How do we know that a OSA Dx isn't a scam?

BlackSpinner wrote:

larry63 wrote:
You are so lucky! I miss my dreams. I don't recall any since I started CPAP. Last night I took the advice of someone to experiment and go a couple days with out,
and guess what? Awesome dreams!! I really am hoping that eventually I'll start remembering dreams again, because to me they're an essential part of my psyche.
I can't imagine life without dreams...

Well the reason you remember your dreams is because you woke up due to an event where you stopped breathing. So you can have a short life with vivid dreams or you can have a long one and learn meditation and lucid dreaming.

Exactly, Pre-Cpap, I used to watch Mike start to snore, mouth dropped open,that terrible silence, gasp, awaking startled and ashen-faced saying he had a "scary/crazy dream". Of course, now I know he was having apneas and feeling suffocated. If he does remember a dream now it's usually something silly or pleasant. As a non-cpapper if I do have a dream that I can remember, it's usually towards morning just before I wake.

kempo wrote:I am one of the lucky ones who got immediate energy from using a cpap. Some take longer. Sometimes months. Sometimes a change in mask types or pressure. Don't give up after just 6 weeks . Have and keep a positive attitude. Hang in there. It will get better.

I second this. If you started feeling worse immediately after starting CPAP, and it hasn't improved after a couple weeks of getting used to it, then it's very likely that your CPAP setup is harming your sleep quality more than it is helping, but you haven't exhausted the things you can change about your CPAP setup, and one of them might be the key to getting CPAP to work for you. This happened to me. I went about a year with no improvement using CPAP (versus not) before stumbling upon the solution.

About feeling worse after starting CPAP, one caveat to keep in mind is that if you were really bummed out about the idea of having to use CPAP, that could potentially cause mild depression that could make you feel worse and have lower energy levels during the day. If you were psyched to try CPAP I think you can rule that out however.

Sleep quality can be affected by a bunch of things with CPAP. The wakeups you are having where you remember adjusting the mask could be the tip of the iceberg. It's also possible that you would have been waking up during those times anyway, but remember it now because you have something to do (adjust the mask). I went through about a year of trying different things with my CPAP setup before finding an arrangement that was clearly working for me. Initially, CPAP didn't make me feel worse but it didn't help either. I believe the benefit I was getting from it (somewhat reduced breathing events) was being cancelled out by arousals related to the equipment. There were two major changes that helped in my case: 1) dropping the CPAP pressure range way down, and 2) shifting to nasal pillows system with a safer kind of mouth taping.

A little commentary on that (although it is special to me): it turns out that I don't respond well to full-face masks even though I'm a mouth breather and would seem to need it. I've had a couple of overnight titration studies, and neither of them managed to conclusively find a pressure that eliminated my breathing events. In hindsight this is because they started me off using a nasal mask, noticed that I was mouth leaking at higher pressures, and switched me to a full-face. But (I now know) with a full-face my breathing events will not drop anywhere close to zero even at relatively high pressures. The results were non-sensical so they just picked a pressure range (8-13cm) for me to use. Over the next year I used that pressure both with nasal and full-face masks and never felt that it helped me. With the nasal mask I had to tape my mouth completely shut to prevent mouth leaks at the higher pressures, but I'd wake up with my cheeks inflated like a puffer fish--I'm sure that sensation was causing arousals even when I didn't wake up. With the full-face, I had mask leaks at higher pressures which I'm also sure caused arousals, not to mention that a full-face can't stop all of my breathing events anyway. Finally, air was being pumped into my stomach at higher pressures. I wasn't swallowing it (I could feel it happening even when awake!). I asked my sleep doctor to look very carefully at my nonsensical titration study and he suggested setting my machine to a much lower pressure: 4-8cm. That worked! I could use the nasal pillows with a safer form of taping (a vertical strip over the lips) to prevent mouth leaks, not have the puffer-fish effect on my cheeks, and eliminate the air being pumped into my stomach. Within a week I was certain I was getting some benefit from CPAP.

