New and Desperate...

Wow, great stuff... what a great community and forum...

@NightMonkey
Thanks thats good to know that some of what I have been doing is suggested.

@cflame1
It was definitely a journey to find a doc that didn't have that. Most would get offended when I came prepared. That is sad. In our profession, if someone comes prepared and understanding the basics, its that much less work we have to do. Kinda sad but again, I am pretty blessed to receive respect from a doctor that isn't afraid to admit he doesn't know it all...

@robysue
No insult intended with the cynic comment. Just an observation...I meant absolutely no harm. I will keep your comments in mind. Sure would have been nice for you to say at the end of your post that in my case "you would hope mine will go better than all the others that have had such terrible troubles..." but alas no such luck. So please allow me to say that I do hope yours is getting better and continues to improve. All the best to you for a better and continued nights rest soon and much more.

@carbonman
Awesome poem... and so my journey begins. Thank you for the welcome.

@SleepyHound
Its nice to be at the same incoming level as someone here to share our current experiences. Keep me posted on yours as well, would ya? If I come up with anything on my end, I most certainly will share. I truly hope you have a restful sleep soon.

@DavidCarolina
Thanks a ton...Those are seriously excellent tips. I have been working on a few of the ones you mentioned as I have experimented the last couple years. Exercise and smaller meals always seem to help. My weight has remained a perfect 170 since I was 18 so I am again blessed in that too. Gonna check on the others today.


Thanks so much to all of you for making me feel so welcome. I am so digging this forum and I am sure I will talk with all of you soon. Thanks again.

Regards,

Cc

dtsm wrote:

causticcompliance wrote: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....

@dtsm - sorry I missed thanking you as well...No offense intended. Thanks for the suggestions on both the mask and the xPap. Appreciate it. I am not expecting immediate gratification but I am hoping for better than what I am getting now...asap.

causticcompliance wrote:I am not expecting immediate gratification but I am hoping for better than what I am getting now...asap.

Two years ago right now I was in your very same shoes. Waiting for the titration sleep study. Deciding on what equipment I wanted even before the sleep study. Very much impatient too. Wanted that titration study done yesterday so I could get right on to feeling great because I just "knew" that I had all my bases covered.

I did end up buying my APAP off of Craigslist so that I could get the machine that I wanted. Actually had it before the titration sleep study. Can't get a machine without RX unless you purchase like I did. I would have/ could have titrated myself but I decided to wait the 9 days till titration sleep study. Longest 9 days I think I have ever experienced.

I needed to try out masks...Need a prescription for those now also. So it can be very expensive to try to speed up things on your own. I didn't have a mask....

While I sure hope that you have the immediate success that you want (I do understand where you are at) Murphy's law often sneaks in and throws us some curve balls. My titration study was a nightmare. Barely slept enough to meet criteria. Ended up doing a sort of self titration because the pressure prescribed wasn't what I needed (long story won't go into now).

Utilize the medical system to your advantage as much as you can. If you just can't wait and just have to start things on your own, it can be done. Got to get a machine and mask first. APAP and software will make things easier.
Stick with either ResMed S9 Autoset or the Respironics PR S1 machine like I have in my profile. They are the most common and software is available, easy to read and use. Some of the other machines the software is either hard to get or to be honest, lacks some of the data graphs which are extremely useful when self titrating.
Even if you do self titrate DMEs do come in handy for mask supplies. While I never used my insurance for machines (I now have 2 M series APAPs and this PR S1 APAP) I have used DME for mask and replacement parts with insurance.

RX is needed for machine, humidifier (yes, you need one) and mask unless you find someone to supply these items without it. Most online suppliers will require it. Craigslist is an option but beware of the usual craigslist stuff and make sure that the machine is exactly what you might want. Most listings on craigslist are for older machines and you don't want older type of machine because even if datacapable, card readers needed might not be easy to find. The new machines use SD cards and so much simpler to use, no special card reader needed if your computer has a SD slot.

I got lucky and found my first machine on Craigslist. Brand new, zero hours. User had 2 and wanted money more than he wanted backup machine. He was local so I didn't have to risk sending money and not see machine. Cost was just about what I would have paid with insurance and my copay. So I was happy.

To get around the RX requirement.... any physician, NP or PA, even dentist can write the script. Family doctor even if he will do it. Doesn't have to be sleep doctor.

When is the titration study scheduled? Are you willing to wait for all those hoops or do you wish to get things started right now? It can be done.

It is an adjustment process; not only for you, but for your family, pets and any friends that you care to share the info with.
Small children need to be introduced gently, in a controlled environment--so they won't be frightened. Humor helps.
Pets, well, it depends on the pet. Animals can be destructive, and the equipment is vulnerable; but many cpap'ers welcome their pets.
(no snakes, please. )
Do not let the well-meaning misinformation frequently dished out by friends and relatives bother you--there is a lot of bad advice out there--and we've heard all of it--or have we?

Just got the call 2 hours ago...I go in tonight. <fist pump> yesssss...
I immediately called a couple of my fellow co-workers that had the same basic symptoms as I do....not exactly but very similar. I mentioned some of the things people are saying out here and their response was completely opposite.

