Long term effects of its use

gpk111 wrote:John,
Great job answering BTP. You displayed insight, wrote with clarity and showed patience beyond mine.

And he exudes empathy. See:

viewtopic.php?f=1&t=50945&p=468820&hili ... hy#p468820

Truth behind talking points wrote: I am fairly young, and the idea of being slave to a machine for the next 60 years of my life is a scary one.

You later said you were 41 and when I read that, something came to mind...I will be 52 next week...I was diagnosed two months ago but my doctor told me that my OSA is so severe that I've probably been suffering for over ten years.....What I would give to have those ten years back...ten years where I was barely functioning...ten years that I thought I had Alzheimer's because my memory was getting so bad.....ten years that I have viewed myself as a lazy slob because I couldn't manage to clean my house without getting totally fatigued....ten years that I was an emotional basket case. What I am trying to say is try not to think of it as being burdened for the rest of your life...but instead think of it as a rebirth. I am so very thankful that I was finally diagnosed and even more thankful that I have adapted so well to my treatment. My life is finally getting back to normal and I am amazed at how much better it is a mere two months later. I will gladly live the rest of my life sleeping with a mask in order to continue to live my life to the fullest once again.

Debo,
What an inspirational note.

There are so many caring and intelligent members on this Board. As I read your note, it occurred to me that there must be many out there who suffer from the same symptoms you describe and have never heard of OSA or xPAP or those who are not fortunate enough to have access to this type of information or technology.

We're fortunate indeed. Thanks for reminding us.

Beyond Talking Points,

While there may not be any studies of the effects of using a Cpap long term there are many like John Fisher and myself who have been using this therapy for over 20 years. I was 31 when diagnosed and there are many on this board in their 20’s so at 41 you are probably at the right age, not young. In my 20 + years I have been 100 % compliant, and do find it difficult to fall asleep without my machine. There are other reasons besides being addicted such as my sister who died of a stroke and her doctor telling me that it probably wouldn’t have happened if she used her Cpap regularly. She was 49 years old! If you do indeed have sleep apnea then it would be in your best interest to use a Cpap whenever you sleep, even going so far as to have a battery backup in case of power failure. You may indeed never have a problem without it but there is always that chance and for me I would much rather keep the odds in my favour.
As far as being a slave to my Cpap, this is so untrue. I look forward to putting on the mask just like I look forward to putting on my glasses in the morning. I encourage others who I see struggling with excessive tiredness to get a study, and for those who are diagnosed offer my experiences and support so that they can reap the benefits like I do. In the end it is your body and life, and you will need to make the ultimate decision on what if any type of therapy you will use. Whatever you decide will shape the quality of life for you as you enter your golden age if you make it that far. I am not trying to use fear to motivate you only facts, which carbonman was doing in a subtle way.

Good luck
Taz

[quote="debo415"..I will be 52 next week...I was diagnosed two months ago but my doctor told me that my OSA is so severe that I've probably been suffering for over ten years.....What I would give to have those ten years back...ten years where I was barely functioning...ten years that I thought I had Alzheimer's because my memory was getting so bad.....ten years that I have viewed myself as a lazy slob because I couldn't manage to clean my house without getting totally fatigued....ten years that I was an emotional basket case. .[/quote]

OSA is like my boss' "boil the frog " analogy. You put the frog in water and slowly turn up the heat and it will never know what killed it. He kept using it to try and get us to understand that this was the best way to instill corporate change (new software applications in our case)
Sleep apnea is like that - your body adapts at first and only your SO may notice it. The changes may be to subtle to see at first. Lack of sleep affects Emotions, memory and logic subtly. Then physical tiredness and getting sick a lot. The mental effects get stronger and the depression prevents people from following up on the symptoms. Everything thing is subtle and hidden until it is almost too late to get out of the water and a lot of damage has happened. A lot of people die before it comes to a boil.

I was boiled for like 25 years before I was prompted to jump out of the pot.

SleepingUgly wrote:... John, are you thinking of a particular surgery when you say that? I would hesitate to say that the success rate of surgeries for apnea are very poor. ...

