The Dangers Are REAL - Is It Too Late For Me?

[brazospearl]

James, welcome to the forum, and congratulations on deciding to figure out how to manage your apnea. As M.D.Hosehead said, you aren't the first to travel this road on your own, and I second his suggestion to pay special attention to RestedGal's posts. You can do this, without insurance and with only the most minimal interaction with doctors, but you have to be well educated. The good news is that you can learn a LOT on this forum.

As others have mentioned, your minimum requirements for a machine are that it is fully data capable, autotitrating, and has a humidifier. The Intellipap you mentioned fits that bill nicely, and has a loyal following. The S9 is the current favorite for many forum members, but the Intellipap is less expensive to purchase. Mask selection is key to successful therapy. Some lucky people find the right mask on the first try, others have to try a couple of dozen to find the best fit. While the cost of buying any one mask is pretty reasonable, the cost of buying several adds up to a lot of money real quick. Fortunately, there are a couple of ways to manage this. Our host website (cpap.com) offers mask return insurance for a reasonable fee, and if you deal with a reputable DME they should offer a 30-day return on masks. Also, Dane from sleepnationtv, a forum member, has a mask trial program that could be helpful for you as well.

Good luck, keep reading, and ask us anything. We're here to help!

[desforsleep]

James,

Welcome to the forum. I have found a lot of support here. I too have gone undiagnosed for most likely most of my life. I am 48 now. I began to have the joint and muscle pain, chest pain, shortness of breath, headache, night terrors, waking chocked gasping for air and heart pounding in my ears. I kept telling one doc after the other. I finally got referred to a cardiologist who diagnosied me as soon as all this came out my mouth!!.. Saying that to say this. The cardiologist has informed me that my heart has been compromised and I have some minor right sided heart failure... HOWEVER he also said that my body will repair itself with proper treatment and compliance to therapy. our bodies may never be perfect , I am sure there will be some lasting effect, but there is hope. I have only began thereapy. I am in about a month and have my ups and downs.. victories and setbacks.. But I am determined for no more damage to be done to my body by osa. I also have a little more energy than before.. not everyday.. but a lot of days.

Hang in there!! It is never to late!

[Starlette]

Hey there James.

Welcome aboard! Yes, you will learn gobs and some from lots of folks. One of the best things I did for my life was join this forum.
It's empowered me to take charge of my own therapy. In the past two years, I gone from a fuzzy headed, ready to nap at the drop of a hat to a clear headed, alert gal. I have this forum to thank!!!

James, if there is just one piece of advice I can give you it's this: Don't give up! I'll NEVER forget the words of the person preparing me for my sleep study, "CPAP works for those who make it work." I have been using my CPAP for almost two years. First year rarely used it (one hour a night, I kid you not) and ready to give up. Then my husband's friend on 2/25/09 (which i really consider my anniversary date) told me, "Starlette, get ahold of your face!" and counseled me that evening. For me it was the turning point to make it work and has.

Huggs to ya James.

Starlette

[jameslv-nv]

Thought I'd drop back in to give ya all a quick shout of thanks.

I've NOT actually ordered a machine nor moved forward just yet as I've had many personal things to deal with.

What I have done is visit the doctor for some basic blood test and other test to check on possible problems.

I really like the doctor as he treated my father before he passed BUT... considering his experience and age he really did seem somewhat clueless about apnea. When I told him about some of the folks here who shared how their life had changed he basically said "oh yea.. losing weight will change your life"

I about feel over laughing..i said nothing about anyone losing weight but like so many have posted or I read.. even doctors think apnea is caused by weight. I can tell you this.. even when I was in my best weight I've NEVER felt energetic or rested. anyway.. I was a bit amazed.

Ok..guys..need some advice. I told him I KNOW I have apnea and I don't need the sleep study again. he did mention maybe doing just the titration part only. So I'm waiting to hear back from the sleep clinic they referred me and see if they can do just that part.

Here's where I'm at and my personality. I know patience and persistence is very important however I feel if I have to myself learn all this stuff without some assistance I'll not follow through and it'll cost me more in health issues.

Basically I feel SOME assistance in getting things dialed in for me ASAP or some pro help locally will keep me motivated. I realize I may need to adjust and get info here but I think if I have to really on the RIGHT machine, Reading lots of scattered post on the forum, then all the trials and errors I may not follow through. I'm just being honest as follow through has always been very difficult for me.

Please post your honest thoughts and ideas. Basically I think getting some local help would help. I'm a bit tired now..so rambling in text. I really appreciate all your post and comments. I've read them all and will re-read again tomorrow as I need to get things moving ASAP.

Thank you!

[Pugsy]

Are you saying that you might wimp out when faced with some of the things we sometimes struggle with?
That you need someone to really be right there to give hands on training and keep you focused?

Is it possible that there is an AWAKE support group in Las Vegas? Don't know how much support those offer but it might be an option.

It is good that you know you own limitations and understand them. You know, it might not be nearly as difficult for you that it has been for some others. We just don't know how you will take to it. Did you happen to read Alex's thread? He was doing awful and no help at all where he lived from his DME or physician. A couple minor tweaks and he is a new man.