Just to explain, I am not living my life waiting on this to be a panacea guys, I only want some basic relief. I don't need to feel like I am 20 again, I just want to feel better than I do now. Both of my fellow employees said relax, take it easy and enjoy the titration. Be positive...it is gonna to be better.

I am not claustrophobic, I still can sleep through a hurricane even now...I just don't get fully restful sleep. My current sleep is averaged at 5 -6 hours and those 5 hours are BLACK. I don't hear squat and I don't remember squat. My fiance told me a bunch of our friends stopped by one night and I had fallen asleep on the sofa. They had a stinkin party right around me and I had no clue... I even told the lady that did my original study, "it isn't gonna show anything, I had a great nights sleep tonight..." closed my eyes and fade to black...with all that crap on...no problem.

Soooo my chin is up in a defiant stance and I look forward to my titration tonight with a positive and happy outlook, but...I have am not nor have I ever been afraid to chew a few feathers. If this thing doesn't go well tonight I will be here tomorrow with humble words and sincere tears to let all of you know you were right...but if it goes well and I actually feel better you most certainly will say I am one of the lucky few. <giant grin>

Here goes...
Hugs to all,

Cc

causticcompliance,

I really do wish you the best of luck. I'm always happy when someone does wind up in that lucky few who take to this therapy like ducks to water.

But please DON'T be disappointed if the titration study goes worse than you expect, finding the right mask takes longer than you expect, and unanticipated problems crop up.

causticcompliance wrote:Just got the call 2 hours ago...I go in tonight. <fist pump> yesssss...
I immediately called a couple of my fellow co-workers that had the same basic symptoms as I do....not exactly but very similar. I mentioned some of the things people are saying out here and their response was completely opposite.

Just to explain, I am not living my life waiting on this to be a panacea guys, I only want some basic relief. I don't need to feel like I am 20 again, I just want to feel better than I do now. Both of my fellow employees said relax, take it easy and enjoy the titration. Be positive...it is gonna to be better.

I am not claustrophobic, I still can sleep through a hurricane even now...I just don't get fully restful sleep. My current sleep is averaged at 5 -6 hours and those 5 hours are BLACK. I don't hear squat and I don't remember squat. My fiance told me a bunch of our friends stopped by one night and I had fallen asleep on the sofa. They had a stinkin party right around me and I had no clue... I even told the lady that did my original study, "it isn't gonna show anything, I had a great nights sleep tonight..." closed my eyes and fade to black...with all that crap on...no problem.

Soooo my chin is up in a defiant stance and I look forward to my titration tonight with a positive and happy outlook, but...I have am not nor have I ever been afraid to chew a few feathers. If this thing doesn't go well tonight I will be here tomorrow with humble words and sincere tears to let all of you know you were right...but if it goes well and I actually feel better you most certainly will say I am one of the lucky few. <giant grin>

Here goes...
Hugs to all,

Cc

I have some positive feedback. I did a split study - both on the same night. When they woke me up I didn't wanna! However, I reside 45 minutes from the sleep clinic, I was concerned about driving home feeling "sleepy" well once I took my shower, I was wide awake, had a great day, didn't even feel like I needed a nap, had much more energy than I'd had in many moons. Felt great. The following week I got my results and I started researching and found this site. FYI - it was two days before Xmas, hit a couple of stores very early that were open 24 hours prior to Christmas to finish my Christmas shopping LOL.

I have a lot more energy than I did, I don't fall asleep at the drop of a hat, I'm much more calm and patient and can cope much better with my stressful environment. That means a lot to me. Best of all, I don't get up 2-4 times a night any more, I sleep right through 7+ hours a night. Can't say I wake up REFRESHED! but certainly a lot more alert and now I'm not afraid of driving like I had been prior to being diagnosed. (Even short 20 minutes trips were scary!) Now if I can just lose that 50 lbs I put on!

Good Luck to you!

causticcompliance wrote: I mentioned some of the things people are saying out here and their response was completely opposite.

Sorry, I haven't followed the thread. Can you be specific?

Not that we members don't regularly contradict each other.

causticcompliance wrote:I am not claustrophobic, I still can sleep through a hurricane even now...I just don't get fully restful sleep. My current sleep is averaged at 5 -6 hours and those 5 hours are BLACK. I don't hear squat and I don't remember squat. My fiance told me a bunch of our friends stopped by one night and I had fallen asleep on the sofa. They had a stinkin party right around me and I had no clue... I even told the lady that did my original study, "it isn't gonna show anything, I had a great nights sleep tonight..." closed my eyes and fade to black...with all that crap on...no problem.

Hi Cc. Sounds like me. I took to "CPAP" the very first night I tried it...with an ancient, noisy borrowed machine and a borrowed mask that was way too big for me. Even with a ratty huge mask, and quite a few wakeups during the night from leaks springing out here and there, I felt better that next morning than I'd ever felt in the morning.

There'll be adjustments to make -- right mask, right pressure, plenty of "comfort" things to work out -- but I don't think you're going to have any serious problem at all using "CPAP." You have the right attitude. I predict you'll have a smooth titration study and will be a very early "CPAP success story."