Your points are well taken. My own thoughts on this are biased based on the experiences of friends and acquaintenances. I've known about 10 people who had various surgeries (mostly UPPP). *EVERYONE* of them had minimal or no benefit from the surgery. One had to have a trach procedure done because CPAP was no longer an option. Yuck!

You are correct that better screening can yield a higher success rate. The surgeons need to be willing to say "no" if it appears surgery should not be attempted. And I fear the cynic in me suspects that is not likely to happen.

And there are surgeries that do definitely help. My brush stroke was pretty wide. Surgeries to help the airflow through the nose. Surgeries to remove tonsils and the like in the throat. All of these have excellent success rates. So, yes. The unfortunate experiences of my friends led me to over state the situation.

So, yes. With a good surgeon and careful screening, such procedures can help. However, in such a situation I tend to ask who is being served by the surgery. Who will benefit the most? Again the skeptic in me notes "Follow the money!" And in that case, unless there is a CLEAR indication the surgery will definitely help straighten and open the airway ... hold onto your wallet.

Beyond, here is an abstract of a study (with pretty small sample size) regarding evolution of mild apnea:

http://www.websciences.org/cftemplate/N ... D=20066492

Without the entire article, I am very curious how they diagnosed the apnea in the first place. As I've noted, there is night-to-night variability, so someone can be categorized as "mild" one night, "severe" another, etc. If they only had one PSG for the initial diagnosis, the category they fall in may be fairly arbitrary. I can't imagine there is any other explanation for the 11% that were "cured" with no treatment (and I wonder if they would be "cured" if they tested them a 3rd time).

There must be other studies like this out there.

I have been on CPAP for 3 years now......I am only 29. I was diagnosed with severe sleep apnea at 26, but had been having symptoms for as long as I can remember. Hindsight is 20/20 I guess. After looking over past medical records and seeing some disturbing notes regarding my O2 readings from a surgery when I was 15 it appears I have likely had this for most if not all of my life. I was not a fat child, I was usually underweight.

It is hard to find out that you may need to sleep with a machine for the rest of your life. You think it is hard at 41...imagine hearing it at 26. It sucked, and I researched and weighed my options. I have a 5 year old daughter, and the day after my first night on CPAP was the first day of her life that I was able to fully enjoy playing with her. That is what sold me on CPAP.

I wanted to answer your question about napping without CPAP. I have a hard time with it....but I have a theory as to why. Before I had no idea I was having apneas...it was such a normal part of my sleep that it didnt register, I didnt know what a real night of peaceful and deep sleep was like. I had spend my entire life sleeping this way. Then CPAP came along. Now I sleep so well with my machine that I dont wake up at all, I get restful sleep. So now when I try to nap and an apnea strikes it wakes me up fully. I notice it. I know what good sleep feels like....which means I can also more easily recognize bad sleep. Oddly my own snoring, snorting, and gasping is loud enough to wake me as well...I guess I got used to sleeping without all that noise. So now I find that it is hard for me to nap without my machine. In my 3 years I have only missed 3 nights on CPAP....and one of those doesnt really count, because I stayed up till 9am then slept throughout the day.

As a side note.....watch your daughter sleep. I have read that children of apnea sufferers are more likely to develop it themselves. I never want my little girl to live with this. In many children simply having their tonsils removed can cure their apnea and stop it in its tracks, this does not typically work in adults. I am NOT saying your daughter has anything like this...just keep an eye out.

Sorry if I am rambling. It is 2 am and I slept in then had Dr Pepper with dinner. I cant sleep....but am just tired enough to be a bit long winded.

Jennmary,
Thanks for that enlightening post ..and theory. I'll keep it in mind as I progress through this wilderness with vines and hoses wrapped around my head.

Sleepless in Florida.

BlackSpinner wrote: "Yes you can sleep without the machine but you will have apneas. Plus your body habituates to apnaes and when you use a cpap machine it stops doing that, so though the apneas may be no worse when you stop using the machine your body will react much more negatively to the lack of oxygen, rather like someone who has spent a year at sea level suddenly moving to the Andes."

