Hello & A Few Questions

I have been lurking around on this board for awhile, so I figure it is time I make my presence known. One reason is to join the community. The other is to let everyone know what a benefit your posts have been. Because when it comes to CPAP therapy, I am a do-it-yourself-er.

Out of concern for my ability to obtain, and maintain, life insurance (my CDL and other things that require a health check), I am unwilling to go the route of a sleep study and formal diagnosis of OSA. And I don’t really feel the need to pay someone to confirm what my wife has been complaining about for the past 17 years; severe snoring and continual breathing interruptions. When your children, 13 and 10, would pass up a week at Disney World rather than spend a week in a hotel room with you . . . there is a real issue!

So I have secured a Respironics M Series Auto, the integrated heated humidifier, a Mako DT3500 Smart Card reader, and a copy of Respironics’ Encore Pro (v.1.6.22) software. I have also been given a Respironics ComfortCurve and ComfortGel; as well as a Mirage Swift. Now I have to determine a proper pressure range for my machine and identify the mask that works for me.

So if anyone has some input for a do-it-yourself type, it will be greatly appreciated. From what I have read it seems that I can get as good, and most likely better, input from actual “hoseheads”, as from a trade school sleep tech. I am not saying the sleep lab folks are useless, but managing OSA is not on the same level of difficulty as, say, an endocrine disorder. So I believe with the Auto and software I should be able to find the pressure levels that work for me.

A few questions I do have are:

What experience have folks had with therapy after having a few drinks (not a bender)? I am in sales and at least once a week I am taking folks out for dinner and drinks. So I am interested in how it is going to effect things.

What are the rules for those times when you have moderate to severe congestion? I have been reticent to attempt to start therapy due to congestion following a major cold. And with my level of travel, I constantly find myself congested from either “airplane air” or some bug I’ve picked up.

I look forward to input from those with some experience. And, as it seems that for most a diagnosis of OSA leads to their therapy becoming a hobby, I expect I will be conversing with you all on a regular basis.

Thanks!
Sleep Well!!

Self-Directed wrote:

I have been lurking around on this board for awhile, so I figure it is time I make my presence known. One reason is to join the community. The other is to let everyone know what a benefit your posts have been. Because when it comes to CPAP therapy, I am a do-it-yourself-er.

Out of concern for my ability to obtain, and maintain, life insurance (my CDL and other things that require a health check), I am unwilling to go the route of a sleep study and formal diagnosis of OSA. And I don’t really feel the need to pay someone to confirm what my wife has been complaining about for the past 17 years; severe snoring and continual breathing interruptions. When your children, 13 and 10, would pass up a week at Disney World rather than spend a week in a hotel room with you . . . there is a real issue!

So I have secured a Respironics M Series Auto, the integrated heated humidifier, a Mako DT3500 Smart Card reader, and a copy of Respironics’ Encore Pro (v.1.6.22) software. I have also been given a Respironics ComfortCurve and ComfortGel; as well as a Mirage Swift. Now I have to determine a proper pressure range for my machine and identify the mask that works for me.

So if anyone has some input for a do-it-yourself type, it will be greatly appreciated. From what I have read it seems that I can get as good, and most likely better, input from actual “hoseheads”, as from a trade school sleep tech. I am not saying the sleep lab folks are useless, but managing OSA is not on the same level of difficulty as, say, an endocrine disorder. So I believe with the Auto and software I should be able to find the pressure levels that work for me.

A few questions I do have are:

What experience have folks had with therapy after having a few drinks (not a bender)? I am in sales and at least once a week I am taking folks out for dinner and drinks. So I am interested in how it is going to effect things.

What are the rules for those times when you have moderate to severe congestion? I have been reticent to attempt to start therapy due to congestion following a major cold. And with my level of travel, I constantly find myself congested from either “airplane air” or some bug I’ve picked up.

I look forward to input from those with some experience. And, as it seems that for most a diagnosis of OSA leads to their therapy becoming a hobby, I expect I will be conversing with you all on a regular basis.

Thanks!
Sleep Well!!

So you secured a machine without a doctor, diagnosis, prescription, no PSG not even a professional evaluation? It also means you are using that machine illegally.

If that is the case, sorry, you are on your own as far as I'm concerned, good luck.