Sleep apnea is a real problem. Being able to fix that problem is questionable. I found that the medical system is a bureaucratic system that is full of systematic problems. If you are a patient that can be easily fixed, then you have no problems. If your problems are little more complex, you are going to have major problems in getting the sleep apnea resolved. One problem I see is there is a problem with specialization in each medical field. It's hard trying to find a doctor that is qualified, knows his stuff and is willing to deal with the patient. They don't like it when you question them. They feel insulted if you ask them something they don't know. They will give you run around bs answers that take up time and leave as soon as they can. Sleep apnea can have many causes and complicating factors. The cardiologist covers the heart. The pulmonologist cover the lungs. Ear nose and throat doctors cover sinus and throat problems. Neurologist is supposed to cover brain and nerve problems. Good luck running between doctors and getting a straight answer. Some of these doctors will have practices set up to diagnose sleep apnea. It's easy money. All doctors are trying to get your money. They consult with you and maybe they run some standard tests that insurance will pay for. They don't tell you anything that puts their job or practice on the line. They may suspect problems and issues, but because of being sued or losing their job they will keep there mouth shut and send you to someone else. They watch out for problem patients and will ban you from their practice if they suspect you might become a problem for them. People have limitations and doctors are just ordinary people. They are not supermen. Most of them are not supersmart. It is hard trying to keep up on medicine, technology, law, office politics, and their family. Patient are cash cows. Doctors heard you through the system. Doctors will file you into easy diagnoses and standard tests. If your problem can't be solved in 15 minutes of doctor time, your out of luck. Sleep apnea requires the patient be educated in that area. That system does not exist. Nurses and DME people are qualified enough to do their job. They can't do or say anything that goes against standard protocol for fear of being fired. So is sleep apnea a scam. In a way it is. The problem is huge. A flaw in human design. A simple thing as not getting enough air when sleeping at night can be the cause of a lot of problems that kill people. Auto accidents and heart attacks are the biggies that kill people. So if anyone knows of good well rounded sleep apnea doctors that are helpful to patients then post who they are and where they are at. From what I have seen there are very few of them. They are most likely at research universities and they have sleep apnea as well.

borgready wrote: So if anyone knows of good well rounded sleep apnea doctors that are helpful to patients then post who they are and where they are at. From what I have seen there are very few of them. They are most likely at research universities and they have sleep apnea as well.

Is there an official policy here about naming names?

I'm sorry that I don't have time tonight (insomnia and way late for bed) to respond individually (now), but
thanks once again everyone for giving good constructive advice, while at the same time acknowledging
that the system is not working right now and that it is possible it might be in uncommon cases simply a money-making device for certain (not all!) business relationships.

It gives me great confidence that the posters here seem to be intelligent, full of great advice, but not blind to the possibility that
xPAP might not be a cure-all, and that there might be other issues going on beside OSA, or perhaps that a mis-diagnosis was made.

That is so great, and so much different then some other specialized diseased forums, where the posters attribribute every symptom they have to
their enamored dx.

No more time tonight - 'nite.

Wish I could fall asleep earlier. The more tired I am the harder it is for me to throw in the towel and go to bed (But I bet you people here know what I'm talking about - it's much easier to relax and go to sleep early when you're not overly tired. Overtired-==insomnia and rambling. I guess the body is going into emergency mode trying to keep you awake). But know it's time. . Zees in a few minutes I hope, after I wash off my mask and stuff...maybe an ambien.

'Nite

BlackSpinner wrote:

larry63 wrote:
You are so lucky! I miss my dreams. I don't recall any since I started CPAP. Last night I took the advice of someone to experiment and go a couple days with out,
and guess what? Awesome dreams!! I really am hoping that eventually I'll start remembering dreams again, because to me they're an essential part of my psyche.
I can't imagine life without dreams...

my

Well the reason you remember your dreams is because you woke up due to an event where you stopped breathing. So you can have a short life with vivid dreams or you can have a long one and learn meditation and lucid dreaming.

