PLEASE STOP THE MADNESS CPAP USERS!

[Poysomno-man]

Hi, this is my first day on here, and I have to tell you, what you people are doing to yourselves is crazy.
Here are some things that every CPAP user should know.

1. Do not tape your mouth shut. If you are waking up with a dry mouth or throat, please, please do not tape your mouth. There are two things you can do. One, make sure your heated humidifier is on and turned up properly. The other is switch to a full face mask or try using a chinstrap. If your machine shuts off on its own, which they have a tendency to do, you are stuck rebreathing your own air until you wake up, if you do wake up. Someone has died from trying this tactic before.

2. Do not adjust your pressure. DUH! Would you double your blood pressure medication for the hell of it? Stop trying to self diagnose your apnea. If you are 90% of the CPAP users out there, you probably weren't aware you even had OSA, you probably were told by your doctor, or your spouse was getting mad at you.

3. Do not take Ambien or any other sleep meds more than once a night. This garbage of people waking up after sleeping 3 hours to take another pill is nuts. These pills last up to 10.5 hours in your system, so taking a pill 3-4 hours before waking up is foolish. You aren't going to be at your best until LUNCH!

4. Stop jerry rigging your masks! If your mask isn't working, and its less than 30 days old, bring it back to your DME and tell them you want a different mask. The majority of mask companies, such as ResMed or Respironics gives you a 30 guaruntee.

5. Don't put foreign objects in your humidifier or masks. Do I really need to explain why?

6. Don't over think your treatment. The majority of people who have problems with CPAP are normally people who are very analytical. This means you- you engineers, mechanics etc. PUT ON YOU DAMN MASK AND GO TO BED! Stop over thinking the process. The machine will do its job if you will just let it. Yes, this treatment can be a bitch to get used to. Yes you can wake up with a dry mouth, or sore nose. These are small side effects when you compare them to heart attacks, strokes, asthma, hypertension and diabetes. (Which you will get if you don't already have them by not wearing your CPAP.) I love you all! I just never had the opportunity to practice tough love with my peeps, so you guys got the brunt of it. Anyone ever have any Q's, I am always willing to help. I am a sleep lifer. I have done over 3,500 studies, and still going. Sleep well my pets...........

[Slinky]

Welcome to the forum, polysomo-man. Your input is welcome - but - some of it "ain't a gonna fly" here. You see, YOU have the experience of testing patients and recording and recognizing all the various sleep disorders - but - you haven't had to sleep w/an xPAP and mask and you haven't put up w/the lack of information, support and advice from the sleep doctors and local DME supplier RTs nor w/the deliberate untruths and ignorance of the equipment they supply, etc., etc.

No one's mouth is taped so tight they can't easily open it if needed. Most DME suppliers won't keep providing new masks ad infinitim until we find one that works for us. Most sleep doctors and local DME suppliers do NOT provide the information and education xPAP patients need as they acclimate to xPAP therapy and THAT IS THE MAIN REASON FOR THE LACK OF CPAP THERAPY COMPLIANCE AND SUCCESS.

WE are the ones w/the experience of acclimating to xPAP therapy and dealing w/the sleep doctors (IF we ever even see them) and the local DME suppliers. UNTIL you have had to deal w/a local DME supplier (who doesn't know you are "in the sleep profession") for your own xPAP equipment WE have the advantage over you. WE are more in touch w/the reality of sleep apnea therapy in the real world.

By the way: regarding Ambien. There is Ambien and there is Ambien CR. My family doctor scripted Ambien as I was having a problem w/a 2 hour sleep/wake cycle. And trouble getting to sleep. When I finally had my sleep evaluation and titration (only slept 42 minutes first titration so had to go thru a second wherein I only slept 98 minutes, out of 6 hours bedtime both studies) and was scripted w/a CPAP even my sleep pulmo suggested Ambien until I could get "over the hump". Ambien was good for 4 hours of sleep, maybe 5 hours. Both doctors, family and sleep pulmo, said I could take a second Ambien to get back to sleep 4 hours after the first. If that helped when I ran out of the first script they would write the next one for Ambien CR. As I was 6-7 nights of one Ambien a night, CPAP and mask, and I was pretty much able to continue w/o the Ambien except on rare occasions. I still haven't used the first 30 Ambien I was scripted altho I only have 2 left but then they were scripted in 2006.

[Polysomno-man]

Actually, I can understand what you guys are going through. I have used every mask on the market at home. Although I don't have apnea, I have used every mask that has been put out in the last 8 years. I have also used CPAP, BiPAP, VPAP, APAP, CFLEX and Auto SV BiPAP. I am on board with you guys. DME companies are a pain, and doctors mostly are worried about their reading fees, and not so much on patient education or compliance.

