Newbie would like to hear success stories, please.

I was diagnosed a little over a month ago with OSA with an AHI of 41; not as severe as some I saw on this discussion but still was a "holy crap" moment for me. As soon as I was diagnosed, I went into research mode. I learned a lot and did come across this board but didn't take time to read it. I just bookmarked it and moved on. This was my first longish read of stuff there and I am glad I found this discussion first. As hard as I have been working on being compliant, there are ups and downs and glad that I am not the only one that isn't having instant gratification or success.

My sleep clinic sent me home with an APAP machine for 3 nights to get a pressure setting for me. It seems they are a bit lazy as the mask they supplied me with was a Respironics EasyLife Nasal mask. All around a mask with good reviews but it seems the clinic is a bit lazy. There were 10 of us in there for the orientation for taking home the APAP machines and without exception they gave us ALL size small masks. Perhaps makes sure there is a quick and easy mask seal and seemed ok when trying the machine out in the clinic but it closed my nose off so badly that I felt like I was suffocating and could not sleep a wink with it. I knew there was a possibility of sinus congestion using xPAP and, in fact, I have always had issues with it. They did supply me for the next two nights with a ResMed Mirage Quattro full face mask as my assumption was that I needed to be able to breathe through my mouth.

Turns out to NOT have been the case. It was just the ill-fitting EasyLife that made me feel like that. I still had some of that bag over the head feeling those first couple of nights with the Quattro but I did manage to get some sleep. I looked at what little the display of that machine would tell me of my sleep which was an average pressure of 6.8 and an AHI of 2.2. While I did not sleep the whole night, I did actually feel better.

I'd been putting off getting a sleep study forever. Even when in my mid 20s, there was a time when the neighbors commented on my snoring. Since then it has been one thing and another that had me put it off until I just finally made up my mind, 2 decades later, to do something about this. I know I should have sooner since I have long known the serious implications of OSA. That being said, I have finally done it and will be serious about this. No tossing the machine in the closet because I am annoyed by it.

In the last little while, I have gotten the machine and a mask supplied by my health insurance. The lazy clinician specified, again, a size small EasyLife (the same one that was aware of the fact it was a total disaster) and the DME would only supply precisely what was on the Rx. Fortunately I did manage to get another Rx that merely said "best fitting nasal or nasal pillow mask". After research I got them to supply a ResMed Swift FX as to go with the moderately successful Mirage Quattro and the failure EasyLife.

Since then I have bought out of pocket a small/cheap machine to use for travel and several other masks. I saw someone, somewhere write that not only might it take several masks even of almost the same type/style to get one that works well but that even if all are dang close to perfect they are enough different that might make the difference between sleeping or not some night to have the one that suits just that night.

So far this has been sound advice as I have woken in the night and was unable to get back to sleep with the initial mask but was with a different one. I haven't gotten the "magic bullet" mask yet but the ComfortLite 2 has become the favorite.

None of this is perfect yet and I know I still have a way to go and it is nice to see there are fellow travelers on this path both successful and starting out and not so successful to walk it along with me.

kellyj994,

You most certainly are welcome here. Hope you get lots of good information.

Rolf

Hi everyone -- I've not been posting much because I'm back to work AND picking up my life again......doing a lot of stuff, maybe overdoing it even some. Have been trying to keep up with website from my phone.

I LOVE this website and everyone here who has helped me so much. I ADORE Emilia -- she held my hand almost literally when I was NOT sleeping hardly at all and walked me through my early days on the hose. SAINT Emilia in my book : )

I am now sleeping. My AHI is down to 2.7 and I'm SLEEPING through the night (versus getting up 4-5 times a night). I have little clusters of those hyponea green dots.....so heard on another thread to probably ignore those that they mean I'm in REM sleep. For autopap my doc suggested I start with 8-15. That got me to an AHI around 5, 6, or 7. I've narrowed my autopap pressure to 8.5 to 13.0 so far, and I'm thinking of going to 12.5 tonight to see if it will catch anymore events. My maximum pressure used last night was 9.4.

Also, my sleep doc is FANATICAL about nothing to eat 3 hours before bed and nothing to drink 2 hours before bed....and I think that has helped.

I have climbed DOWN from pillow mountain. I started out with a wedge and about SIX pillowS!!!!!! YEAH!!!.....and last night I slept NO wedge, and slept with two rather flatsy type pillows. I'm working on sleeping on my side.

I have learned to keep my MOUTH shut and breathe through my nose. And DANGED I love humidified air -- wow -- what a difference that makes!

