Day 6 Part II: CPAP, Anger, Torture & Waterboarding

Hi Charles,
Your post was quite a rant, it should have given you a bit of relief. I read it and your subsequent posts a couple of times. Remembering my initial experience of sleep deprivation, part of your anger and frustration is a consequence of sleep deprivation.

I got advice from this forum that helped me a lot. If you awaken in the night and feel you can't stand it one more minute, take it off, but be sure to put it on the next night. I recall the relief I felt about 2:30 am the next morning - I thought I can take this thing off and get some sleep.
Even though it wasn't a full night's sleep, I did feel better. Perhaps, I thought I was in control of the situation. Anyway, Charles, I took the mask off for about a week. Finally, after a little more sleep, I decided it could leave it on till the 2nd time I awakened. I did the 2nd option a couple of times - then I got braver & decided I would go for the all-nighter.

Sleep deprivation has a great negative influence on the mind/body connection. After a few nights of "little or no sleep" you are not in control of your feelings or thoughts. Perhaps women cry with frustration and men get angry, we try to relieve our frustration.

I wish you well, and I read both your determination to succeed and your frustration that it was so hard. Go easy on your self - you sound like the type who does not give up. Jan

My doctor has told me to stop using CPAP until I see a specialist. He's going to call one on Monday.

I may have something serious going on that requires modifying my therapy or additional therapy. He said it may involve acid reflux, or it may involve my lungs, but that it was almost certainly related to the CPAP and that seeing the sleep specialist was my best bet. He said it could be dangerous for me to continue CPAP without consultation with the specialist and that if my symptoms get worse, especially chest pain or problems breathing, to go to the emergency room. And he agreed with me when I told him my waterboarding analogy -- yes, long term sleep deprivation is both unhealthy and literally torture, and no patient should have to endure it.

I'm not sure, though. I think my doctor might just have an attitude.

(Okay, that was sarcastic, but I had to say it. No hard feelings to anyone, really.)

I made it very clear to my doctor that I'm not one of those people who is just going to stop treatment, that my sleep apnea must be treated, one way or another. I knew my body was telling me something serious was going on, something serious enough that I couldn't continue this way. I also knew -- and tried to say so all along -- that I was bound and determined to be treated. I wasn't just whining and wanting to quit. I was in extreme physical misery and physically unable to continue, and my doctor's orders are not to continue, confirming and affirming what I said all along.

I know everyone had my best interests at heart though, and thanks, everyone!

Charlie

Kudos to you for recognizing there was a problem and then taking action and doing something about it....in spite of what some of us naysayers told you. After all..there is no way we can no what your are experiencing except as it relates to our own experience. You are the expert on your body. I hope it all works out for the good and is nothing serious....meanwhile get a great nights sleep. I wish I could take a few nights off from cpap...it would do my stomach some good too...but probably not the rest of the body.

Hi

What an amazing and interesting thread. There is so much useful and enlightening information in it.

I know you are suffering, but some of the replies have also been directly helpful to me right now. Thanks.

So I will not say I know what you are going through, I do not. However, I may have a faint idea about what might help make your situation a little easier to handle.

So -

Carbonman gave a very good suggestion at the beginning of this thread, when he talked about Low Frustration Tolerance. Whatever your symptoms, you will be able to handle them better if you deal with low frustration tolerance. This is not a psychological "pop" word, but an incredibly useful tool for realistically dealing with difficult life situations.

I would add to what Carbonman suggested, by making one of my own.

Low Frustration Tolerance comes from Rational Emotive Therapy. Albert Ellis, the founder, also coined another word which you might want to look at more closely. That word is "awfulizing". When I awfulize I make a bad situation worse, and I consequently feel worse. Awfulizing also makes it more difficult for me to appraise what is happening realistically, and therefore I am less likely to come up with a solution.

My two-pennorth is that if you learn to develop High Frustration Tolerance, and learn to stop awfulizing, you will feel better, and be better able to deal with your symptoms. This does need some hard work, but it is worthwhile. What happens to us, plus what we think about that, gives us our emotional feelings. How we feel emotionally impacts upon how effectively we deal with our problems.

Your attitude of never giving up is great, maybe developing a little more elegance in applying it would produce better results for you.

cheers

Mars

Hi Charles!!

I am not here to tell you about attitude or failure. I am just here hoping to give you some encouragement...

