Newcomer just saying hi

Hello everyone. I have joined the ranks of the sleep deprived it seems. I've known something was wrong for, and never seemed to think it was sleep related. Finally I just realized I was always exhausted so on the internet I went.

Did my sleep studies, boy those are fun, and was told what I expected.

I wanted to start of (ok so I'm not starting off I guess but you know what I mean) by thanking the people here for giving so much information in such a kind way. I am very new to all of this and never seem to trust doctors and the new "friend" I have been assigned that takes care of my equipment. The opinions I have found on here are ones that I think I can trust when it comes to how people are doing with their sleep, and what type of equipment is working best for them. I was given the "preferred" mask which I haven't really grown to love like the DME providers said I would. I come on here to find the Comfort Gel is a pretty loathed mask by many.

Luckily there are so many people on here that have spoken their recommendations so I have some ideas on what to try next. I'M thinking the Aura looks like a nice offering.

Just a question, it seems like everyone on here has machines that track their progress. I have the Remstar Plus Cflex model, which does not track anything. Did you guys request ones or were they given to you from the start. I know nothing about insurance for the most part, except I am glad I have it now, so I don't know how to work that aspect. Any advice would be appreciated.

It sounds like I am a lucky one in that I am unique, I am only 22 and diagnosed with this. Sounds like it is not very common from what I am told. Either most don't find out about it until later or I just have it really early. Ill pretend I found out sooner than later and pretend I am a glass half full guy.


Anyways, just wanted to say hi and open to any spirts of wisdom anyone wants to offer

Wow, what a great positive attitude you've got!
That's half your battle won right there!

I can't answer your question about your machine, but there are plenty of knowlegeable people here to help you. I was just blown away by your positive attitude and wanted to say hello.

Many your age feel very upset by their diagnosis. But then there are the older ones who lament those lost years when they could have been feeling better and doing more in their life. It takes a smart person like yourself to recognize the better choice of finding out now or finding out later.

Great luck to you!


Linda

I am just happy to find out what was making me feel the way I was feeling and to find out that it was something I could do something about. The worst part was being diagnosed (which I knew I would be by the time I got in) and then having to wait 3 weeks to get some treatment.

I know I will not have to use a machine forever seeing how fast treatments progress. Hey, I may be silly in it, but its something new to research, how lame is that

Oh well anyways it gives me an excuse now when I mess up at work, I literally have a doctors note

Thanks for the welcome, now if only I can get out of this particular mask and into something more comfortable like the Aura which seems to be getting great comments, though my DME supplier hasn't seemed to have heard of it yet.

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CPAPopedia Keywords Contained In This Post (Click For Definition): DME, Aura

Apneaat22 wrote:I know I will not have to use a machine forever seeing how fast treatments progress. Hey, I may be silly in it, but its something new to research, how lame is that

Dear Apneaat22,

Hi! Welcome to our happy home away from home. You have already gotten two things right. One, as Linda said, the positive attitude. Makes the treatment much easier to handle. The second is that you've found this site, which is a literal God send for most people.

Here's the bad news, and I feel horrible breaking it to you as I have a son your age and I wouldn't want anyone having to tell him this, too, and shatter his hopes. Most people are in this for life. I was kind of hoping that what you wrote above was a typo, but I get the impression that it's not. I don't know what led you to believe you use the machine and you get off, but that's not usually the way it works. OSA is not something that usually goes away unless it is caused by some condition that surgery can and did correct or obesity and the person lost so much weight that they no longer have restricted airways. Perhaps I am leaving other causes for getting rid of OSA out, but they don't come to mind.

I really hope that doesn't take away your positive attitude. You are very, very fortunate to have been diagnosed so young because you won't spend decades wondering why you feel so depleted all the time, or why you are having certain illnesses or disorders appear for what would seem like no apparent reason. You will be energetic and healthy and able to be active in your life from here on in. Your thinking will clarify and there won't be any need to blame your mistakes at work on your OSA because you will probably make less of them if they came from the brain fog that can accompany it. Plus, who knows what the future will bring as far as a cure. This is becoming a very "hot" topic in the medical world, so maybe they will, God willing, come up with the answer in your lifetime and you will get off the machine.

