How to get rid of CPAP?

Some of us would not be alive today if "nature law" had been allowed to prevail.
As one of those people, I do not value that definition of "nature". NOT AT ALL!
There is no excuse for ignorance of the ingenuity of people to make a better life and better health.
This is a gift; disease and infirmity is a curse we have been tasked to fight.
We do not deserve this life if we cannot accept this challenge which has been given to us.
If after 3 year's treatment, you are having these foolish thoughts, I wonder if depression may be an issue.

Guest wrote: Wearing a mask to sleep do you think it is a fantastic thing ? at least i think it's very uncomfortable and very noisy.

my mask is comfortable. I don't notice it.

The majority of the sleep spnea is becuase the patient's neck is too fat which causing the air way becoming narrow, then the patient breathe the less level Oxygen than normal, it's a physical problem, not a neuropathic problem, i mean most of patients.
(We can't use minority to deny majority, right?)

My neck is not fat.

Why not choose/try a better way to alleviate the spnea like losing weight or correct sleeping posture if it is effective?

I was 112 lbs when it first started. Even falling asleep sitting up my SPO2 dropped to 79%

Machine is the last way if those curing is not effective just like glasses, wheel chair... (PC,car and airconditioner i also like, they are used to enjoy life better. )

Guest and Guest 2, should hold hands while paddling in De-Nile, that way they can better find the bank. Looks from here they are probably going to ignore all useful advice. Jim

chunkyfrog wrote: We do not deserve this life if we cannot accept this challenge which has been given to us.

That is deep. I like it.

sylvie wrote:

chunkyfrog wrote: We do not deserve this life if we cannot accept this challenge which has been given to us.

That is deep. I like it.

Yes!
The law of Nature really is to survive in any way we can and if that includes cpap machine, artificial hearts and lung, bionic legs and arms, hearing aids or down filled parkas and mukluks so be it. We are natural beings and therefore anything we make can be called natural.

And after all Nature thinks it is perfectly natural for a critter to lay eggs in another critter which when they hatch, eat their way out of their living host. If that is natural then so is my cpap machine.

Edited to add: I am also ok to call my cpap machine unnatural if eating ones way out of living creature is all natural.

aren't trolls fun? thanks guest, guest 2, and guest 3, for your wonderful insight.

sleepnasta wrote:aren't trolls fun? thanks guest, guest 2, and guest 3, for your wonderful insight.

Not necessarily trolls. Many people are afraid to sign up. And for every question asked there are often a dozen people afraid to ask.

Also this persons first language does not seem to be English so that may confuse the issue.

GUEST2 wrote:Thank you all, i am almost convinced to forget the idea to get rid of the machine.

However, i think the reasonable weight is some garantee to have a good health, not only for curing sleep apnea. Some statistics report can't be the excuse to reject the healthy living way.
Machine is machine, people can't be depending on a machine, it disobeys the nature law.

I think you should continue to pursue your goal in spite of all the silly naysayers here.

Let them suck on those PAPs forever if they wish.

I have found the following helpful:

reduce stress (50%)
eucapnic breathing and eucapnic PAP management (30%)
move well*(10%)
eat well**(10%)

My weight has consistantly come down after I started eucapnic breathing and eucapnic PAP management even though efforts were always consistently ongoing.

In February they are scheduled to publish some research where they tell what they believe to be the actual cause of Obstructive Sleep Apnea. That may hold a key to our goal.

May we reach it!

Todzo

* move well = currently (mid winter) 65% of 10,000 steps a day, PT, basic 8 at Snap Fittness, some Maximum Heart Rate based (85%) interval training (note: not for beginners).

** eat well = worked with a dietitian for several years + learned to cook while training as a commercial cook + ongoing studies and efforts

Guest wrote: Why not choose/try a better way to alleviate the spnea like losing weight or correct sleeping posture if it is effective?

Did you know that there are lots of skinny people with sleep apnea? Did you know that studies have found that sleep apnea often causes weight gain? Did you know that many overweight people with sleep apnea had the apnea first and the weight gain second?

