sleep study torture

[Reneee]

Ok, I am doing all of this kicking and screaming. I have been using cpap for about 3 months. I have been trying every which way to get rid of it. I have lost about 12 lbs, hard won pounds. I had heard that there was an mouth piece from my respiratory therapist. I was referred to a specialist for whom I took a day off work for and he did kept putting me off about this mouth piece, and insisted I do an overnight sleep study. He said he wanted to "play with the pressure" I have been faithfully using my cpap, despite no real relief, because of this forums encouragement for from 4 - 7 hrs per night. I have the AHI info which I took to the Dr. and he did not want to see it. He wanted me to do an overnight sleep study, even though I could give him the readings of a low ahi, in fact, it was zero at pressure # 6. Fast forward to last night. I had to drive an hour to the location. The tech was a nice young lady. I was hooked up to about 50 sensors, glue in my hair, oximeter on my finger, eeg on chest and stomach, and when I was sound asleep, she jacked the pressure up to 13. I woke up not really knowing the pressure thinking that my mask was loose or something, and my lips kept vibrating. Then I got the urge to use the bathroom so I jumped out of bed and the tech came in and said you were sleeping at 13!! I said no I was not, and she insisted that I was. I am so angry that I was at a zero at 6, and my Dr. felt that it was cool to go ahead and torture me like a lab rat to in her words"see what pressure I could handle" I was incensed, and asked to lay down for a while longer because I was so nauseated and angry and sleep deprived. I had already been awoken about 4 additional times. By this time it was 3:30 am, and I said "I have to go". She was ok with that and had me fill out some paperwork and unhooked me and sent me home with glue in my hair, and frustration in my heart. All I really tried to do was to tell my Dr. that I wanted to be considered for this mouth piece because I find cpap so uncomfortable, but I do use it in order to stop snoring. I don't think I'm going to die, my father lived to 88 and my mom is 92, they both snored. But, I am trying to cooperate, and I don't get the consideration from the dr. that I feel that I should be afforded. The Tech at the sleep lab said that my insurance company asks them to blast all of their patients. Would someone please tell me that if you are already at zero at 6, why would they more than double it ??? Is the Dr. a woman hater? Wouldn't you think that they would explain to me what it is they are trying to do? Get a negative number?
One thing that the tech told me that was interesting was that the oximeter reading from my original home study may not have been accurate. They said my ahi was 85. They acted like I was at death's door, and I had very few of the heinous symptoms other than snoring. I always felt refreshed when I woke up, I have not felt refreshed since I started cpap. I would so appreciate any information anyone has. Thanks Renee

[Todzo]

Ok, I am doing all of this kicking and screaming. I have been using cpap for about 3 months. I have been trying every which way to get rid of it. I have lost about 12 lbs, hard won pounds. I had heard that there was an mouth piece from my respiratory therapist. I was referred to a specialist for whom I took a day off work for and he did kept putting me off about this mouth piece, and insisted I do an overnight sleep study. He said he wanted to "play with the pressure" I have been faithfully using my cpap, despite no real relief, because of this forums encouragement for from 4 - 7 hrs per night. I have the AHI info which I took to the Dr. and he did not want to see it. He wanted me to do an overnight sleep study, even though I could give him the readings of a low ahi, in fact, it was zero at pressure # 6. Fast forward to last night. I had to drive an hour to the location. The tech was a nice young lady. I was hooked up to about 50 sensors, glue in my hair, oximeter on my finger, eeg on chest and stomach, and when I was sound asleep, she jacked the pressure up to 13. I woke up not really knowing the pressure thinking that my mask was loose or something, and my lips kept vibrating. Then I got the urge to use the bathroom so I jumped out of bed and the tech came in and said you were sleeping at 13!! I said no I was not, and she insisted that I was. I am so angry that I was at a zero at 6, and my Dr. felt that it was cool to go ahead and torture me like a lab rat to in her words"see what pressure I could handle" I was incensed, and asked to lay down for a while longer because I was so nauseated and angry and sleep deprived. I had already been awoken about 4 additional times. By this time it was 3:30 am, and I said "I have to go". She was ok with that and had me fill out some paperwork and unhooked me and sent me home with glue in my hair, and frustration in my heart. All I really tried to do was to tell my Dr. that I wanted to be considered for this mouth piece because I find cpap so uncomfortable, but I do use it in order to stop snoring. I don't think I'm going to die, my father lived to 88 and my mom is 92, they both snored. But, I am trying to cooperate, and I don't get the consideration from the dr. that I feel that I should be afforded. The Tech at the sleep lab said that my insurance company asks them to blast all of their patients. Would someone please tell me that if you are already at zero at 6, why would they more than double it ??? Is the Dr. a woman hater? Wouldn't you think that they would explain to me what it is they are trying to do? Get a negative number?
One thing that the tech told me that was interesting was that the oximeter reading from my original home study may not have been accurate. They said my ahi was 85. They acted like I was at death's door, and I had very few of the heinous symptoms other than snoring. I always felt refreshed when I woke up, I have not felt refreshed since I started cpap. I would so appreciate any information anyone has. Thanks Renee

