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Newbie would like to hear success stories, please.

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Expand view Topic review: Newbie would like to hear success stories, please.


Post by alicec22 on Wed Oct 18, 2017 8:05 am

gaggy wrote:I have only been on CPAP since 8/1/06, and it has been an amazing journey. I was really upset at first but hung in there. Life was going from not being to put one foot in front of another to being able to walk 2 miles with my son. It had gotten to the point I could not play golf. I have played 18 holes about 3 times since and I am playing in a tournament this weekend mutuelles TNS. I fought through 3 masks and waking up while on cpap at least twice a night. This week I have slept all night and I am amazed. I feel better, fog is lifting. Now granted there are bad days, but the good out way the bad. It's so funny my thing now is sleep. I know I have to follow my treatment to live.
This site has helped me. Without the support of these people I think I would not come as far. Each day is a new beginning.

Well, good luck to you. And we hope that all this will quickly disappear and that you will recover health in a few times.

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

Post by Darth on Wed Sep 20, 2017 9:53 am

Took me two years of saying “I am exhausted all day every day” to get fitted. I was “only” having 7 AHI’s, but my O2 would drop into the 80’s over half of each hour (and I was probably awake the other half-hours!). The first month I couldn’t use it more than 4 hours a night (midnight congestion) but I knew right away it was working. After another month of trying different masks and settings and hoses and hangers I’ve gotten several nights over 7 hours with less than 1 AHI a night in the past several months. The overall difference just from that is amazing: for the first time in years, I felt functional during the day! But for the last month I’ve also been on 100mg of modafinil and the combination of not being awake half of every sleeping hour, not having O2 in the 80’s half of the other hours, and the little pill every morning has changed my life. I am alert, and awake, and can concentrate, and have an eagerness and optimism I barely remember from, oh, 30 years ago in my 20’s. I could just cry about all the time it took to figure out what would work, and how difficult and complicated it was, but I’m too busy enjoying being human again.

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

Post by sleepybrit on Tue Sep 19, 2017 3:36 pm

I'm new to this, but sounds like you're having some mouth leakage issues. Perhaps get a anti-snore chin strap to keep your moth shut, or change your mask for a full\mouth&nose mask.
I can attest that these things can and do work - not as easy for all to get used to as for others admittedly but.
Re: the leg pain I used to have that before I got the apap but it's gone away now since I have been on it for a while... I would hazard a guess that your leg pain may be related to your obvious lack of sleep and if you can resolve that issue hopefully it may improve.
Good luck!

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

Post by Chewning on Tue Sep 19, 2017 2:59 pm

Newbie here!

I've been on this thing for over 5 weeks; haven't really seen noticeable improvements. In fact, I've seen enough problems to make me want to turn in the towel. I suffer from insomnia and apnea. Cpap keeps me up at night; it was hard to sleep before, now I have even worse problems. Try to go to bed by midnight; still don't fall asleep until 12:30 or more. BUT, I'm WIDE AWAKE when I wake up... at 2:00!! And, then I can't get back to sleep. :roll:

And, I've had a lot of leg pain being on this thing. Trying to find a good sleep doctor, so I'm "in between"; with no support. Primary doctor says it's not related, but it never happened like this before every day unless I was doing some major cycling. I wake up and my calves feel like stone. Sometimes I wake up in the middle of the night with my legs and back hurting that it wakes me up. Anyone else have this??? Will it go away?? I feel like a zombie during the day -- shuffling around because my legs hurt and having zero energy.

And, apparently, I talk in my sleep. I never knew it before, but BAM!! open my mouth while I'm sleeping and that wakes me up as the sudden rush of air comes out. ... Again, have to wait 20 minutes to an hour to fall back asleep.