My hope is that a few months from now, you will be on here telling the next Charles your CPAP success story, and how you can't sleep without your mask and machine, and that you do love your mask. I hope you will look back and these days will be a distant memory. Many have been where you are at right now and they are now here and alive to tell you their stories, and one day...hopefully soon...you will be right there with them...to encourage the next Charles that happens upon this board.
This is a place to come and vent all of your frustrations...and we are here to listen and to encourage.
I would suggest that until you know for sure whether or not you have GERD...get yourself some Prilosec...it is over the counter. Or Zantac. Neither will hurt you to take them if you don't have GERD, and if you do have it, they will help.
Also, I wouldn't set my pressure all the way down to 8. If your EPR is set at 3, then when you exhale, you are only going to have a pressure of 5 and that probably isn't going to be enough to open your airway for your next breath, and you also may feel air hungry with a pressure that low. I would maybe set your pressure at 11 for the lowest, then when you exhale, your pressure goes down to 8. Also, push for getting an Quto machine if you are still in a trial phase, or rental phase. Don't take no for an answer from your DME. Push until you get that auto...you will need a new script from your doc. I think that will help as well.
Good luck, and I can't wait til the day you post to a newcomer on this board..."I was there, I know what you are going through, but it does get better!!"
Cindy

If CPAP or BiPAP turns out to be a treatment that effectively treats my sleep apnea, so be it.

If it turns out that it's ineffective in my case, it is my greatest hope and desire that I find another treatment.

I find something a little disconcerting in this statement:

My hope is that a few months from now, you will be on here telling the next Charles your CPAP success story, and how you can't sleep without your mask and machine, and that you do love your mask.

Shouldn't you simply wish that I receive the best treatment that works for me?

I'm very new to this, but based on my initial observations, there almost seems to be a CPAP cult. It's like... suppose I took a medicine for high blood pressure. All the other people who take that medicine wouldn't be saying, "Don't take a different treatment! Sure, there are different pills on the market, but I hope you find that THIS pill is the pill for you!" What is it about wearing a mask and having air pumped into you, that makes you want other people to wear a mask and have air pumped into them?

I sincerely hope that everyone with sleep apnea gets the proper treatment, until an ultimate cure, at which point, I would hope everyone would be cured, be it by CPAP, BiPAP, dental implants, tongue exercise, or chemical X. Shouldn't the hope be, the health and success of everyone?

If someone had a heart condition, treatable with a pacemaker, and someone else had a similar condition, but it was determined that they couldn't get that pacemaker, I wouldn't try to force the pacemaker on them. I'd hope they can get a heart transplant, or some other treatment that can help them.

There are people with diabettes who inject insulin. There are others who treat it with diet, and/or other medicines. Suppose I had diabettes, injected insulin, and almost died from the insulin. I could have an appointment to discuss other treatment options. I wouldn't imagine an insulin-diabettic would tell me, "I hope you get back on insulin." I would hope they'd say, "Whatever treatment you are lead to, I hope your health is made its optimal best."

I seriously think it's possible the CPAP could kill me, because of whatever my condition is. If not, then perhaps the CPAP will work in the end. If so, then I hope my treatment is successful -- whatever my treatment. I hope I come back here and say, "My sleep apnea has been effectively treated!" and I hope that all will wish me well, whether or not I wear a mask at night. And I wish effective treatment for others, as well.

And, frankly, I hope we all get cured so that nobody has to wear a mask every night.
I hear so much about being in love with your mask, this question has just occurred to me:

Suppose they just came out with a magic pill that, take one pill, and your sleep apnea is instantly and permanently cured. Are you so in love with your mask that you wouldn't take the pill? I wonder.

Frankly, the "love my mask" attitude is scaring me. I want effective treatment. I don't want to fall in love with my treatment. No offense, but it sounding like an addiction! Do you get high off it or something? I don't want to become obsessed or addicted, I want an illness treated. I don't see insulin-dependent diabetics saying they're in love with their insulin needle.

Charlie

Great post and very timely and ironic. I was just getting ready to post about how much I love my new remstar M series with A flex machine because there is so much doom and gloom around here..your first post included. After reading your latest post...I don't really love the machine....but after 2.5 years of trying like a mother to find my magic number with a resmed...this machine is paradise...but only in relative terms to the resmed. Would I prefer to not have to use a machine or a mask...you bet your ass I would. However I know I am stuck with cpap so I choose a glass half full attitude rather than a glass half empty one. I wish you the best whatever happens in your individual case...and I assure you I am not now nor ever will be a member of any cult...cpap or otherwise.

Perhaps you need to research other treatment options and check their success rates. Some of us here have SEVERE OSA (for example me). Dental devices don't work for it. Surgery is not very successful for the most part; some have 10 % success rates. There is no magic pill and I can tell when I don't use my CPAP or have a bad night on it.

When I was first diagnosed I was given a different treatment = O2 at night. Did it work? Well 4 years down the road and more heart problems later, I asked the heart doc and he told me to get on CPAP. He pushed it and I started checking it out and yeah, it was the way to go, not just be put on O2 at night and hope and pray it would solve the problem.