Well, black, although I really don't want a short life span, I have to say that dreaming is extremely important to my quality of life - YMMV.

And obviously lucid dreams are usually vivid!! That's kind of by definition, because you're conscious!

And I have in the past practiced meditation, but for some reason I don't find the time to do it these days, just as I don't find the tine to exercise, simply because my brain is telling me that I don't have the time to do either exercise or meditation because I'm so damn tired. And I know that this is faulty thinking - because this is _exactly_ what I need to be doing. at first naturally my brain is saying that I don't have the time for such things, when really, the time I put in to these things will pay off in increased concentration and focus througought the day!

At the moment, unfortunately, because I'm adjusting to CPAP, I'm completely exhausted during the day, and while I know that I need to start a daily schedule,
it's not that easy - my sleep cycle is _way_ off, I'm fighting off dosing off to sleep driving, but paradoxically I'm recently been having some days when I'm productive at work!


Lucid dreams are great! I haven't been having many lately (first because I've been so flucking tired), but also because I haven't been doing day-training. e.g. training yourself to several times a day, ask yourself, "does everything I'm observing make sense", or when reading something, remind yourself if the letters seem to juggle around, you're probably dreaming!
And an other good tip is to train yourself to look at your hands several times a day. Apparently if you train your self to do these things during the day,
you will at one point do the test in a dream, beacuase you've already made it a habit in your waking life. And then you will notice that something's not quite
right - hence a lucid dream!!!

Well we're really getting off-topic now, sorry.

But on an attempt to get back on topic, it would be interesting to know whether lucid dreamers tend to have spleep apnea, or is it the other way around?

What's your opinion?

L

larry63 wrote:

BlackSpinner wrote:

larry63 wrote:


But on an attempt to get back on topic, it would be interesting to know whether lucid dreamers tend to have spleep apnea, or is it the other way around?

What's your opinion?

L

I had lucid dreams pre-CPAP. They were short, vivid, very lucid dreams. Often with an upsetting or frightening componant at the end. They only lasted about 30 seconds however. Once I started CPAP that all stopped. Now I have hour long dreams. Some parts of them will be semi-vivid but most of the time they are long and boring. Kind of like watching a classic film. You stare at it and daydream about the first time you watched it. Maybe you perk up when you come to a part that you know is going to be good but mostly it is just a very relaxing experience. Most of the time the dreams are so long that I am fully aware that it is a dream about fifteen minutes into it. After that I walk around asking myself "What would Freud say about this?"

larry63 wrote:

BlackSpinner wrote:

larry63 wrote:


But on an attempt to get back on topic, it would be interesting to know whether lucid dreamers tend to have spleep apnea, or is it the other way around?

What's your opinion?

L

Lucid dreaming is not just dropping into a dream during the day. It is taking the time to sit in meditation and then allowing your self to slip consciously into a form of dream state.
If you are slipping into dream state during the day with out taking any effort to do it, that is a sign you are not getting and REM sleep at night.

Just get your act together and embrace cpap therapy and stop the playing with the denial. Remembering your dreams is not important compared to the effect of OSA on all your bodies organs. One of the effects of OSA is a kind of tunnel vision and focusing on some totally irrelevant detail. Get your therapy under control and in a couple of month when you reread these posts you will wonder what drug you were on when you posted this stuff.

Hey Larry,

Ok, DME's...for me, I didn't have a great experience with them and I don't blame you for not trusting them. For me, I didn't appreciate the fact they tried to give me a different machine than what my dr. prescribed. The reasoning, they had a deal with ResMed and gave me the bare bones CPAP when I was first diagnosed. Guess what? When I first got on that CPAP, I was just tired, grumpy, and apnea tired even after a month of use. I can tell you that it takes YOU being very vigilant and yes, even persistant, to get your apnea under control. The DME tries to control what you get. Guess what, being from the US you CAN control what DME you give your business to. Now depending on your insurance, it might just be cheaper to the the prescription from your dr. and buy a machine online.

