Newbie would like to hear success stories, please.

[aeonswife]

Just wanted to say thank you to everyone who shared their successful (and some not so successful) stories. I am a newbie here, just diagnosed with OSA last week. Was touring around the internet looking for information, and came across this great forum. I'm so inspired by everyone willing to help out us newbies with their posts.

So, about me. I like to joke that I turned 30 and my body fell apart. It certainly felt that way. Arterial disease (leading to the almost amputation of my left leg), hypertension, weight gain, depression, exhaustion. I was no longer the healthy happy person I was in my 20's. And the snoring! My poor husband has had to listen to it for 13 years. After the past 2 years of invasive and time consuming testing, one of my 5 specialists (!) finally sent me for a sleep study. The results shocked and scared me. I won't share the actual numbers, but the sleep doc did say I was his champion snorer for the past 10 years, only beaten by a man in his 60's.

I had been told since I was a child that I often stopped breathing while sleeping. My father can remember holding me on his chest while I slept as a baby, to make sure he could make me breath again. The doctors at that time said it was normal. I can remember being teased at sleep overs and camps for my snoring. But I had no clue, until sent for a sleep study two weeks ago, that there was a problem.

I'll be going in two weeks for my "fitting night" at the sleep clinic. Then I will have my own machine. I am actually quite excited. Those numbers on the sleep study scared me.
So, once again, thanks everyone for sharing your stories. They have been a great inspiration to keep with it. I'll add machine/mask info. when I have them.

[KellyR]

Hey there, my name is Kelly and I am new here, too. Last night was my first night with the CPAP machine. Egad. I am exhausted...like, seriously.

I have heart disease, had a heart attack when I was 37 (I'm 44 now), have a chronic bladder pain disease called interstitial cystitis (IC), and just assumed that the crippling fatigue was from the heart meds and chronic, sometimes extreme pain and/or the pain meds. Then I began to experience fibromyalgia-like symptoms, and my doc set me up for a sleep study, where lo and behold I found out that I have sleep apnea. I got my CPAP machine yesterday, with a nose mask, and didn't sleep well w/it last night. Air kept puffing out of my mouth. Even keeping my mouth closed, air puffed out of my lips. And I kept snorting thru my mouth. Weirdness. But I tried to nap w/it this am for an hour and again this aft, and while I didn't sleep, I did find myself feeling more comfortable with it, and I discovered that if I lie on my side, which I usually do, and push my chin into my body pillow, it keeps my teeth together and the air doesn't puff out of my mouth then. I may get a chin strap if need be.

I went to bed tonight at 9 and lay there for an hour w/o sleeping, when my bladder illness made me get up to go to the bathroom. Did I mention I am exhausted? I'm heading back to bed, but I wanted to say how much I appreciate this group, and I know it will be a huge help to me. Just knowing that you people "get it" is a great thing, you know? Hearing your stories gives me hope. I cringe at the thought of all those years when my heart was having to rev up countless times a night to keep me oxygenated, knowing now how hard that can be on a heart. And I am excited at the possibility of finding some freedom from this fatigue. Maybe not tomorrow, or this week-end (after all, it's Christmas, right? Nothing says "I'm tired" like Christmas! )

But someday. Woot!

Thanks, all.

[blivett]

Dear Catnapper,
Be assured from this long-time CPAP user that the long-term results are worth it. Advances in technology over the years I have been on CPAP have lead to incremental improvement in my CPAP experience. The immediate benefits to me were increased alertness during the day, waking bright (where all the colours were again bright - technicolor even) and not having to wait until the 3rd cup of coffee at 11am to feel I was ready to face the day.

There were unexpected benefits too. My wife got a much better night sleep because she no longer worried about my sleep apnoea, leg jerking and snoring. My kelpie dog was happier too (sleeping on the bottom of the bed) as he did not get kicked off during the night. I did not wake with a dry throat. I did not fall asleep at red traffic lights or in the middle of conversations with colleagues. Wow.

As a result I am an advocate for CPAP treatment. When I go camping I take my CPAP portable battery (from Batterygeek) and also use this battery on international flights in aircraft that do not provide access to a power point.

My advice is to stay with it, have your progress monitored by a sleep physician if you are concerned you are not getting the benefit that others claim.

You have made the right decision to use CPAP. Pretty soon others will notice the difference in you and that feedback will encourage you further.

[snowman51]

I have been a cpap user since 1998. My first "good" machine was the resmed autoset T, still my favorite as it is very very quiet but somewhat large and uses an external humidifier. Prior to that used std cpap machines, so bad that no one could continue using them for long and insurance would not pay for heated humidifiers!

Since then Resmed Autoset Spirit, smaller, with attached heated humidifier. Much noiser than Autoset T, failed several times in warrenty.

Resmed S8 Vantage Smaller yet with heated humidifier that dosen't really work well if at all. Noisy like the Spirit.