This is his thread if you haven't read it already. If nothing else it should give you some hope because good things do happen.

viewtopic/t60761/Someone-please-help-this-Newbie.html

[Muse-Inc]

James, my recommendations: APAP, software & learn to understand the reports, get a recording oximeter (sometimes called a pulse ox) and use it while learning what your ideal pressure range should be (you can set it to alarm so it'll wake up if your O2 levels drop too much, we breathe deeper when awake), check out the free mask loaner program at sleep nation. Many of us here wear the RespCare Hybrid Universal...comes with 3 sizes of oral cushion (ensures you don't lose therapy air via your mouth and lets you breathe thru your mouth when congested) and 3 sizes of pillows (weird name, they sit at the end of your nostrils with just the tip inside) and a comfy headgear -- with all the sizes most people will find a combination that works well. Comes with a fitting CD to watch. This mask does not cover your nose or touch your forehead so two of the bigger challenges to finding a good mask are gone right there. Our host sells it for $119 the last one I bought one and you can buy return insurance if you're not sure (or try a loaner to see if it'll fit). This is what it looks like: http://www.mergenet.co/hybrid/photogallery.htm
Welcome to the world of happy hoseheads here, we aim to help others make this CPAP therapy thing work well!

[BlackSpinner]

Find a good therapist to help you with the changes happening in your life. Just reporting back can help strengthen ones resolve, I mean what responsible adult wants to report a failure of will? All you may really need is a coach type to cheer you on. All good athletes have coaches so why not you?

[LillieKaltenhauseru]

Interesting topic. Want to see more on what you guys think about this.

[JohnBFisher]

... I about feel over laughing..i said nothing about anyone losing weight but like so many have posted or I read.. even doctors think apnea is caused by weight. I can tell you this.. even when I was in my best weight I've NEVER felt energetic or rested. anyway.. I was a bit amazed. ...

I can assure you that apnea leads to weight gain, which helps trigger diabetes and high blood pressure and increased risk of heart problems, strokes and kidney disease. When I hit about 13 or 14 my sister used to complain that I sounded just like our grandfather, who I am certain died from heart problems that arose from untreated sleep apnea (who knew about that in the late 60s, early 70s?). I lived with untreated sleep apnea until I was about 32. When I've gained weight it has been due to poor sleep and stress at work. A bad combination. So, yes. I can affirm that sleep apnea helps lead to weight gain.

... Ok..guys..need some advice. I told him I KNOW I have apnea and I don't need the sleep study again. he did mention maybe doing just the titration part only. So I'm waiting to hear back from the sleep clinic they referred me and see if they can do just that part. ...

You can definitely do just the titration part of the sleep study. They already know you qualify for CPAP therapy. There is no need to repeat that part of the sleep test.

As others have mentioned an Auto CPAP (APAP) is another option.

Here's hoping you attain restful sleep soon.

[DreamDiver]

You've already gotten lots of good advice. I'll just say, 'Welcome'.

[Big S]

Welcome James. I feel an exorcism (of sorts) occuring. I can hear the wagons circling and the wing flapping from the gathering hens. In fact, the breeze is so strong, it feels like my FFM in the middle of the night. You have found a spot where the angels will guide you to the success you are willing to achieve!

[jameslv-nv]

Just in the past 4 days the aches and pains that were once in only my left leg I'm now experiencing in the right although not as severe.

I've read every post here most at least twice as well as followed Alex thread as much as I could last night. My energy level is soo low. Also we got back from a trip that completely wiped me out.

I know what I need and ready to order but find I need a script for machines. Arghh..anyway..guess I missed that in my reading and research although it's understandable.

I have doctors appointment this coming Monday so I'll see if I can get him to write it or sign it. Hope he does..things are getting worse.
s
SO MUCH HELP here I can't thank you all enough. I know I have THE SUPPORT I need to see this through RIGHT HERE!! I can do this without wimping out and personal hand holding. My health depends on it.

Also I'm going to scrap the titration appointment/referral from my doc to a sleep clinic. I'm now getting the run around..they did not get the referral..and my docs referral office is not calling me back. By the time it's finally done I can have a machine once I get a script of course.

I figure what I'll save on the titration study or whatever it's called I can put towards the cost of a machine.

Will keep you all posted once I have the gear and I'm rolling. I've never been so anxious to start..wish I'd not waited this long but can't turn back time.

[Otter]

If your doctor won't prescribe without the sleep study, at least one online DME (I forget which) has a doctor that will prescribe long distance. Sounds like he might be a rubber stamp for their business, but I wonder why a prescription is even required, especially for something like a mask. What exactly does the FDA think we're going to do with it?

I've been doing almost the exact same research James is doing, and would like to share what I've learned and the conclusions I've come to. But please, for both our foggy sakes, speak up if I'm wrong about anything. I'm sorry about the length of the post, but the road to this point hasn't been overly short.

