Newbie - Needs some straight talk... NOW!

Wow, not much to add, except these things:

1. Welcome!

2. Sum up all your out of pocket costs for the mask and machine at your local DME (Durable Medical Equipment provider). Compare your costs with what you might pay for the same on cpap.com for the same items (including taxes and shipping, etc). If it's about the same or less, or the DME is not helpful in getting exactly what you want, bag the DME and do it yourself on line. I found out afterward that if I had bought my equipment on line it might have been cheaper than running it through insurance. There are a few good stories on the forum about local and national DME's, but I fear you will find many of us have had less than stellar experiences with them.

echo wrote:swezey - you would be wise to take advice from "guests" with a grain of salt. Of course you know this site is not for medical advice , you will have read at the bottom of each page the disclaimer

cpaptalk.com wrote:The information provided on this site is not intended nor recommended
as a substitute for professional medical advice.

That said of course you can take everything WE say with a grain of salt too

I won't even dignify the remarks from "guest" on exercise and losing weight, when it is obvious that you don't even have energy to stay up to watch the footy (Edit: not that it is BAD advice by any means. If you CAN take a few walks during the week, then it WILL help!)

Allow me to echo Echo (hee hee; I've wanted to say that for a long time; yup, it was FUN). I won't dignify "guest's" remarks, either, because nothing can do that. I just want to say this: Do NOT accept this person's criticism, superior attitude and ridiculous "advice." Do NOT expect more of yourself than you can reasonably provide. It's obvious you're doing what you can, and IT IS ENOUGH. Do NOT beat yourself up for not doing what's beyond your energy level. "Guest's" message is NOT reasonable, caring or supportive. Okay, I think that's enough NOTs for now. (People like that just make me so mad; I'm gonna calm down after a while; stomp, stomp, mumble .....)

Marsha

Swezy..I've been using my system for a very short time now but I sure related to your story budd. Only thing I can add is, like others, YES! it does get lots better!
Virt

GREAT words of encouragement continue to pour in - thanks so much to everyone! Seems many people here are more interested in my success than my doctor. A few comments:

GUEST - thanks for your comments. I DID in fact fill out a lengthy questionnaire for my sleep doctor informing him of the memory, concentration and depression issues. I was referred to him by my family doctor who was not really comfortable working with my on my OSA - in fact I had to initially suggest to him that I might have it. My sleep doctor treats ALL kinds of sleep disorders, OSA being simply one of many from what I gathered. In fact, when I asked him about what machine he thought I would get and the one he said didn't have any kind of auto pressure adjustment or exhalation relief, I questioned him. He seemed to think those things were of dubious value. Seems to me having a machine that automatically uses the LOWEST pressure possible to prevent apneas instead of blowing down your throat all night at a constant 12 PSI would lead to a more comfortable experience with higher compliance so I'm starting to even question his commitment to my treatment as well. I have only seen him once so far.

As far as excercise, I would LOVE to get out and walk or run. My wife takes the kids to the park and often I don't go because I simply can't keep up with them (which of course is depressing, wash, rinse, repeat....). When you have to call your wife to have her talk to you the entire car ride home from work to keep you awake, going for a brisk walk when you get home just isn't realistic. I SWEAR as soon as I have an iota of energy to spare, I am going to start exercising.

ECHO - Yes I clearly understand that I am not asking for medical advice, but more just for the EXPERIENCES of others who have the same condition as myself. It's clear my sleep doctor has never had OSA by his cavalier attitude towards my results and questions. I will definitely get my test results from BOTH studies. The nice thing is that I had them both done at the hospital about 2 miles from my house so getting them should be fairly straightforward. This is also where my GP is but NOT the sleep specialist. The fact that there are REAL people out there who started in the same place as me and are getting better is consoling and HOPE GIVING!

