Newbie would like to hear success stories, please.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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JointPain
Posts: 261
Joined: Thu Apr 28, 2011 10:41 am
Location: Houston, TX

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

Post by JointPain » Thu Apr 28, 2011 1:05 pm

XPAP sure has changed in the 10 years since I was officially diagnosed. I remember people (including nurses I met socially) commenting on the lengthy pauses in my very loud snoring even when I was in my twenties, but I could not convince a doctor to give me a sleep study (non-obese young male : no way they would say). Fortunately, when I was about 40 a nurse intern finally let me have a sleep study, and I was diagnosed with OSA and prescribed 11 cm H20 CPAP.

As a newbie OSA sufferer, my first experience with a DME supplier was the nightmare you'd expect. I was given what must have been an outdated obsolete model 10 years ago. It has an off button and three or four different on buttons for different lengths of ramp. That's it.

Still, I took to it enthusiastically and relatively easily and it really turned my life around. I was very, very close to 100% percent compliant for years.

I did/do have issues. I'm very claustrophobic and especially prone to panic attacks if I'm very tired, so I would often have issues on the very nights I needed CPAP the most. I work around that by waiting until I'm already pretty drowsy before putting on the mask, but sometimes I would go to sleep first (and then wake up sometime in the middle of the night and put the mask on). I also had/have a lot of trouble keeping leaks low, without tightening the mask so much that it hurts my face, and with my basic machine I have no way of knowing whether the mask leaks excessively during the night. Sometimes I would feel really groggy or have a headache, but have no way to trouble shoot.

Eventually I gradually became less compliant. At first just one night now and again when the claustrophobia was particularly bad, but eventually most nights, with the CPAP only being used when I was feeling particularly exhausted.

Well, now I've been diagnosed with high blood pressure (100/160 before medication) and as part of my treatment my doctor is urging me to get back into full CPAP compliance. I complained that I was also getting a lot of irritated throat whenever I did try to use the CPAP recently, so he wrote me a prescription and suggested I get a new model with a heated humidifier. He also said that CPAP machines have advanced since I got my old one. Hence, my presence here where I've been reading and learning a lot. A new S9 Autoset with heated humidifier is on its way from cpap.com.

While researching I've also been using my current CPAP machine regularly, and have managed to get a full night's restful sleep again. I had been waking up several hours before I wanted to, stilll feeling exhausted, but unable to get back to sleep because I was very alert and tense. I didn't even consider the possibility it could have been my OSA rearing its ugly head. Now that I'm back on the CPAP though, I'm sleeping the full night and feeling calm and relaxed in the morning. What a feeling!

Despite using the CPAP last night, this morning I woke with a headache and felt so exhausted I had to sleep in for a bit. Hopefully, all the data logging wonderfulness of the new machine will soon help me understand why this happens and make suitable adjustments.

Thanks a lot to the members and sponsors of this forum for all your comments and information.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Pressure is 11-14. Old CPAP was a Resmed S6 Lightweight. Also have Profile lite mask. ResScan is actually version 3.14. Now I use Sleepyhead.

bobbyolympic
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Joined: Sun May 15, 2011 9:45 am

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

Post by bobbyolympic » Mon May 16, 2011 1:21 pm

3rd night in. Wow. I'm in the immediate bang, in your face, this-is-your-brain-did-you-miss-me?, category. Is there a thread where newbies can just go and cry at finally having some hope? I've been chasing down the symptoms for 15 years (why one doctor didn't think to ask me about this?! I went to my doctor after I met someone who used a CPAP and all his symptoms before were mine and told him and he was like ....ah...you may be on to something there...let's send you tot the sleep study center)
My wife was looking at my get-up at night, and not being critical, but me being self-conscious said, "Hey, Darth Vader basically wore a C-PAP 24-7 and, dark side or not, look at all he accomplished!"BTW I think they should make a Darth Vader CPAP mask. There is no shame in wearing a CPAP, no more than a paraplegic should have in using a wheel chair. Life is good, if you want to live it to the fullest, you'll do whatever it takes to do so. Fight for it and never give up.

Peter62
Posts: 6
Joined: Tue May 17, 2011 11:34 am

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

Post by Peter62 » Tue May 17, 2011 12:15 pm

Give it chance. It took me a couples of month to get used to it. The annoying part is the mask.
The biggest challenge was to find the right mask. After 2 failures I found the nasal pillow mask. It works well for me. I am still looking for the right pillow.
Cpap benefits: Only good things. More energy, better focus....
Peter

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russellms76
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Re: Newbie would like to hear success stories, please.

