[Diagnosis] Already giving me headache...I'm not a technical person

[CarolC]

Hi folks...had a home sleep thingie that diagnosed me with sleep apnea. So tomorrow night I'm going into a sleep lab where they'll wire me to their gizmo and let me know how bad I am and what kind of treatment I need. Already reading many posts on this forum I feel I might easily get frustrated by how technical it sounds. And I have lousy medicare and don't know if I'm going to have to buy own equipment...and I wouldn't have a clue what to buy. Healthcare around here isn't the best so I assume I'll have to actively research on forums like this one, to get myself treated. I think I've had sleep apnea for years, but I spent day and night taking care of husband who had dementia and parkinson's and didn't see doctors myself. He passed away in December so I started to have some doc appts...when my new primary care doc asked about sleep and saw the big circles under my eyes he thought I might have a problem. Looks like I do! Can anyone direct me to a forum here that would be best for complete newbies who are clueless when it comes to data and what all the wonky technical stuff is about? Thx in advance...I hope to learn lots here and to one day contribute, so I can help others! 

[SideSleeper]

Welcome, Carol--you have come to the right place for the help you need! Just hang on and the real experts will chime in. As for Medicare--they will pay 80% of their adjusted cost just like for any medical condition--tests and equipment included. If you have a secondary insurance it should pay some or all, depending on our coverage, of the remaining 20%. Now is the time to take care of yourself--sorry for all you have been through.

[MitchS]

Hello, Carol!

You have come to the right place for all things related to sleep apnea. This Wiki article on Machine Choices will give you some good information on how to choose the best cpap machine and which machines to avoid. Be sure to ask a lot of questions. We have all been new cpap users and needed help getting started, so we understand how daunting it can be. Determination and a willingness to try new things will go a long way in getting your treatment dialed in. 

Best wishes with your new journey.

[Big Guy]

Hello Carol! You've come to the right site. I've only been a member here for about six months or so now. I've learned a lot in that time. 

There's some very knowledgeable members here that can lead you in the right direction. Stay tuned! They'll be along soon.

[RayBee]

Hi Carol.

Welcome to Apnea Board - the best resource available for support on your Sleep Apnea journey and CPAP equipment info.

I am new to all this stuff too. I was diagnosed a little over a year ago. Been through 6 different Sleep Studies, 8 or so full-face masks and one "nose-only" nasal mask. I don't say this to discourage you in any way, but encourage you to stick with it, ask lots of questions, do lots of research, and feel so much better for your efforts. Mine took a long while because, I guess, I'm special. I have some Obstructive Apnea's (OSA), but 3 times more in Central Sleep Apnea's (CSA). The combination is Mixed or Complex Sleep Apnea, and in my case 40+ per hour. Because I am "special", it took quite a while to get the right diagnosis. This beats getting a hasty and inaccurate diagnosis and an inappropriate machine prescription. I'd like to think that doesn't happen though.

Suffice it to say that there are quite a number of different PAP Machines available to treat different needs. And seemingly countless mask types, makes, and manufacturers to accommodate your specific needs and provide you with the best comfort possible for you. You can be quickly overwhelmed.  Again, don't be discouraged because of this.

If you look at the Apnea Board long enough, look at the left pane in the user information area. You will see what equipment the members are using. You will see a fair amount of variety, but will probably notice familiar equipment models appearing again and again. That's because those makes and models are quality, reliable, comfortable, effective, and the list goes on. They are common here for a reason. This hopefully will reduce the clutter of equipment choices considerably. Also, you might recognize these names when you get your sleep study equipment.

I agree, we all started somewhere. I feel like I'm still learning a new language at times and still learning about the equipment I current use. But at least I'm on my way and I feel great compared to a year ago. Actually I think I am feeling notably better every day - the more I use the equipment, and the more I learn to use my equipment properly.

I apologize for the length of this post, but one last note... Don't skimp on keeping your equipment clean. You don't have to pay a king's ransom for special equipment to keep things clean, unless you can afford it and want to. But you do open yourself up to getting sick if you don't adopt good practices in keeping your equipment clean.

All the best and please post your progress.

Ray B.

[mesenteria]

Carol!  My, but you have been through the ringer the past several months.  You're probably numb from all the changes, none of them what you could call building or sustaining if evolutionary.

Go slow.  Your apnea took time to develop, time to discover, and it will take much less time to figure out how best to treat it.  I suspect you'll know a great deal more in just a short while simply from knowing some facts, a few, and what they mean for your successful PAP treatment.  

I was very green, and greatly surprised, and dismayed, to suddenly develop atrial fibrillation.  After several months and many tests, the last one they could think of, the sleep lab pegged me in the 'severe' category, me a lifelong runner and cyclist who has always eaten well and whose only vices have been chocolate, my wife, and my three daughters.  Okay, and electric trains as well.  And classical music.  I'd better stop.

I'm still trying to figure it all out.  Fortunately, we have some truly dedicated and knowledgeable members here to pretty much live on this forum, and they'll help you to tweak your machine's processes so that you get the greatest benefit, psychologically and physically.  Along the way you'll learn a lot about yourself and about the subject of sleep apnea.  

Go easy on yourself.  Every day from here on is still a full 24 hours in length.  You have plenty of time to get a grip on this intensive and rewarding process.