DreamDiver - So far my experiences with insurance and the DME have been terrible. The process of getting the prescription, then getting approval, then getting the order to the DME, then waiting for the DME to get in touch with me is why after 3 weeks since my SECOND study I STILL do not have any equipment. They are saying MAYBE this coming week. It has been totally frustrating. Well I finally had enough and DEMANDED the sleep doctor FAX me a copy of my script which they did which started my search on the internet (thus leading me to CPAPTALK.COM so something good already has come of this!). My fear is that if I stick with the DME, I'll have a frustrating time if I need to try a different mask, type of machine, settings, etc. EVEN IF IT COSTS ME MONEY, I'd rather be in control of the situation so I can manage my own treatments. But, from the looks of things, it probably will come out cheaper in the long run to boot.

Thanks again to everyone for your comments - I am open to anything - the GOOD, the BAD and the UGLY. Just keep your comments coming in - it makes me feel not so alone in all this. I'm not sure what FORUM etiquette is but, if it's allowed, I would be PLEASED and EXCITED to continue this thread with my progress. If that's not allowed or theres a different place for that, please let me know but I really feel like sharing with everyone here will truly help me (and maybe help someone else just like me in the future???) and will help keep me focused and motivated on what I need to do... I hope to become one of the forums SHINING SUCCESS STORIES that will maybe be an inspiration to someone just like me in the future! That's the best thing I could think of to give back to the forum - I think it was the English poet George Herbert who said "Living well is the best revenge!" LET'S ALL GO FOR IT!!!

I can see that you deleted my very valid post. You can all sit around here in a love-a-thon and pat yourselves on the back. That said, you are all being irresponsible. I had a chat about this with my roommate who is a medical resident. What likely none of you realize is that the majority of people who have depression, which is a serious medical condition, don't seek treatment. This is either through being embarrassed, afraid of the stigma of a mental disease or other reasons such as seeking advice from non-medical practitioners.

The first advice that you all should be giving this person is to see a doctor. None of your are qualified to treat depression and this is the first thing that the person should do. A doctor will be able to make an actual diagnosis and look for things like signs that the person is looking to do hard to themselves or to someone else. A sleep doctor will also know how likely the depression is tied to something other than this person's apnea. This entire thread is void of this advice and yet you chose to delete my post.

Giving this person anything other than the correct advice, of seeing a doctor as being the priority, could lead to adverse outcomes like suicide. Of course, the person wouldn't be posting here at that point, so you'd all be sitting back and patting your backs thinking you'd done a great job. This place is a good forum to post about advice to people on how to use a CPAP machine. None of you should be giving medical advice. Giving general suggestions, such as exercise, is perfectly fine provided that the emphasis is on suggesting that the person gets medical attention that they need.

Regular moderate exercise has been proven in various studies to be as effective as anti-depressants for people with mild to moderate depression. It's also a great way to lose weight and improve your apnea. Of course, it doesn't seem like any of you have rad up on this topic at all, so I'm not surprised that nobody pointed this out.

To swezey, great post and great replies

BTW my earlier remark on getting advice from the forum was more of a sarcastic reply to "guest". We all know why you're here Yes it makes a WORLD of a difference to read others' experiences here and get encouragement!

As for forum etiquette, well ahem... you will find that we are a loud and fun bunch. Not much decorum here Just kidding.

Feel free to post your progress in a new thread, or in this thread, up to you. I would find a new thread easier to keep track of and probably others will agree.

Often we post to each other on our failures as well as our successes. So please do share with us how you're doing, even if it is "Durn couldn't sleep all night with the horrid thing on" .. or "3 nights in and my AHI is 0.0" !!! Often times if you share with us the problems we're having, we can help you troubleshoot the issue. You won't be the first to fight with high pressure or mask leaks or rainout or annoying docs and DMEs'...

I like your last quote too GO FOR IT SWEZEY!!!