Hang on because the beginning can be a bit rocky, but it gets better. And any time you need ANYTHING at all, whether it be a question answered, some help with something you don't understand, to vent your frustrations or just a shoulder to lean on, there are so many great people here that will never give up on you and be there to support you. I'm speaking from experience.

I personally wish you the best. Please keep us informed on how you're doing. And don't forget to ask questions. There is also a lot of information on the site already which the "Search" button comes in handy for, and the CPAP FAQ, too.

Best of luck!

Sleepless on LI wrote:Plus, who knows what the future will bring as far as a cure. This is becoming a very "hot" topic in the medical world, so maybe they will, God willing, come up with the answer in your lifetime and you will get off the machine.

Thats all I meant by my comments. I meant that since I have quite a while in my life, I expect something will come up at some point or another, whether it is just a much more comfortable sort of mask ( which, from what I can tell, some good ones have come out, like your experience with the aura) or some sort of other treatment. I didn't mean that I would use the machine and get better or anything. If I have learned anything from reading, its for the time being I am stuck to my machine where ever I go. But like I said, I am greatful it is something as "simple" as that which was wrong with me, and not something worse or harder to treat.

I have had little issue learning to breath on the CPAP, less getting my mask sitting properly so it doesn't prevent me from breathing smoothly. I am just hoping to get something that is more comfortable/easier to move around in bed with. I am hoping my DME supplier will track down an Aura for me based on your's and many others positive comments about it. I have not tried a nasal pillow systems yet and hope it will help with some of my mask issues. I was going to push for a Comfort curve mask until I starting reading through some of the people's posts on here and other sites that were less than positive. Saved me a bit of hassel so thanks.

Thanks for the kind words and offer of help. I'm sure I will take advantage of the offer in the future. For now its just nice to know there are people that are going through the same thing that can offer support.

Apneaat22 wrote: I know I will not have to use a machine forever seeing how fast treatments progress. Hey, I may be silly in it, but its something new to research, how lame is that

Ah, the incurable optimist.
Just kidding.
There's nothing wrong with optimism, so long as it doesn't stop you from getting the treatment you need.

I went to a lecture on all of this, and an expert in the field noted that in actuality, cpap and sleep apnea treatment is in its infancy. You are right to expect changes over time. Demand it, even. And you're just a young enough whippersnapper (?sp) to witness change. In the meantime, enjoy the newfound health you'll have with the treatment you get, and wish us all good health too when you get the chance.


Linda

Welcome & yes you have a damned good attitude & that is worth more than any other factor in getting xPAP therapy

As for self monitoring .. well ... Hmmm ...

I'll put it this way, there are some of us who are quite obsessive (am sure you will figure this out in time). And among us obsessives there are many ways we manifest it. One regular here loves pulling xPAP machines to bits - others here download every night's stats from their a) RemStar with card, ResMed with cable or card, PB420? with cable or card. Not even our doctors & helpers are that obsessive. What these downloades do with the stuff the good lord only knows (maybe ).

Another common obsession is visiting cpaptalk.com and devouring every post & yet another is flooding the place with your own posts.

Some of us cross boundaries & are obsessive in multiple areas at the same time.

But for us obsessionals xPAP is fun

Mike Moran has taught us how to turn our obsessions into hilarity with style.

Now to be serious, Don't worry too much about if your machine can or can't download data into a PC in a form that makes any sense, some of us feel that is important & to such folk it is. The main thing is to see the humorous side of this situation & to have people to laugh with at what happens & the ups & downs. The primary issue is how you feel & if it adds to feelings of goodness to obtain card readers & software & chart makers & pulse oximeters etc: etc: etc: go for it. Join the club you will be among friends.

Cpaptalk.com is a precious outlet for what might otherwise be a cause for serious depression. Our sometimes obsessive behaviour is actually a very effective survival mechanism.

Cheers

DSM

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed

I figure there are worse things to be obsessive about than something that is helping you be more healthy. The only reason I would want to monitor things, is on the days that I don't feel terribly better, I could check my stats and at it could confirm it was helping.

