newbie and totally lost

[lost in chicago]

I am a newbie and feeling very lost. I have read many of the posts under Our Wisdom and New Users which is helping me realize that my story is not as unique as I had thought. Knowing that I have company is nice but I feel like I am stumbling down a dark path without a flashlight.

My wife diagnosed me and my psychiatrist supported that diagnosis since I am seeing him for depression and lack of sleep made prefect since to him. I wake up several times a night but i have always thought it was because I had to go to the bathroom - a learned behavior I think since I remember waking up a lot when I was younger and wondering why I was awake and thinking "might as well take the opportunity" But, I have never been aware of gasping for breathe when i wake up. My wife says she can hear me gasp and miss a couple of breathes - I have no clue.

What I have been aware of is that I simply can't breathe. I can't breath during the day and I can't breathe at night. Allergies and a swollen nasal passage even when on steriods has meant that I am a constant mouth breather. With an overly large Uvula even breathing through the mouth is annoying. I have a BMI of 28 and would like to loose weight - but at 6 foot and 200 lbs it has been a none issue for doctors. Up until now, they look in my nose and give me a different antihistamine and nasal spray and send me on my way.

At 44, this is something that I am very used to. To be able to sleep at night, I became a stomach sleeper at an early age. I have a standard position that props my jaw open with my uvula falling forward and I am good for the night (at least to the best of my knowledge)

So, I went to see a sleep doctor who said "let's do a sleep study". I then went over the results with him. I forget the numbers but I fell in the medium range of apnea. So, he says let's test you with the CPAP and then we will have the settings. I spent a night with the CPAP and in the morning they said I should come back in a week to get my own CPAP fitted. That was in September and I have haven't been back. That night was one of my worst - I felt like a struggled to exhale all night long. Now, after a holiday with bronchitis and the feeling that I am breathing through a straw, my internist and wife are forcing me back to the sleep doc and to an ENT (to look again at that uvula and nasal passages).

So, I have started to do some research and came across this website. Instead of getting fitted for a CPAP I have made an appointment to just go over the result and get the prescription. But, I had to find out on my own that I could get a prescription and then get the machine on my own. What I don't know is anything else. The sleep center had one type of machine (at least that's all I know of) and then a bunch of masks to try - $2,800 filed to insurance with my final cost being around $700 - a couple of months rental to make sure it works and then whatever insurance doesn't cover. Now I find there is CPAP and APAP and biPAP. It's like someone saying "this is the answer" and then I find there are multiple answers.

I can tell you that sleep has always been an issue for me - even as a little kid. And, like an endurance athlete, I have learned to go long stretches without sleep and still "seemingly" function "normally" - 68 hours no sleep, 124 hours with 4 hours of sleep (trained as an architect) While my wife falls apart without a night of 7 hours of decent sleep, I can go like a camel without water. For me to go weeks at a time with 4 or 5 hours of sleep a night is normal. I find I sleep better that way - most likely that I am so tired that I am not consciously aware of the apnea - I still wake up several times - all the way awake - but I'm not aware of any gasping.

Anyway, so here I am with a doctor who wants to fit me with a $2,800 CPAP and no other real info - will I need follow ups, different machines, different masks, what to expect down the road. I feel like I have seen an internist who says - try this nasal spray and see if it works - give me a call in a few weeks.

Also, the reason I never went back - that CPAP was HORRIBLE. I am a guy who can't breathe day or night and you put on a mask that forces air down my throat? It felt like I was being suffocated and I had a mask on like Hannibal Lector and a rubber band around my head/jaw to keep my mouth shut (I'm a mouth breather). I kept on thinking - what if the machine stops working and my mouth is strapped shut - will I suffocate?

Anyway, so that is me - I think I had to type this out so I could realize my own story.5 months ago I woulda told you I was fine. Sorry that it was so long. Right now, I want to know what I need to do and what I should expect. I read about the stages of getting better and adjusting to the mask. My concern is more along the lines of - should I be pushing for a APAP or something, am I going to have to go back for adjustments? will there be more overnight studies down the road? I read some about self adjusting the machines if I get one that I can record my data on - should I be doing that?