I have had asthma and allergies all my life.My airways are smaller and have been all my life. My doctor determined that my asthma is because of my narrow airways, and that was back when I was a teenager, long before I started snoring. Or gaining weight.

Even as a child, I choked when trying to swallow pills. I am 40 years old now, and I still struggle with pills that most people can take without a problem. Nevermind big ones. I have to request small pills, or a liquid if the pills cannot be cut into pieces.

Any time I go to the dentist, the assistants have trouble doing xrays because my mouth is so small. I had 4 teeth removed when I was a teenager to make room for my teeth. Again, long before sleep apnea.

I have been a mouth breather all my life because my nasal passages are so narrow. Even awake and upright, I usually breathe through my mouth to get enough air.

I had to get a smaller headgear than normal because the regular one is too big for my head.

Losing weight will never make my airways wider. This is just the way it is. My cpap machine works great. The mask is comfortable. I sleep way better than I used to before cpap. Unless a real cure comes along, I will stick with cpap. I'm not interested i surgeries that only last a couple years, or some fad cure that solves snoring, but leaves the user blissfully ignorant of their sleep apnea. I am working on weight loss, but for other reasons. I don't expect it to cure sleep apnea since I've had narrow airways longer than the weight. And I know some very skinny people with severe sleep apnea.

Thank eveybody for your replies as above!

The wording by username Guest,*1,2,3 all done by me, I don't have a log name here, using "guest*" is just for easy. I am from China, a Sleep apnea patient.

Your comments/replies inspires me a lot of thinking and ideas.

Thank you again!

Wish you all a merry Christmas and happy new year!

Doug

Todzo wrote:I think you should continue to pursue your goal in spite of all the silly naysayers here.

Let them suck on those PAPs forever if they wish.

He's talking new age voodoo nonsense.

Do your CPAP if you want to live. Weight loss might help, but the odds are bad.

Weight loss and exercise are good things for your health in general, so go ahead and do that and any other healthy lifestyle ideas. Just don't expect it to cure your apnea.

zoocrewphoto wrote:

Guest wrote: Why not choose/try a better way to alleviate the spnea like losing weight or correct sleeping posture if it is effective?

Did you know that there are lots of skinny people with sleep apnea? Did you know that studies have found that sleep apnea often causes weight gain? Did you know that many overweight people with sleep apnea had the apnea first and the weight gain second?

I have had asthma and allergies all my life.My airways are smaller and have been all my life. My doctor determined that my asthma is because of my narrow airways, and that was back when I was a teenager, long before I started snoring. Or gaining weight.

Even as a child, I choked when trying to swallow pills. I am 40 years old now, and I still struggle with pills that most people can take without a problem. Nevermind big ones. I have to request small pills, or a liquid if the pills cannot be cut into pieces.

Any time I go to the dentist, the assistants have trouble doing xrays because my mouth is so small. I had 4 teeth removed when I was a teenager to make room for my teeth. Again, long before sleep apnea.

I have been a mouth breather all my life because my nasal passages are so narrow. Even awake and upright, I usually breathe through my mouth to get enough air.

I had to get a smaller headgear than normal because the regular one is too big for my head.

Losing weight will never make my airways wider. This is just the way it is. My cpap machine works great. The mask is comfortable. I sleep way better than I used to before cpap. Unless a real cure comes along, I will stick with cpap. I'm not interested i surgeries that only last a couple years, or some fad cure that solves snoring, but leaves the user blissfully ignorant of their sleep apnea. I am working on weight loss, but for other reasons. I don't expect it to cure sleep apnea since I've had narrow airways longer than the weight. And I know some very skinny people with severe sleep apnea.

For the past five or so years I have pursued doing my 10,000 steps a day - along eating well - sleeping well. I never have quite made it but to average over 100 miles a month.

My daughter and myself have noted that my chin has come forward notably. Not kidding here. Perhaps when you exercise you do indeed activate genes which make real changes in your physiology.

FWIW

Hi Todzo,

I am not sure I understand why you hate pap machines so much. This isn't like a doctor has prescribed a cocktail of meds that cause horrific side effects or a treatment that generally doesn't work.