To GUEST: Most of us do NOT delete posts. So I'm sorry your post got deleted, because you did have some valid points. On the other hand, we do not need preaching around here. If you had even bothered to read swezey's post, and if you ever did have OSA, you would know it's not as simple as "get off your butt you lazy a**hole"... which is what it sounds like you're saying. Anyway, if you have something to SHARE, please do. But no preaching needed here... And by the way, most of us DO mention depression to our docs, and so did swezey. Well you know what happens then, don't you. We get prescribed antidepressants instead of getting treated for OSA. Have you not read about THOSE statistics?? It took me YEARS to convince the docs that I wasn't depressed, just sleep deprived. Any many will tell the same story.

myapapismadhot (signed in as guest) wrote:You saw a doctor to get a sleep test. You should have mentioned this. THIS FORUM IS NOT A PLACE TO GET MEDICAL ADVICE... NOW! It's a great place to get tips on using something like a CPAP. See a doctor. You sound very depressed. Why you didn't tell him/her that when you saw them I don't know.

In the meantime, you said you have some weight to lose. Start exercising. That will make you feel better. Do a brisk hour of walking 5 days per week and see your doctor.

myapapismadhot ,

It helps to sign in. Might as well, eh?

Ironically, you've diagnosed swezey with depression and given him/her medical advice (brisk exercise) in the same breath that you tell us not to take it from a forum such as this. You then abjure swezey for not telling a doctor about depression s/he may or may not have.

We all come into this with differing amounts clarity and function as your own symptoms seem to indicate. If someone can't remember what they read or wrote in the last five or twenty minutes because of sleep disordered breathing, expecting them to exercise frequently or briskly may actually be the wrong advice. Sleep is the time when our bodies repair themselves. Exercise breaks down our muscles and sleep restores them. In a properly functioning body, sleep is restorative to both mind and body in a very literal sense. But when you're not getting enough sleep to repair the brain, it's a good indication that you're probably not getting enough sleep to repair the body either. Forced over-exertion without restorative sleep obviously can have detrimental effects, as we are told by the very doctors who tell us to get sleep therapy. Weight loss can be started more appropriately in these situations with diet changes on a sensible plan like weight watchers. Exercise may need to start out a little more cautiously depending on the condition of the person.

Doctors are not gods. They are not all-knowing and deserve the respect any human does - not more - because they make mistakes just like the rest of us. Swezey's comments mirror my own experience almost exactly, as with many others. It's more about confirmation and understanding. That said - asking even half-way sensible questions on a forum like this is a good way to prepare yourself for the doctor's office. At some point, you have to take control of your own therapy because the doctor's only going to see you for fifteen minutes if you don't have your prepared list of questions and take notes. And they're not going to be at your bedside every night to check your readings and tell you how to make your AHI better. Arming ourselves with knowledge in a supportive environment gives us all a better chance of getting through this.

Great post by Echo! (Edit: and by DreamDiver too)

Most of us would be pleased and excited to follow your progress - post it wherever you feel its convenient.

Guest's posts are certainly not spam - its actually funny to see him making a fool of himself as he goes about diagnosing another poster with depression, with the help of his (gasp!) roomate who is a medical resident. And both seem not have done any professional reading on the subject of apnea and depression.

Symptoms of Depression in Individuals With Obstructive Sleep Apnea May Be Amenable to Treatment With Continuous Positive Airway Pressure* Daniel J. Schwartz, MD; William C. Kohler, MD and Gillian Karatinos, MD

We noted that a substantive number of the individuals referred to our center for evaluation of possible obstructive sleep apnea (OSA) had been prescribed antidepressant medications prior to referral. When evaluated with the Beck Depression Inventory-Fast Screen for Medical Patients (BDI),1 we found that 41% of our patients had a score suggesting at least mild symptoms of depression, and 12% had a score suggesting moderate to severe symptoms of depression. The prevalence, in our patients, of symptoms suggesting the diagnosis of depression, and the incidence (39%) of having been prescribed antidepressant medication prior to referral for a suspected diagnosis of OSA, seemed disproportionate to the incidence of depression in the general population.2–4

That's my emphasis.

