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

[CharlesVer]

I wasn't going to address you personally Charles but since you have seen fit to put words in my mouth, I guess I will.

I didn't put words into your mouth. Putting words into your mouth is if I said, "Brenda said..." I didn't say that.

Like you, I also hope his hostility and rudeness to those trying to offer encouragement, stems from sleep deprivation

For the record, given my general condition, I don't think I've been rude or hostile.

Yes, I've had sleep deprivation. And more.
There have been more symptoms, and a specific reason that I'm trying to relate to the people here, a moral to my story if you will:

I've followed advice that may have permanently damaged my lungs. That advice could have lead to my death by car crash, but very much could have damaged my lungs. I would think I may have the right to have a problem with that, because if it's true, and if I'm not on this Earth much longer because of it, none of the people on this board are going to help my wife raise my daughter.

Let me make it a little more personal, tell you a little about myself:

When my daughter needs help with her homework, she comes to me. Say she has a social studies test. I always sit with her going over her words, and I make funny stories out of all her vocabulary words. Recently, she had a test where some of her vocabulary words were "merchant" and "voyage," and I made up this story about Millie the Merchant and her voyage. She had lots of fun, and also bonded with her dad who she loves, and she got a 100% A on her social studies test.

I was diagnosed with sleep apnea.
Then I started CPAP.
Then I started having some very severe and extreme symptoms.
Describing those symptoms here, I heard, "Stick with it," and "Don't stop."
After a week of almost total sleep deprivation, lung pain and total torture, and driving at great risk, during which time I frequented THIS SITE, and the chat room. THEN I googled a site that said, "If you have these symtoms, consult your doctor immediately."
I consulted my doctor immediately, and he said to stop the CPAP immediately, and that I need to see the specialist.

I know, if I had died in a car crash... AND if I WILL die because my lungs have been burned by stomach acid, that NO ONE HERE is going to sit with my daughter and tell her funny stories out of her social studies words... and if they did so, there wouldn't be the bonding love between a father and his daughter.

So I think I have a right to be a bit annoyed, given the advice I've received.

It's not "tough love" to give bad advice.

I never once claimed that anyone had negative intent, in fact, I have repeatedly stated that that's not the case, in response to

You already have your mind made up as to the negative intent or negative outcome and can't see the well intentioned thoughts that are being sent to you.

I have, in fact, said over and over again, I know these posts were well-intentioned.

You write:

Attitude is so very important to any medical treatment and I sincerely hope that something occurs to enable you to find the answers that you need to get yourself on track to improving your health.

Okay. This is the part that's getting frustrating. This has been my frustration from the very beginning. Please, please, please, understand the following:

My week of near complete sleep deprivation.
My swallowing air repeatedly.
My burping up acid.
My lung and chest pain.
My throat pain.
My disorientation.

And all the other symptoms I've listed...

Not one of those symptoms... not one... had the slightest thing to do with my attitude. Not the slightest thing.

The price of milk in China, has as much to do with my problem, as my attitude has to do with my problem.

Severe reactions to CPAP therapy are not psychological.
This it not in my mind.
I did not hallucinate my chest pains.
I did not imagine that I have total sleep deprivation.
I can't pull up my boot straps and "be like a man" and just deal with it.

This is a medical condition that from the very beginning should have gone to the doctor.

No one should ever tell anyone, it's all in your mind.
What you should tell them is, this is a serious situation, see your doctor.

I would never wish death and misfortune on anyone.

Me either, but do you know what the road to hell is paved with? Good intentions.

If you truly have good intentions, take to heart what I've said.

Don't assume people's symptoms are in their mind or attitude, and if you see someone else assuming that, tell them how important it is that they don't assume that, and tell the other person, see a doctor.

My intentions are also good: To save others the suffering I've suffered, and to raise awareness that CPAP machines can cause serious side effects that are not of the mind, but of the body, and require serious attention from a medical professional... not berating people for being non-compliant... but rather, understanding that the cause of non-compliance may itself be indicative of a situation as serious or more serious than the sleep apnea itself.

Best wishes to you, and to all.

[CharlesVer]

I think you are still in denial about having to use CPAP for the rest of your life and you are looking for an out and over-reacting over your doc's ... Ummm, "attitude".

That's nice. Is your psychiatric diagnosis of me free, or will you charge me for your psychiatric analysis?