Resmed S9 Autoset, similar size as S8, very quiet, like Autoset T, and the heated humidifier acutally works. Reduced AIH to as little as 1! Impressive so far. Insurance is still trying to push lesser machines, but it is worth paying out of pocket, in my opinion, for this level of machine.

I have found that pressure can vary from 8 to 15 depending on what time of the year it is and where I am located. Usually 8.5 pressure is ok but about 20 percent of the year, based on compuper printouts for over 11 years now, more is required. Using a fixed pressure of 15 to accomadate this variation is downright painful and un necessary. I am 100% compliant using autopap but with a fixed cpap pressure of 14 or 15 I would have pitched the thing into the junk pile years ago.

Get the software to be able to look at the data for extended periods of time. Very useful for finding nocternal leaks and other problems that otherwise would be very difficult to find.

Learn about central apneas and a lot more before trying to adjust pressures on your own ie get guidance from your Dr or don't do it.

[dtsm]

Started Jan 7, 2010 - first year of therapy has been good.

So thankful for cpaptalk.com and everyone that has been so helpful and supportive these past 12 months.

[GeneS]

Kelly
CPAP is not working when you breath through your mouth so you need to eliminate it first. Some methods involve taping your mouth, chin strap, or using a full face mask. Software is good if you have access to it.
Genes

Hey there, my name is Kelly and I am new here, too. Last night was my first night with the CPAP machine. Egad. I am exhausted...like, seriously.

I have heart disease, had a heart attack when I was 37 (I'm 44 now), have a chronic bladder pain disease called interstitial cystitis (IC), and just assumed that the crippling fatigue was from the heart meds and chronic, sometimes extreme pain and/or the pain meds. Then I began to experience fibromyalgia-like symptoms, and my doc set me up for a sleep study, where lo and behold I found out that I have sleep apnea. I got my CPAP machine yesterday, with a nose mask, and didn't sleep well w/it last night. Air kept puffing out of my mouth. Even keeping my mouth closed, air puffed out of my lips. And I kept snorting thru my mouth. Weirdness. But I tried to nap w/it this am for an hour and again this aft, and while I didn't sleep, I did find myself feeling more comfortable with it, and I discovered that if I lie on my side, which I usually do, and push my chin into my body pillow, it keeps my teeth together and the air doesn't puff out of my mouth then. I may get a chin strap if need be.

I went to bed tonight at 9 and lay there for an hour w/o sleeping, when my bladder illness made me get up to go to the bathroom. Did I mention I am exhausted? I'm heading back to bed, but I wanted to say how much I appreciate this group, and I know it will be a huge help to me. Just knowing that you people "get it" is a great thing, you know? Hearing your stories gives me hope. I cringe at the thought of all those years when my heart was having to rev up countless times a night to keep me oxygenated, knowing now how hard that can be on a heart. And I am excited at the possibility of finding some freedom from this fatigue. Maybe not tomorrow, or this week-end (after all, it's Christmas, right? Nothing says "I'm tired" like Christmas! )

But someday. Woot!

Thanks, all.

[SharkBait]

I'm coming up on 2 years. I have literally laid down ONE time without my CPAP and that was for a nap in Las Vegas. It's difficult going in the beginning, but it's worth it. It's all about commitment. I use a chin strap so I can use nasal pillows because I need to sleep on my side. To be honest, if they told me I was cured I would continue to sleep with this thing because it's so nice to have the ability to breathe thru my nose and to have the humid air.

Hang in there. You'll get it and once you do you'll love it!

[Wombara]

I was diagnosed in 2010 and started CPAP in October. It's had a massive impact on my life and although the mask is a pain, it's worth it. So much so, that I wrote about my experiences in detail to try to help others and this has now been published in the Amazon Kindle bookstore. I'm still working on the paper back. More details can be found at http://www.stead.co/book

Just hope it helps someone...

[Chryslerpetz]

This forum was very helpful to me as I was contemplating a sleep apnea test. It opened my eyes to see that many people of all sizes, shapes, colors, etc..., were exeriencing the same problem that I was. I summoned the courage to take the test and was not surprised by the results.
It is not an understatement to say that the positive results were almost immediate and have been long lasting, now on my sixth week. Discomfort was never a problem. The nasal pillows fit and perform perfectly. The machine is so quiet and
the humidifier on "2" works great. Sleep is deep and restful. No headaches or stiff legs. The professionals that set me up with the equipment were knowledgeable, courteous, and friendly.
Thank you, thank you, thank you.

[Jane1966]

Hello everyone! This is a success story!!

I have waited several months to make this post. First off, I would like to note that this string is supposed to be about success stories to encourage people. I have noticed that many have used it to complain about their lack of success in using cpap after a relatively short period of time. Perhaps another listing should be posted for those who wish to complain of their lack of success? Or, they should create their own posting in the general postings below? I feel sorry for people who can't get the therapy to work, but I think their emails may scare people off from treatment.

