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CPAP is not the solution

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

CPAP is not THE solution.

CPAP does not solve OSA

CPAP does not cure the causes. It may even conceal further deterioration.

CPAP does not undo the effects. Many of the compounding issues that are associated with OSA remain.

CPAP is not THE solution but it does serve a vital role in the search for solutions.

CPAP buys time by propping us up and stalling some of the more obvious consequences.

Time for what?

Time to question and learn and experiment and act.

Time to take critical steps to undo some of the damage already done.

This was not intended to discourage people from using Cpap but rather to encourage them to see it as a reprieve that will give them an opportunity to look at the big picture and thereby extend their goals to embrace significant changes that might enable them to get to a safer place and live a fuller life.

This was intended to provoke discussion.

What are your thoughts on the subject?

What are the other issues?

What are the solutions?

What are you doing about it?

A few suggestions or success stories would be nice. :)

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Sierra +1 point · 5 months ago Sleep Innovater

I would certainly agree that a CPAP does not cure the cause of obstructive sleep apnea. And, it is not a perpetual life machine and we are all going to die, the last time I checked. However, it can certainly do a good job of controlling the adverse effects of apnea. As a diabetic, I kind of see it like using insulin. Insulin does not cure diabetes, but it certainly does a good job of avoiding many of the adverse effects of diabetes. The only real serious issues that I am aware of that CPAP can cause is central apnea. In some people, the pressure used to treat obstructive apnea can increase central apnea. There are other solutions for that, but probably not with a basic CPAP or BiPAP.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

You are right Sierra. CPAP is not the villain in this story.

The obvious villain is OSA but it doesn't play a solo role.

OSA usually hangs out with a bunch of other villains.

CPAP can neutralise some of the damage caused by OSA but it doesn't really deal with the associated and compounding issues.

Some of the issues related to OSA effecting sleep-cycles, tiredness, hormones, obesity, memory, cognizance, drive, sex, sleepiness and depression are often part of the bigger picture and rarely resolved by CPAP alone.

CPAP cannot be the end goal. It should be viewed as the beginning of a much bigger battle.

How many people on CPAP therapy have the magic solution they hoped for?

How many still struggle with most of their original symptoms?

What can be done about it?

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Sierra +0 points · 5 months ago Sleep Innovater

Yes, apnea and CPAP therapy are just a piece in a larger puzzle. I have had no major life transformation going from an AHI of 37 at diagnosis to my now fairly normal AHI of 2 or so. But, I had no problem sleeping with the AHI of 37. My main motivation for using it is to avoid the oxygen desaturation events and any effect that may be having on my long term health. And my snoring was annoying my wife, so elimination of snoring has a benefit too. On the other hand my wife who was diagnosed in the 80 range and now averages 1, it has been a major help. She still struggles with sleep issues to some degree, but I believe it is all of her own doing. She refuses to give up on the necessity for an afternoon nap, and that I believe is the main reason for her not being able to sleep through the night.

But, as far as it curing everything that ails you, no it is not that. When I was diagnosed with sleep apnea the sleep technician tried to tell me it would cure my diabetes. Of course that is ridiculous CPAP sales talk. I never took much of what she said seriously after she made that statement. I knew I was on my own for my CPAP support.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

Ah the great granny nap dispute! It seems so innocent and comes with a free set of steak knives so how could you imply that there are strings attached?

Unfortunately your assessment of the CPAP technician seems to be applicable to much of the industry but as they continue to consolidate their power base and their income stream they will have to become more professional to warrant it.

Of course the ultimate revenge would be to spend some months doing the online sleep technician course and put in the required hours of lectures and training then you can fix the system from the inside and get paid while you do it! :)

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Sierra +1 point · 5 months ago Sleep Innovater

If you look at my post on mouth taping and in particular at the session times on my wife's chart you will see all of her naps. She goes in streaks with up to two weeks without, and then a week or so with a nap every day.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

I'll take your word for it Sierra.

I think my charts would tell a similar story.

I am a bit leary of looking at other people's charts.

It might be different if I was just focused on trying to help them but focus is not my strong suit. :(

I'm not sure if I want to know if they stayed up to watch the world series or if they went to bed early because the WOW servers were shut down or if they stopped to pat the dog on the way back from their 4am toilet visit or why they started the machine a bit later than usual every wednesday and slept like a log all night.

If I want to be sure about when things happened in my life I can be fairly confident that Sleepyhead knows.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

I started this thread to see if the forum would lend itself to a more general discussion.

I suppose in a way I chose this particular subject because I need to motivate myself to take action.