Hi Renee!

Step one - get a complete copy of all sleep studies and all other info regarding your current care.

Step two - find another well reputed doctor far away.

Step three - consider what to do for the good of all.

Something is a bit strange here.

My you find the best way!!

Todzo

[LSAT]

Ok, I am doing all of this kicking and screaming. I have been using cpap for about 3 months. I have been trying every which way to get rid of it. I have lost about 12 lbs, hard won pounds. I had heard that there was an mouth piece from my respiratory therapist. I was referred to a specialist for whom I took a day off work for and he did kept putting me off about this mouth piece, and insisted I do an overnight sleep study. He said he wanted to "play with the pressure" I have been faithfully using my cpap, despite no real relief, because of this forums encouragement for from 4 - 7 hrs per night. I have the AHI info which I took to the Dr. and he did not want to see it. He wanted me to do an overnight sleep study, even though I could give him the readings of a low ahi, in fact, it was zero at pressure # 6. Fast forward to last night. I had to drive an hour to the location. The tech was a nice young lady. I was hooked up to about 50 sensors, glue in my hair, oximeter on my finger, eeg on chest and stomach, and when I was sound asleep, she jacked the pressure up to 13. I woke up not really knowing the pressure thinking that my mask was loose or something, and my lips kept vibrating. Then I got the urge to use the bathroom so I jumped out of bed and the tech came in and said you were sleeping at 13!! I said no I was not, and she insisted that I was. I am so angry that I was at a zero at 6, and my Dr. felt that it was cool to go ahead and torture me like a lab rat to in her words"see what pressure I could handle" I was incensed, and asked to lay down for a while longer because I was so nauseated and angry and sleep deprived. I had already been awoken about 4 additional times. By this time it was 3:30 am, and I said "I have to go". She was ok with that and had me fill out some paperwork and unhooked me and sent me home with glue in my hair, and frustration in my heart. All I really tried to do was to tell my Dr. that I wanted to be considered for this mouth piece because I find cpap so uncomfortable, but I do use it in order to stop snoring. I don't think I'm going to die, my father lived to 88 and my mom is 92, they both snored. But, I am trying to cooperate, and I don't get the consideration from the dr. that I feel that I should be afforded. The Tech at the sleep lab said that my insurance company asks them to blast all of their patients. Would someone please tell me that if you are already at zero at 6, why would they more than double it ??? Is the Dr. a woman hater? Wouldn't you think that they would explain to me what it is they are trying to do? Get a negative number?
One thing that the tech told me that was interesting was that the oximeter reading from my original home study may not have been accurate. They said my ahi was 85. They acted like I was at death's door, and I had very few of the heinous symptoms other than snoring. I always felt refreshed when I woke up, I have not felt refreshed since I started cpap. I would so appreciate any information anyone has. Thanks Renee

I think the problem lies in the first sentence...You are trying every which way to get rid of the CPAP. Your mind is made up that you are going to find something wrong with everything. I think everyone that has died from OSA didn't think they would die from it. You are not going through anything that most of us have gone through...the difference is that we have accepted it.

[Xney]

I think you may want a different doctor and sleep lab, but many doctors don't trust the data from home machines much. (And sometimes there's good reasons for their skepticism)

In a sleep lab, they can get a lot more and better data, assuming the techs are doing a good job, too.

However, they shouldn't simply discard your home data outright, and I'm not sure what the tech was doing. You need a copy of the whole sleep lab night, as somebody mentioned.

[Reneee]

Thank you so much to all of you who have responded. All great comments and advice. I understand the acceptance piece, but I don't think I can get there until I have lost another 20 pounds and still have it. It just takes me forever. I don't understand how this problem can be so prevalent other than so many people are so much larger than they used to be. I know that not all sufferers are large, but I do know that if I still have it when I am thinner, I too will be a believer and an acceptor.