Regarding my story, I was diagnosed with potential sleep apnea when I was 43 in February of 2010, and I went through the sleep study and was diagnosed with sleep apnea (much to my surprise) and was put on the cpap machine after I had just turned 44 in April of 2010. The sleep study was uncomfortable but tolerable for one night. It was extremely expensive, so thank goodness my insurance covered it. I opted for a full face mask because I am a mouth breather. The first week was rather difficult. I needed sleeping pills and to get used to the mask. However, the quality of sleep that I received was deep and wonderful from the sleep study and onward. It's hard to describe the difference. I just felt a deep, sweet restfulness the first morning after the sleep study and pretty consistently thereafter. I had never realized that I wasn't sleeping well before and wouldn't have if my husband (who I married a couple of years ago) hadn't notice my sleeping problems--frequent choking and snoring in my sleep. He was very concerned, and this prompted me going to the sleep doctor. Sleep apnea is insidious and a slowly progressing disease as you age. Since I have been on cpap, I feel so much better--when I didn't realize I felt bad before. I have more energy to do things in the afternoon and later, when I would have felt too tired before. Although I never fell asleep before, I had frequently felt tired in the afternoons and thought it was due to being in my 40's--- it wasn't. Although I always exercised before, now I have much more energy to do so, and I seem to have more endurance and can breath better when I do exercise. Also, now it is much easier to lose weight, and I have lost 10 pounds (and need to lose 30 more). Before, it was much harder to lose weight, and I think it was due to being tired and frequent sleep deprivation due to the apnea. Now, I don't want to sleep without the machine. The doctor says if I go overseas I don't have to use it (because I was diagnosed as borderline minor/moderate sleep apnea), but I went without it for one night recently, and it was not good. I woke up frequently and felt terrible the next day. Anyway, my recommendation is to have patience and stick with it. It is worth it and will greatly improve your health and energy levels!

[Carol J.]

Dearest Newbie,
I've been on and off the hose for about 10 years now. I lost track. The thing I notice the most when I use my machine is my alertness level the next day. Energy yes, but the fog is lifted and I can think clearer/better. The longer I've used it the more I can tell the difference. I have sinus problem and sometimes aren't able to use it and regret it the next day every time. I was having migraines and saw a Neurologist. I hadn't used the CPAP in months and he really reamed me about it. I can still hear him saying "Your cutting 10 years off your life by not using that machine next to your bed". And at my age, 58, 10 more years is really important to me. It might be the difference whether I get to see my grandchildren or not! And it doesn't get anymore important than that. I started using my CPAP again and again with no regrets. Once you get used to wearing it you won't notice you have it on. Your daytime sleepiness will go away and your energy level will come back, even if it is slow and you don't notice it right away. I have less migraines because they are triggered by - sleep deprivation! And as we all know, we heal while we sleep and that is why it's so important we get a good rest each night.

Carol J.

[sardu]

I was wondering if someone out there, who may be a bit objective about CPAP/apnea, et al, can tell how you can determine if the process (machine) is actually working. I have been on mine 2 months now, have had the usual mask issues, etc, and got over the initial problems of using the damn thing.

I was diagnosed when I was having fatigue issues and other problems which turned out to be from the onset of hypothyroidism, which as since been treated and is getting a bit better. However, I am still stuck with the darn CPAP thing and as of today notice no difference from using it. I still have some fatigue issues, but noting much and if you had to have a reason for it I'd say it had more to with the thyroid issues than severe DSA.

My doctor tells me that people with apneas are all over the place regarding symptoms and respons to the CPAP. Some swear by it and will never stop, others (most) hate it and use it only because they must for their health. I am somewhere in the middle, I believe, and am hoping to get off the CPAP once my thyroid condition is under control.

It seems that many folks love their CPAP machine and the positive effect it has had. I was hoping to get some benefit from it myself, but now believe the whole thing might have been overblown at the sleep lab due to the condition I had, which at the time the lab people didn't know about.

[HoseCrusher]

Here is 2 things that you can try.

Keep a sleep log. Write down your symptoms every day and see if you notice a trend of them going away when you use the xPAP machine.

Wear a pulse oximeter at night. While not as sensitive as an EEG in determining apneas, if they are obstructive your oxygen levels should drop.

[fredfour]

I am in the dark about this whole thing. I sleep very well and never wake up during the night yet my doctor says I have severe sleep apnea. I am waiting for a call from the hospital for an appointment for a sleep study. I do take a prescribed mild sleeping pill and love the way I sleep. How can I have sleep apnea if I sleep so well?

[Tencap]

Last night 2/10/11 was night #1. Like during the Sleep test, it took some time. Mask was 'sticking' to my face. Saw the post of the the 3M Micro Foam. Might go get some tonight to help with the transition.

My AHI was 75 w/o treatment. Last night my device only registered 3 events. Progress

I've been lurking on the site for a few weeks while waiting for my follow up visit. Thanks for all the information it helped at my DME.