Im sure I will end up feeling better and better over time.

Thanks for all of the welcomes so fast.

Sweet Dreams

ApneaAt22

A@22,

You are fantastic. You are going to do so well with that positive attitude. I am so happy that you already knew that as of now, you're probably in this for a long haul. But with the way you think? You have half the battle won already. Good for you.

I wasn't able to obtain my Aura through my DME. I ordered it from this site directly. Most DME's, I don't know why, don't carry it, mine included. But it was worth the money for something that worked so well, at least to me.

And about the numbers confirming if you had a bad night? You won't really know what the cause of the bad night was even if your numbers drop off a bit. It could be outside circumstances causing you to have that bad night and nothing at all to do with the therapy. Better off, I have learned, to go by how you feel. The software, though, is good to see what patterns develop at certain settings, and especially how leaky your mask is.


DSM,

You couldn't have been talking about MOI, could you, regarding obsessive people who have to download their results every day? I haven't slept with my mask for three days. I should be going through withdrawals by now, don't you think (LOL)? Actually, I don't miss a thing about it .

Apneaat22 wrote:It sounds like I am a lucky one in that I am unique, I am only 22 and diagnosed with this. Sounds like it is not very common from what I am told. Either most don't find out about it until later or I just have it really early. Ill pretend I found out sooner than later and pretend I am a glass half full guy.

Finally, Swordz has someone younger than him on the forum!

Apneaat22, welcome. I can't add anything to all the good advice you've alrleady been given. Just know that some days will be better and some worse, and we'll be here to celebrate the good ones and help you throug the bad ones.

Sleepless on LI wrote:A@22,

DSM,

You couldn't have been talking about MOI, could you, regarding obsessive people who have to download their results every day? I haven't slept with my mask for three days. I should be going through withdrawals by now, don't you think (LOL)? Actually, I don't miss a thing about it .

Lori,

As obsessives go you are my favorite - we make quite a pair

DSM
(my latest obsession is monitoring pulse oximeters on the evil eBay )

dsm wrote:

Sleepless on LI wrote:A@22,

DSM,

You couldn't have been talking about MOI, could you, regarding obsessive people who have to download their results every day? I haven't slept with my mask for three days. I should be going through withdrawals by now, don't you think (LOL)? Actually, I don't miss a thing about it .

Lori,

As obsessives go you are my favorite - we make quite a pair

DSM
(my latest obsession is monitoring pulse oximeters on the evil eBay )

Oooh, that is one I can relate to. But don't you think I should have had to go to some form of rehab to "detox" since I quit monitoring my data cold turkey? I asked my husband to wear my machine/mask, but he refused! I have to find somebody to put it on...(guess I'm not as okay as I thought I was ).

"have to find someone to put it on"

LOL

DSM

Spoke to my DME and like suggested, they don't have any suppliers that carry the Aura. Was about what I expected, so they are going to send me a swift instead. I guess my insurance covers it so soon since its a totally different type of interface than my mask. From reading around, the swift fell in line with a few other models that were pretty well accepted so I went with that. I figure that will give me someplace to go with nasal pillows since I have never used one and if I like it, I will purchase an Aura eventually.

I'm sure as soon as I purchase it, the DMEs will start carrying it. From what I can tell, it just came out a few months ago so I would assume thats why it is not being supported. That and its a new company so I'm sure the kickbacks haven't been properly handed out to the DMEs to carry and push their products.

I am entertained by new things to research or try, whether good or bad, so this is all keeping me busy. I guess eventually it'll get old, but by then Ill be used to it all, so it won't be as miserable. I can see it now that I will be one of the "deconstructors" that seems to reside here, to keep things new and changing for myself.

BTW, is hosehead a term of endearment here? I've seen it used, but wasn't sure where it stood in terms of people being called it.

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CPAPopedia Keywords Contained In This Post (Click For Definition): swift, DME, Aura, Nasal Pillows

Apneaat22 wrote:BTW, is hosehead a term of endearment here? I've seen it used, but wasn't sure where it stood in terms of people being called it.

We carry the name proudly and use it as a term of affection and identification between each other. But heaven help the "normal breather" who calls us hosehead! .