CPAPtalk.com

Wow! thanks Chunky, Wiguy Madalot, Sleepy, and Todzo (hope I didn't miss anyone) .....You are all wonderful and thoughtful people. I will try to register, but I have to figure it out. I have a Phillips Respronics system one and nasal pillows, I don't know the brand of the pillow thing. Chunky, thanks for calling me a fighter and not a crazy complainer!!
As for Wiguy, and whomever it was that said it took awhile for me to get to this weight, you are right. And Wiguy, you are young, do whatever it takes to take the weight off (short of unhealthy things) and don't put it off like I did. It is taking me forever to move the weight, but I will persevere, there has been no greater motivator thus far in my life than the cpap. I have always been a healthy eater, but recently have taken to smaller portions, and this has helped. I have also been active, (I ride my bike to work each day) (used to swim 5 days a week till my right arm became super sore but weight never came off) I walk every day. I have also started to take large doses of vitamin D. My regular doctor blood tested me and it was low. He recommended d, but never said how much. I went to a nutritionist who told me about D3. Since I have been taking it, I took off about 5 pounds with out really changing anything else. It is like a miracle, for years I have tried to take some weight off, to no avail. Even the cpap did nothing to make it budge. I know that more than a pound a week will probably come back, so I am going for slow and steady.

So, night before last was the sleep study torture when they blasted my lungs with the high pressure. The night before, I had the machine on 6, my ahi was zero. So last night I faithfully put the !@#$%$* thing on, again at 6 which is comfortable as I can get, and in the morning my AHI was 6! What gives? Did the blast reset things? When the tech said that she was instructed to "see how much I could take", doesn't that sound like lab rat sadistic torture? Who does the medical community think they are?
I forget which one of you said that you could get used to high pressure and not feel it. I am happy for you if that is your goal, but the reasoning escapes me. Could someone please explain why I would want to? If I was at zero with a 6 pressure, isn't that the goal? Why can't I understand this concept? I feel so stupid.

Anyhow...I hope you all have a wonderful afternoon. And Todzo, I will try my hardest to have fun, such good advice.

Reneee wrote:Wow! thanks Chunky, Wiguy Madalot, Sleepy, and Todzo (hope I didn't miss anyone) .....You are all wonderful and thoughtful people. I will try to register, but I have to figure it out. I have a Phillips Respronics system one and nasal pillows, I don't know the brand of the pillow thing. Chunky, thanks for calling me a fighter and not a crazy complainer!!
As for Wiguy, and whomever it was that said it took awhile for me to get to this weight, you are right. And Wiguy, you are young, do whatever it takes to take the weight off (short of unhealthy things) and don't put it off like I did. It is taking me forever to move the weight, but I will persevere, there has been no greater motivator thus far in my life than the cpap. I have always been a healthy eater, but recently have taken to smaller portions, and this has helped. I have also been active, (I ride my bike to work each day) (used to swim 5 days a week till my right arm became super sore but weight never came off) I walk every day. I have also started to take large doses of vitamin D. My regular doctor blood tested me and it was low. He recommended d, but never said how much. I went to a nutritionist who told me about D3. Since I have been taking it, I took off about 5 pounds with out really changing anything else. It is like a miracle, for years I have tried to take some weight off, to no avail. Even the cpap did nothing to make it budge. I know that more than a pound a week will probably come back, so I am going for slow and steady.

So, night before last was the sleep study torture when they blasted my lungs with the high pressure. The night before, I had the machine on 6, my ahi was zero. So last night I faithfully put the !@#$%$* thing on, again at 6 which is comfortable as I can get, and in the morning my AHI was 6! What gives? Did the blast reset things? When the tech said that she was instructed to "see how much I could take", doesn't that sound like lab rat sadistic torture? Who does the medical community think they are?
I forget which one of you said that you could get used to high pressure and not feel it. I am happy for you if that is your goal, but the reasoning escapes me. Could someone please explain why I would want to? If I was at zero with a 6 pressure, isn't that the goal? Why can't I understand this concept? I feel so stupid.

Anyhow...I hope you all have a wonderful afternoon. And Todzo, I will try my hardest to have fun, such good advice.

Hi again Reneee!

I have come to believe that the threshold at witch PAP pressure will prevent apneas is constantly in motion.

