Newbie would like to hear success stories, please.

[dtsm]

Week One on CPAP. I only hope the rest of my life feels this good. I feel like I've been dragging an elephant behind me for 10 years and didn't realize it - and now it's gone. Do normal people feel this good? My mood has improved significantly, the persistent ache in my body is gone, and while I might feel sleepy, I don't have the feeling I used to call "tired" and I was "tired" all of the time.

It'll get even better in a few months and you'll feel like 20 again

[1tiredRN]

So I am also new to cpap use, but I will remain persistant. As a nurse I can tell you oxygen deprivation throughout your body can cause chaos. I have had my machine about 2 weeks, and I can tell an improvement already, not big leaps, but small changes are occurring everyday. I am much more alert and awake in ther morning. Many of my body aches and pains have decreased significantly, and I do have a little more energy but not the transforming energy that many speak of. I have monitored my blood pressure and it is improving slowly. I don't think you can take years of sleep apnea and turn it around in a short period of time, your body needs some time to recover.
I am also getting a portable unit to take camping with me or when I travel. I never want to be without my cpap, no more hypoxia for me.

Blissfully resting Janet

[Vader]

So I am also new to cpap use, but I will remain persistant. As a nurse I can tell you oxygen deprivation throughout your body can cause chaos. I have had my machine about 2 weeks, and I can tell an improvement already, not big leaps, but small changes are occurring everyday. I am much more alert and awake in ther morning. Many of my body aches and pains have decreased significantly, and I do have a little more energy but not the transforming energy that many speak of. I have monitored my blood pressure and it is improving slowly. I don't think you can take years of sleep apnea and turn it around in a short period of time, your body needs some time to recover.
I am also getting a portable unit to take camping with me or when I travel. I never want to be without my cpap, no more hypoxia for me.

Blissfully resting Janet

Being an RN alone will wear you down. It must have been brutal with untreated apnea.
There's lots of good information and tips to better cpap therapy here. I would suggest you take the time to register as a member. Although that's optional, it does allow some of us to perhaps offer a more personalized approach to any advice you may seek.

Welcome to the Forum, Janet!

[youngandsons]

My husband has been on a cpap for 5 years now. He's gone from living in a bored to tears ho-hum job and falling asleep every evening instead of interacting with our children to becoming an entrepreneur and internationally known speaker and writer. It's amazing what you can do when you finally get a decent night's sleep.

[victormiller]

It's inspiring to read all of these success stories. However, it leaves me more frustrated than ever -- to think that there IS a successful treatment. I've been struggling for 17 years with various forms of PAP, and have NEVER had a night where it made me feel better. I've tried 3 machines, 10 masks, 6 sleep docs. I've gotten used to sleeping with the mask (though all of them, to some extent, are uncomfortable). I really wish I could become one of the successful.

[dg]

I also am still waiting for success with this after about three months. Everyone told me that I would immediately start to feel better - instead I am worse. I had been having difficulty breathing, headaches, sleeplessness, heaviness in my chest for over a year. Doctors ran every heart/lung test possible and found nothing wrong. It was until I stopped breathing in recovery after gall bladder surgery that someone suggested I might have sleep apnea.

The sleep study indicated that I had a "very severe" case. The respiratory specialists kept trying to make me use a nasal mask because "God didn't intend for us to breath through our mouths". I guess I never really realized I was a mouth breather until this came up. I simply could not tolerate the nasal masks - I used a chin strap and I even taped my mouth shut. Finally, an ENT doctor examined me and said my nasal passages are too narrow to breathe through my nose and I would have to use a full face mask.

The problem is that it is just SO uncomfortable and I fight it all night long. The most I've been able to tolerate it is four hours and even that is not consecutive hours. Sometimes I don't even know when I take it off. My symptoms are getting worse and now I have to have oxygen bled through so in addition to the discomfort of the mask and limited movement, I now have a loud oxygen machine blasting away.

I just don't know what to do. This is so frustrating. And on top of all that, I have met someone - after being alone for 8 years - with whom I am soon going to want to pursue and intimate relationship, but that is now an impossibility.

