fear, claustrophobia, paranoia, frustration, etc. They may happen to you but it's good to tell yourself that no harm will come from this treatment. That's how I prepared myself...since I felt claustrophobic in the titration, I had a pretty good guess I might feel that when I started therapy, so I prepared by telling myself that "if you feel claustrophobic, it's all in your mind so don't take the mask off, it won't hurt you. And if you do take it off, put it right back on". And so, anytime I've run into any of the mental difficulties I've been able to push right past them. Of course, you can have mask leaks and other equipment difficulties, but I think with a good attitude you can work through those.

Outside of that, hang around here, especially on a daily basis throughout your first few weeks. It's a great support group and a great place to ask questions and share frustrations. Best of luck to you!

[WalkingZombie]

Wow! What quick responses! Thank you all so much! I have high hopes of getting better and regaining my energy.....if my memory and ability to concentrate also improve I know I'll be doing good! I hate having to fight to keep my eyes open during the day, it's a terrible feeling! Some days are worse than others, today being one of the worst here lately. I was miserable at work. I've gotten into the habit of coming home at lunch and going to bed and staying till it was time to get back to work. I sleep whenever and wherever I can. I feel like I'm literally sleeping my life away! I was starting to think I was just fat and lazy, but with this diagnosis I know there is a reason I don't feel like doing anything! I'm ready to get on with it!

[Gaga58]

Hi Walking...you've come to the right place for good info and support. Like Airplane I was totally excited with my diagnosis, but had already suspected that was my problem since nothing else I'd tried seemed to alleviate my other symptoms!! I'm 53 and USED to consider myself a high energy person, but the last several years has seen my energy go waaaay south and with it (almost!) the ability to give a rip about anything...just not enough energy to care!! So for me...starting this therapy is a delight and the one thing I keep looking forward to is getting back to the person I use to be!! Hang in there...read everything they tell you and come back here often....it's great place with great people!! Good luck to you!!

[susanyp]

I'm with you! I have my titration this Fri. I couldn't believe it, and still don't! I'm SURE they will look at themselves and say, "why is this person here??!!!" ...maybe, but probably not. I've gotten great advise from these folks here and have printed it out and studied it. I'm loaded for bear when the DME contacts me! Even thought it's confusing, listen to what they are saying. They are wise and knowledgeable. Good sleeping!!

[ThirdOutOfFive]

I was blindsided by the dx. I just did the sleep study because hubby was tired of my snoring. I never woke up gasping for breath. I was drowsy in the morning, but have been that way for 17+ years with a dx of fibromyalgia. I just did this to shut my husband up. I guess it worked -- he hasn't complained about snoring once since I started using PAPpy!

I thing I'm going to complain about his snoring, just to see what happens. . . .

[DoriC]

Now, now, play nice you two!!

[EO_123]

Maybe we need T Shirts

Sleep Apnea - It's not just for snoring

[Resister]

Be thankful your doc ordered the sleep test first! I've heard horror stories of all kinds of heart related tests/scares that people go through before doing the sleep test--which ends up being the root of it all.

I was in shock when I first got my diagnosis, too. In fact, I was horrified. Now, it doesn't seem like the big deal I made it out to be. You took a great first step by coming here

[ems]

I was in utter disbelief. I kept thinking that maybe they had mixed my sleep study up with someone else. I didn't even know what sleep apnea really was, no less SOSA. I'm still in a bit of denial... thinking that any day now my doctor will call and tell me it was all a mistake.

I'm being 100% compliant tho, while waiting for her call.