Needless to say, I'm still suffering from daytime drowsiness; usually hits right about 3:00. I hate this machine. I hate what it's doing to me. I hate that I can't get on schedule with this. I hate the way it sounds. (Supposedly as quiet as a whisper -- BULL!!) Doctor who prescribed it said I would feel 100 % better after the first night. Really feel lied to. Plus, got charged for the sleep test as they didn't check with my insurance first, who would have paid for it had it been done in a facility. (Now, $640 poorer..)

I'm super trying to make this work, but mentally, I'm just not seeing the benefits. I can't sleep through the night. Was really hoping this would help.
I have read that cpap actually induces insomnia, so I feel worse off than before. Doctors want to cure my apnea -- I just want to sleep for 8 solid hours a night. Heck, even 6. I would be happy with 6 hour of uninterupted sleep every night.

How does one recovery from insomnia while being hooked up to a hose?? Seems so counter-intuitive.


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

Post by sleepybrit on Tue Sep 19, 2017 12:06 pm

After a few years of having severe daytime sleepiness, dozing off uncontrollably during the day. I finally went to the doctor.
I was diagnosed with severe OSA 2 months ago with an AHI of ~90. from my home study. Doc rushed ordered me an APAP - (Resmed Autoset 10) and the dreamwear mask.
First night was suprising easy to adjust to the airflow and the dreamwear mask was almost un-noticeable... I only managed 4 hours of sleep that night but woke up feeling so much better than I had done in years.
Over the last couple of months I have used it every night and whenever I take a nap... I sleep through the night now with at least 6 hours per night - my AHI is down to <1 typically and daytime sleepiness is basically gone. I have much more energy, my resting HR has dropped by about 20bpm and I feel just so much better..
The machine has given me my life back - completely amazing!

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

Post by JimmyJ on Sun Jul 16, 2017 11:16 am

Not sure that I have a dramatic success story. But I use my mask religiously, even for short naps during the day. It only took me about a week to get used to the Mask. When I dont use my mask (get drunk and fall asleep without it) i do feel terrible the next day. I didnt have health insurance for a while so I didnt get started as soon as I wanted. But a couple of years before medicare kicked in I had an osteopathic surgeon just look at me as say I couldnt do day surgery because i had sleep apnea (no testintg, he just knew). So I generally feel better when i use the mask, but its wasnt life changing.
But I do have a story. A good friend at work described symptoms that were exactly sleep apnea but he didnt have medical insurance either, and he couldnt afford the sleep test (mine was $5k) I had been on the machine for about 8 months, and during that time I changed secondary insurance providers (went from AARP to Humana) and ended up with two machines. So I gave the first machine to my friend. It was night and day for him, he was ecstatic about how good it was for him. Then a couple of months later the insurance companies figured it out and demanded we give back the extra machine. We did so and he said it was horrible, couldnt sleep, felt miserable, etc, horrible, etc. I had an appt with my pulmonary specialist, told him the situation with my friend and he wrote me a prescription for a machine (the pressure setting I had worked very well for my friend). Then I ordered a Respironics system one on line for $330 for my friend. He was a very happy camper, he didnt turn into a nice person (he was something of a curmudgeon) but the machine made a very real difference in his life.

So even though you might have trouble adapting, just keep trying various things to make you comfortable with your machine (you have a humidifier right?)
And as a test just stop using it for a couple of days and you will realize how much better is is with the mask.

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

Post by Maxtrixbass on Mon Jul 10, 2017 5:06 pm

I am one of the lucky ones who noticed substancial changes after the first night. I felt like I had actuallyslept for the first time in many many years (at least 15). My biggest change is that it feels the mental fog has lifted.

Long story, but did it without any help from the medical profession. This board was tremendously helpful.

If you are new to it and don't see results right away, stick with it. If you delayed outcome is even close it will be very much worth it.

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

Post by Arlene1963 on Wed Jun 14, 2017 12:23 pm

I've already posted to this thread and now, almost a year later, want to update.