I don't just want to get handed a CPAP and told to come back in 2 weeks - if that happens and I don't get info from another source (like this forum) then I will junk the whole thing and go back to sleeping on my stomach with my jaw propped open even if it is just an imaginary good night sleep.

Please help - thanks. and yes I am totally Lost in Chicago

[jules]

Begin with getting that sleep study report (both nights), getting the prescription in hand for the machine (bilevel machine will have a different looking Rx), and come back and post that information here.

Also check with your insurance for "in network" medical supply places as you don't have to use that sleep doc's DME. Ask you insurance also if they will reimburse for an online purchase.

Find out the mask that you didn't like that night. It will be a place to start is all. It should be listed on the titration report.

[Georgio]

Sounds like you could use some rest. Get a copy of your sleep study and post it here through Photobucket. Then you can get help selecting the appropriate machine.

The turmoil and denial you are experiencing is normal. You will likely be able to adapt to using a machine, and it may change your life like it has done for many of us. Yes, those sleep studies can be brutal. I have been on an APAP for 3 months now and feel a huge difference during the day. I still wake at night some getting used to the machine, but still feel more "rested".

Most important thing: Get a fully data capable machine as a minimum so you can monitor your therapy. If you can an "Auto" machine, in my opinion, is much more comfortable than the straight CPAP. The APAP adjusts it's pressure according to your natural breathing. The result, at times I can't tell the machine is on. I purchased my machine and software outright at CPAP.com and skipped the insurance racket. Stick around here, do lots of research, you have a lot to gain.

Georgio

[lost in chicago]

thanks - getting all that info will be my first order of business. My appointment is next Monday. Most likely, I will post right after that.

[jules]

call the insurance tomorrow and start looking around - you got plenty of homework to do over the next few days

a good DME will be worth it - if you want post more specifics about the area you live in (such as near or in Naperville) asking for a good DME in ........ start a new thread -----

Assuming you have a CPAP script, you can buy an APAP with it at cpap.com. An APAP can be set to run as a CPAP. A local DME that bills insurance might not give you an APAP for a CPAP script.

Okay - enough homework for tonight. Next assignment will be tomorrow night.

[Kiralynx]

Welcome to the Forum!

Lost is pretty normal when first diagnosed. I can't believe it's been three months since I first logged in here.

You might find my first two threads of interest.

Newly Diagnosed
viewtopic.php?f=1&t=35319&st=0&sk=t&sd=a

Visit to the RT
viewtopic.php?f=1&t=35662&st=0&sk=t&sd=a

[jnk]

LiC,

Georgio's point about getting a fully-data-capable machine is very important.

Jules' points about getting copies of your presciption and sleep studies, and about checking with your insurance to find out who is "in network" for you, are all very important.

My only point is: You're not totally lost anymore, because you have found cpaptalk.com.

jeff

[AuntieNae]

lost in chicago .. welcome!

I too have struggled for YEARS with breathing both sleeping and awake. I remember as a child my mom taking me to the doctor because my teacher complaining that I was breathing wierd in class. I had surgery to correct a deviated septum, tonsils removed, etc.

Yes, at first the mask is very suffocating, the pressure of the air blowing at you was WAY more than I could deal with .. that was September. 3 masks later, I am a happy camper and I hardly notice the air blowing too.

Please, hang in there .. this is so worth it. I feel so much more "AWAKE" and my sinus issues are doing much better than ever before. I have an Auto and do download my data to track "how I feel" to what the "data" shows.

Start slowly, keep coming back here for support, ideas, suggestions, etc.
AuntieNae

[lost in chicago]

Thanks everyone,

I am sure I will be back here asking for advice after my appointment next week. I talked to my wife about all of this and she was very happy that I was addressing my apnea. It is funny though - since I have never really talked about (or thought about) any of this before she is a little surprised about how much of an issue this has been with me my whole life. I tend to suck it up and live with things so one of my wife's comments was - why is this causing you more problems now? And my answer was - it isn't, I am just opening up and dealing with it now.

AuntieNae - the comment about making too much noise breathing in class - man, the is dead-on. The rule in our house was you had to chew with you mouth closed. A reasonable requirement for most. I remember holding my breathe for every bit of dinner I took. I had my deviated septum taken about when I was in college. I can't say I would look forward to the tonsils and uvula. I'll have to see what the ENT says about that.