Forgive me but I think I will use some segments from other posts here (mine) to explain how I deal with the variability. From previous posts:

I really have come to like my simple strategy of using CPAP and finding a good "sweet spot" between the level of pressure to prevent AHI and the level of pressure which would induce unstable breathing. I believe I have learned that lifestyle changes facilitate the growth of that "sweet spot" - indeed currently 8 handles my AHI and unstable breathing would likely begin at 13. After reading about it I am much more afraid of unstable breathing than AHI so a machine which does not automatically raise pressure makes more sense to me. As well, I think it is easer for my body to respond to a constant rather than a moving object. I simply believe that with CPAP I have the greatest chance at the highest quality of sleep.

So now, if the pressure is too low you will have events. Not good. Indeed one of the not good things is that the Central Nervous System is ratcheted up moving the threshold for unstable breathing down.

If the pressure is high enough to cause breathing instability, well the extra air used may well irritate the airway passage resulting in Obstructive events (AHI), and/or may bring about periodic breathing, will likely cause arousals due to the extra breathing effort, may well turn into hypocapnic central apneas, and frankly will cause so much trouble that after reading a lot about them I am more scared of unstable breathing than I am of OSA. Very not good!

Any events you have will likely cause more and more events as the night progresses due to the ratcheting up of the central nervous system.

The very tricky thing is - the threshold where the OSA would be prevented by pressure may be or become past the point where unstable breathing occurs - if so - you really do need a better machine. So, if you can reduce your need for pressure and decrease your tendency toward unstable breathing - you can use CPAP which is the most likely to yield the best long term results for you (I have used strait CPAP over nine years).

Things I have found tend to reduce my tendency toward unstable breathing:

1. Reduce Stress!!!! This is definitely the top of the list, most important thing. Stress ratchets up the central nervous system (CNS) which is one of the "inputs" if you will alongside the "outputs" from the O2 and CO2 sensors - all feeding into the brains "calculator" whose output will drive breathing. If you can keep the CNS drive signal a bit lower you will breath less and have more stable breathing.
2. Aerobic Exercise and especially, if your doctor approves, a bit of Interval Training included. Breathing stability is all about breathing reflexes (they often call them chemoreflexes – reactions to changes in the amounts of oxygen and carbon dioxide in the blood). Place the body under load and you give them a workout. Place them under heavy load, even better. I have also noted that making close to my 10,000 steps a day at a less than aerobic pace helps with sleep in general. Also you might ask me about Pulse Oximeter Guided Breathing.
3. Staying away from violent media (TV, video games, etc...). These tend to stimulate the central nervous system like real stress (see #1).
4. Reduce simple carbs and stimulants near bed time.
5. Start CPAP use with quiet breathing always (well ok, I calm myself starting every night – it always wants to take off).

So hopefully doing the above will move the unstable breathing threshold up.

Things I have found move the Obstructive Apnea Prevention Pressure need down:

1. Reduce Stress!!! Stress tends to cause an inflammatory reaction in the body – inflamed airway tends to collapse easier.
2. Raise the head of your bed a couple of inches (I use cheap concrete bricks from a building supply store - <$5 for both). I know of at least one doctor who recommends this for pressure issues. It does seem to make things better in general I have noticed in my own data, and is known to help prevent GERD. I also kind of think that if there is more blood near the feet there is less blood filling the tissues in the airway passage so less pressure needed to push them back.
3. Eat anti-inflammatory foods. Less inflammation, less OSA.
4. Stay away from processed foods. I think just say no to GMOs. Stay away from preservatives. Take good care of your microbiome. I believe doing so will reduce inflammation so less OSA and less pressure needed to prevent OSA.
5. Take some cooking classes and start a long term relationship with a dietitian. Your body longs for good food prepared from scratch. Feed it well, it can better treat you well.

May we find increasingly better health!

Todzo

Reneee wrote: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.

Q: What's the most common medical term used to describe people who decide to treat sleep apnea with weight loss?

A: Dead.

Todzo wrote:
1. Reduce Stress!!!! This is definitely the top of the list, most important thing. Stress ratchets up the central nervous system (CNS) which is one of the "inputs" if you will alongside the "outputs" from the O2 and CO2 sensors - all feeding into the brains "calculator" whose output will drive breathing. If you can keep the CNS drive signal a bit lower you will breath less and have more stable breathing.
....

Hogwash!!!

