Newly Diagnosed Yesterday (still sinking in)

[gregoryjames]

Hello all.. I am brand new to the community today.

A couple months ago I innocently asked my ENT doctor during visit for an ear infection about my snoring (my wife asked me to mention it). He stated it might be a good idea to rule out OSA - something I have heard of but really know very little about.

I met with the sleep specialist who said with my symptoms, diabetes II, and high blood pressure it was more than 50% likely I had the issue. My insurance would not cover the overnight study so I had to use the home testing system.

Yesterday I went in and met with the doctor.. he said that in his experience the home studies generally underestimate the issue. The average it showed was 15 instances per hour and my lowest recorded oxygen was 86. He said this put me on the borderline of the mild to moderate and recommends starting CPAP as the first treatment.

A CPAP sleep study has been scheduled for the first week in April although he states that the insurance may decline and state that an auto CPAP is to be used.

I guess my issue is - at this point... What Do I Ask? How do i ensure I am getting the proper machine and that insurance is treating me properly in terms of the treatment? What do I expect here this next month as I get started.

I am truly a newbie at this. The thought of wearing a device every night (possibly for life) when I am only 43 right now is really daunting at the moment.

I asked the doctor - I do not seem to really feel tired during the day. I know I have trouble sleeping and feel tired some during the day but it does not seem to impact. His response is that I may have had this for so long my body has gotten used to it. That within a month or two I should notice a difference in how I feel as well as possibly some changes in my high blood pressure and even diabetes control.

I guess right now is still that "what?" stage of any diagnosis you were not expecting. I mean I already deal with a few medical issues at only 43 and here is another potentially life long condition.

Thanks to all for ANY advice. I look forward to getting to know the community.

Gregory Williams
Age 43
Munster, IN

[LSAT]

Having a titration with an Auto CPAP would not be terrible. A sleep study shows what happened during one specific night with dozens of wires connected to you. Sleeping with an Autoset machine for several nights in your own environment may give a better picture.

[Pugsy]

Actually knowing now what I wished I had known back then...I would prefer doing the auto titration at home.
I had the official in lab cpap titration and they didn't get it right. I slept horribly and didn't get much REM where my OSA is worse. I ended up doing a titration at home anyway with an apap machine.

As long as you get a full efficacy data apap machine...titrating at home stands a real good chance of success and if for some reason a problem develops and you end up needing an in lab titration you can always do it later if need be.
I say full efficacy data apap machine because there is one model ResMed (AirStart is the model name) apap machine that isn't full data and you are going to want full data to best evaluate what pressure you are going to end up needing.

The mask part of this therapy is the most difficult part IMHO. Let's face it...sleeping with the alien on our face isn't exactly normal but with the right mask it really isn't so bad. The right mask sort of disappears after the brain gets used to its new best friend. If you don't have chronic nasal congestion issues that you can't clear up enough to breathe easily through your nose then I suggest you look at the nasal pillow masks available. They have the least area touching the skin to require sealing. Start with easy first. If easy doesn't work out...then move on to something else if needed.
If you have chronic nasal congestion issues that force you to breathe through your mouth all the time then you may likely need a full face mask. They are larger and bulkier but people do have good success with them. Just maybe takes a bit more work getting there.

It seems like more and more insurance companies are opting for home studies and doing apap machine titrations at home.
Kaiser has been doing it for years. It's cheaper than the in lab sleep studies and for the bulk of the people with sleep apnea it's going to be plain jane vanilla Obstructive Sleep Apnea which is fairly easy to get the therapy dialed in at home.
If for some reason yours sleep apnea ends up being more than the plain jane vanilla OSA then an in lab sleep study can always be done later.

[LoBattery]

I was on the edge of moderate like you at16 events/hour. While moderate it lead to a heart problem. To get through my study it took over 2 1/2 months. I wished I had just gone out and bought an autoset machine first thing and had those months of data to work with. Nothing in cpap is easy. The concept of wearing a mask the rest of my life was hard to grapple with. I am not a mouth breather so I chose Dreamwear nasal mask. That allows me to move around at night in almost any position with minimal issues. Almost any pressure setting is better than no pressure. Autoset is a start and then you can work with the data. Just one more thing you never wanted to learn. If you look around you can find equipment for reasonable cost.