You keep citing a 20% success rate after 1 year at 4 hours a night. Do you have a citation?

And even if that is accurate which I don't think it is, that wouldn't be a failure of treatment as meds are when they don't work. The machine does work in eliminating apnea but unfortunately, the system is awful as far as working with people to be successful.

However, that is an important distinction to make and to not do that is really not telling the whole story. I say that as one who is very distrustful of modern medicine in general.

By the way regarding the advice you give in reducing apneas, when I was working, I got plenty of exercise and obviously my stress level was reduced because I was employed. I was lucky if I slept on the machine more than 1.5 hours at most.

Now that I am looking for work, have more stress, and have gained a few pounds, I am up to 4 hours on the machine (as long as I don't fall asleep prematurely). Personally, I would rather devote my efforts to improving my sleep hygiene and seeing an ENT for my nasal congestion to get me past the 4 hour barrier vs eucapnic breathing that makes absolutely no sense to me.

And again, I say this as someone who is not opposed to alternative medicine. But just because it is alternative doesn't mean it is legitimate. I hold it to the same critical standards I do of mainstream medicine.

I do agree that not everyone can succeed in using a cpap machine even when they have given 100% and have had great support. But that wasn't the case with the OP.

Anyway, I greatly look forward to the day that I am sucking 6-8 hours a day on the pap machine

49er

Todzo wrote:

GUEST2 wrote:Thank you all, i am almost convinced to forget the idea to get rid of the machine.

However, i think the reasonable weight is some garantee to have a good health, not only for curing sleep apnea. Some statistics report can't be the excuse to reject the healthy living way.
Machine is machine, people can't be depending on a machine, it disobeys the nature law.

I think you should continue to pursue your goal in spite of all the silly naysayers here.

Let them suck on those PAPs forever if they wish.

I have found the following helpful:

reduce stress (50%)
eucapnic breathing and eucapnic PAP management (30%)
move well*(10%)
eat well**(10%)

My weight has consistantly come down after I started eucapnic breathing and eucapnic PAP management even though efforts were always consistently ongoing.

In February they are scheduled to publish some research where they tell what they believe to be the actual cause of Obstructive Sleep Apnea. That may hold a key to our goal.

May we reach it!

Todzo

* move well = currently (mid winter) 65% of 10,000 steps a day, PT, basic 8 at Snap Fittness, some Maximum Heart Rate based (85%) interval training (note: not for beginners).

** eat well = worked with a dietitian for several years + learned to cook while training as a commercial cook + ongoing studies and efforts

49er wrote:Hi Todzo,

I am not sure I understand why you hate pap machines so much. This isn't like a doctor has prescribed a cocktail of meds that cause horrific side effects or a treatment that generally doesn't work.

I do resent and feel kind of vulnerable needing to use CPAP – it is always a hassle and what if power becomes unavailable long term?

I would and I think we all would like to not need it.

That said I know I now need it and am glad to have it.

49er wrote:You keep citing a 20% success rate after 1 year at 4 hours a night. Do you have a citation?

Expert Interview: Dr. Carl Stepnowsky on CPAP Adherence August 21, 2012
http://doctorstevenpark.com/expert-inte ... -adherence
adherence rates: The MP3 @ starting at twelve minutes and twenty four seconds (condensed):
“Of 100 people who are diagnosed with Sleep Apnea and referred for CPAP 80 accept the CPAP, 40 continue at one year, of those 40 who continue after a year 20 are using it at the acceptable rate of 4 hours per night.”

49er wrote:And even if that is accurate which I don't think it is, that wouldn't be a failure of treatment as meds are when they don't work. The machine does work in eliminating apnea but unfortunately, the system is awful as far as working with people to be successful.

I am with you on that. Our medical system is simply busted!!

49er wrote:However, that is an important distinction to make and to not do that is really not telling the whole story. I say that as one who is very distrustful of modern medicine in general.