This advice is as irresponsible as suggesting a diabetic go to his local faith healer. It may make him feel better, but if it causes him to not pay attention to his insulin and blood checks, it's going to cause him harm.

Reneee wrote: The night before, I had the machine on 6, my ahi was zero. So last night I faithfully put the !@#$%$* thing on, again at 6 which is comfortable as I can get, and in the morning my AHI was 6! What gives? Did the blast reset things?

Hey Reneee, you are not stupid. There's a lot about this weird therapy that doesn't make a lot of sense. But I don't think the night spent in the horror chamber caused you to have an AHI of 6 the night after. You'll find your AHI varies, even after you've optimized your settings. Were some of those events clear airway events? Those can drive the AHI up but they're not necessarily true apnea events. I don't know if stress plays a significant role in obstructive events, but I know when I'm stressed and I have a restless uncomfortable night I get more clear airway flags in my data at the points where I transition into or out of sleep.

I don't know why some of our forum members need to chide others, especially new shellshocked cpap users, for holding onto the hope that losing weight will eliminate their apnea. (Secretly don't we all wish there was something we could do to make our sleep apnea go away?!) You'll find out for sure when you get there, one way or the other, and in the meantime you're getting healthier. You're doing everything right. Some people take to cpap quickly and easily, others have a much harder time. We're all different. Try to just look for the feedback that works for you.

You're not alone in your experience. I'm glad others have written in to say that they can relate to how you're feeling. I hope it helps. I commend you for being totally honest about how you feel, and I also commend you for trying to make cpap work for you, and for coming to this forum for help. I think that's plenty for now. Keep us posted how you're doing.

kaiasgram wrote:

Reneee wrote: The night before, I had the machine on 6, my ahi was zero. So last night I faithfully put the !@#$%$* thing on, again at 6 which is comfortable as I can get, and in the morning my AHI was 6! What gives? Did the blast reset things?

Hey Reneee, you are not stupid. There's a lot about this weird therapy that doesn't make a lot of sense. But I don't think the night spent in the horror chamber caused you to have an AHI of 6 the night after. You'll find your AHI varies, even after you've optimized your settings. Were some of those events clear airway events? Those can drive the AHI up but they're not necessarily true apnea events. I don't know if stress plays a significant role in obstructive events, but I know when I'm stressed and I have a restless uncomfortable night I get more clear airway flags in my data at the points where I transition into or out of sleep.

I don't know why some of our forum members need to chide others, especially new shellshocked cpap users, for holding onto the hope that losing weight will eliminate their apnea. (Secretly don't we all wish there was something we could do to make our sleep apnea go away?!) You'll find out for sure when you get there, one way or the other, and in the meantime you're getting healthier. You're doing everything right. Some people take to cpap quickly and easily, others have a much harder time. We're all different. Try to just look for the feedback that works for you.

You're not alone in your experience. I'm glad others have written in to say that they can relate to how you're feeling. I hope it helps. I commend you for being totally honest about how you feel, and I also commend you for trying to make cpap work for you, and for coming to this forum for help. I think that's plenty for now. Keep us posted how you're doing.

Hi kaiasgram!

When I was diagnosed with Obstructive Sleep Apnea (OSA) it was not first by a doctor, it was by a fellow shelter bunk mate. It was severe with extreme (55%) oxygen desaturation. To me the brain damage was obvious (I had lost a lot of capability) for indeed two years before shelter my 25 years successful carrier in electronics ended.

But OSA is also well known for social damage. What I think I have noticed is that the brain fatigues easily. My guess is that the white matter damage makes it hard for the various portions of the brain to communicate. Kind of like a ship where the individual parts of the crew loose communication due to the volume dropping to critically low levels as the day goes on. For example, I believe I have caught myself loosing the ability to be emotionally aware of another persons feelings both in terms of reading faces and listening to voices or reading words.

As well, it seems the cortex in general has trouble as the day wears on communicating with the limbic system. You do tend to become a bit paranoid and grumpy.

You help out a lot here, so much more than I. And your background is such that I think you well understand what I just wrote and how it applies to those who chide.

To help us even more please do a PubMed search on “sleep apnea executive function”.

Thanks!

Todzo

Todzo wrote: To help us even more please do a PubMed search on “sleep apnea executive function”.
Thanks!
Todzo

Hi Todzo, I believe I do follow your message. The only part I'm not sure about is why you asked me to do the PubMed search to help. Can you elaborate? Feel free to pm if you prefer.

