New and Desperate...

[causticcompliance]

Hello everyone,

Isn't the internet one of the best resources around? ...within reason of course
I am so glad I found this place. Thanks to all who put it up and keep it maintained...invaluable resource to newbies for sure...

Recently (2 days ago) I was diagnosed with OSA. I haven't received all the details yet (exact numbers) but over the phone the Dr said 30 "episodes" per hour during REM. Not sure what that means just yet but that is not really what I am looking to find out.

My real issue is I am feeling awful (this has been going on for 2 years) and since the recent discovery of OSA I am just anxious (not anxiety attack type, more in a hurry) to get in to see what the CPAP can do...mainly because I am going on vacation in a week, for a week and I would really like to get that machine before I do.

I have pleaded with the scheduling people to get me into the "calibration" lab and I let them know they can call me anytime if there is a no show or cancellation and I would be there in the drop of hat...
My questions, for now anyway, are:
Is there any other method or route I can take to get that done quickly?
Is there someplace or someone I can call to move things along?
I have even offered the ladies there a delivered breakfast of their choice and some roses if they can get me in on any kind of cancellation etc...

One important note, they all are very helpful and sweet and do seem to be empathetic to my plight...

Thanks in advance to anyone that can offer tips etc.

Regards,

Cc

[Lizistired]

Welcome.
Start doing your homework on equipment capabilities and your local DME options. Check with your insurance. Don't rush this part!!
Having it in a week won't make up for getting substandard equipment or having a DME that won't work with you.

[cflame1]

Recently (2 days ago) I was diagnosed with OSA. I haven't received all the details yet (exact numbers) but over the phone the Dr said 30 "episodes" per hour during REM. Not sure what that means just yet but that is not really what I am looking to find out.

35 is severe

so you're probably moderate

[Emilia]

30 during REM may mean it is much higher since you can also have events during other stages of sleep. That said, you need to educate yourself about this process and therapy. Start by accessing the yellow lightbulb at the top of the page and begin reading! Also, find a post by forum member, Janknitz, who has a wonderful blog with special posts for newbies. You can link to it via her links under her signature on any of her posts. Rested Gal also has excellent information to share--especially regarding machines.

Since you haven't gone for your titration yet, you have time to learn about different machines and masks as well as what to anticipate with insurance and DME fun and games.

We've all 'been there; done that' so keep asking questions and get all your ducks in a row......

Best of luck!!

[robysue]

My real issue is I am feeling awful (this has been going on for 2 years) and since the recent discovery of OSA I am just anxious (not anxiety attack type, more in a hurry) to get in to see what the CPAP can do...mainly because I am going on vacation in a week, for a week and I would really like to get that machine before I do.

I apologize in advance if this seems as if I'm raining on your parade. But .....

I urge you to be patient. It is far, far better to take the time to get the RIGHT CPAP machine rather than the first one a DME decides to pawn off on you because you are desperate to feel better immediately.

There are two main reasons why I say this:

• First and foremost, most people take several WEEKS to a few MONTHS to start feeling better. A few people go through a serious stage of FEELING WORSE before they start to feel better when they first start using CPAP. It takes time and effort to make it work. And I'd personally recommend that you go on that vacation and enjoy it as best you can and start the serious, hard work of adjusting to sleeping with a hose on your nose AFTER you get back home with some nice R&R to get you into a good mood for dealing with the many adjustment issues---both small and large---that will come your way.
  
  Second, you NEED to do your homework before just accepting a CPAP machine (any CPAP machine) that the DME claims is exactly what you need. You will want a full efficacy data machine. They are NOT the ones that DMEs "give" to patients by default. You should aim for an APAP instead of a CPAP. These also are NOT the one the DMEs routinely set patients up with. You need to find a post by Janknitz. She has links in her signature to several high quality web pages she has written about the games DMEs play with OSA patients and what you need to do BEFORE you sign on the dotted line to receive your machine.

Best of luck when you start your adventure

[causticcompliance]

First thanks so much to all who replied...I am guessing the cynical tones are from well experienced CPAP users. <surprised look on my face>
and yes, that is considered moderate apnea...that info I found here...so thank you all.