[SunnyBeBe]

Gregoryjames,
This site is a great place to come for info, support, tips, etc. There are many experienced users here who can really give you some things to check out. I'm not in that category yet. What I can share is how I can relate to how you were surprised with your diagnosis.

I was not a typical person that you might think needed Cpap. I thought I got my rest at night and didn't really feel tired during the day. A sleep study over 20 years ago, showed no problems, except that I had multiple awakenings. (Insomnia, for which they had no explanation. Stress.) A couple of years ago, what got my attention and to a doctor this time was a few INSTANCES of waking up suddenly, in a state of panic. It wasn't like I couldn't breathe. It was like I was dying. I wasn't sure if it was a panic attack or what. With a sleep study, I was found to have hypopneas or shallow breathing. I've never been much of a snorer. Cpap treatment really helped with that and I feel so much better.

I hope that once you get a good fitting mask or nasal pillow, you'll adjust. My adjustment went like a dream and I've had very good results. No more panic awakenings and I feel so much better. Be prepared for that. It's not something that you really want to do, but the payoff is tremendous. It's a small inconvenience for improved health and happiness, imo.

[Cardsfan]

Hi and welcome. If you want to see some options of different masks, look at https://www.cpap.com and read the reviews.
Also, getting used to a mask is not as horrible as you will imagine. It it like wearing glasses or braces on your teeth. At first you notice, then little by little the mask feels more like it belongs on your face and you barely notice it is there.
Stick around, there is lots of help here.

[PST]

People here all understand what you are going through. No one likes the idea of needing CPAP therapy for the rest of their life, but it would be unrealistic for a doctor to imply that it will be temporary. CPAP is almost always like glasses or a hearing aid, something that compensates for a disorder rather than curing it. On the other hand, lots of people adapt easily and find they can treat it as a fact of life. After the adjustment period, it becomes one more bedtime ritual like climbing the stairs and brushing your teeth. What I really wanted to comment on, though, is your absence of symptoms. Most of us never get diagnosed until the symptoms become overwhelming. If you took a poll, you'd probably get a lot of people who wish they'd started CPAP five hears earlier than they did, before it started affecting them severely.

[gregoryjames]

Thank you everyone for the support! Greatly Appreciated!

Sounds like the APAP is the way to go for sure. I am assuming that this CPAP study would be in conjunction with an APAP machine and not with another type these days? Wondering if this is something that I should discuss with the sleep specialist beforehand? The way he made it sound is that the apap was something the insurance was "requiring" and that having it set through the studies was more therapeutic - or maybe I was just misunderstanding with taking in the information. I know the cpap sleep study is set pending insurance approval - assuming it is likely they will deny it and just request the APAP but, honestly, I have no idea.

Thank you AGAIN so much everyone for these words of advice.

[D.H.]

Yes, APAP is better. I have a plain old CPAP with no data collection (except an "odometer") for seventeen years. Although I did fine on it, I'm much happier with the APAP that I have now.

Actually, it isn't even an odometer. An odometer doesn't run when a car is idling. This thing ran as long as the motor was running.

[palerider]

Thank you everyone for the support! Greatly Appreciated!

Sounds like the APAP is the way to go for sure. I am assuming that this CPAP study would be in conjunction with an APAP machine and not with another type these days? Wondering if this is something that I should discuss with the sleep specialist beforehand? The way he made it sound is that the apap was something the insurance was "requiring" and that having it set through the studies was more therapeutic - or maybe I was just misunderstanding with taking in the information. I know the cpap sleep study is set pending insurance approval - assuming it is likely they will deny it and just request the APAP but, honestly, I have no idea.