As for my story...I was originally put on a CPAP with a pressure of 14, then increased to 16 after a month I believe. You'd have to go back to my beginning posts to know exactly as it's been quite a few years since I began treatment. Also, I went through 5 to 6 masks, and then went from a CPAP to an APAP and a pressure of (14 and then 16 to a range of 14-17) before I really noticed a difference. This took months of struggle and pestering my DME and threatening to go with another DME before they filled my prescription as my dr. prescribed. Due to this experience and seeing how expensive they are, I no longer use a DME for my OSA supplies.

I would encourage you to research the best machines out there with the best software. Do not get stuck with a machine that doesn't work for YOU. I don't know software would work with Linux, but I'm sure you can research that easily. And no, we aren't SUPPOSED to have the clinial manuals or the software; however, I disagree with that philosophy. My DME tried to give me the line that the software was ridiculously expensive and would cost at least a 1,000. I laughed at her. Ok, I wasn't trying to be rude, but since I'm a techie by nature I knew she didn't know what she was talking about. When I purchased the software for myself, if was a little over $100 and was well worth the investment. Actually seeing the pressure ranges at night and the apneas/hypopneas really helps to bring home my disorder and to tweak my treatment.

For me, it's cheaper to purchase my machine and all equipment online vs. going through a DME due to the high mark up. Actually, I'm planning to get a new machine later this year and will again purchase online because DME's are just way too expensive. Plus I will get the system I believe will work best for me vs. what the DME will make the most profit on. It's my LIFE...so for me, it's my choice.

It isn't necessarily a scam. However, sleep clinics focus in on treating OSA rather than curing it. If OSA was cured completely, then they couldn't sell CPAP machines. They are not focused on curing the aliment but rather just frighten people into buying their services and equipment. A weight loss plan is never offered or suggested by these places. In my case, I lost some weight and started snoring less with no more episodes of gasping for air. After I lose the rest of the weight to get to my goal, I won't have any OSA anymore and I can throw the CPAP machine out. The only reason why I use a machine now is because my wife is scared that I will die in my sleep because I still snore, but not as much. She saw a commercial for a local sleep clinic that basically says that anyone who snores will die in their sleep. Let's face it, most people have this condition because they are overweight. This is due to excess fatty tissue in the throat or sinuses. Every time I go to the sleep clinic or CPAP store the average patient/customer weighs at least 300lbs. At thirty pounds overweight I feel skinny compared to those people. There are some instances of normal sized people having OSA but it is usually due to some kind of deformity in the sinus, mouth or throat. That can be cured by surgery. There are some people who have a neurological source of the problem. Perhaps there is a medication for that. Sleeping with a CPAP machine is unnatural, uncomfortable, humiliating, expensive and inconvenient. Traveling with one of these devices at the airport is a pain. I just love it when the TSA guard yells out "I've got a CPAP passenger here" during the security check. There is no such thing as a comfortable CPAP mask. I never get a good night's sleep. I wake up at least 5-6 times a night because the mask hurts and needs to be adjusted or my nose starts to itch due to the humid air pumped through the tube. I sleep worse now than before I started using one of these devices. Before CPAP I never had symptoms associated with OSA such as headaches and fatigue. Now I have them because of the CPAP machine. I have to take long naps on the weekend without CPAP just to catch up on my sleep. I have gone through six types of masks and all of them were uncomfortable. I am using the CPAP as a motivator to lose more weight. If I lose the weight I won't snore and have to be shackled to the CPAP ball and chain anymore. If I continue to snore after the weight loss I will either get a dental device or have the pillar implant procedure. You are absolutely right to be suspicious. Anyone who just uses one of these monstrosities for the rest of their life without looking for alternatives is a sheep. Ask questions. Find solutions.