James, I'm also in a similar situation to yours: 47, no insurance, probably had OSA since i was a teenager, always been tired, and things are getting critical. My heart isn't complaining yet, but my adrenal glands became seriously freaked out when I had the flu a few weeks ago and haven't returned to normal -- well what was normal for me. Excess adrenalin and sleep deprivation are not a happy combination, but they can produce a feedback loop. Hence, like you, I'm eager (desperate) to move forward. And like you, I figure it makes sense to treat the obvious problem first rather than pay three times the cost of the equipment for a sleep study. I can always do that later if it proves necessary.

My doctor was willing to prescribe APAP therapy for me, so I haven't had to explore the workarounds. She knew only about going to a neurologist to get a sleep study and hadn't heard of APAP machines, but she was happy to help once I connected her with a respiratory therapist who could give her an authoritative explanation. That was Mark, who owns secondwindcpap.com. He's a really nice guy and seemed happy to help, even though as you may gather from the length of this post, I ask a LOT of questions.

I was seriously looking at the Intellipap AutoAdjust, but I've decided to get the Philips Respironics Syetem One instead. It's only slightly more expensive if you go to cpap.com and use the discount code, low, to get around the manufacturer's minimum advertised price. The Encore Pro 2 software you'll need to see your data would add another $200, but argh, there must be a better way. The Resmed S9 Autoset is superior in at least some ways, but not to the point that I'm willing to pay another $400 or so for it.

The reason for going with the PR1 instead of the IP is the data. With the PR1 (or the more expensive S9, I believe), you can actually look at a graph of your flow and pressure data. As I understand it, with the Intellipap, you have only the machine's interpretation of that data, and while that's good enough for fine tuning your settings after you've had a sleep study and a proper diagnosis, it's a bit skimpy for DIYers like us. No one has told me this directly, but it seems to me that someone should look at the raw squiggles, and without a sleep study, that's going to have to be me. So though the Intellipap is a little cheaper, made by a company with a much better attitude toward end-users, more convenient, somewhat more tweakable, and by all accounts a very good machine, it doesn't quite meet my needs. It's too bad, the ability to adjust the machine's definition of events, and hence it's response, would go very well with the ability to display low-level data.

One thing that might make your choice different than mine is the data displayed on the LCD screen. As near as I can tell, you can only see 7 or 30 day averages on the PR1. Hence, if you change your therapy settings, and the next morning you want to get a general idea of whether the change was an improvement, you have to pull the SD card and look at the data on your computer. The onscreen display is where the S9 excels, and if I were a rich man... I'm not sure about the IP's onscreen data; I quit researching that machine once I realized I really needed a look at my low-level data if I'm going to do this even halfway right. I'll probably also get a cheap logging pulse oximeter unless my results with the PR1 indicate that I'm wrong about having OSA (this would be extremely surprising).

You can get a used PR1 even cheaper from SecondWind, but Philips has lumped two different versions of the machine under the exact same model number , and unfortuantely the newer version hasn't been out long enough to hit the used market. People say the second version is very quiet, and the first version sounds like the old M series.

My mother has an M series, and it's so loud that if I go over to her house when she's sleeping, I can hear the CPAP machine down the hall and around the corner, even if she's got her bedroom door closed. The first time I heard that it freaked me out. I thought, "that can't be right!" After a while I woke her up to make sure she was okay. I guess there is some sort of silencer cap for the M series and I'm not sure if she has that, but it's a moot point because there is no silencer for the PR1.

I'm single now and figure I could adapt to the noise, but I hope to have a social life again once the therapy does its magic. And I'm not sure at what point in a romantic relationship I should say, "By the way, spending the night with me is a bit like trying to sleep through an argument between Darth Vader and a drunken shop vac." So I'll pay up for the second version. If you need to tell the two apart, read this thread.
viewtopic.php?f=1&t=61099&st=0&sk=t&sd=a
Basically, the new version has all the branding on the lighter area around the LCD, and the old version has "Philips Respironics" in white on the dark body of the machine.

I can't help you with the mask much. Even if you're a bearded mouthbreather with a big head, what works for me might not work for you, and I don't even know what works for me yet. As everyone keeps saying, the right mask is very important. Until you get your mask to fit, you can't really do a good job of titration. Also, it's got to be very hard to sleep wearing a farting mask that blows air in your eyes.

Your best bet is to first read reviews of masks and then go to a local DME and try them on. Several people have told me to do that, and it makes sense. Nothing can beat holding the mask in your your hands and putting it on. I'm probably not going to follow that advice, good as it is, because I'm so damned tired and don't want to wait the weeks it would take me to drag myself to the (obnoxious and incompetent) DME here or find their competitors. But if you can manage it, do as they said not as I do.

If you need links for anything above, I'll be glad to share what I've collected. Bear with me, though, I'm only good for a few hours a day, if that, and even then I'm very slow.

[LinkC]

If you plan to got it alone (without a sleep doc), you will definitely need an "auto" machine, so you can self-titrate. A 'script for "CPAP" is valid for an Auto machine, but sometimes they hassle you over it. If you can get a 'script stating "Auto" it's clear sailing. Keep us posted!

[Pugsy]

he Encore Pro 2 software you'll need to see your data would add another $200, but argh, there must be a better way.

Encore Pro 2.4xx is not $200. PM me if you wish a MUCH better deal on the software.