This is why I wear everything that comes out. As far as the tape is concerned, it doesn't matter how tight you put it on. You can glue it on if you want, if you wake up, you can get it off. If you don't wake up, it doesn't matter if its barely on, or if its on tight.

I have talked to DME's that have no idea that I am a tech. This is how I weed through the companies that I would send my patient to. If they BS me on the phone, I don't reccomend them to my patients. I have a list of DME companies, and websites my patients can visit. My father and brother are both on CPAP. I understand your real world you are referring to. I am just saying that there as some dangers involving with people deciding what works best for them.

As far as Ambien is concerned, I don't advise my patients taking any sleep aid unless they really really need it, and then only for 7-14 days. If you need to take another pill half way through the study, then you should be on Ambien CR. But that doesn't change the fact that you shouldn't take another dose half way through the night. I just would like to advise people who aren't doctors to watch what they tell others to do without knowing the true consequences of their actions. Are you familiar with what can happen to someone who drives within 4 hours of taking an Ambien? You minus well be driving around drunk. There are many serious side effects to Ambien and other sleep aids.

As far as your test is concerned, the doctor should of aloud you to go home with a loaner from a DME, (APAP) and allowed you to get used to treatment before having you come in for another shot. Its clear that you were having problems from the start, and usually people who come in 2 studies in a row and don't do well, ("like yourself) never make it home with a machine, because they have already given up. I commend you on your patience and determination. Like I said, I am here to help. I understand that this profession has a long way to go, and AASM is making some steps to ensure that all labs start to get on the same page.

[Polysomno-man]

by the way, if anyone is getting the run around with their DME company, let me know what state you are in, and I will find a company that will work with you on the masks. That is a load of crap if they won't let you switch out within 30 days. Its from the manufacture, not the DME. If they tell you no, then they aren't doing their job. I have some companies that work well with me, and can pass on their information if needed. I work at a lab that has their own DME, and I know the girl well there, and I am positive that I can help anyone who needs help.

DON"T GIVE UP THE FIGHT!

[Slinky]

Hey, polysomo-man, why not register and allow PMs?

Frankly, I've got some Resmed VPAP Auto questions I wouldn't mind throwing out at you.

[Polysomno-man]

I will do that!

[greenvelvetdragon]

I mirror slinky's responce---most of this ain't gonna fly. While I am sure you are trying to help in your own way, a word of advice: bring it down a few notches and don't insult the intelligence that countless members of this fabulous site have and share.

I WILL adjust my own pressure as I am "in the business" in a manner of speaking and many of us have enough experience and we are the ones who know our own bodies better than anyone else. I don't believe your analogy with BP meds, albeit sound logic with BP meds, quite hits the mark in this arena.

FYI I live so remote I have to get my equipment via the post, so dropping in to my local DME for a quick exchange isnt an option......

The balance of your remarks I don't believe I will comment on as people make choices, need to make choices and are allowed to do so, I believe its called free will, for better or for worse.

As a believer in free will, I welcome you to this forum, but unless you check the overbearing and aggressive attitude at the door, I don't believe that you will be winning friends and influencing people to any high degree. There are many of us who welcome healthy debate and look at all sides of the box, as well as outside the square but condesending rudeness is just bad form.

PS thanking you for toning down your last post but I still stand by mine

[dsm]

Welcome to the forum, polysomo-man. Your input is welcome - but - some of it "ain't a gonna fly" here. You see, YOU have the experience of testing patients and recording and recognizing all the various sleep disorders - but - you haven't had to sleep w/an xPAP and mask and you haven't put up w/the lack of information, support and advice from the sleep doctors and local DME supplier RTs nor w/the deliberate untruths and ignorance of the equipment they supply, etc., etc.

No one's mouth is taped so tight they can't easily open it if needed. Most DME suppliers won't keep providing new masks ad infinitim until we find one that works for us. Most sleep doctors and local DME suppliers do NOT provide the information and education xPAP patients need as they acclimate to xPAP therapy and THAT IS THE MAIN REASON FOR THE LACK OF CPAP THERAPY COMPLIANCE AND SUCCESS.

WE are the ones w/the experience of acclimating to xPAP therapy and dealing w/the sleep doctors (IF we ever even see them) and the local DME suppliers. UNTIL you have had to deal w/a local DME supplier (who doesn't know you are "in the sleep profession") for your own xPAP equipment WE have the advantage over you. WE are more in touch w/the reality of sleep apnea therapy in the real world.