You might ask the background of the doc who told me O2 would work and wrote that I was intolerant of CPAP (even though it was never tried and I was never titrated). He was a professor at a medical school.

Good luck on getting your magic pill treatment. CPAP is the way to go for now at least for me.

There IS a cure for sleep apnea. It is called tracheotomy. It cures sleep apnea by completely bypassing the obstructions. However, most of us would prefer lifelong CPAP to tracheotomy. I guess it just depends on what works, and what doesn't, and what you are willing to tolerate or do.

CharlesVer wrote:My doctor has told me to stop using CPAP until I see a specialist. He's going to call one on Monday.

..........
Charlie

Charlie,

I read some of this thread and it's good to see you held your own for so long against some of us obnoxious cpapers here.

Please try to sleep on your side or tummy while you are not using CPAP. Here is why from another post,

rooster wrote:............
I would like to make you aware of "positional sleep apnea" (PSA). Maybe 40% or more of patients have PSA.

PSA means the apnea is much worse in one sleeping position (on the back) compared to other sleeping positions. For example, my sleep apnea is very severe when I am sleeping on my back.

For people with PSA, the sleeping position can have a big effect on CPAP pressure requirements. For example, I have been titrated in a sleep lab and at home have confirmed my pressure requirements for different positions. On my back I require a pressure of 19 cm (Yow!). On my side or stomach, a pressure of 8.5 cm is sufficient. So I have some devices and train myself to sleep only on side or stomach and use pressure of 8.5 cm.

You may want to make some observations about the possibility of PSA in your case. There may be information from your lab PSG also.

.............

Good luck to you and please update this thread as the matter proceeds.

Rooster

CharlesVer wrote:If CPAP or BiPAP turns out to be a treatment that effectively treats my sleep apnea, so be it.

If it turns out that it's ineffective in my case, it is my greatest hope and desire that I find another treatment.

I find something a little disconcerting in this statement:

My hope is that a few months from now, you will be on here telling the next Charles your CPAP success story, and how you can't sleep without your mask and machine, and that you do love your mask.

Shouldn't you simply wish that I receive the best treatment that works for me?

I'm very new to this, but based on my initial observations, there almost seems to be a CPAP cult. It's like... suppose I took a medicine for high blood pressure. All the other people who take that medicine wouldn't be saying, "Don't take a different treatment! Sure, there are different pills on the market, but I hope you find that THIS pill is the pill for you!" What is it about wearing a mask and having air pumped into you, that makes you want other people to wear a mask and have air pumped into them?

I sincerely hope that everyone with sleep apnea gets the proper treatment, until an ultimate cure, at which point, I would hope everyone would be cured, be it by CPAP, BiPAP, dental implants, tongue exercise, or chemical X. Shouldn't the hope be, the health and success of everyone?

If someone had a heart condition, treatable with a pacemaker, and someone else had a similar condition, but it was determined that they couldn't get that pacemaker, I wouldn't try to force the pacemaker on them. I'd hope they can get a heart transplant, or some other treatment that can help them.

There are people with diabettes who inject insulin. There are others who treat it with diet, and/or other medicines. Suppose I had diabettes, injected insulin, and almost died from the insulin. I could have an appointment to discuss other treatment options. I wouldn't imagine an insulin-diabettic would tell me, "I hope you get back on insulin." I would hope they'd say, "Whatever treatment you are lead to, I hope your health is made its optimal best."

I seriously think it's possible the CPAP could kill me, because of whatever my condition is. If not, then perhaps the CPAP will work in the end. If so, then I hope my treatment is successful -- whatever my treatment. I hope I come back here and say, "My sleep apnea has been effectively treated!" and I hope that all will wish me well, whether or not I wear a mask at night. And I wish effective treatment for others, as well.

And, frankly, I hope we all get cured so that nobody has to wear a mask every night.
I hear so much about being in love with your mask, this question has just occurred to me:

Suppose they just came out with a magic pill that, take one pill, and your sleep apnea is instantly and permanently cured. Are you so in love with your mask that you wouldn't take the pill? I wonder.

Frankly, the "love my mask" attitude is scaring me. I want effective treatment. I don't want to fall in love with my treatment. No offense, but it sounding like an addiction! Do you get high off it or something? I don't want to become obsessed or addicted, I want an illness treated. I don't see insulin-dependent diabetics saying they're in love with their insulin needle.