My AHI is pretty consistently less than 1 most nights, most of those being central SWJ events, and finally, my flow limitation chart has been tamed, this is due to increasing my CPAP pressure to 9cm. Also, EPR 3 works wonders for me and transformed my CPAP use.

Thanks to advice I read here I learned to use a soft cervical collar to reduce mouth leaks and to help tame flow limitations.

I think it was Chunkyfrog who recommended to a poster that keeping a supply of wipes next to the bed to wipe off a nasal pillow (and face and nose too) during the night can be useful, and this has proved to be very helpful advice, as I would often wake up at night with what felt like a hot and sweaty nose. Snippets of advice like this has made adjusting to CPAP so much easier.

Honestly, any success I have in my treatment is largely due to finding several online Sleep Apnea forums that I've read and followed closely.

I am sleeping much better, feeling healthy and happy. My grateful thanks to those who provide advice and encouragement day in and out.

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

Post by wajg55 on Tue Jun 13, 2017 8:51 am

I started on CPAP 20 years ago. Getting used to the mask, the noise, and the pressure took a bit of stubbornness over a few weeks. I don't really remember how long that adjustment period lasted, but I do remember what happened a few weeks later...

As I walked down the hallway at work, I suddenly realized that I was awake. I remember looking around and thinking that everything looked different (clearer? brighter? crisper?). It became obvious to me in that moment that I had been a walking zombie for many, many years. My commitment to CPAP crystallized in that moment.

I have occasionally gone without CPAP for a night or two. After the first non-CPAP night, I am noticeably dragging and irritable. I feel very tired. After a second consecutive night without CPAP, I become totally useless. I cannot think, I cannot stand being around people, my overriding desire is to curl up and go to sleep. Fortunately, I have only experienced this a few times (maybe 10-20 times over the 20 years), just often enough to know what CPAP means to me.

I had another sleep study done recently. For those who like numbers, my oxygen saturation (O2sat) is under 90 half the time when I do not use CPAP; it occasionally drops to the 70's. With CPAP, it hovers around 97 and never drops below 95. Unlike most people, I consider O2sat to be the most important number to look at. If your blood doesn't have enough oxygen, that means your brain, heart, and other organs do not have enough oxygen. If this is chronic, it can lead to all kinds of medical issues. In my case, it led to atrial fibrillation and metabolic syndrome. Normal O2sat is somewhere in the upper 90's.

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

Post by OboeVet on Mon Apr 10, 2017 7:10 pm

Thank you all for sharing your successful journeys! When I started in 2013 this virtual community definitely helped me through the hurdles.

Sent from my SAMSUNG-SM-G900A using Tapatalk

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

Post by TASmart on Wed Apr 05, 2017 2:47 pm

I have been on CPAP for two weeks now, and thus far it's been a total success. I was 99% sure I had sleep apnea for many years, basically since I first heard about sleep apnea. Of course I did not realize either the severity of the disorder, nor what treatments were available. First noticed snoring, multiple night awakenings, and extreme restless sleep since I was in high school in the early 1970s. I first noticed that I was tired most of the time a few years later, wrote it off to college pressures. Years passed. I refused treatment for HBP saying I was always that way gained lots of weight, entered recurrent depressions, went on and off and on anti depressants. Since I was first treated for depression in the 1990s, I complained about being tired all the time. The standard answer was give it time for the antidepressant to work. I gave it time, and felt better, but still fought to get out of bed, and never felt like doing much of anything outside of work.

And so it went. Finally in 2003 psychiatrist told me he thought I had ADD and possibly Sleep apnea. By then I was self insured, and could not afford sleep studies. Treatment for ADD ( now I know it was not ADD but was being so tired I needed the stimulation of work) was a low dose of amphetamine, plus the long cycles of antidepressants. It all helped, but I still was tired and worn out all the time. I had no reserve to do much other than work, ski and a bit of bicycling.

Pretty much from that point on, I forgot about apnea, and whenever I saw a Dr complained about tiredness. Tried some thyroid meds only slight help.

