Am I stuck with this thing for life?

Big S · Post by **Big S** » Mon Jan 24, 2011 9:08 am

Another great post! Kahfree, you must've had a good nights sleep!

Kahfree · Post by **Kahfree** » Mon Jan 24, 2011 10:01 am

Big S wrote:Another great post! Kahfree, you must've had a good nights sleep!

Last night I actually did better, slept 4.5 hours with the mask and hose. I dont feel rested though...not sure why. My unit did not record correctly because it has not changed some of its data. It says 6 nights. It should say 7. It did not change the AHI, LEAK, or percentage of nights over 4 hours. I hope its not defective!

ladylucy · Post by **ladylucy** » Mon Jan 24, 2011 11:11 am

This is my first post here. I just got my CPAP machine at the end of December. What a Christmas gift! Groan.
I was also thinking the other day that I don't want to be stuck with this thing for the rest of my life.
I used to wake up gasping for air as a child.. not too often, but I clearly remember it. I was never overweight until I started having kids in my late20's to mid30's. A few years ago, I started menopause at 47 and gained about 5 lbs. After being on a medication for headache prevention that caused me to lose weight and stay thin for a number of years, I suspected that drug was causing my tinnitus, so I went off of it a year ago. I gained 10 more lbs (and still have tinnitus). Now I've started a new drug that is known to cause weight gain, and I've gained 5 more lbs. Not up to my highest ever weight yet, but creeping dangerously close. (Sadly digging out my bigger clothes ) During this weight gain period, I've noticed an increase in my sleep apnea problems. If I fall asleep on my back, whether lying flat or inclined, I will inevitably stop breathing and wake up, sometimes with a single snore. This even occasionally happened when I was thinner... although a sleep study did not find that I had sleep apnea then. Back then, the medical personnel were surprised to see me being tested because I was not overweight and didn't have a big neck. BUT now that I've gained 20 lbs, I stop breathing and snore more, even when I sleep on my side. I was tested again and found to definitely have OSA.
I was thinking the other day that maybe if I lose this weight again, my night breathing will improve. So since I hate this machine and have failed to find comfort and effectiveness with three different masks, my next goal is to lose some weight and maybe get sleep studied again. (I know the machine will probably take some time and experimentation, which I won't give up on.) If losing weight doesn't work, I'll keep up the machine.
This is a very helpful forum. Thanks to everyone for sharing.
Lucy

Sleepy Taz · Post by **Sleepy Taz** » Mon Jan 24, 2011 4:23 pm

Treppenwitz,

“Am I stuck with this thing for life?”

The answer to this question is as simple as what quality of life do you want to have? Sleeping without treatment puts undue stress on all of your vital organs. In time this stress will affect them in an adverse way such as cardiac problems and high blood pressure. People die from strokes that could have been prevented just by hosing up every night. Others have heart attacks for the same reason. There are some on here who have already had these problems and are improving just because they use their Cpap. To go along with the health problems will be the stress of how you will pay for the procedures that will be necessary to keep you alive.
Look, I have been doing this for over 20 years and at 54 I would probably be dead now if I didn’t use my Cpap. Yes, there are nights when you would rather sleep on a bead of nails but the longer you use it the less frequently they occur. It is your life and you need to make the decision but as the Knight said to Sean Connery “choose wisely”, in the end you will be much happier that you did.

DocWeezy · Post by **DocWeezy** » Mon Jan 24, 2011 4:50 pm

I'm so very envious, Taz....I'm also 54 and I WISH I'd been using a CPAP for 20 years now. If I had, I think my life would have been different, and I at least would have felt better for much of it. Looking back, I think my apnea started in my teens, with the same symptoms as others mentioned. I was a tall and skinny kid, but always tired and ALWAYS had dreams of suffocating and would wake up in a panic with a pounding heart. I just thought I had a lot of bad dreams. It escalated in my 30s when reflux was added to the night time fun, and that was when I started putting on weight. When my knees became bone-on-bone in my late 30s and my activities were severely curtailed because of pain, weight gain escalated because I didn't adjust my eating from a formerly very active lifestyle to one that was pretty sedentary.

Funny, I LOST 70 pounds in the past two years after my knee replacements, and my apnea got WORSE, to the point where I was afraid to go to sleep. Hubby was telling me that my not breathing was waking him up--my snoring didn't bother him, but my stopping snoring would wake him up and he would then wake me up to start me breathing again. That's when I went to a sleep doc. AHI was 56 during the sleep study...would stop breathing for 60 to 120 seconds.

I'm almost three months into treatment now and it has been a battle. But I wouldn't trade it for anything because now I can go to sleep and not be afraid of the suffocation "dreams." Sheesh...all those years and I wasn't really dreaming at all!

My lifelong exhaustion hasn't left yet, but every day I feel a teeny tiny bit better. The increments are so small that I can't really tell from day to day, but when I look back to the beginning, I realize that I do feel better. I'll be glad when I'm a couple years down the road and can look back in amazement at how my body withstood nightly suffocation for almost 40 years, and how I managed to work, go to school, and have a life during that time. And from that vantage point, I'm sure I'll be equally amazed at the energy and sense of well being that I will have because my body will no longer be struggling just to stay alive, but have the full benefits of restorative sleep and good health.