Post by russellms76 » Wed May 18, 2011 9:16 pm

First morning I could feel the impact. Haven't slept without it since I started 3 weeks ago. Finally got the data off the data card and have begun to understand the settings. It's great not going through each day in a fog or falling asleep at stop lights anymore.

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Additional Comments: ResScan 3.14 with ACR38U-SPC-R

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

Post by happysleeper » Sun May 29, 2011 8:22 pm

Gradual But Sure Success: I've been on CPAP now for about 19 months and I'm doing well. BEGINNING: Initially took quite a bit of tweaking to get comfortable. When I first start CPAP therapy I was desperately exhausted, sleeping 10-12 hours/day, afraid that I would fall asleep at the wheel and having immune problems--joint pains. Waking up in panic, drenched, multiple times every hour. No emotional energy or energy to exercise.

FIRST FEW MONTHS: I was able to sleep through the night with my mask after about 2 weeks, got really comfortable with it after about 4 months. My quality of life had been so bad that I was determined to make CPAP therapy work. I kept a log of issues and read up on them on this website ( did a search for discussions related to my topics...lots of wisdom out there from years ago!) I also read the CPAP wiki and success stories. I could tell from my log that I was making progress, which I needed to be able to see.

7 MONTHS: Last year at this time (about 7 months into it) I was able to take on a teaching job for a couple of days a week at our local college. By that time I was able to drive safely, and when I was sitting at my computer and had time to ponder a question I could think clearly. Sleeping 10 hours a day. Joint pains decreasing. However still couldn't think on my feet, answering student questions in the moment or demonstrating a skill was stressful and difficult. Brain still felt like mush. Eventually I had another sleep study and found out that I was mouth breathing out some of my therapy air, so that I wasn't getting the full benefit of the CPAP.

Now, after 19 MONTHS: I have a job where I can think on the spot to problem solve. It feels so good! I still have some chronic fatigue, working three days/week is fine but more than that and I feel exhausted and my AHI tends to rise. I don't think much about my CPAP any more, just use it EVERY time that I lay down, with my mouth taped shut. I think that my body and brain continue to heal from the consistency of healthy sleep. I'm re-growing neuro pathways in my brain. I've actually been able to begin to add some gentle water aerobics once or twice a week, which will continue to help me heal.

This website has given me a ton of information. My sleep doc tells me that I am one of his "star patients" because of my determination and enthusiasm to discuss my case with him. I bring him information about my personal sleep data trends and also about new information that I've found on this website. To all the "oldies" on this website who share their journey, thank you! And to all the newbies, it's worth the effort! Keep reading!

Nosehose
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Joined: Fri May 27, 2011 10:35 pm

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

Post by Nosehose » Sun May 29, 2011 9:47 pm

I turned the big Five-O this year. Went in for physical since it was a long time since the last one. Complained about the usual for a guy my age; lower back pain, sore knee, lethargy, lack of engergy, etc. Went in for the sleep study and lo and behold, OSA!!!
Went in the following week to the DME and got fitted with a RESMED Apap. Tried a bunch of different masks and settled on the Swift FX nasal pillow cannula type mask. Went home and went on the hose.

What a difference! No more snoring. My sig other kept watching me thinking something was wrong since I was so quiet. I woke up and felt fantastic. Certainly this therapy was doing alot of good.

Went in a week later for my evaluation on the sleep study. My doc showed me my chart in graph form and it looked like those seismic charts you see from an earthquake in the movies . He just went over the things the study found at a high level and I didnt really understand what all that meant. After 6 more weeks I was to come in for a follow up to check my progress and download my data from the chip in my RESMED S9.

So, I use my APAP for 6 weeks and go in to download my data and follow up. The clinician comes in and first asks me how I feel now that I have been on the hose. Told her all is great, energy is back, no more daily naps in the afternoon, feel ready to go in the a.m.

So, she then tells me that is great news and what my numbers were in the sleep study and from my datacard download.