Charlie

Charles--I certainly did not mean any offense to you in my post...I will not apologize, as I did not write that post with any malice intended. I was only simply stating that I hope you soon find relief and can look back on this beginning time as a "bump in the road" so to speak. I am hoping that the comments you made in response to my post is due to your sleep deprivation. I was simply taking some time out of my day to wish you well and to attempt to encourage you that this will get better...it takes time to iron out all the logistics of cpap therapy.
Yes...I do love my mask and my machine...it has saved my life, and it means that I was alive to attend the births of both my grandbabies, and I am alive to enjoy watching them grow up...and not only am I alive...I have the energy to play with them and enjoy them. So again...yes...I do love my mask and machine!! I won't even take a short nap without it!!
If there was a magic cure for sleep apnea that would allow me to live a quality life without the mask and machine, then yes...I would seek out that magical cure. Right now there are only two cures for sleep apnea...a tracheostomy or death...neither of those two options appeal to me, so instead, I buck up, and sleep every night with a mask on my face...a small price to pay for the life I enjoy now!! I worked very hard at making this treatment work for me, and I came into it with the attitude that thank God I found the answer to my exhaustion, and my health issues and I found a fix for it that worked for me. All of us here attempt to tell others what worked for us, so that maybe in the knowledge we all have to share, others will find what will work for them that will make their therapy tolerable and successful.
NO...I am not "addicted" to my treatment, nor am I obsessed with it. I do not get high from wearing my mask...I get "high" from being able to enjoy life. I get high from the fact that I no longer have to take my heart medication, my blood pressure medication, my antidepressant. I get "high" on the fact that the heart attack I had in 2003 at the age of 40 will hopefully be my one and only and that I will hopefully never have another one.
If i were an insulin dependant diabetic, and taking insulin everyday kept me healthy, then yes, I would welcome my treatment to know that it was giving me a quality life. It IS all about attitude.
If I can give just one new person here some encouragement to put that mask on just one more night, perhaps that person will not go to sleep and never wake up. Sleep apnea is a serious and deadly disease...that is why we are so adamant about not giving up or going to sleep without one's machine and mask. Many of us here have suffered grave health consequences as a result of sleep apnea, and many of us have found health and healing through our xPap therapy.
Is your doctor that prescribed your cpap a sleep specialist? If not, then perhaps he should have sent you to a sleep specialist right away so that you would be getting optimal therapy for you.
I find it offensive that you would attack me the way that you did in your post. You don't know me or what I have been through to get where I am today with my health. It doesn't just magically happen overnight. I was only trying to impart to you to hang in there, this does get better. It takes time and patience.
Good luck and I do hope you find what will work for you.

Cindy

Hi, everyone's telling you about GERD, but apart from drugs, there is a fix (at least to some extent) that you can try (a lot of us do it) and that works amazingly well for many. If there's some way you can lift your bed about 6 inches from the head end and still sleep, try it. Some here have used bricks, and whatnot, and it doesn't matter, but the point is that the little change can be so effective - the acid can't run uphill apparently, and that alone may be enough if it works for you.

Charles,
The alert for work... been there done that... I'm a mainframe computer programmer. There are others in IT on here as well. I'm glad that you're keeping up the fight!

jules wrote:Good luck on getting your magic pill treatment. CPAP is the way to go for now at least for me.

I never said there was a magic pill, or that there would ever be one.

I asked a question, based on a hypothetical. "IF there was a magic pill, would you take it?"

Lots of people ask hypothetical questions. That doesn't mean they have any delusions that the hypothetical will become reality.

I'm trying to ascertain the depth of meaning of this "love my mask" thing I keep hearing about. It sounds like a lot more than gratitude and relief at having effective treatment. As I said, I never hear about diabetics who "love their insulin," though they'd never do without it because they love their lives.

It may well be the way to go for you now, and I'm glad for you, and I never said it's not the way to go for any particular person. I wish I could get effective treatment that doesn't kill me, whatever that treatment may be for me.

As I said, I never hear about diabetics who "love their insulin," though they'd never do without it because they love their lives.

First of all diabetics have lots of support and training and followup with qualified people, they don't have to do it, figure it out all by themselves.
Second shooting up insulin does not require 8.5 hours, it takes 30 secs. Considering my phobia for needles it would require me to practice "love my needle/insulin" a lot before I could handle what me mother does daily. It also does not require a thing over your face for 8,5 hours. A well trained and supported diabetic has all their issues dealt with by pros the first few months and handles their diet and medication with panache (even when they have the beginnings of Alzheimer's) My mothers reaction to the idea of my mask and machine is not printable in an open forum and she has been a diabetic for 30 years.

An addiction - you bet! Just like eating daily is an addiction or sleeping. It is a necessity of life so you might as well enjoy it. Staring at cracks in the ceiling and thinking of England while in bed never made for a strong and beneficial relationship. You wouldn't expect good results from a peripheral that had incompatible or bug filled drivers now would you?