[ameriken]

I just don't know what to do.

Sure you do...and you did. You became a registered member, updated your equipment profile so everyone knows what you're using, and you are asking questions and trying to find answers. That is one of the best things you or anyone else can do for your therapy. This is an awesome site with people who share similar experiences, people who have great technical knowledge, and others that provide encouragement.

So keep posting and asking...usually things don't turn around overnight but with the help and some fortitude, we'll all get there.

[Perrybucsdad]

I can't wait to add my success story to this list. I'm waiting to receive my unit in a few days (seems like years away though if you ask me). All I know is I am always tired and have no energy. The wife is always grumpy with me that I have no energy and would rather lie on the couch vs. doing something fun. It's no fun always being tired. All I ever feel I do is work and sleep and never get to ever feel rested.

I hope I'm not setting myself up for being miserable once I get the CPAP and I find my energy doesn't come back. I will be devastated if that is the case.

I have been through a lot in my 42 years. I was born with congenital heart issues, had a brain hemorrhage at age 30, had brain surgery again at age 31, and countless pneumonias and other little things. I can't wait for the palpitations to stop, for the BP to possibly come down to a point where my doctor can maybe discontinue some of my meds.

I know I won't feel like a 17 year old again, but it sure would be great to have energy at 5pm vs. the tired sensation and the depressing cloud it adds to your life.

- John

[ameriken]

I can't wait to add my success story to this list. I'm waiting to receive my unit in a few days (seems like years away though if you ask me). All I know is I am always tired and have no energy. The wife is always grumpy with me that I have no energy and would rather lie on the couch vs. doing something fun. It's no fun always being tired. All I ever feel I do is work and sleep and never get to ever feel rested.

I hope I'm not setting myself up for being miserable once I get the CPAP and I find my energy doesn't come back. I will be devastated if that is the case.

Wow...does that sound familiar. I didn't like lying around on the couch all the time either, though that's about all I could do. Going out to the store seemed like as monumental of a task as would be climbing Mt Everest. What was always going through my mind was 'I wish I felt like I did 10 years ago when I wanted to go fishing, go see a movie, go do this, go do that, etc'. So, I could not wait for my machine to come.

As for 'setting myself up for being miserable', yes, your mindset can self-sabotage your own therapy. I know a lot of folks look at this with a negative attitude like 'why do I have to wear a mask for the rest of my life' and 'OMG, life is over, I have sleep apnea' and such and then wonder why they can't tolerate the therapy.

When I went into this, I knew it would be the best thing that could happen to me. I waiting for my machine like a child at Christmas. When I got my machine, the first thing I did when I got my machine was put the mask on and take a nap....twice. I went to bed early because I couldn't wait to put it on. I've had no prloblems tolerating therapy, because IMO 90% of the battle is in the mind and how you look at it.

So try and approach this with anticipation and a good attitude. That doesn't mean there won't be challenges or bumps in the road. But I think having that good attitude will help you go further, faster. Good luck and let us know when you get your machine!

[sleepyinCoMo]

It does my heart good to read your phrase "nose to the hose." I've had recent positive experience that only happened after miserable experience.

Before: I had a particularly unsympathetic sleep doctor who churned me through 4 machines in 3 months. My biggest problem is Centrals, where my brain fails to send my lungs the inhale signal. Put another way, my Obstructive apneas are now less frequent than my Centrals. I got very upset with that doctor and the entire center, and I reverted to no therapy for about a month. That was depressing and frightening. I was having panic attacks one after another in my sleep, and early one morning I was freaked out enough to ask for a ride to the hospital, which my husband, bless him, gave me. They tested my heart and everything else into the next day.

