Anonymous wrote:

I'm relatively new to the world of xcap compared to you, but I understand what you're experiencing because I've had that very same feelings when I've taken off my mask - only in the morning after the alarm goes off and I need to get my butt out of bed.  I wonder if my ability to just breath normally at night has been forever compromised? Well, yes, since your soft tissues are collapsing in your throat - that is what happens in Apnea!  Sure feels like I have to really make an inordinate effort just to breath at all.  Obviously, this feeling goes away as soon as I get out of bed, so what exactly is happening?

I believe I've experienced a very real sense of "dependecy", if you will, to xpap. Without, I feel like I can't get breath. With, is like dope - so to speak.  I really do understand your adversion to being "hooked up" and feeling you can't breath without it. If you've not realized a major difference or feeling significantly better as I and many others have, I'd likely feel the same as you.

You've made an interesting observation of how you're being affected and it's totally legit and necessary to ask the questions.  I wish I could give you THE answers.

As some have eluded: Maybe trying newer/better, more flexable machines/masks might help?  Maybe a new sleep study is also in order? The wrong Dr./s can definatly scew your experience as well... you already know this stuff.

Wishing you good health

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From the land of ahhhzzzz...

suubplot wrote:

... Does anyone have any recomendations in Colorado (Denver metro) as to specialists?

Isn't Jewish National located in Denver or close by?? They are supposed to have one of the best pulmonology departments in the country and they also have neurologists in their sleep clinic.

Someone w/a very complicated sleep disorder and sleep breathing disorder has discussed his/her experience at Jewish National in great detail in the cpaptalk dot come apnea forum. If I remember correctly that person traveled all the way from California to Denver and found the trip MOST WORTHWHILE and has been doing MUCH better since being evaluated and treatement set by Jewish National.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Yup, just checked. National Jewish Hospital is in Denver. Their sleep disorders center URL is:

http://www.njc.org/disease-info/diseases/sleep/index.aspx

Their respiratory department has been ranked #1 in the nation by US News & World Report's annual ranking of the top 50 teaching hospitals in the USA.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I used NJC to get my sleep study, the guys there were really helpful.

Just curious. How do people know because of having sleep apnea they wouldn't have gotten high blood pressure or diabetes or a stroke anyway?? I think a lot has to do more with genetics than straight apnea. I also agree that this is a "scammy"  field. My limited experience so far has not been good. Money seems to be the driving force here not health. Sorry people but that's the way I feel.  

joey777 wrote:

Just curious. How do people know because of having sleep apnea they wouldn't have gotten high blood pressure or diabetes or a stroke anyway?? I think a lot has to do more with genetics than straight apnea. I also agree that this is a "scammy"  field. My limited experience so far has not been good. Money seems to be the driving force here not health. Sorry people but that's the way I feel.  

People have probably felt that way about any new medical condition, such as diabetes, hypertension, Parkinson's, etc.

What would be convincing evidence to you that the condition does exist and is not a scam?

I'm not saying that the condition does not exist but rather the "ill effects" of it may be wrong. Let's face it many people who have this condition are over weight. That in itself can cause stroke, diabetes and heart problems. Every other day you hear this is bad for you and that is bad for you just to hear later on no sorry we were wrong that is now good for you. I don't know what to believe anymore. Before Apnea was around there have been many people who snore their whole lives and lived to a ripe old age. Thomas Edison slept 2 hours a night  so did my grandfather and lived to an old age. I'm just saying...Makes you wonder. Also there is a lot of money to be made in this business. Just look at the price difference in sleep study costs and the price of a pill that costs a fraction to make and you and me spend 100 times what it's worth! Look at TV commercials today. Every other one is for some new pill or about some new disease. It's getting crazy!

Sleep apnea is real. It's effects are real. But the sleep business does attract scammers.  There are too many people desperite for a good nights sleep, who are willing to lay down the bucks to anyone who promisses them help.  Doctors need to be trained to spot sleep apnea in people, and encouraged to refer them to sleep studies with reputable labs.  Insurance companies need to have a formulary that pays for only accredited doctors and labs, and we need to be given a choice in the equiptment providers we use.  No choice means no competition, which leads to rotten service.  And that leads people to scammers, ready to take their money.  Virginia


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Resmed elite , 17, mirage quattro ff . 25 + years of untreated OSA

joey777 wrote:

How do people know because of having sleep apnea they wouldn't have gotten high blood pressure or diabetes or a stroke anyway??

Resarchers study groups of people. For example, researchers will study a group of overweight, middle-aged males who do NOT have sleep apnea. They will test each one for diabetes, a certain percentage will test positive for the disease. The researchers also study a group of males, who have similar ages & weights to the first grouop, but who do have sleep apnea.  A higher percentage of people with sleep apnea will have diabetes as compared to the similar group who do not have sleep apnea.

Researchers also put young healthy college students in a lab and try to mimic some of the conditions of disrupted sleep. After a few days, these students begin to exhibit characteristics of a pre-diabetic state.