By the way: regarding Ambien. There is Ambien and there is Ambien CR. My family doctor scripted Ambien as I was having a problem w/a 2 hour sleep/wake cycle. And trouble getting to sleep. When I finally had my sleep evaluation and titration (only slept 42 minutes first titration so had to go thru a second wherein I only slept 98 minutes, out of 6 hours bedtime both studies) and was scripted w/a CPAP even my sleep pulmo suggested Ambien until I could get "over the hump". Ambien was good for 4 hours of sleep, maybe 5 hours. Both doctors, family and sleep pulmo, said I could take a second Ambien to get back to sleep 4 hours after the first. If that helped when I ran out of the first script they would write the next one for Ambien CR. As I was 6-7 nights of one Ambien a night, CPAP and mask, and I was pretty much able to continue w/o the Ambien except on rare occasions. I still haven't used the first 30 Ambien I was scripted altho I only have 2 left but then they were scripted in 2006.

Slinky,

are you being mischievous You must have seen pretty quickly this is someone's rambling (possibly bored silly & out to have some fun)

Cheers D

[polysomno-man]

Like I said, I was giving tough love. From now on, being a member, I will talk to you all as my patients. No matter how I feel about what you are doing, I will find away to be sensitive, just like I am in real life. That doesn't change the fact that home remedies can be dangerous.

Here is an example. I have dealt with 100's of people who find ways to change their pressure. The vast majority of people who change their pressures, are constantly changing their pressures. They spend much time trying to self diagnose instead of letting the therapy work. The bottom line is that you people will do what you want regardless of what I say. I am just a blogger who is concerned about the well being of OSA sufferers. I saw my dad have a poor additude, refuse to take things seriously, and watched him go blind, and watched him lose all motor skills from 2 strokes less than a week apart. I saw him build himself back up over the course of 3 years, while finally giving in to the idea that he should wear CPAP. Now he swears by it. He tried messing with things, and didn't do well. Once he left it alone, gave it several weeks, he did fine. He hasn't gone without his mask since. He wears it all night, just like I know all you can. I have seen people try tricks and cause harm to themselves. I have seen people raise their pressures, and raise their oxygen on their concentrators. I have seen the impact that this has on people, and its not good. Raising CPAP beyond where it should be, causes central apneas. Your brain doesn't give the signal to breathe. If you lower your pressure, you are going to have hypopneas, or apneas. If things are not comfortable, its important to really recongize what is causing the discomfort. Really pin point the problem, so you know where to go from there. I can give people the heads up on other treatments, other machines, masks, you name it. All I want to do is use my knowledge to maybe help a couple of people. I don't want to sound like a jerk, but I know very few people who have dedicated their lives to sleep as much as I have. I live for this job. My dad has a big part to do with that, but I am very passionate. So I apologize if you thought I was being rude. I have been apart of over 10,000 sleep studies, and have ran over 3,500 on myself. I have been a consultant for many users, and I have trained many techs in the past. I don't just train techs how to do their job, I train them how to read people, and how to understand what CPAP is really like. I am sure most people here have one thing in common. This whole treatment was totally sugar coated to them by their doctors. Doctors don't tell you that if you are a truck driver, train engineer, or a pilot that you could be screwed if you qualify for treatment. Most doctors don't even tell the patient why they think they need a sleep study to be honest. The first statement I usually here, (atleast 2-3 times a week) is "I have no $%^$ing clue why I am here. This isn't right. I just want to make it right in my own way. I can't reach everyone, but this is a good starting point.

[Slinky]

Eh, I've always figgered give people a break. If you check polysomo-man's other posts he "ain't" such a bad guy, dsm. Admitted this first post kinda makes you grit your teeth and maybe even bite your tongue but now look at how well he has "mellowed" w/his reply. Methinks he really does mean well and can be a real asset despite our differences of opinion on some issues.

[polysomno-man]

I am glad to hear it. Honestly, in the beginning, I was going to have a rant and never come back. Then I started reading all these problems people are having, and it enraged me. There are to many people out there giving sleep medicine a black eye. It honestly breaks my heart. not because people give me crap about it, but because it prevents people who need help from seeking it.

[Slinky]

Good going, polysomno-man. Yer getting the picture. Mutual respect. THANKS. Yer gonna find some pretty savvy folks in this forum. I'm not even going to try to list them as sure as the devil I'll leave a leader out. And on occasion other RPSGTs, RTs and sleep professionals. SAG is probably our "senior" sleep professional having stayed around the longest and been a great asset. Dr Barry Krakow and Dr Steven Y Parks are two very savvy sleep docs who occasionally post in these support forums.

[polysomno-man]

oh

[greenvelvetdragon]

no further comment

[polysomno-man]

I deleted my original post that caused hard feelings. While I was joking (mostly) I definately don't want to get started on the wrong foot. I want to be an asset. Not an ass.