Apologies but I kind of mislead everyone...I am not completely uninformed...my only hope was that someone might have a method they used in the past to get into the "calibration" or "titration" a little quicker. I have been actually searching this site and many others long before I joined and posted. Sorry to not say that at first. Now that doesn't mean I know it all. (It took me a lifetime to figure out nobody does) just taking each piece of info with a very safe "grain of salt". Asking stupid questions has been the best way to get more info <wink> ...mostly because people seem to really like to help... its nice.

I work/travel a lot for a medium sized company in the midwest (I.T. Admin - known more as "head nerd" or as my employees call me "Mobile Nerd" <sigh>) and there have been about a dozen people I have talked to that I work with for the last month on these things as well...they currently have them via our company insurance so I hope to at least get the unit they all have said is an "S9"... My research leads me to believe (research is my hobby and my job) that is a fairly decent unit. Some of them even have the auto adjust on theirs.
I know for sure I am in for a ride with what they have told me....but.... every last one of them said it has CHANGED THEIR LIFE (for the good of course) the minute they put the mask on. One of them did have a minor issue with the right pressure at first but he is an admitted BIG guy. He still said it was a vast improvement.
I know we are not all the same but things have got to be better than this... I have developed some pretty strange symptoms over the last two years that I never thought could be caused by a sleep issue...of course I never knew I had a sleep issue so the surprise was inevitable.

-Mood and personality changes
-Depression
-Sugar sensitivities
...and a few more I prefer not to mention.

My doctor understands the challenge of talking to an IT professional and doesn't act all high and mighty when he talks to me... when I first told him these symptoms, he had blood work done and he has told me over and over "your blood work looks good, lets research this". It's a team effort and I feel very blessed to have a doctor like that. Of course he figured it out after a general conversation about my fiance' saying I snore too much and that I sometimes wake up to find she is on the couch. He friggin went "EUREKA" on me. ..........and here I am...

Forgive the long post, I guess it would be my response and introduction... I look forward to talking to all of you more and will post what I find out as soon as I do.

One last and very important note, I truly love hearing from the honest and straight talking cynics as well as those that feel they have been given a bad deal but after reading lots of posts out here, most have a had really good experiences considering the circumstances. It looks mostly like the VA folks had the worst trouble though...and that stinks. Those men and women deserve much better... Yeah, I'm a flag waver

Honesty (good or bad) is truly appreciated but share some good experiences too, would ya?


Thanks tons again for all the replies and happy dreams,

Cc

[BlackSpinner]

Yes you can do it your self if you have standard OSA. (not centrals just vanilla variety throat closing)
Get your primary doc to write you a prescription for something like the resmed S9 auto (the one with data capabilities), get the software, Get some masks and a humidifier.

An auto set 6-20 will set your presure where you need it. The software will allow you to fine tune it.

This assumes you don't need something special like a Bi pap or a Vpap.
One way to know is to see your sleep lab reports.

[causticcompliance]

You "BlackSpinner" are an angel...and you rock...

I will find out asap and get on it.

My best guess is standard OSA but I won't get the official results data till tomorrow.

Thank you again for the positive option and hope...

[dtsm]

You "BlackSpinner" are an angel...and you rock...
I will find out asap and get on it.
My best guess is standard OSA but I won't get the official results data till tomorrow.

Remember this is a marathon and your journey has just started. Others have advise patience...one step at a time. An apap unit with full data capability is a must, there are several options like the S9 which will work well. If you go to cpap.com, read up on the various models.

The most difficult part is finding the right mask, and getting used to it. This too will take time and some experimentation. You might start with a nasal mask and eventually change to a nasal pillow. Others migrate to a FFM.

Don't expect immediate gratification....

[NightMonkey]

My real issue is I am feeling awful (this has been going on for 2 years) and since the recent discovery of OSA I am just anxious

Sleep exclusively on your sides or stomach until you get your CPAP machine. There is at least a 50% chance that this will give you some relief. (But it is unlikely to be a cure.)

