Newbie would like to hear success stories, please.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Catnapper
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Post by Catnapper » Thu Oct 19, 2006 8:15 pm

Thank you to all who replied. These stories gave me much needed perspective on my problem. I certainly needed to be told to focus on the improvements instead of the bumps in the road. I have been busy feeling sorry for myself instead of finding what is getting better.
I will take the message to heart.
Thanks again.
Joanie - Catnapper

sleepinsound

Post by sleepinsound » Fri Oct 20, 2006 2:55 pm

Keep with it!

I was one of the "lucky" ones who had an amazing reaction at the beginning ... but that was only because I've probably had it since childhood and I'm 52. (Somehow that age part doesn't seem possible.) I was diagnosed in Jan and started treatment in March. The first 3 days I felt like superwoman. Couldn't keep up with myself, my brain moved at lightning speed, lots of other fun stuff. Better than drugs! (I guess... never tried them.) It was amazing.

I still felt great, and incredibly upbeat, for a long time afterward -- months. I had little ups and downs and there always seemed to be "something" that disturbed my sleep. However, overall I felt better, for sure.

Bottom line, I think it took me about 6 months to straighten things out. Over the last 6-8 weeks I seem to have a good handle on things (except for the week's vacation I took at home. My machine broke = 3 nights without a machine; got the machine but that night my cat had a stroke and I had to rush her to the emergency vet an hour away, got back at 2:30 a.m.; next night we had a horrible thunderstorm and the power went out, couldn't use my machine. So I didn't get any sleep until Friday night, just in time to go back to work....)

ANYWAY, I finally have a decent amount of consistency. I have definitely felt so much better all along, regardless of the minor problems. A lot of it is experimenting and getting help from people here. No racing heart at night, I feel great, I'm so much more alert, I feel like I can keep up with people.

My biggest problem was waking up to the disastrous life sleep apnea had caused. It was so much more easy to sleep through it! But you learn and you address things and you make a little bit of progress every day.

Recently I've just started exercising (and changing my eating habits) and I cannot begin to tell you how differently my body responds. I was disappointed before this; fool that I am, I thought getting treatment would start the weight coming down, but it didn't. However, exercise is incredibly easier, I really enjoy it, I feel wonderful, and my body is responding in almost a hyper-speed way.

I would never, ever, EVER go back to pre-treatment days! I do suggest getting a machine with C-Flex. I think that made my treatment easier right from the start. I also experimented with nasal masks vs full face masks; I really like the ff mask but it leaks too much. So now I have this funny little drama at night of getting all the other stuff ready, then Polidenting my lips. (My regular MD nearly fell off his chair when I told him about this). I look so glamorous!!

In the hot Jersey summer, having the CO2 whooshing on me was GREAT! In the winter, it's a little cold. I love the noise because it drowns all the other noise out

Keep at it; if at first you don't succeed, keep trying until you find what works for you. People here are just the best at helping Good luck!


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Lee Lee
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Post by Lee Lee » Fri Oct 20, 2006 4:59 pm

Today is my one year anniversary on APAP! One year since I finally forced myself to pull out the equipment I'd been given , read the directions, and put the thing on. I finally had finally given in to a sleep study after complaining to one of my 12 doctors that "something was wrong with the back of my throat." Also, my grown children had been concerned because "everything seems like such an effort for you, even walking across the room." I was positive I did not have OSA, and was shocked when I was diagnosed with moderate OSA.
I had a Swift mask at first and I hated it. I simply could not breathe against the air. I had sore nares, and terrible aerophagia. My chest hurt and the mask was very noisy. But I was determined to make this work. I went back to my DME, even though they were absolutely horrible, very unprofessional, no knowledge, rude, unresponsive, the list goes on. I made them fit me for another mask. The F&P 407 fit me well and even though I had read bad reviews about it, I tried it, and it worked. It was then I began to feel like I had actually slept well. Don't get me wrong, I still woke many times in the night to adjust everything, etc. It felt weird to have that thing on my face!
Rested Gal, who is a poster on this forum, and a very wise person, helped me to figure out that my settings were all wrong on my machine, and how to fix them. (Since I had complained to my DME about not being able to breathe with the Swift, she had drastically lowered my pressure no a non therapeutic level) Once that happened, I started to feel fantastic!
And...
I have lost 45 pounds.
My blood pressure is normal, and I'm off my BP meds.
My fibromyalgia is GONE.
The joint pains from my Lupus are gone.
I walk 3 miles a day, 5 days a week.
My GERD is gone. (still have reflux but that's a whole other story.)
My kids can't keep up with me.
My husband flirts with me again.