[Gideon]

Hi folks...had a home sleep thingie that diagnosed me with sleep apnea. So tomorrow night I'm going into a sleep lab where they'll wire me to their gizmo and let me know how bad I am and what kind of treatment I need. Already reading many posts on this forum I feel I might easily get frustrated by how technical it sounds. And I have lousy medicare and don't know if I'm going to have to buy own equipment...and I wouldn't have a clue what to buy. Healthcare around here isn't the best so I assume I'll have to actively research on forums like this one, to get myself treated. I think I've had sleep apnea for years, but I spent day and night taking care of husband who had dementia and parkinson's and didn't see doctors myself. He passed away in December so I started to have some doc appts...when my new primary care doc asked about sleep and saw the big circles under my eyes he thought I might have a problem. Looks like I do! Can anyone direct me to a forum here that would be best for complete newbies who are clueless when it comes to data and what all the wonky technical stuff is about? Thx in advance...I hope to learn lots here and to one day contribute, so I can help others! 

Welcome, as others have said we can and will help you if you want us too. 
We give our best advice when we have data to base it on, the first of that data is your at home sleep test.  I do highly recommend that you get a copy of that sleep test so you can keep it in your Apnea folder at home.  Post it here and we can help you understand it.
Your task for this next sleep test is to go, let them wire you up and simply go to sleep.  Get a copy of that one and post it here too.

Many of us here are on Medicare and can help you navigate through it.  

Your machine.  We want you to get a machine that can adjust along with you for the life of the machine which is rated at 5+ years, many have lasted much longer.  We like the Auto CPAPs because they are much more flexible than a fixed pressure CPAP and can automatically adjust your treatment as your conditions change.  That can be as simple as getting a new pillow, or sleeping on your side instead of on your back.  The machine we usually recommend is the ResMed AirSense 10 AutoSet or the AutoSet for her.  I won't bore you with all the technical reasons.  This machine collects detailed data that can tell what is happening to your breathing on a breath by breath basis if needed.  It is this info that makes it fairly easy to suggest tweaks in the settings to better resolve your apnea and make you more comfortable.  This is a far cry from the dumb brick of a fixed pressure CPAP that some DME's will try to give (sell) you.  The cost to you for the state of the art ResMed AirSense 10 AutoSet or the AutoSet for her is the same as the cost of the dumb CPAP brick I was mentioning.  With the dumb brick the only way you can definitely verify that it is working for you is to take another in-lab sleep study because they generate no data other than how much you use it.  That is called compliance.  Using the ResMed AirSense 10 AutoSet or the AutoSet for her is almost like having a sleep lab test every night, but without all the wires and monitors attached to you.

[ardenum]

Getting the right machine will depend on the sleep test results, so once you're done be sure to have the doctor or the technician give you the complete data from the study, it would be perfect if they put it on a usb drive and even more awesome if they put the complete data on it even the eeg wavelengths.

It's your data so you naturally have the right to have it.

[Sleeprider]

Carol, you have already been diagnosed with sleep apnea, and you have limited insurance. You could decline the clinical sleep study and just request that your doctor prescribe an auto CPAP so that you can self-titrate your pressure needs. We of course recommend the Resmed Airsense 10 Autoset or Autoset For Her. By avoiding the clinical study, you can avoid a significant cost of $1500 to over $2000 for the study. As long as your diagnosis from the home sleep test meets the requirements for demonstrating the medical necessity of CPAP as a therapy, there is no need for the clinical study. An auto CPAP machine will automatically determine your pressure needs and we can help you to optimize that therapy on the forum, and you can expect your doctor and equipment supplier should support your therapy as well.

I suspect money is an issue for you, and the easiest way to keep costs low, is to not do unnecessary sleep studies. Having the sleep test may provide you with some peace of mind that you are being helped. I hope that is the case, although in some cases the sleep tests are used to direct you to a fixed pressure dumb CPAP rather than the better auto CPAP which will cost you exactly the same amount through Medicare. Please insist on getting the Autoset, whether you have the sleep study or not.

[RayBee]

Carol, you have already been diagnosed with sleep apnea, and you have limited insurance. You could decline the clinical sleep study and just request that your doctor prescribe an auto CPAP so that you can self-titrate your pressure needs. We of course recommend the Resmed Airsense 10 Autoset or Autoset For Her.  By avoiding the clinical study, you can avoid a significant cost of $1500 to over $2000 for the study. As long as your diagnosis from the home sleep test meets the requirements for demonstrating the medical necessity of CPAP as a therapy, there is no need for the clinical study. An auto CPAP machine will automatically determine your pressure needs and we can help you to optimize that therapy on the forum, and you can expect your doctor and equipment supplier should support your therapy as well.

I suspect money is an issue for you, and the easiest way to keep costs low, is to not do unnecessary sleep studies.  Having the sleep test may provide you with some peace of mind that you are being helped.  I hope that is the case, although in some cases the sleep tests are used to direct you to a fixed pressure dumb CPAP rather than the better auto CPAP which will cost you exactly the same amount through Medicare.  Please insist on getting the Autoset, whether you have the sleep study or not.

Great information. I have to pay 100% for my equipment.    And having to use an ASV machine, the most expensive one on the planet it seems, was a shocking reality.  So I looked for my best deal online.  Found it at SecondWindCPAP.  The person I spoke with was super friendly and helpful.  She not only had the best price on the ASV machine but matched the cheapest price from another company on the mask that I needed.  Then she threw in a free 90-deg elbow too (on the back of the machine so the hose won't kink when pushed up against a wall).  With free shipping and no tax I saved close to $1,000 out of pocket.

If you have to pay for your equipment (yours should be much less than mine), there are ways to save some serious money.  Shop around if you need to.

Ray B.