After: I met my new sleep doctor in the ER of that hospital. He's a pulmonologist/sleep doc, and a great guy. I was very lucky to have PPO coverage then, so I went to his lab 2 weeks later, and 3 weeks after that I had a new, correctly-set VPAP machine which I love. Even with the hassles of various masks, most nights I'm sleeping through the night with the mask still on when I wake up. I have more energy than I did before, but there was no big ahah moment, aside from the hospital night on an industrial size Respironics 10,000 (hospital use only, I asked, they wouldn't let me take it home). After 6 weeks nose to the hose, I had the energy to attend a local support group several miles away. We were given 10-minute slots in a room with 4 manufacturer reps, where we told the reps our mask horror stories. If I plan carefully, I can do more things like that, the heavy-duty social interaction things which used to exhaust me to complete lethargy. After 5 months, I notice gradual differences: I don't have daytime sleepiness every day. I dream more, and remember my dream content. I don't dread getting ready to sleep anymore, because I know for sure I will wake up the next morning.

I can't stress enough the value of a doctor who does more than write prescriptions for machines. Sometimes it comes down to whether the professional we pick to help us breathe at night (does it get more quality-of-life than that?) is interested in our ongoing care. I hope your sleep doc works with you to figure out what to tweak, if not, I hope you can change sleep docs to one who will.

I learned that my optimal apnea-reducing pressure settings will vary from machine to machine, even with the same manufacturer. Our condition is so dependent on these devices that we have to somehow summon the energy to make sure the doc listens, and then takes the time to set us up properly. (I won't start in on the DME people in this thread.) I hope you keep after this, because you will start to feel human again, and when you and your doc find the right combination, you'll know it. And that will be a wonderful aha moment. Take Care.

[casimir]

Thank you for all your comments.

When I first tried CPAP I thought it was the end of the world. The pain and frustration just made me depressd. Then I bought a fitted Mandibular device hoping that would save me from the torture of CPAP. That didn't work. So I went back to CPAP hoping that it would work. I persevered.....and something magical happened...it changed my life ! I sleep like i've never slept before. I feel happier, more energetic and less grumpy and I never snore. My wifes likes being around me:)

A fantastic treatment that should be applauded.

Thanks.

[tinbanger]

I started my cpap therapy just over a year ago, however only just over a week with an actual prescription.

A year and a half ago I began falling asleep everywhere, even in a loud bar after playing hockey. A few times I fell asleep at the wheel,
woke up once passing a 18 wheeler. Needless to say that scared the crap out of me.

At the time I did not have a family doctor so getting a referral to a sleep clinic was impossible. I started that process, but in the mean time
I decided to look on the internet for a machine. I found one locally for $150.00 from a guy that no longer used it, he only had 250 hours logged on it. It Took me a while to get used to the mask, it was about a month and a half before I could wear it all night. But this machine
changed my life. I no longer fell asleep everywhere, stopped getting up in the night to go to the bathroom (usually 4 to 5 times a night).
I would have vivid dreams, where I would actually act out at night, one night I got up out of bed to get a buddy a beer.
Twice I even urinated in bed. All this had completely stopped I felt alive again thanks to my cpap machine.

Before using it I did read up on it to see if it was dangerous for me to use this without the supervision of a doctor. After outweighing the
pros and cons, I felt it was better to take my chance with the cpap machine than falling asleep driving (My job requires me to sometimes got
to site visits). The pressure was set to 11 so I used that at the beginning but eventually upped it to 14 and that's where I left it.
I used this machine for a year and 2 months before I finally was diagnosed and issued a prescription. The pressure that was prescribed to me
was 12, so I was pretty close. It's been a week with the prescribed pressure and I have gotten up once to go the bathroom, and have felt
a bit tired compared to usual. Next Friday I return the trial machine and will purchase my own.

I have the software to check my data, I think I will change my pressure to 14 to see the difference in the stats. With my old machine I did
not have the means to check the data, it was a smart card and I did not want to purchase a card reader for it. I'm pretty happy that I can see
this data for myself. So far I like the Resmed S9 Elite that I am using, will probably buy the same unit.

When I finally saw the doctor I told him that I was using a cpap machine already and that the results where amazing. I was not sure at first
if I should actually tell the doctor I was using a machine "illegally" lol. But decided I should be honest about it, and to my surprise he was pretty impressed that I took that much of an interest in my own health. He told me he went to a conference and they discussed that the patient
should have more control over their therapy, and he agreed.