I just got through reading the thread about the central apneas being started by high pressure. Is this not a side effect of this Rx? Our bodies are supposed to work? Unless some other thing in our life is a side effect which caused the side effect of the apnea in the first place.

To all people who love this treatment, please forgive me. I am happy for you that you have found peace with it, and it helps you.

I know that I am trying to find fault with it, but to me this is another way of illustrating that the cpap is an unnatural thing, and that the natural way is best (weight loss, lifestyle changes) and it can be used as a tool to reach your other health goals, not a life sentence.

I also think that the Dr. does not really listen, although he is a neurologist and a smart guy. I feel like that I gave him tons of info and he just sort of patted me on the head and sent me to be a lab rat. If he had been more open with me and told me what he was trying to accomplish, then I would have had an easier time understanding what was going on. Thanks again, Reneee

[Pugsy]

I just got through reading the thread about the central apneas being started by high pressure. Is this not a side effect of this Rx?

Centrals "can" be a side effect for some people who start this therapy but it actually only happens to a very small percentage of people who start cpap therapy and it can happen with any pressure and doesn't limit itself to "high" pressures.

[nanwilson]

Renee
Welcome to the best darn forum on the internet. I am sorry that you did not find us 3 months ago when you first started this journey, you would have been in such a better place by now with a little help and encouragement. I have to ask ..do you wear glasses, have false teeth, wear a hearing aid , ever broken a leg or arm and had to wear a cast..........I'm asking because there is no difference with using cpap. Glasses help you see, false teeth help you eat, a hearing aid helps you hear and a cast helps your bones heal........and best of all a cpap keeps you from have a stroke or heart attack .
I am very doubtful that there is one person here that loved the cpap mask and gear when they started out, but they came to realize over time that "hey, I really do have more energy, no more headaches, and I really feel like living now". Yup we all hated it but soon found out that it does work...if this is what we have to do to keep from dying, then this is what we have to do. I could care less who knows I use a cpap machine....as a matter of fact if one person finds out I have osa and am conquering it, and it makes them go see their doctor and get tested, then I have done my job for the day.
Prior to going on the hose I didn't think that I would live long enough to see my gorgeous grandaughter graduate from high school and go on to university..........ha ha ..she will graduate with honors this June and I WILL be there to see her do it. So you see this machine is a benefit to us and should not be something we are embarrassed about or keep hidden. I will repeat and yell loudly...ITS A BENEFIT TO OUR LIVES...keep using it and believe that it will help you in the long run...remember the glasses, false teeth, hearing aid and casts...NO DIFFERENCE!!!!!!!!
Start believing Renee and you will get the benefit too....and WELCOME to the land of hoseheads.
Cheers
Nan

[Reneee]

Hi Nan,
you are so sweet to reply. I really love all the people here, but I really have a strong negative reaction to calling myself a hose head. Somehow I don't find it funny, although I don't mind if you and others do. I guess it is not for everyone. I do wear glasses to see, have had lots of dental work, have not broken bones yet, etc. I do hear your comparisons, but still cannot grasp the concept of having to be hooked to a machine and electricity, and it is uncomfortable, and heinously ugly. I know that my expressions are not positive, it is just how I feel. I regret how honest I have to be, as I don't wish to be so negative, I am just having a harder time accepting it. I am happy for you and the others who wish to be known as hose heads. Maybe someday i will think it is cute, but not yet.

Maybe, I just have not accepted that because I have lived to age 56 and have not had many of the issues mentioned, I still have a hard time accepting what I feel is fear based compliance. I have low blood pressure, no sign of diabetes, normal heart thus far, no cancer in my family, no sign of crazy driving, could stay awake all day....I did have morning head aches and snored a great deal, and agreed to be tested in order to stay sleeping with my really great husband. I have lost some weight, and will continue in the hopes of not using the machine, as it appears that is the only thing in my control right now. Even that is a struggle, but I have had some success lately. I know that in reading here that I may lose another 30 pounds and still need it, and then I will be a believer for sure. I think that just logically, I have a hard time making sense of it. Maybe I am just stubborn, or stupid.

Interestingly enough, about 6 weeks ago my husband and I spent the night at the ocean, I did not bring the humidifier, and in the night the mask got super cold, and I got really uncomfortable. I threw it off and I think I slept another 5 hrs with nothing. My husband said I did not snore at all. I have seen others talk about different reactions to being at the ocean. Thanks again Nan. Please don't think I don't appreciate it. It just takes me a long time to believe. It also reminds me of a ventilator, and I had a terrible experience a year and a half ago with a close family member who passed after we removed him.