Of course, what you say must be true, because my symptoms can't really be happening.

[raylo]

I haven't found any mention of the type of side effects that you describe, or at least serious enough to put a life at risk, but I am not a professional researcher, doctor, or academic. My best guess (which is only a guess from a non-medical professional) is that you should see your doctor and get a sleep doctor and/or pulmonologist (my sleep doctor is both) involved as soon as possible. Your arguing about cpap is probably pointless until you get some real answers about what is going with you.

This discussion has been ongoing for over a week.

I've seen my doctor and he is going to consult with the pulmonologist and arrange an appointment for me. By his instructions, I've stopped the CPAP.

It's not pointless for this reason:

For the last week, I've been suffering pain I wouldn't wish on my worst enemy, including almost total sleep deprivation, swallowing air, nausea, severe chest and throat pain, light-headedness, disorientation, and a host of other symptoms. It was after a google search brought me to a site that said, "If you have any of these symptoms, call your doctor immediately," that I actually called my doctor.

The advice I kept getting here was : "Stick with it. Don't stop. It goes away. You'll feel great!"

The advice I should have gotten here was: "Call your doctor."

I do not want anyone to go through what I've gone through.

Please, if you encounter someone with severe symptoms, tell them to call their doctor.

If one person here listens to that advice, then it's not pointless for me to continue talking about it now.

On Friday morning you wrote about the lungs for the first time:

by CharlesVer on Fri May 15, 2009 9:56 am
By the way, I never mentioned this before the my last post, I might as well mention it now.

My lungs feel a little like they're going to explode. I walk around and feel like I still have the mask on, like my lungs are being pressed by compressed air. My throat is similar. I think I've irritated my entire respiratory system. Is that normal?

A few minutes later:

by raylo on Fri May 15, 2009 10:16 am

CharlesVer wrote:By the way, I never mentioned this before the my last post... Is that normal?

Feeling like they are going to explode isn't how I would describe what I felt like but my pressure is at a comparatively low 8-10. Irritation to everything is very common. You have to find the right humidty setting to keep from having symptoms related to dry nose, mouth, and throat without drowning yourself in the process (one of the reasons some of us buy a lot of ayre gel and stick it in our noses, other use lanosol lanolin nipple cream for skin irritations). It does take some adjustment to air coming in at pressue, if it is really bad you will need to work with your doctor (if you have a helpful one) to find a way to get adjusted and them get to an optimum treatment pressure. Some of the folks here are extremely knowledgeable and will have better answers. Some of the folks here may know a bunch of stuff the folks in the doctors office don't know. This is a big part of our lives.

Charles there is a failure rate of something like 50 or 60 percent with cpap. I know several people with machines in their closet. This site seems to evolved (I think rightly) into a place to find out how to make it work, with a bit of "sleep-a-holics anonymous" mixed in. Imagine going to an AA meeting and talking about why it won't be your fault if you fail (I don't mean that harshly). I know this isn't a 100% infallible analogy - I just came from the doctor with some provigil because I still have some "excessive sleepiness. The drug is not something I want to take and I won't take it unless I have too. But what is important is that cpap hasn't "cured" me but even so it is helping.

Now, for some more practical stuff (some I may have forgotten or not seen 'cause it was in chat) : have you called the DRs office? It sounds simplistic, but sometimes we get machines and are left alone to deal with all of this crap by ourselves. You will get practical advice here and moral support (and chastisement), but for really serious issues and side effects you may need a doctor's help. But in the interim hang in.

Shortly after that:

by CharlesVer on Fri May 15, 2009 10:26 am
raylo wrote:Now, for some more practical stuff (some I may have forgotten or not seen 'cause it was in chat) : have you called the DRs office? It sounds simplistic, but sometimes we get machines and are left alone to deal with all of this crap by ourselves. You will get practical advice here and moral support (and chastisement), but for really serious issues and side effects you may need a doctor's help. But in the interim hang in.


Yes.

Problem: I'm going through my primary on everything. I suspect my primary knows less about sleep apnea than I do, just from reading over the last week. My financial situation forces me to cut corners, and a $20 copay is less than a $40 copay, and I'm not entirely convinced that a specialist will have advice I can't get here or on the web.

You really should see someone who knows about this stuff.

[DreamStalker]

I think you are still in denial about having to use CPAP for the rest of your life and you are looking for an out and over-reacting over your doc's ... Ummm, "attitude".