I actually like to put my mask on at night, because I know I'm going to feel good in the morning.

Don't get me wrong, I still struggle For some reason, some nights, it just doesn't go well. The mask leaks like a sieve some nights and is perfect others. I tape my mouth and sometimes it comes loose. Sometimes, despite the tape, my cheeks puff out with air. Sometimes, my reflux and sinus problems override the APAP.

It's a work in progress for me and will be for you. My advise is to read this forum daily, (as I do) and to not lose your resolve. You will learn much and benefit greatly, as have I.

I wish you the best.


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lbchan
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Post by lbchan » Sat Oct 21, 2006 12:28 pm

Hi Catnapper!

I'm pretty new to cpap, having just started using one two months ago. Even so, I'm noticing enough difference in how I'm feeling to have made a committment to continuing treatment.

For me, the change in energy level is a little subtle -- however the changes in my attitude and mood are really quite wonderful. I knew cpap was working for me when I found myself humming in the morning intead of my old-usual grumbling...and also when I realized that the normal, annoying, everyday problems we all face weren't looking like huge obstacles to overcome anymore. Way, way cool.

One caveat...if I hadn't learned so much about the difficulties associated with geting used to cpap on this forum, I might have never gotten to this stage of health. It was especially helpful for me to know that it can take a while (plus alot of $$, lol) to find the right mask and setup; the one that really works for you. Until you get that right, cpap can be a frustrating torture exercise; once you've got it down, it can be pretty sweet.

So don't give up -- and let us know how it's going!

Kim


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Moogy
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Post by Moogy » Sat Oct 21, 2006 7:48 pm

My success story:

Pre-therapy I was falling asleep a lot, including almost running off the highway. I fell asleep almost every day after work, and many days I took a nap at work (I work for my husband, so he couldn't fire me). My family had reported really LOUD snoring, for years.

I started therapy seven months ago. Within a couple of days the naps became much less frequent.

After the first therapy night, my husband commented that the snoring was GONE. I switched masks after a month or so, and then he commented that the machine and mask were now VERY quiet.

The doctor had given me a prescription to stay awake. After a couple of weeks of therapy, I was able to drop the pills except for long-distance driving. I kept using it for long driving trips for a few months, but now I am off of it entirely.

I stopped waking and going to the potty every 30 minutes to every 2 hours. Now I sometimes make it through the entire night.

I got the software after a few weeks, and the reports confirmed my good results. I went from over 100 AHI during the first test to under 5 regularly.

BiPAP therapy is the most successful, low-side-effect medical treatment I have ever experienced!

Moogy

Moogy
started bipap therapy 3/8/2006
pre-treatment AHI 102.5;
Now on my third auto bipap machine, pressures 16-20.5

Hiswife

success

Post by Hiswife » Sun Oct 22, 2006 11:51 am

My husband has been on CPAP for about as long as you have, after being diagnosed with severe OSA. The tech at his sleep study said "You'll definately be getting one of these!" in reference to the machine. Even so, he did not have the immediate, extreme results that some report here. He has been nearly 100% compliant. Although he had never thought he suffered from daytime drowsiness, he says that he is more clear headed and less foggy now. He'd never even realized that he was foggy, because he's had OSA pretty much all of his adult life. He is less sleepy later in the day, and he no longer falls asleep anytime he's sitting still. I can talk to him after the kids go to bed, because he's still awake! As his wife, I have noticed that he is more cheerful, has more energy to play with our young children, and has more patience with all of us. When he gets up in the morning, his color is good, instead of pasty and pale. I wouldn't say that CPAP brought about a monumental change in him, but it's made life better for the entire family. Best of all, he'll be around to see his grandchildren and spend his retirement with me--something I was less sure of before!! Stay with it--even if you're not seeing earth shattering, immediate results, those subtle changes will add up to a better, longer life.

Good luck,
His Wife


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Catnapper
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Thanks for all the encouragement!

Post by Catnapper » Sun Oct 22, 2006 12:48 pm

Hi everybody,
I am enjoying the success stories so much. Thanks to all who have shared with me. It sounds like I am not the only one who did not get that burst of energy the day after the first night on therapy.
In about 2 weeks I will (I hope) get the machine I want/need and another mask to try to find the right mix for me. That will be the 3 month mark. After reading lots of mask posts I have to conclude that the right mask is tough to find and probably the secret to success for lots of cpappers. Clearly people feel determined to make OSA therapy work. I am so happy to have found support and encouragement here.
Thanks again.
Catnapper

Ash

Re: Newbie would like to hear success stories, please.