Finally in 2016, fully too tier to be any more tired, I got a referral to a sleep center for an initial consultation. The referral was in July. Sleep Centers here are so backed up I had the initial consult in October, the first sleep test in December and the titration in March. Dx was moderate sleep apnea, desaturation down to 82% for 1/4 of my sleep time. I received a Resmed Airsense 10 Auto on March 22. First couple of nights were difficult. Had my sinuses swell shut the first night, lots of leasks and mouth breathing the next couple of nights. but my AHI was down from and untreated 27 to 3ish. Over the last couple of weeks a few tweeks and its running from .7 to 2 nightly. And I Feel fantastic.

From the first morning I felt awake. I can't remember when I did not feel tired nor want a nap. I have quit napping, i wake spontaneously w/o an alarm at between 5 and 6 daily. My mood is better than its been in a very long time. Although I have not felt a big energy surge, what has happened may be better. I am not sleepy. I am awake all day every day, and I feel a sense of calm. Previously I needed to drink a lot of coffee to feel alert and needed that wound up nervous tension to be productive. Now, I am calmly and happily awake and alert. What a great feeling.

That's my story, hope it helps someone seek and get treatment. Apnea is worse than death - its a half death that does not need to be.

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

Post by jsielke on Fri Feb 24, 2017 12:35 pm

My problem was I was getting up 8-12 times a night and going to the bathroom. I thought it was a bladder problem, as I had bladder cancer 20 years ago, successfully treated with BCG (a kind of chemo) and had no recurrence. My Urologist even said "Are you getting up to go because you have to go, or are you going because you wake up?" I didn't consider Apnea, as I do not snore (confirmed by wife.) After waiting some time, I went ahead and took an at home sleep test, which showed my AHI at .5, so no apnea, I thought. The sleep specialist noted that my SpO2 dropped below 85% several times, which coincided with my waking. He suggested I might still benefit from CPAP.

Anyway, long story short, I got a Phillips Dreamstation Auto, and a Wisp mask. First night was rough, as I had it on fixed pressure (13). The software showed and AHI of 14!

Moving ahead 3 weeks, I got it set up on auto, 6-15 pressure, and got a Nuance pro nasal pillow mask. What a difference. Last night, for the first time in years, I only woke once. Dream mapper shows AHI 1.2. This is about typical for last 2 weeks. Been using CPAP 100% of the night, and sleeping better than I ever had. :D

Just for curiosity, I ordered the CMS50F SpO2 monitor, which should come today. I want to see how the SpO2 levels are doing.

I do have COPD, but learned diaphragmatic breathing in Pulmonary rehab, and still in my Tai Chi and Aikido classes. Back about 15 years ago I went from 233 pounds to 170, and hold there. Where I could not walk to the mailbox without stopping to catch my breath, now I hike regularly 3-5 miles, and do Tai Chi and Aikido, work out at gym, etc. Even at that, until CPAP my sleep was interrupted. During day, even with exercise, my SpO2 is between 94-97%. It was only at night, when I would go to sleep and start breathing shallowly, that it dropped.

Anyway, good thing I started. A bit late (I will be 73 in April), but better late :roll: than never!

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

Post by EdNerd on Thu Feb 23, 2017 7:56 am

Tomorrow will be two weeks since I brought my machine home. SleepyHead shows my AHI has dropped from the 43 that registered during my sleep study to between 2 and 4. And I don't snore any more (more of a benefit to my wife, 'cuz it never bothered *me*!). I still wake up tired - but that's from going to bed at 10:30 or 11:00 and getting up at 4:15!!


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

Post by tspeerjr on Sat Jan 28, 2017 2:40 am

Dope! thanks!

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

Post by Krelvin on Fri Jan 27, 2017 5:26 pm

tspeerjr wrote:how do you post a screen shot on this site?


Might provide some assistance.