Dude (or dude-ette) why the attitude?! I had a golf buddy write the prescription. This is a disorder they allow high school graduates diagnose. The sleep study and titration is just a way for the neurologist to make a pay day, so I decided to pass. Didn't mean to upset anyone!

Snoredog wrote:So you secured a machine without a doctor, diagnosis, prescription, no PSG not even a professional evaluation? It also means you are using that machine illegally.

If that is the case, sorry, you are on your own as far as I'm concerned, good luck.

Let's see, how can I best express it.... uh, got it!: DITTO

(Tricia: who prays that you will not diagnose and attempt to treat yourself for Diabetes... or Leukemia... or anything else, get the idea?! Guess I'm a Dudette with an attitude!)

The above being said and done...(wake-up call!)... it might be good to add to that the following:

It is admirable that you are a do-it-yourselfer. I think is is wonderful when someone pays attention to the signals their bodies are sending them and acts on them with professional help. Many of us here will be more that willing to help you iron out the kinks after you have been professionally diagnosed by and prescribed with an xpap. In my opinion you are playing a very dangerous game here and you should not be too surprised when we don't want to play it with you.

Please reconsider your actions and seek professional help.

SelfDirected wrote:when it comes to CPAP therapy, I am a do-it-yourself-er.

Out of concern for my ability to obtain, and maintain, life insurance (my CDL and other things that require a health check), I am unwilling to go the route of a sleep study and formal diagnosis of OSA. And I don’t really feel the need to pay someone to confirm what my wife has been complaining about for the past 17 years; severe snoring and continual breathing interruptions.

SelfDirected,

As you probably know, since you've been reading this message board for quite some time, I started out as a cpap do-it-yourself-er, too.

I did it the "self-route" way because I didn't have insurance. You're doing it that way because of other very valid concerns regarding insurance and a commercial driving license. Far better that a person do what you're doing, in my opinion, than to not get treatment at all.

I applaud what you are doing for yourself. Your golf buddy is obviously a doctor since he wrote the Rx for "CPAP" for you. If all you've got going on with your sleep disordered breathing is plain old garden variety OSA, you're likely (in my non-medical opinion) to get good results from putting yourself on CPAP.

You've got the equipment now to see how your self treatment goes. You're obviously an intelligent person. Unless you have other underlying health conditions that would make "autopap" a poor choice for you, I (non-medical personal opinion, remember!) don't see anything wrong in what you're undertaking to help yourself.

I'd suggest keeping an eye out for a way to get an "informal" full PSG sleep study someday if you can. Just to see if there's anything else going on in your sleep that needs addressing. Perhaps your golf buddy has a buddy who has a buddy who has... connections that eventually might lead you to having an off-the-record, out-of-your-pocket PSG done.

In the meantime, I think you've chosen to do a smart thing for yourself, for your family...and for other drivers out there.

We do what we gotta do. Or, at least what we think we gotta do.

Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004 - by Dr. Barbara Phillips (board certified pulmonologist and board certified sleep doctor) -- "Not Every Patient Needs to Go to the Sleep Lab."

Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?

rested gal wrote:I applaud what you are doing for yourself. Your golf buddy is obviously a doctor since he wrote the Rx for "CPAP" for you. If all you've got going on with your sleep disordered breathing is plain old garden variety OSA, you're likely (in my non-medical opinion) to get good results from putting yourself on CPAP.

I'd suggest keeping an eye out for a way to get an "informal" full PSG sleep study someday if you can. Just to see if there's anything else going on in your sleep that needs addressing. Perhaps your golf buddy has a buddy who has a buddy who has... connections that eventually might lead you to having an off-the-record, out-of-your-pocket PSG done.

In the meantime, I think you've chosen to do a smart thing for yourself, for your family...and for other drivers out there.

We do what we gotta do. Or, at least what we think we gotta do.

I am truly relieved that self-diagnosis and treatment has proved the right decision for some... Even if the buddy is a doctor, I find it shocking and unforgivable to prescribe treatment without checking into the actual causes thereof. I will be thrilled out of my little gourd if plain old garden variety OSA proves to be the actual cause of distress for SelfDirected.