Over the past 30 years I have developed a pattern of postponing cumulative illnesses until I have no choice but to follow up. The net effect has been that every 4 or 5 years I revise my half-page medical history and go to see a new local doctor who applies due diligence for a new patient and investigates one or two of the issues then settles back to just writing scripts. (I suspect that this is my fault because it is the expectation and pattern that I bring with me.)

I have reached that part of the process again. I need a fresh angle and some fresh answers.

It's time I went back into battle, which is difficult because I feel that I have lost most of the battles I have engaged in recently.

I tried testosterone therapy with no discernible benefit so I disengaged and quit the field.

I got a CPAP machine but I consider it to be a pyrrhic victory.

I formulated a plan to break the weight seige but haven't implimented it yet.

I am currently experimenting with Melatonin but getting entirely the wrong results so I probably should quit the field once more.

There are other battles I have considered or even fought but they are soon forgotten.

I think I need a better battle plan. A strategy that delivers small victories that can be used to swing the odds for the bigger battles.

This thread was not meant to be about me.

There must be millions of people out there in a similar situation.

How have you dealt with the issues of ageing?

What strategies have worked for you?

What experiences or suggestions do you have, not just for me, but for everybody in the same boat.

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Sierra +0 points · 5 months ago Sleep Innovater

One of the strategies I use is to keep each health issue in isolation from each other. I just look at them one at a time, and only work on the ones that need attention. I have my diabetes (AIC), blood pressure, cholesterol, and now apnea (AHI - 1.8) all in good control. My weight needs some attention though. I put in about 1 hour of cardio six days a week for exercise, so no room there for more. I just need to exercise the pushing away from the meal table muscles a little more! At some point I'm sure I will have to do the hearing aid thing, but I'm holding out on that one for as long as possible.

The only real worries I have about aging is that it is becoming harder to get reasonably priced travel insurance. And I also wonder how I will fare with the technical issues associated with diabetes insulin management, and apnea as my cognitive skills start to slip. Bridges to cross when I get to them. Nothing I can do about it now...

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

I admire your discipline and focus. How did you choose a cardio program and manage to implement a routine?

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Sierra +1 point · 5 months ago Sleep Innovater

We live about 3 blocks from a gym, and I have a seniors annual membership. I just walk there and do my 1 hour routine of treadmill, cross trainer, and every 2-3 days some weights. I try to go every day, but it generally works out to about 6 times a week.

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Biguglygremlin +0 points · 5 months ago Original Poster Sleep Commentator

3 blocks sounds so easy until you put it in the context of a Canadian winter! :O

Our nearest gym is only 20kms down the road but it costs $800 per year.

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Sierra +0 points · 5 months ago Sleep Innovater

Yes, at -15C and a brisk north wind, it forces me get the parka with hood out.

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4ntwenty +0 points · 6 days ago

You'd need a good workout just to get warm.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Your comment about current strategies and future concerns was rather profound Sierra and, as per usual, gave the nail a major headache.

It made me (an avowed CPAP hater) realise that the approach you are taking to CPAP and no doubt other areas of your life is critical to finding a partial solution to your most serious concern, how to manage these devices with diminished capacity.

It also convinced me that what you are doing for others through this forum is a vital aid in enabling them to do likewise.

I am talking about the urgent need to take control of our personal welfare and embrace (shudder) the machinery and technology that we are becoming so dependent on to the extent that we are able to understand it and manage it so well that we will still be able to function through simple comprehension and habit well past the stage where, without these skills, we would be just another frustrated patient waiting for support that might not always be competent or easy to find.

In other words I think what you are doing Sierra, by offering well researched technical advice, with caution, is medically, legally, ethically and morally responsible and vital to those who feel able to benefit from it.

Who knows. If you keep up the good work I just might be converted to the 'for her' version with that pretty pink screen! :P

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Sierra +0 points · 4 months ago Sleep Innovater

Thank you for the kind words. And you do know that you can get masks in pink too, if you want to stay well coordinated!

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Yes, an absolute necessity, and matching pink bed-socks, but my outfit is going to be simply ruined by the grey chin strap I just ordered and you know that my wife still wants her pink satin pillowcase back. :(

No wonder I have trouble sleeping at night! :P

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Would the striped one be too much do you reckon?

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Ruby +1 point · 4 months ago Sleep Commentator

Gremlin, you are so profound in your thoughts and concerns. You aren't alone in this either--most of us need help trying to figure out what is best for us and that road is a rocky one with very few rest stops. This may be a long post but here goes....