My sleep study numbers:

Total Record Time (TRT): 407 minutes
Total Sleep Time (TST): 293 minutes
Total Wake Time (after sleep onset): 101 minutes
Number of awakenings: 22

Sleep Stages:
Wake: 114 minues
Stge N1: 33 minutes
Stage N2: 138 minutes
Stage N3: 62 minutes
Stage R: 60 minutes

Average Heart Rate: 78 bpm
High Rate during sleep: 115 bpm
Low rate during sleep: 46 bpm

Baseline Saturation (O2): 94%
Mean O2: 90%
Minimum O2: 61%

I had a total of 78 obstructive apneas, and 168 hypoapneas!!!
AHI: 116 per hour
RDI: 118 per hour

Needless to say, this data freaked me out. My initial followup with the clinician did not reveal these numbers at all. (and during this time, I was thinking I was boarderline at best with my OSA and the need for CPAP).

As you can see, I am the direct opposite. I almost at the point of being a poster child for severe OSA. The clinician who I met for my 6 week follow up had another gent in that had an AHI of 143.

Looking at the data another way, my AHI of 116 works out to be 2 events a minute. The average length of my Apnea events was 19 seconds and the longest being 47 seconds.
My average length of my Hypoapnea events was 18 seconds and the longest being 61 seconds. This is during 1 minute of time. So you can see how much sleep I was getting which was not much.

The clinician also said that since my OSA was so severe, that by looking at the numbers, this could have been a life threatening issue had it went unchecked. Like I said, I was freaked out!

Now the good news. Since being on the hose and downloaded my data, my Apnea is now at 1 event per hour with a average time of 12 seconds. We didnt feel the need to adjust the titration level on the machine so we left it where it is at.
On my S9, ramp time is 5 minutes at 6.5. CFM is auto from 7-10. I reach the level of 10 during my apnea event and the machine ramps back down again.

I am now in my 7th week on the hose.The nasal pillow type mask is the way to go and the RESMED Swift FX is extremely unobtrusive to sleeping with a mask. I have had no real issues getting used to it. I only had to adjust the humidity level on the S9 to take care of a little dryness, that's all. I will be using my machine until my need for PAP is eliminated. The only alternative in my case is to lose weight and have surgery to remove my tonsils. I never had that done and mine at this stage in life are rather large and are thought to help contribute to my OSA.

One more thing. Understand what is happening to you in your sleep study data. I had no idea the severity or the consequences of my OSA until it was explained to me.

Sweet dreams!!!

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

Post by Ziege » Mon May 30, 2011 7:34 am

My chief complaint wasn't apnoea, it was snoring.
I knew that snoring equals obstruction but I never had the rest of the classic OSD signs and symptoms.
It was just the window-rattling damn noise.

I started to sleep in the spare room, more and more, but the walls became too thin.
I made a comfortable nest in the garage and eventually made a spare spare room in there.
For years, the only times I slept with my wife was when we went on holidays and she always came home exhausted.

I've made people in first class plane seats REQUEST a seat in cattle-class.
I've made motel guests sleep in their cars.

I tried every pill & potion, every wizz-bang invention, weight loss, quit drinking & smoking, feng-bloody-shui, you name it.

I'm 50ish, clean living, fit, healthy, active and butt-ugly.
I always woke normally (with a raspy throat) and worked long & hard without the need to nap.
I slept very well but anyone near me didn't and my first sleep test confirmed it.

Doc said my AHIs were tolerable without treatment.
He said snoring is normally classified in the nil/minor/moderate/high ranges. Mine was in the "@#$%&" range.
A normal snoring graph was a white box with a squiggly red line. Mine was a solid red box.

The second sleep test (on cpap) was uneventful for me. I woke normally, as per normal.
When Doc showed me the graph, I thought I'd fried his machine.
But the lack of ink was really my key back into the bedroom.

From that day, 8 months ago, I've had 100% compliance with cpap and I have NEVER slept away from my wife.

I don't know if cpap saved my life, but it definitely saved my marriage.
She says if there was a similar machine to treat flatulence, I'd be perfect.

Ziggy

_________________
Machine: AirMini™ AutoSet™ Travel CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Waterless humidifier

Bahumat
Posts: 11
Joined: Thu May 28, 2009 2:36 pm

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

Post by Bahumat » Mon Jun 06, 2011 5:14 pm

100% compliant for the last 2 years, with only three missed days in the year before that.

My machine has helped me rescue my health, and my awareness. Now, coming on three years on my CPAP, I will encourage all new "hoseheads" to take heart: The first week sucks. It sucks so bad. Having that damned mask strapped to your face, it will make you hate the world and hate everything in it. For the first week.

By the second week, I was sleeping all the way through the night. By the end of the first month, I couldn't fall asleep without it on; it became an essential tool of sleeping, as much as a blanket and pillow.