PLEASE BE WARNED: My Sister-in-law knew of my condition, the symptoms I had suffered, feeling worse in the morning than before going to sleep, headaches, chronic tiredness, depression-like symptoms, memory loss... Her buddy was an RN that was married to a doctor....prescription no problem, help getting numbers punched in also no problem (great thing to have a buddy who has a buddy who...). She even was starting to feel better for a while... by the time she was correctly diagnosed it was much to late. She died just a little over two years ago leaving behind my wonderful little brother and their two young sons (the eldest autistic). Never smoked a day in her life and died of lung cancer.

I remain steadfast and implore you: Please seek professional help to get properly checked. Insurance and a licence are no good if you are no longer with us in a year or two.

Didn't cpap.com at one time offer "home sleep study" strips?

As for congestion, full face masks are often the preferred treatment interface .... also suggested for mouth breathing and mouth leaking folks. Mouth leaks are a common occurrance for those needing higher pressures. There are also medications of course and some here will recomend the saline nasal wash too.

Some common FF masks include:
Ultra Mirage
HC431 & newer HC 432
Comfort Full
Hybrid - not actually FF but functions in similar fashion
Solya - supposed to be comming out with new FF early next year

Do a search on this forum to get an idea of how the FF masks differ.

Best of luck with your treatment.

BTW - I think RestedGal is right and you should try and get yourself a real sleep study done at some point ... maybe if it is done overseas it does not have to go into your medical record (really dunno about the legal stuff though)?

- r

rustynail wrote:Insurance and a licence are no good if you are no longer with us in a year or two.

The same may be true if he were to have a heart attack or stroke because he did nothing about his OSA.

My dad died of throat cancer when he was 67 but he had two heart attacks and a stroke before he was 60. Although I had never heard of OSA before the summer of this year, I do know that my father had an undiagnosed severe case of OSA for most of his life based on the same symptoms I have. Also, I doubt that my sleep doc or the sleep lab techs would diagnose me as having lung cancer with a standard sleep study and I would never suspect it myself because I too am a non-smoker (unlike my dad who smoked and drank himself to death). Nevertheless, I am sad to hear of your sister's misfortune.

I feel very fortunate to have health insurance even as a lowly paid public servant. Almost half of the US population is not as fortunate … no reason to give up and die. At least Selfdirected is making an attempt to keep himself alive.

As for refusing to help him because he is breaking the law … pffff !! As I understand it, is against FDA laws to adjust our own machine (and if I’m wrong about this then surely there are state medical licensing laws that prohibit it) and yet, I see no one refusing to help others with changing their machine settings. If this forum is meant to enforce medical laws pertaining to OSA then we are doing a really bad job of it.

Give the guy a break! I see nothing wrong with encouraging all to have a professional sleep study but I thought we were here to help folks treat their OSA.

Drinking can make OSA worse. On days when you have consumed alcohol you may notice more events.
I just got over a terrible cold, used the apap everynight anyway. Just clean everything very well each day. I have less congestion with xpap.
I had a sleep study because my MD said it was the only way to get ins. to pay for the machine. He told me after 3 months of compliance that I was on my own. Never saw a sleep Dr. I have Apria for a DME so no help there.
Good luck with your treatment, and do let your MD know what you are doing.

Brenda

Check your PMs

Hi Self Directed,
I applaud your efforts to treat your disability. Many people do not want to take the chance of jeopardizing their job if their disability was known. Some people cannot afford the cost of physicians and sleep studies. Unfortunately, too many people after going the prescribed way stop treatment because they can not adjust to the masks or the CPAP and they don't have the proper support you would think they are entitled to have. You have circumvented this by taking charge of your therapy.
I would suggest that you read, read, and read about your disability. This is an excellent forum with a lot of knowledge. The people here are extremely helpful.
I agree with Rested Gal I'd suggest keeping an eye out for a way to get an "informal" full PSG sleep study someday if you can. Just to see if there's anything else going on in your sleep that needs addressing.
Good Luck,
Seena

DreamStalker wrote:As for refusing to help him because he is breaking the law … pffff !! As I understand it, is against FDA laws to adjust our own machine (and if I’m wrong about this then surely there are state medical licensing laws that prohibit it) and yet, I see no one refusing to help others with changing their machine settings. If this forum is meant to enforce medical laws pertaining to OSA then we are doing a really bad job of it.