I'm happy to be alive to be "stuck" with this thing for life!

Weezy

avi123 · Post by **avi123** » Mon Jan 24, 2011 7:36 pm

Wrong post. I thought that Doc wrote it as a reply to treppenwitz and shortened the name to Taz.

treppenwitz · Post by **treppenwitz** » Tue Jan 25, 2011 1:05 am

Thanks to everyone for your responses. I've been home sleeping off the flu (a gift from my kids) and haven't been up to checking the computer.

I guess I'll take things day by day and see what happens. One thing is for sure... I feel well rested now for the first time in years, thanks to the CPAP.

But I guess you know what I'm talking about.

Sleepy Taz · Post by **Sleepy Taz** » Tue Jan 25, 2011 7:48 am

avi123 wrote:
DocWeezy wrote:I'm so very envious, Taz....I'm also 54 and I WISH I'd been using a CPAP for 20 years now. If I had, I think my life would have been different, and I at least would have felt better for much of it. Looking back, I think my apnea started in my teens, with the same symptoms as others mentioned. I was a tall and skinny kid, but always tired and ALWAYS had dreams of suffocating and would wake up in a panic with a pounding heart. I just thought I had a lot of bad dreams. It escalated in my 30s when reflux was added to the night time fun, and that was when I started putting on weight. When my knees became bone-on-bone in my late 30s and my activities were severely curtailed because of pain, weight gain escalated because I didn't adjust my eating from a formerly very active lifestyle to one that was pretty sedentary.

Funny, I LOST 70 pounds in the past two years after my knee replacements, and my apnea got WORSE, to the point where I was afraid to go to sleep. Hubby was telling me that my not breathing was waking him up--my snoring didn't bother him, but my stopping snoring would wake him up and he would then wake me up to start me breathing again. That's when I went to a sleep doc. AHI was 56 during the sleep study...would stop breathing for 60 to 120 seconds.

I'm almost three months into treatment now and it has been a battle. But I wouldn't trade it for anything because now I can go to sleep and not be afraid of the suffocation "dreams." Sheesh...all those years and I wasn't really dreaming at all!

My lifelong exhaustion hasn't left yet, but every day I feel a teeny tiny bit better. The increments are so small that I can't really tell from day to day, but when I look back to the beginning, I realize that I do feel better. I'll be glad when I'm a couple years down the road and can look back in amazement at how my body withstood nightly suffocation for almost 40 years, and how I managed to work, go to school, and have a life during that time. And from that vantage point, I'm sure I'll be equally amazed at the energy and sense of well being that I will have because my body will no longer be struggling just to stay alive, but have the full benefits of restorative sleep and good health.

I'm happy to be alive to be "stuck" with this thing for life!

Weezy

Doc, I wished that you and Taz could shmuz some more.

How old are you? DocWeezy was relaying how it took her longer to get diagnosed and because of that she suffered much more than she would have if they found out about her Apnea earlier. I suggest that if you do not have anything constructive to add to the discussion you keep your thoughts to yourself and if you must post something at least be polite.

sardu1 · Post by **sardu1** » Tue Jan 25, 2011 8:06 am

I've been sentenced to the CPAP machine since being diagnosed with severe OSA in August. I managed to convince my GP to hold off to first see if I could get my weight down some but finally gave in in December and went on the machine.

First, my weight gain was due, mostly, to suddenly becoming hypthyroid (at 54). It shot up 30 lbs seemingly overnight (really, about 2 weeks from 245 to 271), plus several other fun symptoms. It took my doctors 5 months to figure out what I had, put me on synthyroid , etc. Since August my weight has been pure fun, but I am now down to 242. However, the hypo still makes steady weight loss hell and reduces you to tears (fun for a grown man) as it goes up and down literally each day regardless of what you do with diet and exercise. It's a slow torture, almost as bad as living through the Reagan years.

I mention those things to frame where my mindset was when I finally agreed to go on the CPAP in December. I too was motivated 'not' to use it and lose weight. And still am. I understand many folks out there swear by the thing and love it, while others, a large majority of people, barely tolerate CPAP (et al..)or hate it. I guess I'm somewhere in the middle. People will be all over the place on the subject mostly based on how severe their OSA was, but according to experts there is also a strong 'placebo' effect as hooking up to something as drastic to your lifestyle as a CPAP machine produces some results. Others hate and toss it out the window, or at least across the medical supply store counter.

Since using it I've tried two masks, both 'nose' related, one a pillow (which I use most of the time). I wake up 3-4 times each night to adjust or fix the mask or machine. I am not as tired as I was but am still not anywhere near normal in terms of energy or mood. I attribute that mostly to the hypthyroid condition, which is still not under control via the meds. My dr's had advised me to try the machines for its benefits to sleep, energy, etc and that it should help lose weight. So far, since I've been on the machine (one month) I've lost a net of 2 lbs.

