Newbie would like to hear success stories, please.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.

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

Post by Chewning » 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.

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.


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

Post by sleepybrit » 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 Darth » 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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Post by alicec22 » 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 BryanA » 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.


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

Post by Kate60 » 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.

Post by Pat90 » 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.

Post by raysgirl » 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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Re: Newbie would like to hear success stories, please.

Post by eclecticmn » Fri Jan 12, 2018 9:04 pm

I was falling asleep at work. I was very tired. it was 8 years ago.
They woke me up about one hour into the sleep study and put a mask on me to determine the proper pressure.
They woke me up 5 hours later and kicked me out of the sleep center.
It was the best night's sleep I had had in many years.
The sky look bluer than it had before. My brain worked again. Less acid reflux. I love my machine.

When I read about a ferry crashing into a pier, a train crashing into a station, or a truck driver asleep at the wheel I think it might be OSA.

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

Post by Mzdocb » Mon Jan 15, 2018 4:43 pm

I started seeing a psychiatrist who was double boarded in internal medicine and psychiatry for PTSD. I mentioned one day how late afternoon, at work or with my kids, I would get so angry, and despite going thru the steps I was taught in an anger management course, I could not control myself. She looked at me and said "Something is really wrong with you!" Thanks doc! Well what she then said was you need to be tested for sleep apnea. Which I did, was told it was mild but should try cpap. WITHIN 2 WEEKS I WAS A NEW PERSON! No losing it at work or with my kids. I realized the personality changes in me had been going on for about 8 years, and wished I was diagnosed sooner for the sake of my loved ones. She also tested my thyroid and a bunch of other things under the diagnosis of "Fatigue". Check with your doc there could be other issues. Plus, you don't know if treatment hasn't kept you from developing hypertension, heart attack etc. Also, try different masks, I went from the jumbo face triangle to the nasal pillow. Good luck!

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

Post by nicholasjh1 » Tue Jan 16, 2018 10:39 am

This is going to sound crazy, but I just met someone that I really like and after we slept in bed together and held each other each while sleeping during the night my machine says no apneas! (though I've been sleeping alone the last 2 nights, we haven't moved in). It could just be a crazy coincidence, but it feels good to have no apneas (still Cpap assisted).
Instead of Sleep apnea it should be called "Sleep deprivation starving of oxygen, being poisoned by high CO2 levels, damaging the body and brain while it's supposed to be healing so that you constantly get worse and can never get healthy Apnea"

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

Post by lucas7bm » Sun Jan 28, 2018 9:13 pm

nicholasjh1 wrote:This is going to sound crazy, but I just met someone that I really like and after we slept in bed together and held each other each while sleeping during the night my machine says no apneas! (though I've been sleeping alone the last 2 nights, we haven't moved in). It could just be a crazy coincidence, but it feels good to have no apneas (still Cpap assisted).
Are you trying to say that this person was the reason your whole body and mind worked better? That love helped you to achieve a higher state of perfection?
It's 1:10am here and after reading this I'm having this awkward feeling that I sometimes have when I need to write a song. Thank you.
"Act as if the maxims of your action were to become through your will a universal law of nature." (KANT, Immanuel)

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

Post by tlohse » Sat Feb 10, 2018 9:17 pm

Just keep doing it. I’ve been on cpap non stop since 2013 and doing great. It gets better the more you use it each night.

Mask: Mirage™ FX Nasal CPAP Mask with Headgear
Humidifier: PR System One 50 Series Heated Humidifier
Additional Comments: First became a cpapper June 11, 2013 pressure setting 10cmH20. DX: Severe Sleep Apnea with Hypersomnia. REF# 450P
Thomas Lohse
Cpap is 4 ever.

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

Post by edatlanta » Fri Feb 23, 2018 7:57 am

I am now 70 and have snored for years, but not terribly (but how do I know since it didn't bother me). I have also been divorced for 20 years and slept alone most of this time. My ex and I still have a good relationship and we are together all the time and vacation together, etc. We are in Keystone, CO right now on vacation. She retired a few months ago and since I am a full time RV'er she started traveling around with me in the RV. Now the snoring has become a problem.

I had a sleep study done and it showed an AHI of 35. So I was prescribed for an APAP. I ended up with a Dreamstation
APAP with Humidifier and a Dreamwear mask. The mask is the medium frame with all 3 pillows. I am using the small pillow.
My Dreamstation was initially set for a fixed pressure of 7.0 starting at 4.0 and ramping up after 20 minutes. The humidity setting was originally set at 3.

My usage started 10 days ago in central Alabama where I live most of the time or a least in the SE US. I had zero problems adapting to the mask or the therapy. It took a little getting used to putting the mask on, but once I got the hang of it no issues and virtually no leaks and the big one ZERO pain or discomfort.

The first night I slept for 6:38 hrs with an AHI of 0.8. The next 4 nights the AHI registered 1.6, 1.3, 1.0, 1.8, 0.7. All with sleep times in the 7:00 hrs +/- a little bit. Obviously the process is working for me and working great as far as I am concerned and my ex says the snoring has completely stopped with only an occasional sound coming from me. I have changed the start pressure to 4.5 and the ramp up time to 15 minutes since I was having no issues and this has worked ok.

After the first 5 nights we left for Keystone, CO with an elevation of 9,200'. I contacted my DME to see if the auto altitude adjustment would work at this altitude since I couldn't find that spec for the Dreamstation anywhere. She checked Respironics and they stated 9,200' would not present a problem for the Dreamstation and no settings change would be required.

The past 5 nights have shown similar AHI as at lower altitude with 1.5 +/- 0.5'ish. The one issue I have had at this altitude has been sinus issues due to the cold and lack of humidity. The outside temperature has ranged from -12F to 25F and has never been above 25F since we have been here. After the first night here we have a humidifier in our hotel room set on high and I changed the humidity setting on the Dreamstation from 3 to 5. Things are better now. I was waking up 1 to 2 times a night with completely or close to blocked nostrils. A quick nose blow and then back to sleep. Increasing the humidity setting and the in room humidifier has helped this a lot.

One more night here and then back to Alabama and lower altitude and much higher temperatures. So far life with the APAP is great an was much easier to get used to than I have read about. I guess I'm one of the lucky ones.


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

Post by Jeramief » Sun Mar 04, 2018 1:10 pm

I am 47 years old had my first sleep study around age 30 said I had mild apnea had second study in September 2017 no longer mild. Had 43 episodes a hour oxygen level were very low as well I was getting up to use the bathroom 4-5 times a night due to waking constantly. I started October 25 2017 on a dreamstation I don’t feel remarkably better but I do sleep and no longer get up at all through the night. I feel somewhat better through the day.

I don’t have a computer to use sleepyhead my MacBook needs to go to repair place I also use a Dreamstation go 2-5 nights a week depending on work and if I am at our family vacation home I use the DreamMapper app my AHI is usually 1-1.5 lowest was .08 I’m satisfied where I am at this point with my therapy. I am set at 16cmh20.

It took me a while to be successful but I feel I am getting there attitude and determination pay off.

Additional Comments: Use Dreamstation go as well 2-3 nights per week