The mask you get will be the #1 key to being able to "do" CPAP effectively and...most of all... comfortably.

Welcome to the board, and let us know how it goes.

roster wrote:

causticcompliance wrote: I mentioned some of the things people are saying out here and their response was completely opposite.

Sorry, I haven't followed the thread. Can you be specific?

Not that we members don't regularly contradict each other.

The OP has noted that while the handful of people he knows who use CPAP all claim CPAP made a huge INSTANT difference in their lives and that in his original post, the OP expects absolutely NO problems in adjusting to CPAP, several of us (particularly myself) dared to suggest that sometimes adjusting to CPAP is not easy and that even folks with good attitudes towards CPAP can and do run into problems when they actually start using the machine and that one needs to expect the need to be patient and not expect INSTANT results.

Oh Robysue...you do know how to test people don't you dear? Please Be nice?
This will be my first and last time asking nicely before I take action to not return to this forum. If you prefer that I not come back you only need ask once and I will not return.
I don't believe I have attempted to provoke you in any way...and have done my best to apologize if my words were misunderstood. Also putting words in peoples mouths when they are clearly not in a previous post e.g - [""... the OP expects absolutely NO problems in adjusting to CPAP""] is completely unnecessary and provoking. Please stop. As mother says, if you don't have anything nice to say, don't say anything at all.

Ok...Got back a little bit ago from the titration. Amazing. I can tell an immediate difference...a cup of coffee is actually making me shake this morning. Haven't had that in a year. <breathing in; deep exhale> ahhhhh....

Now, I will say that the evening didn't go as well as I had hoped...BUT... that was not my expectations nor was it the mask/machines fault...that goofy tech kept coming in, turning on the light and adjusting a heart rate sticky and the waist belt...grrrr... if she hadn't done that I
would have had a straight 7 hours....she woke me up 3 times...I finally said as kindly as someone can at 2 in the
morning "can you please just let me sleep?" she explained why she did it then apologized... out I went and 3 hours later I woke up feeling great...finally.

She fitted me with two types of masks to try before we got started, a basic full covering nose only mask and the
pillow something or other that goes in my nostrils... the pillow one was magical. Although it did make me look like a cross between my dog growling and someone holding up the tip of their nose to show their front teeth it was perfect. One thing I might not like about it though is this morning my nostrils have a new natural flare to them <looking in the mirror at myself> but it does give me a sort of sexy dramatic look I might start to enjoy


The tech warned me that I may crash this afternoon sometime so not to be alarmed by that because of course I didn't get an uninterrupted nights sleep but the difference from yesterday morning to now is astounding. I am fully aware not everyone will or has felt this way on the first night but I am whistling and skipping.
Happy to be one of the lucky few out here, hope you all have a great day and a great nights rest.

Cc

P.S. one other note, it did take me a half hour or so to stop fighting the breathing the machine was helping me with but all I did was grab a hold of a positive attitude and used a type of relaxation technique to focused on my toes, then my feet, then my legs, then ...on and on... really helped a lot to get past the mask and also let the machine do its thing. Besides, I was so exhausted they could have stuck a pigs rump up my nose, as long as it helped me breathe better, and I wouldn't have cared.

Way to go, causticcompliance!! You have the right attitude and you are off to a great start! Please stick around and encourage other newbies.

Congratulations. That hurdle is over and done with.

I am truly glad that things went so well for you. Any idea on time line for DME thing? Sometimes it moves fast and sometimes at a turtle pace.

oh thank you both so much... I have to admit I was as nervous as I was excited to get started... simply because of some of the things I read; but the encouragement you all gave and the good attitude helped a lot. Still a ways to go but "my toes are in the water and it feels warm"

DME is tomorrow, I go on vacation in SC on the 15th so my doctor is giving it a bit of a shove for me. After some of the advice I received out here to make some calls I called my doctor direct and asked if he could move things along at all (actually begged and promised the scheduling nurse too that I would send her a pretty bouquet if a cancellation came in and I could be on the top of the list) and the lab called 3 hours later. Just sent the "thank you" bouquet 15 minutes ago...

Thank you all again I know I probably will need more advice than give it for now but I will help encourage any way I can.

TTYL

Cc

Make sure you are well versed on machine models and which ones are data capable.

ResMed machines....anything with Escape in it are NOT fully data capable.

Respironics machines.... Look for the word Plus in it at the beginning part of model number. Some models will say "C Flex Plus" at the end of the name. That is okay. The ones that aren't okay will say Remstar PR System One Plus Cpap machine. Note where the Plus is mentioned.

Most APAP machines are fully data capable except the Resmed Escape Auto. Note the word Escape again.

Other brands of machines and their models are not as common and software may not be as readily available. So if you can find out ahead of time exactly what is being offered, you can check to make sure. ResMed and Respironics software are readily available.

Don't accept anything less than fully data capable, no matter how much that impatience factor kicks in. In the long run, you will thank yourself. It is harder to trade later once you have accepted a non data machine, should they want to supply one.