By the way regarding the advice you give in reducing apneas, when I was working, I got plenty of exercise and obviously my stress level was reduced because I was employed. I was lucky if I slept on the machine more than 1.5 hours at most.

Now that I am looking for work, have more stress, and have gained a few pounds, I am up to 4 hours on the machine (as long as I don't fall asleep prematurely). Personally, I would rather devote my efforts to improving my sleep hygiene and seeing an ENT for my nasal congestion to get me past the 4 hour barrier vs eucapnic breathing that makes absolutely no sense to me.

Eucapnic breathing retraining will probably help few. It takes too much effort.

For you I strongly recommend that you work with your doctor to establish EERS or obtain a new breathing volume aware machine (advanced ASV).

EERS: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

49er wrote:And again, I say this as someone who is not opposed to alternative medicine. But just because it is alternative doesn't mean it is legitimate. I hold it to the same critical standards I do of mainstream medicine.

I am simply sharing something I have found that works for me. I am also finding that others are finding the theory good. Consider what Dr. Barry Krakow mentioned concerning Dr Buteyko's theories which are all about eucapnic breathing:

Dr. Barry Krakow mentions that Dr. Buteyko's theories are being found to be true:

MP3 of (at 57:38) - Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea http://doctorstevenpark.com/expert-inte ... leep-apnea

49er wrote:I do agree that not everyone can succeed in using a cpap machine even when they have given 100% and have had great support. But that wasn't the case with the OP.

He simply would like to be off PAP – who really actually wants to be on PAP if they do not need to be anyway?

49er wrote:Anyway, I greatly look forward to the day that I am sucking 6-8 hours a day on the pap machine

49er

And I honestly wish you great success at that as I currently suck on mine about the same amount.

Have a great new year 49er!

Todzo

Todzo wrote: For the past five or so years I have pursued doing my 10,000 steps a day - along eating well - sleeping well. I never have quite made it but to average over 100 miles a month.

My daughter and myself have noted that my chin has come forward notably. Not kidding here. Perhaps when you exercise you do indeed activate genes which make real changes in your physiology.

FWIW

You may have toned up the area or reduced some fat, making it look like chin is more distinct. But exercise isn't going to make your jaw grow. I used to walk over 6 miles a day. I still had asthma, small airways, etc. Actually, my asthma was at its worst back then. Probably because it usually takes a combo of two triggers to set it off. Allergies and cold/dry air can easily set it off. Winters used to be pretty bad for me. I learned to avoid most of the triggers, so I can usually go months without needing my inhaler. But I will always have asthma, and I will always need to avoid triggers and be prepared with an inhaler.

For example, yesterday, some of the lasagne spilled over and started burning in the bottom of the oven. My parents didn't think it was a big deal as it smelled like burnt toast. I asked if we could open a door to vent out the smoke. No, it will clear. It's cold outside, don't want to open the door. I could feel my breathing get more difficult. It was just a burnt smell to them. It was bad air quality to me. By the time I got back from using my inhaler, they had a door open and a fan running. The air was much better. I did not advance to a full asthma attack. I knew to remove myself for the situation and use my inhaler before it got worse.

Years ago, went to an event that was in a building that had been flooded several months earlier. It looked clean, and as far as I know, nobody else had a problem with it. During the setup, I felt my breathing get more difficult. I used my inhaler. It helped, but not enough. I checked the date. It had been so long since I had had an asthma attack that I had let my inhaler expire. It was actually a year past the expiration date. I had to go to the doctor to get a new one, and I was diagnosed with an irregular heart beat.

I learned my lesson. Never go anywhere without a current inhaler. And use it as soon as I feel the symptoms. Never let it get bad. When I went on a my trip last September, I had 3 inhalers with me. I kept one in my hiking bag, one in my jacket, and one in my hip pack. I can avoid symptoms most of the time and feel normal. But it will never be completely gone. It is not something that goes away. And it can get worse when I am physically active. I also have to be careful when I exercise as that is one of my triggers. Hiking or rollerblading in hot/humid air or cold/dry air will set it off. Throw in allergies, and I am guaranteed to have problems.