I do not like my CPAP. Actually I borderline hate it. Does sit really help? The information that goes to my doctor says yes, my oxygen levels are where they should be and so on. But do I sleep better or feel better? NO. I went to my sleep doctor (who uses a CPAP) and told him this. He looked at my results and said I was doing GREAT, wearing my mask several hours each night. Now, I should just wash my mask each night in lavendar scented Dawn dishsoap and I would drift off like a cloud. I was so dumbfouded that I didn't even think about reminding him that just because the mask was on did not mean that I was in a restful sleep.

I do wear my CPAP faithfully. I've worn it so long that now I can't sleep without it. Yes, I do take naps almost every day. They don't affect my night sleep as I sleep the same when I haven't napped for several days. But maybe I should cut them out.

I have several other health issues: type II diabetes, restless leg syndrome, and afib among the most dibilitating. It is completely overwhelming at times and made even worse with insurance issues that won't pay or make me drive 2 hours to see a doctor. But I like to research and learn as much as I can about the issues I face. Each has it's own set of problems but then each one can adversely affect the others also. I try to keep current on new information but that doesn't always happen. And then I have lots of other "stuff" that has to be done so I don't have time to do as much research as I would like. It's a struggle. That's why I think forums like this can be so helpful. You not only realize others have problems but that there are some good, caring people out there.

The last part of this long post is that I think it is extremly important to learn all you can about the issues you face. Guess that piggy-backs on the previous paragraph. But it is the only way to take charge of your issues. If you KNOW as much as you can then you can go into your doctor and have a quality discussion. Yeah, I know--many doctors still frown on this. And it's easy to say--find a new doctor. Not easy to do. But my opinion is that you have to take control of your health because quite frankly, no one else will. And it can help you feel like you DO have some power over your life.

I was on the board of directors for the Restless Leg Syndrome Foundation for almost 6 years. I am now on two patient boards for sleep apnea. I am a patient advocate (all of this is volunteer work by the way, not getting paid to tell you this) and have spoken in Washington, D.C. to various groups about sleep issues. Now I am focusing on the health care issues in rural areas. I am not telling you any of this to prove what a great person I am (because I'm not that special, believe me) but to show that everyone has ways to deal with their issues. Some don't want to do anything, some want to do a lot. But by telling our stories, we can at least support each other.

I hope you continue looking for answers. I also really hope you find them. This forum can be great but life happens and we don't always check in like we should to help others or find help for ourselves. Hang in there. Keep asking your questions and posting. I kinda like knowing a real Gremlin!

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Every person is a great person Ruby in small ways and you have found more small ways than most.

I joke with my kids that it's the thought that counts but sometimes the thought works better with a little effort or gesture thrown into the mix. :O

You seem to have found a number of commendable ways to participate in life and to assist your neighbours to enjoy a more rewarding existence.

Talking about it is not something to shy away from when it can encourage and inspire others.

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Sierra +0 points · 4 months ago Sleep Innovater

Ruby, you are obviously a giving person to do all that volunteer work. Well done, and probably without the thanks it really deserves.

On the sleep issues, I have found some help with a Canadian website which was set up by a pharmacist who was concerned about the overuse of sleeping medication, especially in the elderly. His view was that it was contributing to falls and fractures which in turn were compromising the health of seniors and increasing the costs to the healthcare system. He is also a professor at the local university and I suspect this website is likely a grad student undertaking. I found out about it through a CBC new article which gives a little more of the background. In any case here is a link to the site. There is a lot of information there, and it takes a while to get through it all. It certainly helped me with my ability to sleep despite the irritation/aggravation of having to use a CPAP.

SleepWell - It's No Dream

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

There is a very inspiring Blog that I am taking the liberty of linking to this discussion because it directly addresses the more critical issues. (please forgive the presumption RebeccaR)

How To Get Your Brain Back A Blog By RebeccaR

This is well worth reading!

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KangarooTailStew +0 points · about 2 months ago

Might read that.

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

I salvaged the data from my old Resmed 9 and dumped it into Sleepyhead but can't get my head around the session times.

I know they are not really relevant to the bigger issues but why don't they make any sense to me?

2:00pm

7:30am

1:00am

6:30pm

12:00pm

Have I inadvertently changed some settings to end up with that sequence of times or does it make perfect sense and my last few neurons have finally run away from home?

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Sierra +0 points · 3 months ago Sleep Innovater

BUG, there are some settings you can change from the defaults. See File, Preferences, Import. I have never messed with the default settings, and everything seems to work OK... It splits one day from the next at 12:00 noon.

