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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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OboeVet
 
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Re: Newbie would like to hear success stories, please.

Postby 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.

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

Postby 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.

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Arlene1963
 
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Re: Newbie would like to hear success stories, please.

Postby 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.

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

Postby 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.

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

Postby 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.

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

Postby 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!

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

Postby 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.

HELP!!

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

Postby 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!

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

Postby 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.

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Re:

Postby 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.

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

Postby BryanA on Sat Nov 04, 2017 12:15 pm

Iv been using a CPAP for 12 years now. Have actually gotten to the point that i cant sleep with out it. As for the feeling better.........some people see it the next day, some in a week and some it takes a year. What must be realized is with APNEA, its a sleep deprivation issue. Depending on how long a person has been dealing with it will be the determining factor. The body needs time to recover from this and each person is different. With me, it had gone on for years and it took a while to recoup. I actually went, got tested, received the equipment and tossed it in the corner for a year or two because i didn't like it. It took seeing a close friend suffering from a stroke to make me realize the importance of it. He too had Sleep Apnea, didn't use his machine and had blood clots forming in his lower extremities ( a side effect from Apnea ) and one broke loose.
With me, I was suffering from sleep deprivation, memory issues and weight issues. Alot of times its the hidden benefits, the ones we dont see instantly. Stick with it, it will get better.

Kate60
 

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

Postby Kate60 on Sat Nov 11, 2017 10:43 pm

Hello there. I'm not a sufferer but my husband is. Has been for decades. His apnea was a nightmare for me as he would constantly stop breathing. He wouldn't listen to me, or would just kind of laugh it off. I knew it was a serious situation and so far from normal. Anyway after yet another terrible nights sleep for me I videoed him. He didn't want to watch it the next morning but I insisted. That was the turning point. I made an appointment with a sleep specialist and from there he has had two sleep studies and now has a Resimed machine. Sorry I don't know all the lingo but he's had it for about 3 months now. He started off with a nasal pillow but too many leaks so he now has more of a mouth and nose mask. He has never ever had a problem sleeping so he has not been disrupted by having to wear it. The difference for him (and me) has been huge. But ..... the years of constant breath holding has played a terrible toll on his heart. He collapsed last week and I revived him. He has been in hospital 200kms away since undergoing many tests and tomorrow morning is undergoing a double by-pass with a pace-maker as well. He is 55. Back to the improvements since he is using CPAP. His blood pressure which he was on medication for for the past 7 years is now normal. They have taken him off that. His Cardiologist says that his severe sleep apnea (av. 74 times an hour between 23 - 84 seconds breath holding during his first sleep study) has put enormous strain on his heart. It is now damaged hence the collapse. I wish I had been insistent and not waited until the bitter end of my tether to have insisted and not just plead and got the ball rolling. At least he is alive and with the surgery, lifestyle changes (big smoker and drinker) and his CPAP machine he should be around for a good long while. The other noticable difference was that as he never got into REM sleep he was always fatigued. Could fall asleep within 2 seconds during the day etc. Never whilst driving but his Resp Doctor said he was legally not fit to drive. Well since he has had the machine, he sleeps 8-9 hours a night, and zero naps during the day. I wouldn't say he is bounding with energy but I think his heart has a lot to do with that. I can't wait to be 6 months down the track to see him with a spring in his step instead of strolling at the same pace as an 80 year old.

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

Postby Pat90 on Wed Nov 22, 2017 11:01 pm

I'm 27 years old and I was diagnosed with sleep apnea in July 2016. I started falling asleep at work and throughout the day. I would also feel like I was suffocating at night but I never thought anything of it. Then one hot summer day my feet started swelling up and hadn't gone down for a few days. That's when I got scared and went to the emergency room. The nurse saw me and checked my blood pressure as well as my CO2 and it was super high, she did it a few times to make sure it was right. After 3 times I was rushed to a room and started getting tests done. Since I was 26 this wasn't normal and they made sure to do all the tests. I won't go into all the details of that day but I was diagnosed with obstructive sleep apnea. I was assigned to a respiratory doctor who explained everything to me as well as a nurse who would come to my house to check up on me. It took me a few night and about 3 different masks to finally get comfortable with it. On top of my sleep apnea they found that since I have a small body frame that my heart beats a bit faster than regular. So I was assigned to a cardiologist and had to do more tests. My doctors told me that I will have a normal life but will have short of breath when I walk for a bit. But besides all that the CPAP has helped soo much and my doctors told me it saved my life. I had soo much CO2 in my body that I could have had a stroke or died.

But to this day the doctors still don't know how I got it and why I got it. I'm just happy they found a solution and it's helped tremendously.

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

Postby raysgirl on Tue Nov 28, 2017 10:31 pm

In the first month, I did not get that burst of energy, in fact 3 months in with new machine I still don't have a burst of energy. I started off sleeping my usual 6.5 hours. That has increased one hour each month. I am regularly achieving an average of 8 or more hours. Sometimes, they are not in a row, because I have an old ESA dog who has now reversed roles with me. I have to get up at night to put her out or I am punished by puddles. Since I prefer dry floors and furniture, I get up. But when we go back to bed, I sill get a total of 8-8.5 hours. Last nigh, I was sick and the machine registered 11.7 hours. But let me tell you the best part . I can drive confidently again without worrying about falling asleep behind the wheel. I don't even fall asleep on the sofa using the computer or watching TV, my favorite three places to nap. So no "burst" of energy, but way more energy, and no daytime sleepiness that used to dog my life. It was awful having my grandchild wake me up when I was supposed to watching her and I would nod off. This is a HUGE accomplishment for me. I also have pulmonary hypertension which has been linked to the apnea so I am hoping for an improvement there too, but I have not had any testing for that since being on a bi-pap machine which I love.

My sister won't even be tested and I know she has sleep apnea, maybe worse than me, and mine is pretty bad along with COPD (from second hand smoke, I have never been a smoker.) She drives long distances to visit us (352 miles each way) and stays for long weekends. She has had one accident a year or so ago hitting a cement wall and wrecking her car, admitting "I closed my eyes for just a second, I was so tired." Fortunately, neither she nor her two dogs were hurt, but there was a lot of broken glass. So far, those days seem to be behind me. I have been so blessed never to have had an accident asleep at the wheel, (and I should have, but I have had collisions where it is hard to gauge the effects of poor sleep) but for 10 or more years I have refused to leave my home town without another driver in the car to watch me and keep me awake. Those trips are really rare. I did recently (night before elections) drive 100 miles to meet someone with political material for Election Day and 100 miles back without even being tired let alone sleepy and that occurred late at night in a driving rain. I did have my son with me, and he could take over if necessary, but I am pleased to say it was not necessary.

I have a brother who I know uses a cpap machine as they had to bring it in for use in the ICU when he had major surgery for lower esophageal cancer which was successful treated with surgery with no treatment other than that surgery, but apparently has good results with his machine, too. There has been no evidence of the cancer with extensive testing after two years and he looks great.

Best of luck to you going forward. You will find more energy from a night of real sleep.

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