How Important Has CpapTalk.Com Become In Your Life

[SaltLakeJan]

I had never heard of CpapTalk.Com until January 16th, 2009, when I "accidently" discovered it. Funny how an accident like that can change so many things in your life. I don't think I am the only person to turn the computer on to Cpaptalk just after I get up in the morning, or check on it, just before I go to bed. There is always something of interest in a post. During the day I want to know if anyone has responded to my post, or another of the ones I am following at the moment. This isn't idle curiosity, I think we are all seeking answers on improving our therapy, learning from the vets, cheering on our friends and the newcomers.

Cpaptalk has become an important cornerstone in my life. My life changed dramatically when I rediscovered I had sleep apnea, began cpap therapy, and it wasn't working. In desperation, I turned on my computer, and typed in the words sleep apnea, thinking I would get something scientific, where I might understand a few of the words. Among the sites that came up, one caught my eye, maybe it caught my heart. The site I "accidently" choose was cpaptalk.com. I don't know how others reacted to shock of starting cpap, but it put me in a near panic situation. I remember the feeling of relief when I found positive posts; cpap was actually working well for many people.

I became a member of this Royal Society the day after I discovered it. I call it a Royal Society because of the royal welcome I received from the major players on this forum. They are the framework, the backbone or what ever you want to call it, that keeps this forum going. No one here cares about your race, your religion, they have a sincere desire to encourage you, to help solve the many problems that have a nasty little habit of appearing in your therapy.

The choice I made the day I hit the CpapTalk.Com site, changed the way I run my life. It is a positive in a world that currently has so many negatives. Now, I willingly give a portion of my daily 24 hours to a forum that has helped me solve problems, brought reason to my troubled mind. I want to add, the entertainment value, & the laughter I've got from the funny posts is worth every moment I have spent here. THIS IS A PLACE WHERE THERE IS ALWAYS SOMETHING GOIN' ON.
Jan

[Goofproof]

In the beginning over two years ago, when I stumbled upon this site, I knew very little about CPAP. The main thing I've gotten from here is the importance of knowing how your treatment is going. I found out about the data collected by the the better machines. I was lucky my DME had sold me a PRO 2, but didn't inform me about the data. They said no need to put the card in, it will work fine without it.

Due to http://www.cpaptalk.com/, I found out about the Encore Pro program for my machine, and how to set it up. After that I learned how to make my treatment more effective, by stopping leaks and adjusting my pressure to what's best for me, not by the guess of the sleep lab, based on a number out of the hat, and three hours of bad sleep.

Later, I learned about the other brands of XPAPS, and what they bring to the table, in software and treatment. That way I could better make informed judgements about my treatment. I try to help others with what I have learned where I can. A forum is like a meeting place where you run into many types of people, some you take to, some you don't. I tend to come across a little gruff at times, I get frustrated by the way some people treat their treatment, I think as long as we have to go through this every night we need to get the most out of it we can.

I probably check out this site off and on ten times daily, reading post I think may be interesting, not posting as often as we used to, because if the forum is just read, most of the useful info is here in easy reach. It's easy to tire, trying to drive the same nail in the same hole, over and over. I, as most of us, hang here looking for a better answer and to pay forward the help we have gotten, also there's a lot of good people here that want to help.

Thanks Johnny, for providing this service, and for conducting your business in the manor you do. Fair and above board! Jim

[MaryC]

I like it here, just found this forum a day ago. Glad it is "busy" here most times, so I hope to learn a lot more and get better as time permits. I was only diagnosed 2 months ago, and I have had my CPAP for just a few weeks now, still adjusting.

Thanks for helping us, newbies.

[Kiralynx]

I learned of CPAPTalk.com when Hurricane Ike (or the remnants thereof) waltzed through Ohio and killed the power at my sister's house. She was as she said, sitting there listening to her freezer defrost.

I had, at that point, not received my diagnosis, though I'd had the sleep test.

I asked her how her husband, a CPAPer, was faring, and she said, "Terrible." So I started looking for people who might know of emergency power supplies. A friend in a diabetes Forum pointed me here. I found several useful references, but then had a problem: how to send them to my sister if she had no power! By the time I printed it and snail-mailed it, their power would hopefully be back on. So I e-mailed it, and said, "In preparation for the next time..." Luckily, my sister's power came back on after only two nights.