We just returned from a cruise (at sea level--see above) to Chile where we took a tour to Lauca National Park at 14,500 ft. in the Andes. My husband had been using a CPAP for about 8 weeks. I had been recently diagnosed with "very bad" apnea but was unsuccessful using my new CPAP. On the tour (with a group of over weight/out of shape people) my husband was the first to feel sick and ask for oxygen. He's a former fighter pilot and a TOUGH man. I, on the other hand, walked around and purchased food for the sick-feeling passengers in our van and felt surprisingly good. I remarked that it was probably because my body was used to being oxygen-deprived. Apparently, that was the case.

I awoke this morning at 5:00 after only four hours of "sleep." It had occurred to me while laying in bed that maybe there was a website support group for CPAP users but I had to write it down before I walked downstairs to boot up my computer. Otherwise, I'd forget why I'd booted it up. I am exhausted. I found this wonderful website. I'm hoping I will find the answers I need to why my CPAP machine isn't working for me. Thank you all so much for your posts. You are a lifeline.

Hope1952 wrote: I awoke this morning at 5:00 after only four hours of "sleep." It had occurred to me while laying in bed that maybe there was a website support group for CPAP users but I had to write it down before I walked downstairs to boot up my computer. Otherwise, I'd forget why I'd booted it up. I am exhausted. I found this wonderful website. I'm hoping I will find the answers I need to why my CPAP machine isn't working for me. Thank you all so much for your posts. You are a lifeline.

Welcome to the forum, Hope. Join us, by registering (it's free) and listing your equipment. Then when you ask questions, we will know what you are using. If you feel like it, start a new post, to introduce yourself. Sometimes a post added to the end of a long thread like this one, gets missed.

debo415 wrote:

Truth behind talking points wrote: I am fairly young, and the idea of being slave to a machine for the next 60 years of my life is a scary one.

You later said you were 41 and when I read that, something came to mind...I will be 52 next week...I was diagnosed two months ago but my doctor told me that my OSA is so severe that I've probably been suffering for over ten years.....What I would give to have those ten years back...ten years where I was barely functioning...ten years that I thought I had Alzheimer's because my memory was getting so bad.....ten years that I have viewed myself as a lazy slob because I couldn't manage to clean my house without getting totally fatigued....ten years that I was an emotional basket case. What I am trying to say is try not to think of it as being burdened for the rest of your life...but instead think of it as a rebirth. I am so very thankful that I was finally diagnosed and even more thankful that I have adapted so well to my treatment. My life is finally getting back to normal and I am amazed at how much better it is a mere two months later. I will gladly live the rest of my life sleeping with a mask in order to continue to live my life to the fullest once again.

debo145

I also had all your symptoms IN SPADES (yikes)

Two months ago I fell asleep at the wheel on the interstate(very lucky no real damage). That and a skinny friend of mine diagnosed with severe central apnea and congestive heart failure finally motivated me to get tested.

I have had my machine since March 18, 2010 and I cannot believe the difference that it has made in my life!

I get better day by day. I am currently having problems with my allergies but I will get that fixed too!

I get up each day and I can't wait to get on with life! I probably gave up about 10-15 good years where I could hardly function, but I am not looking back!

So I say, "Amen sister" You can have my CPAP machine when you can pry it from my cold dead hands!! (my apologies to the NRA )

Cheers,

Dave

Hope1952 wrote:...I remarked that it was probably because my body was used to being oxygen-deprived. Apparently, that was the case...

Yup. At altitude, the body adapts by increasing the number of red blood cells (RBC), the hemocrit, and the RDW...people with untreated or poorly treated apnea have the same body adaption to deal with their nightly oxygen desaturations (deprivation). I got an APAP last Nov and finally all three of those are in the normal or just-skimming normal range. My first 2.5 yrs using CPAP did not treat me effectively...the "joys" of using a data-less CPAP and being clueless

KatieW wrote:Welcome to the forum, Hope. Join us, by registering (it's free) and listing your equipment. Then when you ask questions, we will know what you are using. If you feel like it, start a new post, to introduce yourself. Sometimes a post added to the end of a long thread like this one, gets missed.

Thank you, Katie. I have registered now and I'm trying to figure out how to add my equipment.
Jane