It helps. More than any amount of caffeine, any amount of sleeping in, any amount of this, that, or the other thing. It helps. You wake up refreshed, your memory starts working again, you don't end up falling asleep in traffic anymore.

My advice, to newbies: Have spare parts on hand. I was fortunate enough that the one time I broke a part on my CPAP (by a careless placement of my hand, getting up), it was morning, and I had a replacement part by the end of the day. But I'd hate to be caught without my CPAP now.

Also: Cleaning of a CPAP is kind of a bitch. Get used to going through a lot of Q-tips to get the black gunk out of the seams if you leave it uncleaned for too long.

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louspeachy
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Location: Houston, TX USA

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

Post by louspeachy » Wed Jun 08, 2011 6:01 pm

Good evening!!

I started using a CPAP for severe Sleep Apnea in 2008. I didn't realize the cause of my being tired all the time and other horrible symptoms was due to lack of proper sleep. I know now that my Dad had both Sleep Apnea AND Narcolepsy(SP??) and he died at the age of 64 (I am 63). I felt really good till about a month and and a half ago when I started waking up multiple times in the middle of the night with a full bladder, a sure sign that the CPAP settings were no longer the right one's for me. I never felt truly "rested" anymore.

About a month ago, my CPAP started making strange sounds. I had just had surgery with complications so I wasn't able to take my machine in for service. Well, about 2 weeks ago, it died on me. Luckily, I was able to drive this week and went Monday night for a sleep study to get my new CPAP with the correct settings. This morning, I went and picked up my new machine!! I had already met my maximum out of pocket so the nearly $1000 was paid for in full!!!

I originally tried a lot of different masks. I cannot use a nasal mask since I sleep with my mouth open. The chin straps did nothing to help me at all. I even tried tape...forget it, it doesn't work if you sleep with your mouth open. Getting used to a full face mask took a few nights but it actually is comfortable. I think you can get used to just about anything...just don't get discouraged and give up! My NEW CPAP is set up and ready to go for it's first night's use. The biggest thing tonight will be adjusting the mask but once it is right, the worse will be over.

Not using a CPAP has been horrible. It TRULY is a part of my life now after using it for years and believe it or not, I feel better using it than not. The SECRET IS.....DON'T GIVE UP!! It only took me a few nights, it may be longer for you, but you WILL get used to using a CPAP and even a full face mask if need be. The end results of feeling rested and alert AND sleeping through the whole night are worth a small fortune.

REMEMBER...DON'T GET DISCOURAGED AND GIVE UP!!! It gets easier as time goes on!!! There IS life after CPAP!!

Louise in Houston
"Any day above ground is a good one."

valleygirl71

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

Post by valleygirl71 » Sun Jun 12, 2011 12:10 pm

2nd night with CPAP and can honestly say the change is there but only very slight. It seems I have less fog. However, after the 1st night - by comparison - it's an improvement. I was sooooo exhausted after my first night. What a challenge to sleep with this machine.

My glass is half full. It always is. I'm tired of being tired. I'm tired of the brain fog and the lack of energy. I'm tired of the weight gain, depression and sore bones. I want this CPAP to be the answer. It will be.

My story - for several years I have been complaining of being tired all the time. In the last 5 years, I was diagnosed with hashimotos thyroiditis, vitiligo and b12 anemia. I thought for sure that the tiredness was a result of these autoimmune diseases. About a year ago I had enough and begged my doctor for more tests, referrals, etc. If she wasn't giving it to me I was going to leave her. She obliged with the condition that I meet her requests for certain referrals and tests. I thought it was a fair compromise. I must mention that about 2 years ago she suggested sleep apnea and referred me to the sleep clinic. When they called, I refused the appt. Fast forward to last year - I reluctantly agreed to her 2nd suggestion to the sleep test. I must mention that it's taken almost a full year to go through 2 sleep tests, appt with sleep study physician and getting the machine. Yes - the waiting list is that long! When I got the news that I had OSA - I cried. I was in complete disbelief. I would've bet my house on it that I didn't have sleep apnea. I thought I slept at night. The doctor said it was severe and I had no other alternatives other than CPAP.

I'm pushing 40 and am a single mom of a wonderfully bright active 6 year old girl. I want more than anything to have energy to be with her. I want to see her grow up into an old woman. I want to be healthy. She so deserves a healthy mom. My health challenges me. But I will perservere. I have to. It will get better, I will have better days, more energy, refreshed feelings upon waking, mental clarity, better memory. I will be able to put one foot in front of the other to exercise, eat healthy and lose weight. I expect all of this as a result of a better sleep. Is it asking too much? No. I do know however that it won't happen over night. I will be a success story CPAP User. It's now on my bucket list of things to do!