Having noted an awful lot of commentary which looked very interesting, I settled in to read, and study, finally posting my first message in early October. I learned enough that my titration went far better than my initial study, AND I was able to discuss things with the RT who recommended (luckily for me!) the right machine for my situation the first time.

Now I check in here first thing in the morning, and last thing at night, and sometimes a couple times in between. I sure wasn't expecting to start one of the silliest threads in my experience!

I enjoy learning, and I enjoy helping others to learn. I can do both, here. What more could I ask? (Pass the ripe bananas, please....)

[Trinity101]

I found this wonderful place after my first sleep test, while awaiting my titration study. I learned a lot,which helped me to talk to my doctor. I am still learning each and every time I check in- and have even ventured a tad of humor once or twice- I feel a few people "know"me enough by now to understand when I am kidding. I always check in when I have to get up at night due to my joints aching for position change, even if just for a few minutes- but I can now have a place to go where I feel like I can really settle right in and feel "cozy", accepted, and maybe even find an answer to a problem that has been nagging at me; or maybe some much-needed humor on a day I have been tired out from my still-present sleep debt and 2 very active grandchildren. Kudos and many thanks for everyone who has helped me out! You are very much responsible for helping me to make a success of this therapy. I will stick around and offer help as I am able, and always be happy to keep learning.
~joan

"Ever have that feeling when you don't know if you're awake or still dreaming?"

[robertmarilyn]

Not long after I had my first sleep test (well first one in 15 years), I was speaking with my dad on the phone and told him I was studying up for my next sleep doctor's appointment...he thought I said I was studying for my doctorate.

I thought that was funny but close to the mark in that I immersed myself in this forum and followed links throughout the forum and to other sites because I wanted to understand XPAP machines and equipment and treatments and everything else I could learn about sleep apnea before my next doctor's appointment. I know that what I have learned in a short time shocked the three doctors I discussed sleep apnea with...one of them keeps asking me how I learned so much...not sarcastically either...my husband can verify that the doctor seems pretty stunned that a patient understands this stuff...esp when he encounters so many referral doctors who don't want anymore than a 1 page summary about it on their patients...but the thing is, most of us here want to know what is going on...I guess doctors aren't used to us nosy "wantin' to be educated" types.

This forum has make it much easier to have the confidence to not allow my treatment to not work for me...I'm not sure what exactly will work but I want to find what will work best eventually.
mar

[SaltLakeJan]

Hi Goofproof
You wrote that after a while "it is easy to tire, trying to drive the same nail in the same hole, over and over, But you hang around to pay forward the help we have gotten."

I probably check out this site off and on ten times daily, reading post I think may be interesting, not posting as often as we used to, because if the forum is just read, most of the useful info is here in easy reach. It's easy to tire, trying to drive the same nail in the same hole, over and over. I, as most of us, hang here looking for a better answer and to pay forward the help we have gotten, also there's a lot of good people here that want to help.

Where would we beginners be without the "Pros" helping us over the rough spots? Thanks to you and the other veterans. Besides Jim, you give darn good computer advice.
Jan

[SaltLakeJan]

Hi Mary C.

Congratulations on joining the forum. It will be one of the best decisions you could make if you are inexperienced about apnea. If you go to the top of the screen, you will find User Control Panel. You can enter that site, and officially join cpaptalk. When you list your equipment, it is helpful to list it by text rather than pictorial. It isn't always possible to know what a person's equipment is by the pictures. And if you have a question about masks, or other equipment, the members can evaluate what you have and give their answers to your question.

You can tell by the posts that this is an awesome site. I joined in January, and I am not an "Old Hand", but I am glad to be among the first to welcome you. Best of everything to you.
Jan

[kteague]

When I found my way here I had given up on cpap, as I was sure it would be the death of me. Some on here convinced me that not using it could be the death of me too. I accepted that it was not the cpap causing the problem, but more likely my settings on it. I bought an auto titrating machine from a member (RIP Snoredog) and followed suggestions for making sure my treatment was working for me. My (mis)use of ramp had been my main downfall, along with an inadequate pressure. Haven't had a dream of dying or what seemed like OBE's since I resumed using cpap about 3 years ago.