As a patient I know it is hard to know who is reputable and who is being questioned by federal authorities. You have to find yourself a good lab and a good sleep doc. If you are not immediately helped by the people you are seeing....

Find some one else. Doctors won't hold it against you if you start seeing another Doctor on the side. Best thing to do is to wait until 1am and call up a random sleep lab. Don't give them your name, just ask them who the best sleep lab in town is. Sleep techs don't have much 'lab loyalty' they will point you in the right direction and to a good sleep doc. In just about every city I've been in, everyone always seems to know who the best is.

And who the worst is.

Proactive wrote:It isn't necessarily a scam. However, sleep clinics focus in on treating OSA rather than curing it. If OSA was cured completely, then they couldn't sell CPAP machines. They are not focused on curing the aliment but rather just frighten people into buying their services and equipment.

Hey hey hey now, no self respecting sleep lab would EVER sell equipment or post PSG services. That is what DME companies do. If your sleep lab is also a DME company than you need to stay far far away from them.

Proactive wrote: A weight loss plan is never offered or suggested by these places.

That is not true. There are some sleep labs that will suggest and recommend that but the problem is that jaded people like me always assume that the patient is not going to loose any weight. Better to help them now than to tell them to do something they've been attempting for the last fifteen years.

Proactive wrote:In my case, I lost some weight and started snoring less with no more episodes of gasping for air. After I lose the rest of the weight to get to my goal, I won't have any OSA anymore and I can throw the CPAP machine out.

Good for you man. That is definitely the way to go. You drop even half that weight and you'll see a dramatic improvement.

Proactive wrote:The only reason why I use a machine now is because my wife is scared that I will die in my sleep because I still snore, but not as much. She saw a commercial for a local sleep clinic that basically says that anyone who snores will die in their sleep.

Stay away from that lab. What they are saying is technically accurate but they are twisting it to make it sound as scary as possible.

Proactive wrote:Let's face it, most people have this condition because they are overweight.

Yep!

Proactive wrote:This is due to excess fatty tissue in the throat or sinuses.

Actually no, it's a bit lower and external to the airway. It sits on the airway and folds inward when the muscles paralyze. It's complicated, keep going.

Proactive wrote:Every time I go to the sleep clinic or CPAP store the average patient/customer weighs at least 300lbs. At thirty pounds overweight I feel skinny compared to those people. There are some instances of normal sized people having OSA but it is usually due to some kind of deformity in the sinus, mouth or throat.

95% are botched surgeries were massive amounts of scar tissue have been added to the airway that constricted over time. Those are actually a bit more difficult to titrate for. Fat people are easy, you just add pressure until the airway is clear.

Proactive wrote:That can be cured by surgery.

Only with a good surgeon. Don't go making it sound like any ENT with a car payment due can fix that right up.

Proactive wrote: There are some people who have a neurological source of the problem. Perhaps there is a medication for that.

Okay now you are getting into Central Apnea, two completely different things.

Proactive wrote:Sleeping with a CPAP machine is unnatural, uncomfortable, humiliating, expensive and inconvenient.

So is choking every ten seconds.

Proactive wrote:Traveling with one of these devices at the airport is a pain. I just love it when the TSA guard yells out "I've got a CPAP passenger here" during the security check.

And what is the deal with that swab thing they rub on it? Are they checking to see if it is radioactive or something? I want to see one of those CPAP machines come up positive and the guard yell "Oh god! Oh god! This CPAP machine is ALIVE!!!!! HIT THE DECK!!!" Then he can wrestle it to the ground. "It's got me!"