[chunkyfrog]

We are all traveling through space, on this space ship called Earth.
We are all imperfect; some of us have lost the ability to sleep and breathe efficiently at the same time.
(Some feel this is a part of our design, to prevent an ever-increasing population of annoying old people.)
I prefer to believe that we have merely drawn the biological short straw--
--and the long ones were passed out at the captain's table the night before.
This is not fair; and I have chosen to FIGHT this unfairness. Are you in?
You sound like a fighter. Please register, filling in your equipment.
It's going to be a heck of a ride!

[wiguy]

Hi renee!

I am a new user to CPAP. Lastnight was my first night. I also was looking for every reason to not use this thing, or finding alternative medicine, such as removing tissue, to the implants, to the mandibular operation. I decided that I need to give this cpap a try. I sucked up my pride and reschedule my appointment and acquired my equipment yesterday. Lastnight was my first night with it. I was not sure what to expect. As of now sitting here.. I do not feel any different. I will give the machine the benefit of the doubt right now and give it a week and see how I feel afterwards. My wife said it was a quiet night for her! LOL When I was in my consultation yesterday...she didnt ask what mask I prefered.. I flat out asked for for the swift FX mask and they had it. I am suprised how decent it feels. I was shooting for minimally invasive. My mother has apnea.. and I am sure my father does too but he isnt treated. My mother does not use hers. I lead a very active lifestyle, I like to work out, have an active job and have two young girls. I am 30. I took notice to your points of your vital stats... I too, have no diabetes, no high BP and normally do not feel tired. Sometimes, but not alot. I went in for a sleep study sans CPAP for diagnosing my issue. I may be a little overweight, but I am healthy and feel generally good. I too am working on droppign some pounds. In hindsight though, I dont look at it as not having the other symptoms anymore such as the high BP, and being sleepy... I look at it as I am preventing what could possibly happen to me. I do not want that. I have no other health issues except an milkd case of anxiety. Hopefully this treatment can get me off my pills. So I have been very healthy and would love to keep it that way.

Do not think I am picking at you.. this is just me sharing as a new user. Yes, some people do reject it. It is often about finding what works best for one hough first inorder for it to work properly. I truly hope you find something that works for you! Believe me...every single day since I have been diagnosed, I have been researching online about machines, maskes, different treatments and the such. I am goign to give this a fair chance though with an open mind. If my brain says reject it.. thats what I am going to do, but my mind is open right now. You posted some good stuff, and I hope you find an option that works for you..

Lastly, there is nothing wrong with you being brutally honest...its admirable. It is acceptable though as you are being respectful with your opinion.




OH... and a shoutout to my fellow cheesehead LSAT I see posting above me!

[Madalot]

This may or may not be of any help, but I'll give it a shot.

I woke up last night, freaking out thinking I had fallen asleep unhooked. I had to wake up, listen for my equipment and feel my face to make sure my mask was on.

It was.

And my MINIMUM starting pressure is 15, with spikes up to 23.

If it didn't happen to me, I wouldn't believe that you can actually sleep with this crap and get so used to it that you don't know it's there.

But you can. Takes time, patience and EXCELLENT help to get there.

[wiguy]

This may or may not be of any help, but I'll give it a shot.

I woke up last night, freaking out thinking I had fallen asleep unhooked. I had to wake up, listen for my equipment and feel my face to make sure my mask was on.

It was.

And my MINIMUM starting pressure is 15, with spikes up to 23.

If it didn't happen to me, I wouldn't believe that you can actually sleep with this crap and get so used to it that you don't know it's there.

But you can. Takes time, patience and EXCELLENT help to get there.

You are totally correct! I could not believe how quiet my machine is!! If I didnt feel the air venting from my mask, I would never know its on. I am a believer as well that I wouldn't have known unless it happened to me! Considering my mother says hers is noisy.

[Madalot]

This may or may not be of any help, but I'll give it a shot.

I woke up last night, freaking out thinking I had fallen asleep unhooked. I had to wake up, listen for my equipment and feel my face to make sure my mask was on.

It was.

And my MINIMUM starting pressure is 15, with spikes up to 23.

If it didn't happen to me, I wouldn't believe that you can actually sleep with this crap and get so used to it that you don't know it's there.

But you can. Takes time, patience and EXCELLENT help to get there.