Post by Ash » Thu Aug 06, 2009 11:16 pm

Have been using the Repironics A Flex for the past 2 Months.
The change was almost immediate. Though for the first 2 days i had to struggle to get the mask fixing right.

When i started off, the 90% pressure was around 17.9 cms for the 7 day & 30 day average
After about 2 months of usage the pressure requirement has dropped to 12.6cm for the 7 day average & 13.9 cms for the 30 day average.

Yes, I am energetic, dont dose off even while standing, Snoring has deifinitely gone, Wife does not have to sleep in the other room. I am able to remember things better, Become active & participate.......


regards

Ash

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SleepyT
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Re: Newbie would like to hear success stories, please.

Post by SleepyT » Fri Aug 07, 2009 5:49 am

Joanie,
I totally understand what you're looking for. I had hoped also that after a couple of weeks of CPAP, I would be my old self. However, instead I am coming back in tiny steps. For example, just this past week, I resumed cooking (instead of eating out). I really enjoy cooking...but lately, didn't feel like doing it. I take that as a positive sign the therapy is working. Other good signs...my blood pressure is the best it has ever been in my adult years. The nightly bathroom trips are down to 1 (instead of 3). Slow improvements over the course of 2 months...but great ones from a health standpoint. I am still struggling with being a space cadet...something that is completely foreign (and frustrating) to me. Cannot WAIT for that to phase out....but I remind myself....baby steps, baby steps.

Be sure to stick with it. Even if you think you're not making progress...you may be changing in minute ways. Good luck!

T.

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Catnapper
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Re: Newbie would like to hear success stories, please.

Post by Catnapper » Fri Aug 07, 2009 7:25 am

Wow, I was surprised to see this thread. I was this newbie about 3 years ago. I did stick with it and am still here, but much more successful. Once I found the right mask and right machine along with the heated hose, life improved for me. It also helped to hear these stories and the encouragement of my fellow hose heads.

My contribution here would be that I finally accepted the part about using the therapy for the rest of my life and quit fighting it. That happened over time. I became accustomed to the way the first few breaths were unnatural and scary, too. They still are, but I know from experience that I will be comfortable very soon.

Another big improvement in my life that I attribute to xpap is that I haven't had a sinus infection since I started, whereas I was constantly having them previously. I had sinus surgery and revision in 1995, so all the sinus cavities are open, and I believe the positive airway pressure keeps them somewhat dry so there is not enough moisture for infection to thrive. It may be my imagination, but I don't have any other explanation.

By the way, I am 100% compliant in spite of the bumps in the road at first.

Catnapper - Joanie

jand02659
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Re: Newbie would like to hear success stories, please.

Post by jand02659 » Fri Aug 07, 2009 7:36 am

Like many of the other responders, I'm still tweaking after over a year with my CPAP. It hasn't always been easy and still have some nights when I wake up because the mask is leaking or uncomfortable, BUT, when compared to what I now realize I (and my husband)was putting up with before the CPAP I regret not doing this before. How many brain cells did I destroy because I wasn't getting enough oxygen? The awful headaches are gone. I'm not always nodding at my desk at work. I tried to sleep normally one night when I was visiting and forgot my machine....I realize how much I was affected by the apnea...I barely slept at all, waking up gasping all the time...I guess I am more attuned to the stoppages now that I don't have them anymore. A lot of us look silly going to bed, propped up on pillows, elephant nose, etc. but the benefits definately outweigh the negatives. Hang in there!

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katherinefulmer
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Re: Newbie would like to hear success stories, please.

Post by katherinefulmer » Fri Aug 07, 2009 10:34 am

This is such a wonderful thread! Let's keep it sticky.
Katherine Fulmer
Product Development Analyst
katherine.fulmer@cpaptalk.com

Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward. - Kurt Vonnegut

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Engransan
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Re: Newbie would like to hear success stories, please.