On your back gravity works directly on the tongue and soft palate to pull them into the airway. Avoid the back like a plague.

Regarding scheduling, ask the one controlling the schedule if they mind that you call them everyday to check on cancellations.

[cflame1]

I work/travel a lot for a medium sized company in the midwest (I.T. Admin - known more as "head nerd" or as my employees call me "Mobile Nerd" <sigh>) and there have been about a dozen people I have talked to that I work with for the last month on these things as well...they currently have them via our company insurance so I hope to at least get the unit they all have said is an "S9"... My research leads me to believe (research is my hobby and my job) that is a fairly decent unit. Some of them even have the auto adjust on theirs.
I know for sure I am in for a ride with what they have told me....but.... every last one of them said it has CHANGED THEIR LIFE (for the good of course) the minute they put the mask on. One of them did have a minor issue with the right pressure at first but he is an admitted BIG guy. He still said it was a vast improvement.
I know we are not all the same but things have got to be better than this... I have developed some pretty strange symptoms over the last two years that I never thought could be caused by a sleep issue...of course I never knew I had a sleep issue so the surprise was inevitable.

-Mood and personality changes
-Depression
-Sugar sensitivities
...and a few more I prefer not to mention.

My doctor understands the challenge of talking to an IT professional and doesn't act all high and mighty when he talks to me... when I first told him these symptoms, he had blood work done and he has told me over and over "your blood work looks good, lets research this". It's a team effort and I feel very blessed to have a doctor like that. Of course he figured it out after a general conversation about my fiance' saying I snore too much and that I sometimes wake up to find she is on the couch. He friggin went "EUREKA" on me. ..........and here I am...

As another IT geek (there's a few of us on here)... know that you're lucky if you find a doc that will talk to you as a person and doesn't have a "god" complex. Hopefully it'll mean that you'll actually get to have a fully data capable machine and be able to get the software for it (the software fairies are nice once you get the machine)

The software's not hard to learn... and there will be plenty of teachers when you get that far.

[robysue]

I know for sure I am in for a ride with what they have told me....but.... every last one of them said it has CHANGED THEIR LIFE (for the good of course) the minute they put the mask on. One of them did have a minor issue with the right pressure at first but he is an admitted BIG guy. He still said it was a vast improvement.
I know we are not all the same but things have got to be better than this...

Please understand: I am NOT a cynic. I am someone who has invested seven and a half LONG months into adjusting to xPAP therapy. And I can honestly say that I am only now beginning to feel better on a FEW days than I did pre-CPAP. And I am far from the only one on this board who has struggled for MONTHS before starting to feel any positive difference even with 100% compliant use of xPAP, where I define 100% compliance as use it EVERY NIGHT, ALL NIGHT long AND for EVERY NAP during the day.

While it is true that some folks take to CPAP immediately and feel better immediately, in my not so humble opinion, I sincerely believe that EXPECTING to feel better immediately after you start CPAP is setting yourself up for MAJOR disappointment, which in turn can make it much, much more difficult to stick with therapy long enough to sort out the issues that you wind up having.

And by the way, getting the pressure right has nothing to do with the size of the patient: I'm tiny, but I've been through two styles of machines and a total of five different pressure settings between them. Why? Well there have been some serious issues in trying to get my pressure right. And the very slight overtitration for my first pressure setting is at least part of the reason during my first two weeks on xPAP, I had the absolute WORST crash and burn I've ever experienced in my adult life---complete with serious daytime dysfuntionality to the point where I literally thanked God I was a tenured college professor.

Likewise all the other myriad problems of adjustment happen to all kinds of folks: Those who knew right from the start they had OSA and were relieved to get a prescription for CPAP and had superb titration studies where they felt better than they had in years have just as many adjustment issues as folks who were stunned to find they had OSA and dreaded putting on the mask. And the adjustment issues are far ranging: finding a mask that works, yanking the mask on in your sleep, leaks, mouth breathing, aerophagia, increase in excessive sleepiness---possibly due to REM or Stage III NREM rebound, pressure problems---perhaps not enough OAs and Hypops prevented or perhaps the emergence of CAs, insomnia, sore noses and throats, rainout problems, congestion problems, skin sores triggered by the mask, dry and puffy eyes, and more. Obviously not all of these problems happen to all new CPAPers. But most new CPAPers do have to deal with at least a FEW of these problems before they start to feel better. And yes, some of these issues are more serious than others. And some are easier to resolve than others. But all of them can lead to serious discouragement---particularly if you are not prepared to let go of the idea that you will automatically be among the lucky ones and see improvement RIGHT AWAY---as in as soon as you put the mask on your face.