That's nice. Is your psychiatric diagnosis of me free, or will you charge me for your psychiatric analysis?

Of course, what you say must be true, because my symptoms can't really be happening.

Don't worry about it -- this one is free ... Good luck with your health dude!

[CharlesVer]

Folks here are just trying to open your eyes

Because, of course, my eyes are closed, and your eyes are opened.

That's why you know so much about my symptoms, and I know so little.

What I really need is some more sleep deprivation, and more burning of the chest.
Because those things are all in my mind.

It's always best to ignore your body and your doctor, and listen to message board people with names like "DreamStalker."

[ozij]

If you use google scholar (it's part of google's toolbar) you can find many studies that will answer you questions.

You could search out some of the following:

OSA (or insomnia) and acid reflux
OSA GERD and CPAP
OSA (CPAP) and diabetes
OSA (CPAP) and strokes
OSA (CPAP) and atrial fibrillation
OSA (CPAP)) and high BP
OSA (CPAP) and metabolic syndrom.
SIlent GERD
OSA and leptin
OSA and depression
OSA and anxiety
There's lots of information out there for you to read - in peer reviewed journals. I think you will find that most people did not have acid reflux as bad as you did, and most of the mortality is not the result of breathing acid.

Which is not to say you shouldn't be scared of what happened to you. Yes, you may have harmed your lungs. Yes, you may need your acid reflux /GERD /weakened Low Esophagal Sphincter treated. I don't know if you'll die from it - haven't read enough studies about that.

You seem so angry at those forum members who did not give you the advice you need -- but you will always find varieties of advice on any forum. You have to figure out who you trust (if at all) and to choose the advice that is right for you.

May I suggest something? Do some reading on your own - find sources you trust - and study them seriously. You have no apriori reason to trust anything said by any member of this forum, ever. We are just people, sharing our experience, which may or may not be relevant to you - that's all - only you can be the judge of what is relevant -- please try to accept that anyone on the forum may give irrelevant - and even bad advice.

When you feel better, try to read all the posts (and threads) in which "daddyof7" participated. Not because he is like you.

If you haven't researched Obstructive Sleep Apnea and its therapies until now, now it the time to start - there have been many studies of the subject. If you want a forum for about non-cpap therapies for sleep apnea, try the site called http://www.talkaboutsleep.com - they have a dental sleep medicine board.

As someone said on this thread - a tracheotomy is also therapy for sleep apnea. And some people really need that.

CPAP (and the mask) do the following for me:
They keep me from being choked repeatedely when I sleep.
They keep me from waking up drenched in sweat.
They keep me from waking up with my heart banging, and in a panic
They keep my blood pressure normal
They keep me from having to get up a number of times each night to pee ("nocturia", another term to search on google)
They give me pleasant sleep - and the difference has to be experienced.

And they change the quality of my waking life for the better.

I hope you will find something that will do all of the above for you.
O.

Edit: Typo in "nocturia" corrected

[CharlesVer]

You really should see someone who knows about this stuff.

Yes, I finally did get the advice to see my doctor, eventually.

And I'm grateful for that, truly.

My doctor visit vindicated what I had said in the chat room, days earlier. That I needed to take a break from the cpap until I find out what's going on.

[CharlesVer]

You seem so angry at those forum members who did not give you the advice you need

I have actually also, in past posts, expressed gratitude for advice given and stated I knew that best intentions were at heart.

And that my anger isn't really at anyone here, but at a situation...

Thanks for the google advice, et.al.

[elg5cats]

I've seen my doctor and he is going to consult with the pulmonologist and arrange an appointment for me.

Charles, hopefully your are feeling reassured since your doctor didn't need to arrange a stat flight to the ETC for intubation with the prognosis of death by CPAP as inevitable. Who really knows what is going on with your situation, be it......coexisting medical problems..anxiety, antisocial personality disorder, GERD, wife beater, horrible person syndrome, neurosis, borderline personality disorder, father, son, celebrity, minister, psychiatrist, dump truck driver, bagger, scientist.....hopefully, you will soon have a treatment planfor your sleep apnea and any other medical diagnosis....try not to forget people are doing their best to be helpful and the benefits of being kind in your frustration as well. When your treatment is well defined, and helpful, keep the list informed!

elg5cats.