You are totally correct! I could not believe how quiet my machine is!! If I didnt feel the air venting from my mask, I would never know its on. I am a believer as well that I wouldn't have known unless it happened to me! Considering my mother says hers is noisy.

Oh, my equipment is terribly noisy. Terribly (I have a Trilogy Ventilator & an oxygen concentrator). I simply didn't feel the mask on my face.

[SleepyToo2]

Ok, I am doing all of this kicking and screaming. I have been using cpap for about 3 months. I have been trying every which way to get rid of it. I have lost about 12 lbs, hard won pounds

Hi Reneee. You have gotten some good advice so far, but I just wanted to point out that while the weight loss is a wonderful thing to do, it may not allow you to get rid of the CPAP as quickly as you like. Excess weight is influenced by so many things, including anatomy, genes, environment, hormone levels, availability of food, sleep, stress, exercise, medications (including alcohol), etc, etc. Sleep apnea is influenced by many things, including anatomy, genes, sleeping environment, probably hormone levels, eating habits (late at night=not a good thing), stress, allergies, exercise, medications (including alcohol), etc, etc. As you can see, there is much overlap. Whether "fixing" one will fix the condition you are trying to fix is going to be uncertain at best. While I would love to get rid of my CPAP, I have been struggling with the diet and exercise part more than I have struggled with finding the right mask and pressure. My decision was to accept the CPAP because of the indications in the research that it really would improve my life. I am just now realizing that I need to get to work on some of the other factors that I can work on, while continuing the CPAP. Like exercise.

I can't tell you what will work for you. However, it probably took you years to get into the "condition" that you are in: reversing that, if it is even possible, could take a long time. If a doc told you that you needed to take medications for the rest of your life, would you be more inclined to do that? How about 9-10 medications, some several times, each day for the rest of your life? Many people have to do that. I don't, so I consider myself very fortunate. CPAP is a minor inconvenience compared with the cost and side effects of all those medications which are only treating the symptoms, not the cause.

[Todzo]

Thank you so much to all of you who have responded. All great comments and advice. I understand the acceptance piece, but I don't think I can get there until I have lost another 20 pounds and still have it. It just takes me forever. I don't understand how this problem can be so prevalent other than so many people are so much larger than they used to be. I know that not all sufferers are large, but I do know that if I still have it when I am thinner, I too will be a believer and an acceptor.

I just got through reading the thread about the central apneas being started by high pressure. Is this not a side effect of this Rx? Our bodies are supposed to work? Unless some other thing in our life is a side effect which caused the side effect of the apnea in the first place.

To all people who love this treatment, please forgive me. I am happy for you that you have found peace with it, and it helps you.

I know that I am trying to find fault with it, but to me this is another way of illustrating that the cpap is an unnatural thing, and that the natural way is best (weight loss, lifestyle changes) and it can be used as a tool to reach your other health goals, not a life sentence.

I also think that the Dr. does not really listen, although he is a neurologist and a smart guy. I feel like that I gave him tons of info and he just sort of patted me on the head and sent me to be a lab rat. If he had been more open with me and told me what he was trying to accomplish, then I would have had an easier time understanding what was going on. Thanks again, Reneee

Hi Reneee!

One thing the current system does badly is respond to better health.

In my case learning to breath better and less stress seems to have enabled the lifestyle changes I have made such that I lost weight. But that created a problem with my CPAP therapy as I developed unstable breathing using CPAP at the proscribed pressure. When I finally reduced the pressure I found that I needed only about fifty percent of the pressure proscribed.

My pressure had been bumped up about eight percent only a year ago. My need for PAP pressure moved that fast!!

I was unable to connect with Medical treatment in my new small city so I ended up doing this myself. I am very experienced using CPAP data (you need to be experienced). I think that standard practice would have yielded some other crazy pressure. Being in lab and looking at only one night – well – in home and looking at over sixty days of data I feel more confident about the results. As well, the results since are good (AHI=0.28).

My concern here is that you will make changes which effect how your CPAP therapy works for you. For you feedback (review of your CPAP data several times a week) is absolutely essential.

Many have lost a lot of weight quick. At least 95% put it back on.

I believe sustainable weight loss happens at no more than one pound a week. I believe this can only be facilitated by a slow constant movement in the direction of eating better food and moving the body far each day (e.g. I am up to 75% of 10,000 steps a day during the summer months). Earn a Chef Hat and begin training for a Marathon (or if you are like my daughter, a "Tough Mudder" event).

And for goodness sakes, have a lot of fun!!

Todzo