Proactive wrote:There is no such thing as a comfortable CPAP mask. I never get a good night's sleep. I wake up at least 5-6 times a night because the mask hurts and needs to be adjusted or my nose starts to itch due to the humid air pumped through the tube. I sleep worse now than before I started using one of these devices. Before CPAP I never had symptoms associated with OSA such as headaches and fatigue. Now I have them because of the CPAP machine. I have to take long naps on the weekend without CPAP just to catch up on my sleep. I have gone through six types of masks and all of them were uncomfortable. I am using the CPAP as a motivator to lose more weight. If I lose the weight I won't snore and have to be shackled to the CPAP ball and chain anymore. If I continue to snore after the weight loss I will either get a dental device or have the pillar implant procedure. You are absolutely right to be suspicious. Anyone who just uses one of these monstrosities for the rest of their life without looking for alternatives is a sheep. Ask questions. Find solutions.

Just loose weight and you are done. I would say find another sleep lab or talk to another sleep doc. I would say do some research on the sleep doc that diagnosed you and try to find out what everyone's opinion of him is but honestly... loose weight and you are done.

Calist wrote:

larry63 wrote:

BlackSpinner wrote:

larry63 wrote:


But on an attempt to get back on topic, it would be interesting to know whether lucid dreamers tend to have spleep apnea, or is it the other way around?

What's your opinion?

L

I had lucid dreams pre-CPAP. They were short, vivid, very lucid dreams. Often with an upsetting or frightening componant at the end. They only lasted about 30 seconds however. Once I started CPAP that all stopped. Now I have hour long dreams. Some parts of them will be semi-vivid but most of the time they are long and boring. Kind of like watching a classic film. You stare at it and daydream about the first time you watched it. Maybe you perk up when you come to a part that you know is going to be good but mostly it is just a very relaxing experience. Most of the time the dreams are so long that I am fully aware that it is a dream about fifteen minutes into it. After that I walk around asking myself "What would Freud say about this?"

If you're interested, there are some exercises you can do to learn how to lucid dream again. On trick for example is to every so often during the day ask yourself if everything around you makes sense? E.g. is the sky the right color? Are my surroundings familiar? Can I read? I are the people I'm talking to really geographically likely to be around, and are they alive? If your lucid dreams havve an upsetting component, it's sometimes easy to redirect them (since you have full control over what happens). Anyway, OT again, sorry.

BlackSpinner wrote:

larry63 wrote:
You are so lucky! I miss my dreams. I don't recall any since I started CPAP. Last night I took the advice of someone to experiment and go a couple days with out,
and guess what? Awesome dreams!! I really am hoping that eventually I'll start remembering dreams again, because to me they're an essential part of my psyche.
I can't imagine life without dreams...

Well the reason you remember your dreams is because you woke up due to an event where you stopped breathing. So you can have a short life with vivid dreams or you can have a long one and learn meditation and lucid dreaming.

Hi BlackSpinner, just to be clear to you and everyone, I of course realize that the dream issue is nowhere as important as getting the CPAP therapy (although I made a comment earlier that may have lead people to believe otherwise). And yes I need to get back in to meditation again. I felt much less scrambled years ago when it was a regular habit. And yeah, I did practice the techniques in the past to make it more likely to be come lucid.

And as an aside, I'm starting to remember dreams again two months in to CPAP therapy (although still tired). I'm hoping that's a good sign, meaning that I'm at least getting to REM sleep. Someone (was it you?) on this thread mentioned that remembering dreams is related to apnea events. Is this really true? That would mean that everyone has some degree of apnea. I always thought more that it was because REM is at the end of the sleep cycle, and people are just more likely to wake up then.

larry63 wrote: And as an aside, I'm starting to remember dreams again two months in to CPAP therapy (although still tired). I'm hoping that's a good sign, meaning that I'm at least getting to REM sleep. Someone (was it you?) on this thread mentioned that remembering dreams is related to apnea events. Is this really true? That would mean that everyone has some degree of apnea. I always thought more that it was because REM is at the end of the sleep cycle, and people are just more likely to wake up then.

Both the statements are true. Plus there are two kinds of dreams - REM which helps with memory retention and rough stuff of life and dreams during regular sleep which tends to be happy fluffy bunny stuff.