Thanks!

kaiasgram wrote:

Todzo wrote: To help us even more please do a PubMed search on “sleep apnea executive function”.
Thanks!
Todzo

Hi Todzo, I believe I do follow your message. The only part I'm not sure about is why you asked me to do the PubMed search to help. Can you elaborate? Feel free to pm if you prefer.

Thanks!

Hi again kaiasgram!

Perhaps I am projecting my technical ways onto "what might work for you". I am kinda hopeing that you can help us be better "socially healed". To do what you wanted to do here but with a great deal of understanding.

For example, I know I tend to depersonalize the people here so I make myself never use "OP" and go back and find the person's handle and use that (or better thier name if provided in the public post).

It may simply be a silly idea from a tired brain.

I also feel you may find it interesting.

Have a great week and thanks for your good efforts!

Todzo

Hello!
Thanks for all of your feed back, even the negative, which I take with a grain of salt. Archangel, are you the evil angel or the good angel? Just kidding, I know you mean well!! ( I know that I have whined, moaned, groaned screamed, bitched, moaned, griped, but it was good for me. Thanks for hearing me!
Kaiasgram, thanks for all the positive encouragement, this diagnosis and treatment I almost sometimes think is some sort of transformation to what I don't know....But, I will say a friendly word is always great. Todzo, you are not off the mark at all with all of your input. I too believe in the most natural ways of dealing with problems. I so believe in relaxation, and in a great cup of tea. You also are not far off the social interactions. You are fine. I hope I did not miss anyone else.
Lets face it people. This is not easy. I say you cannot compare it to any other affliction. You can have all sorts of other problems that do not require you to put on a mask and depend on electricity in order to breathe. It is it's own little ego/age/weight/spiritual/mental/pride little island. Archangel, you do not affect me with your drama of death. I have already suffered the ultimate loss, and it is not your own life. It is the life of your child. When my only son passed it was on a ventilator,(a year and a half ago) which is reminiscent of our lovely breathing machine, (this my friend does hurt) so I do feel a bit of a resentment in my heart every time I put it on. It is for this the whole death thing does not phase me. Other than the responsibility to the others that I love. I started out on Provent, which actually worked pretty well, but I couldn't get the numbers low enough, and it was itchy. Maybe it will work if I get the weight off!! I know Archangel, I have a hard time with the machine/hose thing. (Ugly, cumbersome, noisy, cold, rubber, I can't even stand to use the ear phones on Ipods) I think that it was chunky frog that said that some people think that some people think that the apnea was a way to reduce the population of old people. Funny, I had wondered the same thing. I actually do not wish to end up in a rest home, another reason for compliance. And I do have other kids, and grand kids and a wonderful husband. I must be responsible to the people that need me. Even though I'd love to see my son in my dreams, I have not had any yet. I am looking forward to this. Another reason for compliance....the hope of dreams.
You all are fantastic people, as Nan said. Have a great Sunday.

Renee, your story is a perfect example of what 49'er means when she says that we don't know the personal life stories of the people to whom we give advice here, and why we ought to be careful and gentle with each other. I am so sorry for your loss and of course it would be very difficult to find yourself facing a "breathing machine" for possibly the rest of your life. I commend you even more for your courage in seeking to overcome such a painful association with your son's passing. Glad you're with us, you're helping us as much as we hope to help you.

Reneee, to lose your precious child so young, it breaks my heart.
Small wonder the mask reminds you of his loss,
instead of the last few priceless hours it may have allowed him to be with you.
Perhaps a time may come when you can treat the first few moments with your mask on
as a small opportunity to connect with his memory, to remember love and joy, though gone too soon.

Reneee wrote:Hello!
Thanks for all of your feed back, even the negative, which I take with a grain of salt. Archangel, are you the evil angel or the good angel? Just kidding, I know you mean well!! ( I know that I have whined, moaned, groaned screamed, bitched, moaned, griped, but it was good for me. Thanks for hearing me!

Archangel, you do not affect me with your drama of death. I have already suffered the ultimate loss, and it is not your own life. It is the life of your child.

We try to help with the tricks that may help make it work. There's always some residual level of pain, effort, fear, or other bad emotions once you've done all the adjustment to the therapy. At some point, you just have to put up with it and keep trying to make it better when you can.