[DreamStalker]

I've seen my doctor and he is going to consult with the pulmonologist and arrange an appointment for me.

Charles, hopefully your are feeling reassured since your doctor didn't need to arrange a stat flight to the ETC for intubation with the prognosis of death by CPAP as inevitable. Who really knows what is going on with your situation, be it......coexisting medical problems..anxiety, antisocial personality disorder, GERD, wife beater, horrible person syndrome, neurosis, borderline personality disorder, father, son, celebrity, minister, psychiatrist, dump truck driver, bagger, scientist.....hopefully, you will soon have a treatment plan helpfully for your sleep apnea....try not to forget people are doing their best to be helpful and the benefits of being kind in your frustration as well. When your treatment is well defined, and helpful, keep the list informed!

elg5cats.

You left out kitten killer.

... I told them I was going to kill a kitten

[CharlesVer]

I've seen my doctor and he is going to consult with the pulmonologist and arrange an appointment for me.

Charles, hopefully your are feeling reassured since your doctor didn't need to arrange a stat flight to the ETC for intubation with the prognosis of death by CPAP as inevitable. Who really knows what is going on with your situation, be it......coexisting medical problems..anxiety, antisocial personality disorder, GERD, wife beater, horrible person syndrome, neurosis, borderline personality disorder, father, son, celebrity, minister, psychiatrist, dump truck driver, bagger, scientist.....hopefully, you will soon have a treatment plan helpfully for your sleep apnea....try not to forget people are doing their best to be helpful and the benefits of being kind in your frustration as well. When your treatment is well defined, and helpful, keep the list informed!

elg5cats.

He did say that further or worsening symptoms, I should go to the E.R. It concerns me that my symptoms have not gone away.

I'm not sure about all those, though most of them don't cause burning in the chest.

I will keep the list informed, if you're interested. If you'd rather I go away, I can do that too.

[raylo]

You really should see someone who knows about this stuff.

Yes, I finally did get the advice to see my doctor, eventually.

And I'm grateful for that, truly.

My doctor visit vindicated what I had said in the chat room, days earlier. That I needed to take a break from the cpap until I find out what's going on.

Yes, less than half an hour after writing of your lung symptoms for the first time, so please don't write as though nobody here has said that. On Friday, DreamStalker suggested you go to your doctor as well. Did you miss the post where suggested you get facts rather than guessing? You have said your doctor knows little about apnea, does he/she know anything about its treatment or side effects of that treatment?

Charles, you should consider scraping up the extra $20 somehow and getting to see the specialist.

The people on here have taken your issues seriously and tried to help, but they can only go so far.

[CharlesVer]

You left out kitten killer.

... I told them I was going to kill a kitten

That's what I think it is, actually. I'm suffering side-effects of Feline Revenge.

How could I have known that God is a Cat, when God spelled backwards is Dog?

[CharlesVer]

The people on here have taken your issues seriously and tried to help, but they can only go so far.

Yes, much of what I'm saying is responding to earlier-on stuff, and I've expressed gratitude over and over... and also frustration and confusion... and I really, truly am grateful!

I have no problem with those who did suggest I go to a doctor, and great gratitude to you and others who suggested that.

I do have an issue with those suggesting I'm imagining it all, have a bad attitude, and who, earlier, in chat said, "You can't stop, don't stop no matter what, it will all go away, it will all get better!"

I thought I already said this... the scraping will be done, as I will see the specialist.

[JayC]

charles:

Using search, it appears that you did not begin to mention specific physical symptoms until --offhandedly -- late in your day 5 posts. Day 6 posts, you were angry and in pain.....and much later in that exchange, detail what you experienced.

Here is not a medical site, but shared experiences, support......

Suffering as much as you were, why did you need to be told to see/contact your doctor? If you wanted such advice, why did you not give more specifics earlier on in your suffering?

No one here caused this.....when you shared the details, you were told (and I don't have time to find the quote...) that what you described was outside (either in intensity or detail) the garden variety speed bumps, and that you really should be having your docs investigate. Now.

I'm not sure why you kept the details under wraps for so long it you were wanting specific feedback.

I hope you get relief soon.

You really should see someone who knows about this stuff.

Yes, I finally did get the advice to see my doctor, eventually.

And I'm grateful for that, truly.

My doctor visit vindicated what I had said in the chat room, days earlier. That I needed to take a break from the cpap until I find out what's going on.