I have wasted time worrying about the intimacy issues for those moments when I find someone worth inviting in to my room at night. How in the world do I introduce a guy to my headgear? I will cross that bridge when I get to it but in the meantime I am telling myself that the biggest worry I should have is not if he will accept my headgear but if he will be fabulous enough to be a part of our lives... the headgear is irrelevant by comparison. right?

Thanks for sharing your stories - they help and when I have moments that the water in the glass sinks below the half full mark I will pull from your stories.

mikefrommelb

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

Post by mikefrommelb » Wed Jun 15, 2011 7:16 am

Hi Everyone,

I am 43, type 2 diabetic, 20kg overweight, 5 kids (aged 5 to 17). I think I have had apnea for at least 15 years (have slept on the couch for most of that!)

Decided 6 months ago to get fit and lose weight - went to see a personal trainer (still seeing one 2 days a week), but instead of feeling pumped after each session, felt really really sleepy. Lost 5 kilos, then my weight levelled, and despite all the hard work - no improvement! . So a month ago, did the sleep test thing, have done my two nights in the sleep clinic (diagnosis, then cpap trial), and next week I off to get my cpap machine.

The cpap trial went ok, if a bit claustrophobic (especially when the airflow was at it's highest, and I panicked a little)

And to be honest - I am terrified of the thought of having to wear a mask every night!! Surely I'm too young for this!!!

I'm really looking forward to the benefits - and this thread has been very reassuring for me. I'm glad this site is here.

Cheers
Mike

mikeandtina59

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

Post by mikeandtina59 » Sun Jun 19, 2011 9:35 am

Hi, Cindy Lou Hoo,
Good to hear your success story. Can you tell me how long it look before you really felt better...?
Thanks!
Tina

ultimatestrap
Posts: 22
Joined: Thu Feb 17, 2011 10:02 pm

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

Post by ultimatestrap » Tue Jun 21, 2011 2:49 pm

Hello Newbie....Hope you are feeling better....Have you heard about the Ultimate Chin Strap for Sleep Apnea....it is terrific...really does the trick as far as keeping mouth closed and keeping air in your lungs....it is very comfortable, lightweight..comes in a regular universal size and also a smaller size....Hope this helps....getting my zzzzzzzz's...

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pollyanna40
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Joined: Wed Jun 22, 2011 1:38 am
Location: Wigan,Lancashire,England

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

Post by pollyanna40 » Fri Jun 24, 2011 1:48 pm

Hi Catnapper! thanks for the question iv read everyones answer! iv had my cpap a wk and i want to sit in a corner and rock ,feel like im seriously goin insane,not worn it for a few says and felt great! grrr wierd,but after reading things wot other people have written i put it back on last nite! only for 4hrs,and i didnt wake up with Shakes,i have severe osa, sleep study showed 60times an hr airway collaspe,once every minute,scary stuff!! but that mask is awful makes me so ill..this site helps me loads,x x

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Mask: Mirage Liberty™ Full Face CPAP Mask with Nasal Pillows With Headgear
Additional Comments: Fear The Fear,But do it anyway!!! :)

valleygirl71

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

Post by valleygirl71 » Fri Jun 24, 2011 6:53 pm

It's now been a couple of weeks and I can say that I now notice a big change in my energy level. I have been happier, rested, more patient, sharper and energetic. It's hard at first and giving up would be so much easier but given how I now feel after keeping at it - I can't see me ever going without. There have been nights where when I woke in the morning to find I removed it because it's frustrating to have the damn thing on but I can see such a difference that I really won't go without it again. So what if I take it off middle of the night? I'm keeping at it anyway. I firmly believe that in order to feel the true effects of CPAP and actually sleeping - is to have a positive attitude. Fight it all you want and it will only take you longer to get to your ultimate goal of feeling better. I have ALOT of anxiety and had panic attacks in hospital when wearing it the first time. I still feel anxious putting it on. But honestly, I feel so much better that I just push through my fear. Don't let fear hold you back. It brings me to tears when I think of how I felt before CPAP and wonder how the h#ll I managed to get through any day feeling the way I felt. I was always so tired and exhausted all the time. I'm only sad that I fought the suggestion that I could possible have sleep apnea from my doctor for so long.