Research Letter
Sleeping Poorly ... and Maybe Depressed: Comorbidity in Patients Referred for Formal Sleep Studies
Adam J. Sorscher, MD

We administered a 7-item questionnaire to 100 consecutive patients referred to our sleep center for polysomnography (Table 1). We inquired about previous diagnosis of depression and, when it was present, about patterns of evaluation and treatment for it. The final item was an open-ended question to elicit the patient's own perceptions of how their mood and sleep complaints are related.

Discussion
In this survey of 100 patients referred to our sleep center, we found that a very high proportion (53%) of them had also been diagnosed with depression. This is consistent with other estimates of comorbidity between depression, insomnia, and obstructive sleep apnea.6 This high concordance serves as a reminder that when primary care physicians diagnose depression, they should question their patient closely about sleep complaints, especially obstructive breathing patterns and insomnia.

Emphasis in the original.

Edit: And a review: http://annals-general-psychiatry.com/content/4/1/13

O.

swezey wrote:Seems to me having a machine that automatically uses the LOWEST pressure possible to prevent apneas instead of blowing down your throat all night at a constant 12 PSI would lead to a more comfortable experience with higher compliance so I'm starting to even question his commitment to my treatment as well. I have only seen him once so far.

Strictly IMHO, I liked having an APAP to begin my treatment and may use that feature again in the future as I am in the process now of losing weight and will want to see if my treatment is affected. However, there are also lots of people who use straight CPAP without a problem. I'm under the impression that most of us have more problems with masks than machines.

I think DreamDiver's comments are right on. Having a medical resident for a roommate seems to me to be less qualification for giving medical advice than being an xPAP user However, I don't think most people here are trying to give medical advice ... we're sharing our collective experiences and encouraging each other to stick with the treatment. People who are docs and people who have OSA are not mutually exclusive and both can co-exist in varying ways. We each have our own unique combinations of knowledge, common sense and (poor to excellent) sleep docs and people skills.

Mindy

Thanks for the links to the actual studies Ozij! I knew they were out there somewhere but didn't want to go hunting for them

Well said DreamDriver and jules and ozij and mindy and goose and marsha and who else did I miss
Goofproof - you're onto something there! I can never keep them REMspironfips straight

NOW, I need to get back to studying about dementia and stroke ...

swezey wrote:DreamDiver - So far my experiences with insurance and the DME have been terrible. The process of getting the prescription, then getting approval, then getting the order to the DME, then waiting for the DME to get in touch with me is why after 3 weeks since my SECOND study I STILL do not have any equipment. They are saying MAYBE this coming week. It has been totally frustrating. Well I finally had enough and DEMANDED the sleep doctor FAX me a copy of my script which they did which started my search on the internet (thus leading me to CPAPTALK.COM so something good already has come of this!). My fear is that if I stick with the DME, I'll have a frustrating time if I need to try a different mask, type of machine, settings, etc. EVEN IF IT COSTS ME MONEY, I'd rather be in control of the situation so I can manage my own treatments. But, from the looks of things, it probably will come out cheaper in the long run to boot.

..."Living well is the best revenge!" LET'S ALL GO FOR IT!!!

Sounds like you're already well on your way. I've dumped Apria. If you're stuck with Apria for a DME, don't count on anything except them taking your money. They won't let you exchange a mask for another one if it doesn't work. They generally seem to have no personal experience with OSA. There is no trial period. They'll try to make you take a cheaper machine than the one you want. They don't even know how to use the card-reading software, nor do the actually have it in the local office. They were just acquired by Blackstone, so it's only going to get worse.

If you're saying you're just going to buy from cpap.com and you have BCBS, you may be able to get your insurance to still cover things. Check with billmyinsurance.com and with BCBS to find out.