I learned that wiping down the mask isn't enough...that mask needs a morning little bath with Johnson's baby shampoo and then a rinse water with some vinegar to be squeaky perfect enough to not have leaks.

Oh....and my stuff nose and sinus problems GONE!!!!

And my GERD......GONE!!!!

And have lost 15 pounds.....GONE!!!!!

AND....and this is the kicker all these wonderful things would NOT have happened except for this wonderful website -- and the fine people and all the great information.

I would have been one of those who gave up. It was just so hard in the beginning. If not for this website I would have put that thing in the closet during the first HARD weeks. I know I would have...because everything I've learned to be successful EXCEPT for the no food/no drink rules I have learned on this fine website. EVERYthing. Without this website I would not have made it.

So......(raising glass to you).....Here's to you -- I owe my good sleep and happiness to you fine people! Thank you so much.

Oh, one thing I did take up myself -- this is a positive outlook thing I do every night. When that mask goes on, and I hook up that hose, as I'm taking my first couple breaths as the air is coming in I say, "Hello, old friend." and I will ALWAYS do that for every time I put on that mask. When you see that mask as BREATH giving, LIFE giving, HEALTH giving, it quickly does become your Old Dear Friend.

Again, thank you for all your kind assistance and support from the bottom of my heart! God bless you!

Hello,

I'm a 49-year old male & a C-PAP user.

I'm srich & I just joined this website today. Originally, I knew very little about Sleepapnea & C-PAPs. Besides my wife, I've not talked to very many people about having sleepapnea.

Back in my teen years, friends from camp & family members would tease me about my snoring, but I never knew what my snoring was like? During my 20s & 30s, I lived on my own, but I still really never knew what my snoring was like. By my mid 30s, I got married & my wife would sometimes tell me that I would snore (usually softly to medium) During my 30s & 40s, I would often sleep, then feel myself suddenly choke then wake up sweating. It was as if I was having nightmares. This seemed to happen alot to be between my 20s & 40s. By age 45, I became extremely tired all of the time, although I was sleeping at least 7-10 hours/night. My throat was always sore & I could never seem to get enough sleep. By my 40s, my wife told me I was snoring too loud & that I would sometimes not be breathing before I would suddenly wake up breathing loud & fast. At work, I was always finding myself fighting to stay awake! By 46, I happend to come across a pamphlet about sleep apnea & the symptons I read definitely matched what I was going through.

In March, 2008 at the age of 46, I went to a sleep lab & I was diagnosed with "moderate sleepapena." The doctor started me out on my sleep # being 8. Although I was beginning to sleep better, it took me about 3 months to adjust to everything (the right mask, the tightness of the mask, etc). During the first 3 months, I found myself "craving" about 9-11 hours of sleep each night & I noticed I would now wake up feeling very relaxed while breathing. During months 4 to 6, I felt the need to increase the sleep pressure # from an 8 to a 10, then 12, then 14, then 16, then 18. The higher the number, the better I felt until one night when my bladder began hurting too much. I then realized I had to decrease my pressure # from 18 back down to a lower # until I could be comfortable, which in my case was 12. I've been a 12 ever since.

From the beginning, my sore throat was gone & I was more relaxed when I would wake up. Also, I finally got used to my full face mask being oproperly adjusted to the right tightness. Also shaving my face before sleeping under the mask help solve the "air leaks. 2 1/1/2 years later, my sleeping has felt much better. These days, I wake up feeling very relaxed. Sometimes I just enjoy lying in bed feeling the relaxiation noteven wanting to remove my mask. I now ask myself why I had waited so long? I would highly reccommend a c-pap to others going through the same thing I have.

Junebug9999 - wow, thats great to feel alive again with such good health and waking up with a good feeling every morning. Its' like recovering from a bad time of health. I feel your joy and energy too .... like for the past 2-3 years I've been just generally tired all day (not knowing I myself had sleep apnea).. man, I must have been functioning every day on what's akin to 2 hours sleep.. Who can live on that? So I feel your joy and your energy and am excited for you!

I have to tell you all about my experience:

I had a sleep study in the beginning of September. I already knew I was suffering from apnea as a result of a hospital stay in which my oxygen saturation dropped to sixty. For years I was not sleeping through the night and I was continually sleepy during the day. As I digress, I did some research and found that there were two types of sleep studies. I asked the tech what type of study I was scheduled for and he stated it was at their discretion whether to move to a split study. My hopes were that this would happen because the headaches were getting frequent and I was becoming frustrated with my sleep patterns. Within 120 minutes of the study start the tech came in and added the diagnostic cpap to the study. I had my split study. I was woken up at 6AM and slept so deeply that I knew I had to start treatment ASAP.