When I started on my own, giving up on the machine was not an option I forced myself to get used to it, I no longer wanted to feel the way I did. I have two kids, and I wanted to be alive to see them grow up. My decision was a no brainer. Perhaps I got lucky and never had any negative effects to using a cpap without medical observation. CPAP saved my life.

[SilverAnn]

I have been on the CPAP for a little over two weeks. It was a little hard to get used to the straps, the little air exhaust thing, the hose and the pressure on my nose. What hasn't been hard to get used to is the ability to wake up and not spend the day fighting to stay awake. Not waking up with a migraine is good too, and getting home from work and feeling like getting some housework done is nice. I didn't notice all this good stuff at first. The changes seemed to me to be very subtle and perhaps imagined. I commented on this to my husband. He said, "You wake looking refreshed. Your color is better, you sleep quietly and soundly and whether you think so or not, you have a lot more energy."

The thing that really got me excited is that I got a cold. No I don't love being sick. But before the CPAP getting sick was well, tragic. A cold always led to a secondary infection and took weeks to get over. I would miss work because I simply could not get out of bed. Well this cold is a nasty one, but I haven't missed work because every morning I wake up feeling like I got a little better over night. Despite the fact that my throat hurts and my head hurts and I ache all over, I feel like I am getting better. This is so awesome!!! I feel like slowly I am healing not only from the cold I have, but from the years I spent not sleeping because of OSA. And it has only been two weeks! And I am sick! IT IS WORKING!!!

[tinbanger]

Hello SilverAnn,

Great feeling isn't it. I could not believe how different and better I felt also. My wife also commented when I first started
how my eyes were much brighter. You are very fortunate that you adjusted so quickly to the mask and pressure. It's
too bad that some people have such a hard time adapting, and give it up before they feel the effects of the therapy.

I also find that when I get a cold it is much easier to deal with than it was before cpap.

Get well, and enjoy your new lease on life.

[CpapWife]

Hubby saw very quick results. Within a couple of weeks he was waking up much more alert and sleeping much deeper.
Of note, his sleep study showed he "woke up" 91 times an hour, so getting that cut even in half would make a big difference I would think.
I nudged him to really embrace his cpap, he puts it on even when he just wants to shut his eyes and rest a few minutes now. It took several months to get to that level of commitment, it has been about 1 1/2 - 2 years now since he got his cpap.

He still has some symptoms, such as waking in a panic but they are once every week or two, versus several times a night. Same with his dreams of being chased or chasing someone in high danger situations, all symptoms of not getting enough oxygen (brain is starving for oxygen and matches this flight or fight situation). His machine still shows he has some episodes but at what this group says is acceptable.

He does struggle with sleep still some days, sleep apnea is not the only thing that prevents good sleep.
He tends to be someone who worries and has more tension in his body. We have added some supplements that generally help him relax more (without side affects) and that also helping his sleep quality.
This includes:
L-Phenylalanine - an amino acid supposed to help when you mind won't shut off
Carditone - helps high blood pressure but also helps generally calm things down - note, True Calm is another one but don't take them both together as that is too much
Relora (magnolia bark) - this also generally relaxes and I have seen a big difference with this including his sleep quality

If you can monitor your machine to see how your current sleep interruptions are, that can help. The buttons got pushed by accident one day and that changed the settings and it was a couple of weeks of sleep being worse before I though let me double check the machines. Checking machine readouts regular is another thing to do but makes sure things are getting better and not worse.

I think sleep apnea affects so many health issues, I wish a cpap machine alone would bring things back to the level of no sleep apnea. While the difference on a cpap without is incredible, I would like to see another 10% improvement so that there was no sleep apnea affects on his body. But we just keep working on the other issues with lifestyle, exercise, heathly eating, and supplements.

Last thought, I second the opinion above of finding a doctor who does more than write prescriptions for machines. Though that is difficult and in our last town there were few choices in our health care plan and none did this. In a new town now so will be looking for this again.