Guest wrote:I can see that you deleted my very valid post. You can all sit around here in a love-a-thon and pat yourselves on the back. That said, you are all being irresponsible. I had a chat about this with my roommate who is a medical resident. What likely none of you realize is that the majority of people who have depression, which is a serious medical condition, don't seek treatment. This is either through being embarrassed, afraid of the stigma of a mental disease or other reasons such as seeking advice from non-medical practitioners.

The first advice that you all should be giving this person is to see a doctor. None of your are qualified to treat depression and this is the first thing that the person should do. A doctor will be able to make an actual diagnosis and look for things like signs that the person is looking to do hard to themselves or to someone else. A sleep doctor will also know how likely the depression is tied to something other than this person's apnea. This entire thread is void of this advice and yet you chose to delete my post.

Giving this person anything other than the correct advice, of seeing a doctor as being the priority, could lead to adverse outcomes like suicide. Of course, the person wouldn't be posting here at that point, so you'd all be sitting back and patting your backs thinking you'd done a great job. This place is a good forum to post about advice to people on how to use a CPAP machine. None of you should be giving medical advice. Giving general suggestions, such as exercise, is perfectly fine provided that the emphasis is on suggesting that the person gets medical attention that they need.

Regular moderate exercise has been proven in various studies to be as effective as anti-depressants for people with mild to moderate depression. It's also a great way to lose weight and improve your apnea. Of course, it doesn't seem like any of you have rad up on this topic at all, so I'm not surprised that nobody pointed this out.

Blah, blah, blah.........
Over the past several years, these forums have had MANY reports by people who were MIS-diagnosed and MIS-treated by REAL(?) doctors as having depression when in fact, they needed XPAP therapy.....and their "depression" went away. If one does a simple Google search on "depression and sleep apnea" they'll find many, many links. Here are a few.

Depression & Sleep Apnea:

http://news-service.stanford.edu/news/2 ... ssion.html

http://sleepdisorders.about.com/cs/rela ... iadeap.htm

http://query.nytimes.com/gst/fullpage.h ... sec=health

http://www.annals-general-psychiatry.com/content/4/1/13

http://www.psychosomaticmedicine.org/cg ... 443?ck=nck

http://www.johnshopkinshealthalerts.com ... 388-1.html


Not offering "medical advice"......just information for the users to make informed decisions.

Den

Why do DME's get such a bad rap by everyone.
Am I the only one that has found a good one?

Issac wrote:Why do DME's get such a bad rap by everyone.
Am I the only one that has found a good one?

Nope! There ARE some good ones out there.......in fact, several of them contribute to this forum. (and we appreciate their presence)
Consider this though...... Most of the people who seek out help from the Internet forums have been treated poorly by the medical/DME/insurance entities and that's why they're here.

Den

DreamDiver wrote: Sounds like you're already well on your way. I've dumped Apria. If you're stuck with Apria for a DME, don't count on anything except them taking your money. They won't let you exchange a mask for another one if it doesn't work. They generally seem to have no personal experience with OSA. There is no trial period. They'll try to make you take a cheaper machine than the one you want. They don't even know how to use the card-reading software, nor do the actually have it in the local office. They were just acquired by Blackstone, so it's only going to get worse.

This is very different than our experiences with Apria. They have a 30 day mask exchange policy. My husband is going in tomorrow to exchange his. The RT's we've worked with are very knowledgeable about OSA. They have downloaded data for both of us with no problems. Apria staff took time to talk with me about problems I was having *before* I became their customer. The "trial period" with a machine seems to depend on your insurance plan. (Our experience is with Tricare, which follows Medicare and rents the machine for 15 months before you own it.)

We are so pleased with Apria, after dealing with two other DME's, that we wrote a letter commending the staff at our local office. Like any big company, it depends upon the people you're working with directly. Sounds like DreamDiver got some bad ones and we found some good ones.