It took another two weeks to get the report and another week to get the DME out with equipment. I really wanted this machine because I knew I would feel better once I started regular therapy.

I am now 24 days into therapy and am at about 95% compliance (sometimes I pull the mask off in my sleep), and I feel very good. I am having good results. I have more energy, my blood sugar has come down and I am losing weight. Getting out of bed is much easier when well rested. I am still tired and require a nap here and there but nothing like BC (before CPAP).

Its a slow steady process that I believe, with compliance, the payoff will be life changing.

Its so helpful to have a place where we can provide each other with Experience, Strength and Hope on this problem we share. (I am a twelve stepper, the therapeutic value of one personwith apnea helping another is without parallel).

I read this site constantly and have learned so much in a short period of time.

Where I was 2 1/2 months ago: Hubby unhappy with loud snoring, waking up for lots of bathroom breaks, night sweats, hot flashes, frequent am headaches. Needed a nap before going out at night, falling asleep on sofa every night. My sleep study showed AHI of 59'. Desats to 76. This really scarred me, I have a family history of stroke and heart disease. An uncle was famous for always falling asleep, no one would let him drive. Being scarred did not make me want to start CPAP, but I didn't really have an alternative so, thanks to this forum I got started. Avoided an overpriced brick from a slimy DME , and a doc who wasn't very attentive. New, doc, new DME, new APAP, software and lots of reading. It was very rough at first, but I am 100% compliant all night,every night. I have only ripped off the mask once while asleep, well more like I tore it fro'm the hose, but the hissing woke me so back on it went.Where I am now: hubby is happy with the quiet, I sleep 6 or 7 hours without waking, sometimes longer,no bathroom breaks, no hot flashes,no. night sweats,no headaches,no dozing on the sofa. I have more energy and feel Really good.. AHI is between 2 and 3 most nights, may tweak a little more, but am very happy with things in general. Now I don't mind the mask, I even look forward to sleeping with it because of how it makes me feel. So, newbies you can do this And you will be happy you did.

mayondair wrote: I even look forward to sleeping with it because of how it makes me feel. So, newbies you can do this And you will be happy you did.

I think that this is the best indication that it works for you (like it did for me). "They'll have to pry my machine and mask from my cold, dead hands!!!" ...is how I feel about it.

The first while (month or two) is strange. I can tell you that before the end of the first year - I was much more stressed out if there was no way to get to my mask and machine than I'd ever had about using them!

If you're new to *pap machines, do keep trying - beat on your doctors and providers if need be to change masks and settings, but if your issue is apnea/hypopnea, these machines really can change your life (for the better)!

Wow I have just started to read this forum as I have recently been diagnosed with Obstructive Sleep Apnea and already have found a wealth of information on cleaning CPAP masks etc. I have had a mask for nearly 3 weeks now and am finding it difficult to say the least. The success stories are a real bonus to read and I hope I can get some relief from my tiredness. I just wanted to say that my husband more than me has found a difference in me already and says I'm not as tired as usual, he is right, after years of no energy bad night sleep and daytime sleepiness, I am different. It's a long hard road but I am persevering with the mask as the alternative was awful and I'm still close to remembering how bad it's been for me over the last two years but possibly lots more years looking back.
I don't understand about setting machines and oxygen rates yet but I'm sure I will become a success story eventually.

At least once a month I come to this thread to get inspired, learn, and sometimes, report in.
I have been a "hose-head" since April this year. It was not easy at first...every time the Auto changed pressure in that first week, I woke up. Sleeping with the machine was worse that sleeping without. Then came the sore nose, sore neck from a thicker pillow: recommended to support my head better, and tracking down and dealing with leaks. And a host of other things to many to mention. The worst was having my hubby poke me several times a night when therapy air was blasting through my open mouth. I finally gave up the soft, comfortable Swift FX nasal pillows for the firmer Opus 360 ones. AND got a chin strap AND a sports mouth guard to keep my mouth closed. Only then did the leak rate drop from 30L/min. to less than 5L/min.
Since then I am constantly amazed at how I got used to the machine and headgear, And how different I feel...even after 7 months. More energy, brain works better, short term memory still improving, much more even tempered and relaxed. Depression is gone. Off medication for painful Neuropathy.
Work is fun again. The high level of stress, strain, exhaustion, and anxiety suffered every day at work is nearly gone. The old me that was constantly irritated, brain dead, and had no energy for life is gone for good...for as long as I use my Apap. For me this a life-long commitment.
I get out of bed on weekends looking forward, yes, looking forward to doing chores around the house. And there are a lot to do. Things have been neglected for years because I just could not emotionally or physically do them!
Yes, I am looking forward to life with an eagerness I have not felt in years. And I thank all the kind people that participate in this forum for making this possible.
I'm sure you will find the same friendly guidance, encouragement, and support that I did. So many times I didn't have to ask the question but found many answers here. I encourage you to read, read, and read. And most of all don't Give Up.You are not alone. Others have had similar experiences. They are willing to extend a helping hand. Take it. You are worth it.
Best wishes and good luck,
Cindy