Overall, I can see why some people might love the machine and what it can do. I am one of those persons who's OSA more than likely came on quickly via the sudden weight gain from the hypo and, I am hopeful, will go away once I am able to get my weight down to where it should be, around 175. That alone is a big goal, but, with some luck I am hoping to reach it.

That said I really wish you the best and hope you will stay with your weight loss program. Everyone here has their own thoughts on your question, but I'd leave it up to you and your doctor as to how much weight loss can reduce your needing to use CPAP to live. My sleep dr told me that it's common for people who lose weight to have reduced apena issues and, eventually, reach a level where they don't need a machine. But, and always but, it requires you keep your weight down and lead a healthly lifestyle, something that many folks on the machines either can't or won't do. Regardless, we're all in the same boat here and wish everyone the very best in their journey through OSA.

avi123 · Post by **avi123** » Tue Jan 25, 2011 6:44 pm

sardu1,

posters are posting with no indications to whom.

Is it to Treppenwitz?

If you got a hypo then it's probably:

http://www.mayoclinic.com/health/hashim ... se/DS00567

, and easy to take care of it with Rx. As long as it's ordinary.

I lost weight before I started CPAPing.

Now, while on it I think that I started to gain back.

avi123 · Post by **avi123** » Tue Jan 25, 2011 6:50 pm

treppenwitz wrote:Thanks to everyone for your responses. I've been home sleeping off the flu (a gift from my kids) and haven't been up to checking the computer.

I guess I'll take things day by day and see what happens. One thing is for sure... I feel well rested now for the first time in years, thanks to the CPAP.

But I guess you know what I'm talking about.

David (Treppenwitz), I would not be surprised if you got the flu from the CPAP.

I have no young kids at home but my nose is often runny from that beast (chaiduckim!)

scrapper · Post by **scrapper** » Tue Jan 25, 2011 6:56 pm

from avi123
David (Treppenwitz), I would not be surprised if you got the flu from the CPAP.

This isn't even possible..........people can get sore spots from masks, become congested from humidity or the lack thereof, lose or gain sleep utilizing a cpap.............but they CANNOT GET THE FLU FROM A CPAP.........

SleepyT · Post by **SleepyT** » Tue Jan 25, 2011 8:11 pm

well...i agree with some of the other posters. it's all about attitude. you can either be 'stuck' with it....or grateful to have a life saver such as CPAP. but i believe it is normal to be angry, grieve, deny....etc. but finally it is best if you accept things and feel blessed there is a fairly easy fix! CPAP has only been around since 1981. be glad you were born in this era of CPAP treatment! but i am not beating you over the head. i understand how you feel...and have felt the same way. heck....i expect to feel that way again...on and off. it's a process!

Kahfree · Post by **Kahfree** » Tue Jan 25, 2011 9:07 pm

SleepyT wrote:well...i agree with some of the other posters. it's all about attitude. you can either be 'stuck' with it....or grateful to have a life saver such as CPAP. but i believe it is normal to be angry, grieve, deny....etc. but finally it is best if you accept things and feel blessed there is a fairly easy fix! CPAP has only been around since 1981. be glad you were born in this era of CPAP treatment! but i am not beating you over the head. i understand how you feel...and have felt the same way. heck....i expect to feel that way again...on and off. it's a process!

Really, cpap has only been around since 1981? What did they do for people before that, or did they only recently in the last 30-40 years discover Sleep Apnea?

jweeks · Post by **jweeks** » Tue Jan 25, 2011 9:38 pm

Kahfree wrote:
SleepyT wrote:well...i agree with some of the other posters. it's all about attitude. you can either be 'stuck' with it....or grateful to have a life saver such as CPAP. but i believe it is normal to be angry, grieve, deny....etc. but finally it is best if you accept things and feel blessed there is a fairly easy fix! CPAP has only been around since 1981. be glad you were born in this era of CPAP treatment! but i am not beating you over the head. i understand how you feel...and have felt the same way. heck....i expect to feel that way again...on and off. it's a process!

Really, cpap has only been around since 1981? What did they do for people before that, or did they only recently in the last 30-40 years discover Sleep Apnea?

Hi,

Sleep apnea has been around for a long time. There are a lot of folks from history who have had it. It was known as Pickwick Syndrome for a while. It was only in the 1960s that it was understood to be a breathing issue, and the first treatment was available. That was a trache. It was thought to be relatively rare until recent decades.

I went to the doctor for daytime awake issues for the first time in the mid-1980s. I was told to eat a chocolate donut for breakfast and drink a lot of caffeine. I went again in the mid-1990s, and this time I was told that if I indeed did have a sleep disorder, I'd probably die before I got an appointment for a sleep study. Fortunately, I had a much more enlightened doctor when I went back again in 2008, but by that time, I was all but disabled since I was falling asleep once every few minutes all day long. CPAP has been a miracle cure for me.

-john-

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