My guess is that all your friends and colleagues who are telling you the mask made a HUGE POSITIVE CHANGE in their lives the INSTANT they put the mask on either do not remember the trials and tribulations they went through (for at least the first couple of weeks) because they genuinely do feel much, much better and may not even remember the difficult first few days clearly OR they may be very worried about sounding too discouraging since CPAP is known to have a 30--50% failure rate in terms of folks who simply just give up and quit the therapy because they cannot seem to resolve one or more of the issues they've run into, often in spite of working hard for several weeks (and occasionally months) before deciding it's just not worth the effort to them.

[carbonman]

I know for sure I am in for a ride with what they have told me....but.... every last one of them said it has CHANGED THEIR LIFE (for the good of course) the minute they put the mask on.
Honesty (good or bad) is truly appreciated but share some good experiences too, would ya?
[/b]Cc

Ode to a newbie: How easy it is.

I wish I could tell you how easy it is.
I put on the mask, I hit the blue light,
I'm adrift in the night.

It did'nt come easy you know,
infact it was a fright.
The straps and that mask,
....and....damn those blue lights,

I screamed and swore,
and cried out in the night,
"Why me? Why me?"
This just isn't right.

Out of thin air, through the ethernet,
came a glimmer of hope, as I cried out my plight,
"..please, don't spook me, don't scare me,
I just want to sleep through the night."

My questions were answered,
my mind put at ease.
We're here to help you,
all you got'a do....
is believe.

So, I listened and learned.
I chin strapped and glued,
and sealed up the holes.
I had tender, scraped nares
and a bruised, bleeding nose.

Night after night, I begged for relief.
"Please, please...give me back my life!"
Then one morning, just after first light,
a release from the pain, the fatigue,
just ever so slight.

Now.....it's just that easy.
I put on the mask, I hit the blue light,
I have a new life.

...as was said to me,
Welcome, pilgrim.

[SleepyHound]

I'm going thru this same adventure with you. I was desperate after my initial sleep study and emailed my internist to beg the office to schedule my titration study ASAP (I knew I had failed my study...felt like I'd been up for a week after a sleepless night, even in a dark room with a Sleep Number bed). My follow up appt to "get results" of my first study at that time was 5 weeks after my study. But I said I couldn't wait that long and then have to wait for them to schedule test #2. My sleep debt was getting severe.

My second study was scheduled approximately 1.5 weeks after my first one, and now, another week later, I just heard from the sleep lab manager that my info has been sent to the DME for insurance verification. I hope to get into the DME this week!!!

I see my internist tomorrow, hoping to get copies of my reports and talk with him about writing a detailed script for me. I admit, I slept very well on my second night in the lab. I found out that the pressure needed for me was 10. I also enjoyed wearing the Swift FX nasal pillow.

Good luck and keep us posted.

[DavidCarolina]

Hang in there. Many of us have been where you are. In fact, many of us still struggle daily to overcome.

A tip or two:

---consider going to a sleep clinic a little further away if necessary to get in soon

--consider using klonopin medication---it can help in the interim to make you feel functional

--consider getting your physician to prescribe oxygen for you

--do your research, lately im studying hyperbaric oxygen therapy which is becoming more available.

--make sure you do everything you can to sleep on your side or stomach NOT YOUR BACK.

--eat smaller meals and make sure youre working toward your ideal weight

--consider using the dental device that helps with snoring and apnea

--above all, realize that illnesses can actually help us, point us toward the direction of seeking God
in our lives, and for the first time really realizing what's important. There is value in that.