Last night was my first night on the CPAP (full mask) and I guess the only thing I can say so far is...I'm intrigued. First, let me go back to 2 nights ago...the sleep test. To prepare you first timers, I have to admit it was one of, if not THE, most horrible nights of my life. The wires and the uncomfortable bed were bad enough, but when it came time to "tryout" the CPAP the tech gave me the nose only mask and I felt like I was suffocating. Apparently, the pressure I needed was also enough pressure to hinder my exhalation...horrible feeling and I was very worried I may not get use to it. But fortunately, the tech gave me the full mask and I was out cold within 10 minutes and slept soundly for the final 3 hours of the test. I got my machine before I left the study.

That brings me to last night. I have to admit, my emotions ran the gambit from excitement/curiosity about finally getting enough sleep and having more energy to anxiety/nervousness about whether or not I'll get any sleep with this strange contraption on my face. I think it helped that I waited to go to bed until I could barely keep my eyes open. But I hooked up the new machine, connected the hose to my mask, adjusted the mask to my comfort and laid down. Now, although I was really tired when I went to bed and I expected that would help me fall asleep faster it took about 45 mins for me to finally fall asleep. In hindsight, however, I'm sure the delay was due to me focusing on my breathing when I really didn't need to. I have no doubt breathing with the mask on will become second nature soon.

I'm usually a light sleeper (having apnea sure added to that) to the point where a car driving by would easily wake me up. Now, I tell you that to tell you this: Twice last night I woke up and realized my mask was on the floor. Ironically, the mask worked so well I didn't even realize I had taken it off and it wasn't until an apnea attack that I awoke to find the mask on the floor. The physical action of removing my mask didn't "wake me" when I car driving by use to...that's something I'm excited about. This morning, I "feel" different, but can't say I have more energy, feel more attentive, or any of the benefits mentioned in other posts...just different. But I'm not going to be discouraged. After all, I only got 3 hours of sleep the night before which means I've only had 11 hours of sleep in the last 48 hours. Of course I'm not going to feel refreshed, energized, or alert after only 11 hours of sleep over 2 days. But today is Friday which means I get tonight and tomorrow night to really get caught up on some necessary SOUND sleep.

I'll try to keep posting as my experiences progress.

i am a newbie, having a real problem wearing my mask. i have always had a phobia of not being able to breathe, and wearing a mask over my nose is freaking me out. i know this is silly, especially since the cpap is supposed to help me to breathe. i try to keep myself calm, and i have my ramp up to 45 minutes to ease into the air pressure. but it's hard to exhale through the airflow and i feel like i'm being inflated like a balloon. if i open my mouth it breaks the seal and i make horrible snorting sounds. i really want this to work. has anyone else felt like this, and what did you do?

I would suggest that you start a new topic with the same questions so it get a lot more attention.

Secondly, I was having the same problem as you with the mouth breathing thingy. Also the bridge of my nose was under pressure from the nasal part and my forehead was being pressured also - not a good thing for my sinuses.

After reading a lot here and asking questions, I changed my mask to a Mirage Liberty which has nasal pillows and a mask over my mouth. The are a couple of 'hybrid' type masks, but this one works fine for me... I think. Only been at this for a month, so that could change.

You can click on the link in my signature to see the mask I'm describing.