Sometimes I wonder if my health was good and my life busy how much time I'd spend here. Probably a lot less. But I can't imagine cutting the strings altogether. As odd as it would have sounded to me 3 years ago on my first foray into forumland, I've made friends here. I've got so much yet to learn, as I've absorbed info more on an as needed basis. If I ever need a bipap or a full face mask, I'll be a newbie again. If it's in the medical (or other) news, I'll hear about it here. Can also get a regular dose of humor. And even something to get riled up about now and then.

But more than all that, when someone is struggling, I want to be part of the team that holds them up. I feel like I owe it to those who have and continue to support me to not leave it all on them. I know it does my heart good to see others joining the ranks of the support network. There is a Bible statement that holds a principle that I think of in broad context (no offense intended). "To whom much is given much is required." Still haven't given nearly as much as I've received here. Since I'm ever learning, looks like I may never get away from here. Not that I want to.

[Bearcat42]

I too am glad that I stumbled upon this forum one day, just as Jan did, by typimg in Sleep Apnea. Fortunately I found it before I went on cpap and was able to do ALOT of reading to educate myself on a subject that I apparently knew very little about. By doing that I believe that my therapy was an easier transition than maybe someone who found the forum after starting cpap therapy.
There is so much useful information here and so many people willing to just jump in and help with any problem that a person might have. Making this forum a part of my support structure has been vital in starting cpap therapy and seeing good results after 1 month.
And as Goofproof said, staying here to pay it forward is just one good reason to hang around. Maybe one day I will get the oppurtunity to do the same for someone else.

[capers]

I've now been a CPAPer for three months (the first two on rental) and I think I've been watching this forum for almost the whole period. I learned an enormous amount from it in the first month or so.

I can't say that I get a great deal from it now although I do tune in every day in the hope of either picking up a tip (I still don't know everything but then I'm not a teenager) or of contributing something out of my limited knowledge.

[SaltLakeJan]

Hi Kira,
Well depend on you to have found CPAP in a dramatic way.

Kiralynx on Yesterday, 4:46 pm
I learned of CPAPTalk.com when Hurricane Ike (or the remnants thereof) waltzed through Ohio and killed the power at my sister's house. She was as she said, sitting there listening to her freezer defrost.

I personally am very glad you found the forum before I did. Some of your posts, were among the first I read. The Monkey is the last. I am so occupied with my pending doctor appointment, I have only scanned it - I laughed and laughed, but had to get back to my prepatation. You have given me great advise, and I feel I know you personally.

Jan

[Kiralynx]

Hi Kira,
Well depend on you to have found CPAP in a dramatic way.

I didn't mean it!

I personally am very glad you found the forum before I did. Some of your posts, were among the first I read. The Monkey is the last. I am so occupied with my pending doctor appointment, I have only scanned it - I laughed and laughed, but had to get back to my preparation. You have given me great advise, and I feel I know you personally.

Luck of the draw -- I was fortunate enough to be here before my titration so I could implement some really useful information, like calling the sleep center and trying on masks BEFORE I arrived for the testing. I have dreadful claustrophobia, and if they'd handed me some whiz-bang with straps all over my face, or a full-face mask, I'd've gone through the ceiling in panic. (Hard to get a valid titration if the patient is on the roof, screaming! Besides, I don't think the wiring harness cable stretches that far...)

I confess, I didn't expect the "Monkeying Around" thread to take off the way it did, but it gave ME a much needed laugh with everything that has been going on around here!

[raylo]

This has been incredibly valuable to me. A big thank you to everyone who has ever posted here or PM-ed me (wulfman).

Joining and reading this cpaptalk should be part of the presecription for cpap. It should also be required of Docs and staff.

I don't know how people get by without the info you can find here re:

-masks
-machines
-dealing with DMEs
-dealing with doctors and staff
-tips and hints
-shared experience
-getting and using numbers
-etc.

[SaltLakeJan]

trinity101
Hi Joan, so you are another one who can't always sleep throught the night. And you are another, who thinks while I'm up, I think I'll see what is happenin' on cpaptalk. You may have just joined, but your story sounds like my story and many others here.

This is a great site - I don't know what I would have done without it. I had a hard time getting started, and by good fortune I found this place immediately.

Glad to hear from you, and we'll "see" each other on the forum.

Jan