Re: Drama of death

Try it this way:

Q: What do kids say about their mom who decided to treat sleep apnea with weight loss?

A: Gee, I miss her.

I suspect you're already thinking this, and that's why you're trying so hard. Give it some thought when you're having a hard time adjusting to the machine. Imagine your kids watching you getting those last breaths on a real ventilator if you don't do the CPAP.

BTW, good luck on the weight loss. I highly encourage weight lost while you're doing CPAP. Some people say CPAP makes weight loss easier.

Reneee,

I am so sorry for your son's loss and wish you all the luck in the world in adjusting to cpap treatment.

49er

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.

Ask for copies of your sleep studies. How many have you had? If you can post those (without your name and personal info), we can figure out what they are trying to do. It does sound like they originally determined that cpap would be good for you, and since you are having trouble, they want to see what is going on. Most people do not have success with dental devices. Success is defined as a 50% reduction in apneas. Since yours was 85, that would still leave you in the severe category. Weight loss works for some people, but often, weight gain is caused by the sleep apnea, so the apnea was there before the weight. No way to know which way it is for you until you lose the weight. Just don't give up if that doesn't work out.

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.

I suspect he wasn't willing to consider the data since it doesn't cover full nights. Our sleep apnea changes from night to night and goes up and down during the night. It is also typically worse later in the night as we tend to have more REM sleep at the end of the night, and most people typically have more apneas during REM sleep. So, if you are taking the mask off after 4 hours many of the nights, then the ahi does not reflect your full night.

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.

It is also difficult to tell, but is your prescription set at 6 all night? Is that what the sleep study recommended? Or is it supposed to be higher? It sounds like they were trying to figure out what you are struggling with at night (mask fit, pressure, leaks, etc) and trying to see what level of pressure you can tolerate. The tech seemed please that you were able to sleep at 13, and thus must have slept at the levels between 6 and 13. I can't imagine why she was testing that high unless there was reason to think you needed it that high, such as your first sleep study. Or if you were still have apneas that night at lower pressures. My machine is set to a range of 11-17. When I am sleeping on my side, 11-13 is enough to keep my ahi low. But when I sleep on my back, I need more pressure to control my apnea. Most nights, my ahi, is below 2. I do have some higher nights. I have had a couple nights that were zero, but they were both below 4 hours. I have never had a zero from a full night.

Another reason to get a copy of your sleep study is that it will show how much you actually slept. It is often longer than we thought. Many people didn't think they slept that well, but actually did much better than they thought. And you can also see if your apneas are worse during certain sleeping positions and levels of sleep.

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.

My parents are 74 and 72. My dad snores like crazy, but does not have sleep apnea. My mom doesn't snore at all. She simply looks dead. Without her cpap machine, she stops breathing for over a minute at a time. She was diagnosed with sleep apnea over 20 years ago. My grandfather died in his 40s from a heart attack. I have sleep apnea, and I have high blood pressure, and I snore like crazy. I was shocked at how much better I felt the first time I used a cpap machine. It wasn't as magical after that as the initial shock tends to be short lived. But I sure learned the difference between crappy sleep and good sleep. Most nights are okay to good. I have some really bad nights too, but also some really awesome nights.

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

The comment seems odd. But your ahi of 85 is severe. It would be interesting to see your sleep study and what your oxygen desats are. Sleep apnea is often referred to as the death of a thousand cuts. One night won't hurt you, but hundreds of nights like that in a row do some serious damage. They may take awhile to show up in test results, but the damage is there and getting worse. You have an opportunity to heal the damage and prevent new damage.


Please stick around, add your equipment to the list, tell us what problems you are having, and will do our best to help you adjust. If you can post some sleep study info and maybe some graphs from your machine, that will really help people figure out what is going on with your sleep apnea and what the doctor is trying to accomplish.

kaiasgram wrote:Renee, your story is a perfect example of what 49'er means when she says that we don't know the personal life stories of the people to whom we give advice here, and why we ought to be careful and gentle with each other. I am so sorry for your loss and of course it would be very difficult to find yourself facing a "breathing machine" for possibly the rest of your life. I commend you even more for your courage in seeking to overcome such a painful association with your son's passing. Glad you're with us, you're helping us as much as we hope to help you.

Very nicely said, kaiasgram.

Renee, my deepest sympathies for your loss. And I agree with kaiasgram in everything she said.

We will all chip in and help you however we can.