Cheers,
Xena

Well this has been quite the journey. I am prior military and a cop to boot. Law enforcement has been my career field for 24 years. I am now 44 years old. As far back as I can remember, I have been an extremely light sleeper - I feel every movement. I hear every noise.
Doctors said since my high blood pressure was moderately elevated and wouldn't come down to truly normal levels I needed a sleep study. Before the study I had to fill out this ridiculous questionnaire that was only slightly fewer than pages than the novel War and Peace. Questions like : “Are you more or less sleepy than the people around you?” (How should I know?) “Do you crave sweets more than the people around you?” (I don't actually crave sweets but again, how should I know?) “Have you EVER fallen asleep reading, watching TV, driving?” (Seriously, who hasn't?) “How many naps a day do you take?” (I don't nap - ever - unless I am sick as a dog).
At the study, I told the tech these were stupid questions. He said "Boy if I had a nickel every time I've heard that!" Explained to the tech I was a light sleeper and I wouldn't be able to sleep with all the stuff on me. He said, "Well, we'll see." About an hour later he had me take medication just to get the study started. Two hours later the tech came in and said I needed to try out the CPAP machine - first with a nasal mask (hated it) then with a smallish nose and mouth mask (hated it a little less). At the end of the study the tech told me obviously I have a problem or he wouldn't have me try the machine. He also said I went right to sleep with the nose/mouth mask. UUMM no I didn't. I laid there awake counting ceiling tiles. To entertain myself I fluffed out my cheeks like a hamster and let them flutter in the breeze. I swished air around in my mouth like water- you get the idea. When the doctor, whom I've never met, called me with the results he said I have moderate OSA with about 20 events per hour and low O2 sats, and elevated blood pressure during the study (duh). He said I would need a CPAP machine set to a pressure of 13 with a 20 min ramp time. He said he would send my test results to my regular doctor and she could write the prescription for the products. I was too stunned to ask questions. I requested a copy of the test and report. I learned, according to the sleep doctor’s ridiculous questionnaire, I need to take frequent naps, and crave sweets and often fall asleep doing routine activities. Say what? UUUmm no that’s now what I put on my answer sheet. I made me question the validity of the entire study. My regular doctor wrote the prescription and contacted a local medical supply company. It too two weeks for them to call me about setting up a time to get me started on the machine and mask THEY chose for me. I told them I travel and wanted a machine that would work on a battery. I learned they never heard of such an animal. I decided I would look elsewhere. Anyway, I jumped on the research and learned APAPs and exhalation relief are favored by a multitude of users. Unfortunately, my sleep doctor (still haven't met him) wouldn't write an RX for an APAP since HE doesn't like them. I didn't know till today I could have gotten EITHER an APAP or CPAP on the prescription anyway. Dang. Before deciding on a machine I traveled 80 miles to the biggest town likely to have CPAP machine stores. I wanted to see one and handle it – fiddle with it. I found lots of CPAP stores but NONE would allow “walk-ins.” None! So, having only just glimpsed the one machine during my study, I ordered from CPAP.com the Aeiomed Everest 3 due to the integrated battery option. It is also small, and light which is a plus as I backpack and camp a lot. Unfortunately, the battery is backordered – apparently some time in recent past Aeiomed has a fire at the factory. Ordered two masks. The InnoMed Nasal Aire II Prong CPAP Mask with Headgear and the PMI Probasics Zzz-Mask Full Face CPAP Mask with Headgear. The Probasics POPS every time I exhale – like a valve slamming shut. It’s LOUD. Don’t know if it is supposed to do this or not but didn’t see any complaints about this in customer review so I think it might be defective. The InnoMed is a complex beast. All straps and hoses every-which-way. Once I got it on it was pretty comfortable though. However, I am a mouth breather and apparently now need to order one of those mediaeval torture devices called a chin strap. I thought I struggled with the mask for at least 4 hours last night but the machine says I had a big zero effective hours of treatment. I feel worse today than I normally do. This has been so discouraging and depressing – I’m not normally depressed – run pretty much even keel. I feel old, really old. I hate the way the masks make you look like you’re some medical experiment gone awry. 13 cm pressure is a lot of pressure. I couldn’t believe it when I first turned on the machine and it started up full blast. I’ve used leaf blowers that don’t move this much air. The doctors say I will sleep better and feel better but I cannot for the life of me see how that is possible. I appreciate all the success stories. I hope to be one but I know my attitude sucks and it doesn’t help that my masks don’t seem to be working right. The one plus has actually been CPAP.com . Great website. The learning center is where I learned how to set up my machine. Lots of material to review and speedy service. By the way, I still haven’t met my sleep doctor…..

I notice that most of the dates on this subject are from 4 - 5 years ago so I wanted to let you know that by keeping these postings available for us "Newbies' to read, you are helping us tremendously.

Thanks so much for all the encouragement.

Meri