Post by Engransan » Fri Aug 07, 2009 12:00 pm

Sent my first machine back to the DME due to severe claustrophobia during my sleep test and after receiving my machine. Luckily met my sleep Doc by accident and he inquired about my progress. When I informed him he insisted that I try again. Took me awhile to get accustomed to the mask and another eight months of mask swaps and machine adjustments with the software to finally settle down to a good nights sleep. Unfortunately I had delayed treatment too many years and still required bypass surgery. I am now a different person with much more energy and fully awake thanks to CPAP. Don't give up and your day will come.
Engransan
"OLD AGE AIN'T NO PLACE FOR SISSIES"

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PST
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Re: Newbie would like to hear success stories, please.

Post by PST » Fri Aug 07, 2009 12:17 pm

I've had many of the same benefits others have had, but let me mention one I haven't seen much.

If you had asked me before CPAP what time I went to bed and what time I got up, I couldn't have answered. I know that, because the sleep lab's questionnaire asked and I couldn't answer. It was like locating the edge of a fogbank. I would go to bed early, then read, watch TV, and doze. I was up often to use the bathroom, and I might pick up a book instead of going back to sleep. The dozing got more frequent in the wee hours, but I lacked any structure to my night.

One thing I didn't like about CPAP is that I didn't think I could wear my glasses with the mask, and thus couldn't do anything. That definitely falls into the category of "that's not a bug, it's a feature." Now when I put the mask on, I turn out the light and I go to sleep. Period. I follow the advice that if you can't sleep after 15 or 20 minutes, get up. That hasn't happened more than a couple of times, though. For the most part, CPAP has made me adopt rational sleep habits, almost as a side effect of its primary role of keeping my pharynx open. Of course I can see how apnea and raggedy sleep patterns are related, but there is a behavioral effect for me that goes somewhat beyond that.

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MoneyGal
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Re: Newbie would like to hear success stories, please.

Post by MoneyGal » Fri Aug 07, 2009 2:41 pm

I have one of those miracle stories and my therapy worked from the first moment I tried it (when I got my machine, my doctor told me to go home and take a nap. "Don't wait for tonight. Go home and go to sleep.") I got up from that nap and said to my husband, "WHO KNEW? Naps can be REFRESHING!"

It would be hard for me to list all the ways in which xPAP therapy has improved my life. You can search my posts to see. There's a good one of me breaking a board in my grading for my blue belt in Tae Kwon Do.

I'm six months in and I am still finding new areas where I am improving. My mental capacity has increased TREMENDOUSLY. This is critical to me - I am working as a software developer and documentation specialist in a startup financial software company. I could not have done this job before (in fact, I had quit and lost a succession of jobs over the years before I was diagnosed). I can handle complex, multi-step projects and equations. The fact that I even had the confidence to apply for this job (earlier this year) and that I actually got it (very, very steep competition) is largely attributable to successful CPAP treatment. In addition, I cycle to work and back - that's over an hour every day, and this would have been utterly unthinkable for me prior to my diagnosis.

I can stay up late and do things. I entered a marmalade-making contest. I do Tae Kwon Do. I watch late movies with my husband. Over the last few weeks, I have started to undertake projects that have languished for YEARS. (Seriously. I went to a beading class with my daughter and made necklaces out of beads I purchased for this purpose nearly 15 years ago. I started refinishing a dresser I've been "meaning to get to" for almost a decade.)

I have only ever said this once out loud but in the months before diagnosis I was slowly preparing to die. I didn't know what was wrong, I just knew there was no way I could really continue to live my life like this. I would pick up my kids from daycare - one block from my house - and then phone my husband crying, saying that I didn't think I could make it home. (When I look back, it is a mystery to me why I went undiagnosed for so long.) I was slowly shutting down. I was finally diagnosed when I couldn't keep my 02 levels above 90% no matter what I did. (At all times, I passed the Epworth Sleepiness Test with flying colours. I was never "sleepy" and I never fell asleep driving or in any other circumstances.) The initial thoughts from my doctors were first pneumonia (which I had had very severely many times) or a heart problem. The sharp lung tech I went to see asked about morning headaches and immediately scheduled a sleep test for me on an emergency basis.

When I see people now who haven't seen me for a while, they ask what happened. "You look younger," they say. When I look at pictures of myself from before treatment I am shocked at how worn out I look. When I look at pictures now I feel happy and proud. I am taking care of myself every day. All the energy I was spending just to keep alive is available to me now for things *I* want to do. Life is rich and full and multicoloured. I said right after treatment (on this board) that it was as though I was driving around with a muddy windshield and then someone cleaned it. I am so grateful for my diagnosis and for xPAP. It literally saved my life.