After researchers from different universities and even different countries come up with similar results, well, then it looks like there is a strong connection between diabetes and sleep apnea.

Guest MJ wrote:

Resarchers study groups of people. For example, researchers will study a group of overweight, middle-aged males who do NOT have sleep apnea. They will test each one for diabetes, a certain percentage will test positive for the disease. The researchers also study a group of males, who have similar ages & weights to the first grouop, but who do have sleep apnea.  A higher percentage of people with sleep apnea will have diabetes as compared to the similar group who do not have sleep apnea.

Researchers also put young healthy college students in a lab and try to mimic some of the conditions of disrupted sleep. After a few days, these students begin to exhibit characteristics of a pre-diabetic state.

After researchers from different universities and even different countries come up with similar results, well, then it looks like there is a strong connection between diabetes and sleep apnea.

I guess I'm a doubting thomas just because I know someone else will do a study and come up with a totally different concussion. I also wonder if CPAP therapy is doing more harm than good in the long run to our lungs and do we  become depended on it. I hear people complain on this fourm about shortness of breath that they never had before. I'm not tring to tell anyone to stop their CPAP usage but it does give me pause.

As far as I am concerned I still can not use my machine because I still get up gasping for air on sleep inset with or without using it. Doctor said it was anxiety and prescribed Valium which did nothing. I really would like to be able to use it but the CPAP makes this condition worse. I'm going to try a sleeping pill without it and see if that helps. If it does than I will add the machine. I still wish my doctor would have given me more option concerning OSD instead of hooking me up to a machine. I also wish I would have found this fourm "BEFORE" I got my sleep study done. I might have gone a different route. (I guess I still can)

Ahhh, Joey, da King of da Nile. Keep researching and exploring. Educate yourself. Draw your own conclusions. Its your life and your health.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

joey777 wrote:

As far as I am concerned I still can not use my machine because I still get up gasping for air on sleep inset with or without using it. Doctor said it was anxiety and prescribed Valium which did nothing. I really would like to be able to use it but the CPAP makes this condition worse. I'm going to try a sleeping pill without it and see if that helps. If it does than I will add the machine. I still wish my doctor would have given me more option concerning OSD instead of hooking me up to a machine. I also wish I would have found this fourm "BEFORE" I got my sleep study done. I might have gone a different route. (I guess I still can)

Joey,

I am not sure what steps you have taken thus far. Consider getting a copy of the full sleep study report and posting it in the sleep studies section. A discussion / explanation of results would help anyone to better understand the specifics of their condition. Also, a thorough understanding of the condition and its severity help determine what are the best treatment options. It would be of interest to see of their are central apneas at sleep onset in your case.

Regarding sleeping pills, it is my understanding that there are various types. Some are for helping people fall asleep, others are for helping people to stay asleep all night and through the early morning hours. I think that Ambien is one that helps people to fall asleep.

Guest MJ

Thanks people for the advice. I did't know you could post your sleep study. I will have to do that. I am waiting for the full report. I do know that I have an 20.3 AHI. I have a very high leg movements of 51.2 an hour and snore pretty bad. Only 2 central apneas showed up in the study. My pressure is set to 8. I was taking Ambien at the time of the sleep study and did not get any sudden gasping of air at all. When I asked the doctor should I try some Ambien instead of Valium at home he said no it would make it worse?? I don't get that since it did not happen with Ambien on the study. I going to try it tonight anyway because last night on Valium I really almost died. At least it felt that way. I really don't believe it's anxiety. I am in a very relaxed point in my life. If he told me this 5 years ago maybe I could agree with him. I also have worked out most of my life. Weight lifting and run a bit. I have a very muscular frame and am not over weight and don't smoke and only have an occasional drink. I hate to take any kind of drug. The doctor ruled out heart problems. I hope this will pass soon. I have been getting less sleep now more than ever. I guess that's normal when you start thinking about sleeping.

joey777 wrote:

I was taking Ambien at the time of the sleep study and did not get any sudden gasping of air at all. When I asked the doctor should I try some Ambien instead of Valium at home he said no it would make it worse?? I don't get that since it did not happen with Ambien on the study. I going to try it tonight anyway because last night on Valium I really almost died. At least it felt that way.

The reason for the docs decision on this is still not clear to me. What type of doc are you seeing? A pulmonologist who is certified to practice sleep medicine?

The doc told you horsepuckies. Ambien was developed specifically for sleep, as was Lunesta and Rozarem. Valium is a benzodiazapine and was developed for other disorders than sleep but has sedating properties. Those sedatiing properties CAN affect your sleep evaluation and titration results. Ambien, Lunesta and Rozarem are much less likely to affect your studies.

Valium is often used for IV "conscious sedation" for colonoscopies for its amnesiac properties every bit as much as for its sedating properties. They can keep you awake enough to respond to their requests to roll over, etc. but you will have no memory of any pain you experience.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.