Thank you AGAIN so much everyone for these words of advice.

some people look upon titration studies as the holy grail of information regarding what pressures you need.... however, they may be "The GOLD Standard", but they are, in many ways, woefully inadequate if you think about it.

you're in an artificial environment, all wired up and less comfortable than normal. it's *one night* and likely only part of that night. reading any titration report, you'll see that "oh, your good pressure was 12cm, you slept for 45 minutes at that pressure!"

it's a simple fact that sleep varies from night to night, you'll have better and worse days with the same exact settings. yet the "gold standard" is a small number of minutes tested on one night.... a brief photograph taken during the marathon run that is your sleep.

it's not surprising that sleep studies are somethings quite wrong, what's surprising is that they're ever right!

[kteague]

Hello and welcome. Looks like you're getting some good information here. I'll just add that if they do a home titration on apap, you'll want to know if it is a loaner machine or the machine you will be keeping. If it's a loaner, it doesn't matter if it is not new. If it's a keeper, get the full price before agreeing to take take it. You just don't want to pay new prices to keep a previously used machine. And if their plan is to swap it out, you'll need to be sure the keeper isn't a downgrade in data capabilities and what the price will be before signing anything agreeing to keep it. Since you are already dealing with insurance issues, I have to wonder if they are going to pay for your machine. It may be that after the titration you'll find making a private purchase to be more cost efficient than going through the provider of the test. I like the idea of the terms of agreement for the loaner being separate for the main reason you may find something out during your titration that makes a particular type of machine preferable. For instance, if you are one of the occasional folks who is sensitive to pressure and develops centrals, or if you require high pressures and might do better with a bilevel. I said all that just to say, be careful what you sign.

[Tballinusa]

Your reaction is completely normal. Also, great input from other forum members on here. I remember when I first had a sleep study done. I will say, I have great insurance, Anthem covered everything 100% so I did a sleep study at my local sleep disorder center. I can recall all the wires and probes on my head, arms and legs. If my doctor wouldn't have given me an Ambien I would never had been able to sleep. That being said, the very first night I used CPAP, I slept ALL night long for the first time in many years. I woke up refreshed and was no longer tired all day! Now I am sleeping with my CPAP and mask all 8 hours and am 100% compliant. So insurance keeps supplying all my CPAP supplies at no cost to me. Now, I feel it very therapeutic and even start wearing my mask 30 minutes before bedtime. My new machine is the super quiet ResMed Air Sense 10 Autoset with pressure setting 9-15 but I tend to do best when my machine senses my lowest amount of events at around 11 H2O. The Air Sense 10 automatically senses your apneas and sets itself to the lowest pressure to treat them.

Sooooo, everyone get's used to CPAP at different rates, mine was almost immediate

[sc0ttt]

Just a little lesson:

The C in CPAP means "continuous" not "constant". What most folks in here call APAP is more technically referred to as Auto adjusting CPAP. Neither of the big two suppliers use the term APAP, so it's easy to get confused about what you're getting.

There's a lot of terminology to learn, and a lot of different machines with different naming conventions. When you get your prescription for a machine after your home study, and/or the selection from the supplier, post it here and have us check it out for you before you buy it.

DreamStation

More than a sleek design, DreamStation offers performance to help improve your OSA therapy.

Available in CPAP Pro, CPAP Auto, BiPAP and Auto BiPAP

[gregoryjames]

Followup.. finally got things through my insurance and will be getting the Resmed Airsense 10Autoset APAP on Monday. Not sure what type of mask for sure although they said they will be starting me with a nose mask as a start.

Thanks for all the support and I will let everyone know (and sure will have plenty of questions) starting next week!

[prodigyplace]

Followup.. finally got things through my insurance and will be getting the Resmed Airsense 10Autoset APAP on Monday. Not sure what type of mask for sure although they said they will be starting me with a nose mask as a start.

Thanks for all the support and I will let everyone know (and sure will have plenty of questions) starting next week!

I think that is a good machine. That is what I have, with the heated hose.
Be sure you get the included SD card with it. My DME was not going to put my card in until I told them my sleep Doctor wanted me to bring in the card on my next visit.
With an SD card, you can use the free Sleepyhead software to see what is happening & share with user here when you have questions. I am going through that process now, having the knowledgeable people here guide me in improving my outcome.