Give the guy a break! I see nothing wrong with encouraging all to have a professional sleep study but I thought we were here to help folks treat their OSA.

There have been some interesting topics with various opinions (just personal "opinions", not "legal opinions") about the legality of adjusting the pressure on one's own machine:

Jul 30, 2005 subject: Changing your own pressure settings
viewtopic.php?t=3898

Jun 20, 2005 subject: cpap pressure setting
viewtopic.php?t=3366

Oct 04, 2006 subject: What happens if you change the pressure on your own?
viewtopic.php?t=14068

I personally don't have a bit of hesitation about changing anything I want to on my own machine. Or talking about "what I'd do if it were me" when someone asks a question. I'm not a doctor or anything in the health care field and don't claim to be. I think the notice at the bottom of every page of this message board says it well:

"The information provided on this site is not intended nor recommended as a substitute for professional medical advice."

So you secured a machine without a doctor, diagnosis, prescription, no PSG not even a professional evaluation? It also means you are using that machine illegally.

Come on Snoregog, we all know curling irons are more dangerous than xPAPs.

SelfDirected,

I'm not going to be as judgemental as some of the others.....because I really don't see a whole lot of difference between what you're doing as compared to what Kaiser does with their patients.
If you aren't familiar with them and what they do, go to the search function and do a search on "Kaiser".
So, in that regard, I applaud you for wanting/deciding to take control of your health.
I'm glad to hear you got the software to monitor your therapy.....that will help greatly.

As far as a range of pressure, I would recommend starting somewhat higher than the minumum pressure of 4 and the upper pressure fairly high, also.....and then try narrowing the range as soon as possible by watching your reports.

Alcohol consumption will most assuredly affect your AHI and snoring.
As far as colds go, I would also recommend a full face mask. I use one 100% of the time anyway.
Depending on the severity of your cold, I'd advise getting started with your therapy as soon as possible.

Yes.....this therapy CAN become a "hobby".

Best wishes,

Den

Snoredog wrote:Self-Directed wrote:

I have been lurking around on this board for awhile, so I figure it is time I make my presence known. One reason is to join the community. The other is to let everyone know what a benefit your posts have been. Because when it comes to CPAP therapy, I am a do-it-yourself-er.

Out of concern for my ability to obtain, and maintain, life insurance (my CDL and other things that require a health check), I am unwilling to go the route of a sleep study and formal diagnosis of OSA. And I don’t really feel the need to pay someone to confirm what my wife has been complaining about for the past 17 years; severe snoring and continual breathing interruptions. When your children, 13 and 10, would pass up a week at Disney World rather than spend a week in a hotel room with you . . . there is a real issue!

So I have secured a Respironics M Series Auto, the integrated heated humidifier, a Mako DT3500 Smart Card reader, and a copy of Respironics’ Encore Pro (v.1.6.22) software. I have also been given a Respironics ComfortCurve and ComfortGel; as well as a Mirage Swift. Now I have to determine a proper pressure range for my machine and identify the mask that works for me.

So if anyone has some input for a do-it-yourself type, it will be greatly appreciated. From what I have read it seems that I can get as good, and most likely better, input from actual “hoseheads”, as from a trade school sleep tech. I am not saying the sleep lab folks are useless, but managing OSA is not on the same level of difficulty as, say, an endocrine disorder. So I believe with the Auto and software I should be able to find the pressure levels that work for me.

A few questions I do have are:

What experience have folks had with therapy after having a few drinks (not a bender)? I am in sales and at least once a week I am taking folks out for dinner and drinks. So I am interested in how it is going to effect things.

What are the rules for those times when you have moderate to severe congestion? I have been reticent to attempt to start therapy due to congestion following a major cold. And with my level of travel, I constantly find myself congested from either “airplane air” or some bug I’ve picked up.

I look forward to input from those with some experience. And, as it seems that for most a diagnosis of OSA leads to their therapy becoming a hobby, I expect I will be conversing with you all on a regular basis.

Thanks!
Sleep Well!!

So you secured a machine without a doctor, diagnosis, prescription, no PSG not even a professional evaluation? It also means you are using that machine illegally.

If that is the case, sorry, you are on your own as far as I'm concerned, good luck.