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

Thanks Sierra,

I haven't tampered with anything.

I can only presume that the 2:00pm is an error and was supposed to read 12:00pm

Does yours show 2:00pm at the top or do I need new glasses as well as new neurons?

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

Maybe we need a chart to understand what I'm mumbling about.

Why does it say 2:00pm at the top of this chart?

And while we are at it what does it all mean?

Come on now!

I've been in this forum for over 3 months and never posted a chart before today.

So what does it tell you?

What can you divine?

What predictions can you make?

Will I find true love?

Am I doomed?

Is there a cure?

A simple scrying is all I ask!

Where are the clairvoyants and soothsayers when I need them? :P

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Sierra +0 points · 3 months ago Sleep Innovater

I'll cut to the chase and only try to answer the ones I know something about!

The time scale on the Session Times is a little different, perhaps because the software comes from "down under"? The key is to start reading from the bottom to the top. Take the very first day on November 26. It looks like you put the machine on just after 6:30 in the evening, slept for 2-3 hours, then were up for 4 hours or so, went back on the machine at 5:00 in the morning, and stayed on it until 7 am or so. KEY: read from the bottom up in time!

Assuming the same colour code as I have, your AHI is mostly hypopnea (dark blue), and to a lesser degree obstructive (light blue). That said if this is with the F&P Icon I do not believe they detect central apnea, so if there is any it would likely be lumped in with the obstructive.

The total time in apnea looks quite low if the scale is in minutes. The large leaks and leak rate do look high.

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

Now where's the fun in sticking to what you know?

It's so much more challenging to get creative and make it up as you go along!

I didn't realise Sleepyhead was developed in Australia.

The sheep should have given me a clue.

So that makes it all our fault right?

I still reckon someone ran out of ones.

Yet another thing for me to lose sleep over.

It's no wonder my charts look so bad. :(

Talking about charts, despite a worthy effort on your part Sierra, I don't really feel that I got my money's worth out of that reading.

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KangarooTailStew +0 points · 3 months ago

What does it tell me? That you are rather slow, that you have very messy charts, that you ask too many questions, that you have probably found your true love and forgotten, that you are doomed to find her and forget again, and that there is no cure for true love. Did I miss anything?

PS I don't know what the green stuff means but it looks pretty grim.

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

Lol Right on every count but what does it all mean?

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katherand +0 points · 3 months ago

Have you read the book Why We Sleep? I thought it was very good.

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jeffez +0 points · 3 months ago

My Amazon copy arrived today. Thanks for the suggestion from this Forum. (bonjour I think.)

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

There seem to be more than one book by that title.

Which one did you mean katherand?

Is there a free sample or PDF someplace? :)

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jeffez +0 points · 3 months ago

Why We Sleep: Unlocking the Power of Sleep and Dreams by Matthew Walker PhD | Jun 19, 2018 ISBN-10: 1501144324 ISBN-13: 978-1501144325 Amazon: #1 in Dementia #1 in Sleep Disorders #1 in Anatomy (Books)

Bought paperback, cheaper than Kindle ebook. Just starting to read today.

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Ruby +0 points · 2 months ago Sleep Commentator

However, if you find someone with a crystal ball you might get more answers. Just kidding (for those of you who might take me seriously and jump all over me for being facetious.)

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Commentator

Just kidding? Seriously Ruby!

How can you be so flippant, flip, glib, frivolous, waggish, whimsical,

Hang on a sec while I boost the pressure.

Ohhh that feels so gooood!

Now where was I?

Oh I remember!

jokey, jesting, jocular, playful, roguish, mischievous, puckish.

You got away with it that time Ruby but never again!

This is a serious matter!

People have nearly died laughing you know!

Oops now look what you've gone and done!

I've sprung a leak.... :(

Now where's that chewing gum?

There .... all fixed.

Now where were we again?

Oh ... that's right.

Keep it serious from now on Ruby!

No more facetious discussions!

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Commentator

It's good to have you back Ruby. :)

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Ruby +0 points · about 1 month ago Sleep Commentator

Good to be back, buddy. I do worry that some of my posts will be taken the wrong way. But then I'm not always taken the right way either.

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tonimich +0 points · about 1 month ago

Hello!!! how are you??? I am a med student doing a project on Obstructive severe sleep apnea. Anyways, I need to purchase a sd card which shows a high AHI!!! can you help me. So I can do a report on it. thanks Basic

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KangarooTailStew +0 points · about 1 month ago

Why an sd card? There are lots of charts. Would they work?

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