Newbie would like to hear success stories, please.

[jazzer4]

A new life for me.

I was diagnosed with Sleep Apnea in Nov. of 2009. I'm pretty sure I've had it for about 15 years. I can't figure out why none of my doctors recognized the signs, as I sure had them all. But, that was then and this is now.

I'm an avid golfer. I was a dance teacher for 30 years before I retired. I live in a gated golf community on a beautiful lake. But I was a life drop-out because of Sleep Apena. I spent so much of my time worrying about my memory and my health. I stop golfing because when asked what I did on the last hole I couldn't remember. I couldn't retrace my hits....I just lived in a fog, a day to day fog. Post-its everywhere. People would talk to me and I couldn't remember much of the details the next day. I stopped golfing and stopped calling my friends. My skin was so bad, grey and wrinkled. I just looked terrible. I was embarrased. I had aged 5 years in just one. I was thought everyone must think I'm just stupit and old. So I just dropped out of life. I stayed home and was depressed.

Now, on c-pap I'm alive again. It took 8 months to get here. I know I couldn't have done it without this forum. I didn't ask many question, but I would read everything posted everyday. Just gathering information and trying to apply it to myself. Try this try that. I never was in danger of not using my machine, as I need it and I knew it. 110% compliance for me.

Success didn't happen overnight for sure. I certainly had and still do have problems pop up now and then, but I'm no longer in that FOG and wow has my skin repaired. Golfed a 89 the other day. I have my life back, and I feel GREAT, no not great...wonderful!!
Lots of the other health issues I was having just started to get better, slowly, day by day. Now they all seem to be gone. So far, so good.

A big turn around came for me about 2 months ago when I started to take the ERP level from 3 to 1 and Ramp only. It took weeks of slow adjustments to get there but boy has it made a difference for me. My breathing is so much better now. And, I also think there is a lot to be said for paying back sleep debt. For me slow but steady progress.

I also played around (without this forum I would never have had the courage to adjust myself) with the pressure over months and found what I think is working for me by reading my card and keeping good notes like Katie says.

I just don't know how to thank you all enough.
How about diner at my house tonight?

[reallyneedsleep]

Cat, i'm on my 3rd night and man I can feel a big difference! Even with the "getting use to it period" 4-6 hrs of sleep with blows 8-10 without away! I think I may be one of the lucky ones as I really have no problems with the mask (full) other then when I get an itch the noise of breaking the seal wakes me up...lol, but I am sure that will improve as well.

Stick with it...some folks feel it right away, some take time,some feel it the difference in a big way, others a little over time. At least that what i read on these posts.

[Guest]

Hello, I am new to the cpap world. I have used the machine for approx 3 weeks. I am looking forward to feeling much better. I have seen some improvement but hoping for more. I have some health issues that have been said would improve with using the cpap. I read your comments of and they are encouraging.
Thank You!

[sunny1]

Hi I just started on my CPAP on August 19th. It is very difficult to get used to having the contraption on my face but it is so worth the benefits. After the first night I felt great, almost vibrating! The next morning was better, I did so much that day without yawning and dragging myself around, also no naps! I am very happy to see that there are solutions for the cheek scars! I actually made myself one today. I look forward to finding all my answers to my questions here.

Thank you so much for this website!

[tony72]

great stories,hope mine goes well when i get my machine.

[Jerry0727]

I am also a new user I am feeling the same way I have not noticed a great deal of improvement but I am sleeping better.
I also sleep all night now. I also wonder will it get better. Is this really for me. I have decided to hang in there and keep trying it. this is a very good site and I have read the comments I really think it has helped thanks everybody for the responses they have helped me.

[Visiting for now]

I don't know how long I had sleep apnea - years before I was diagnosed, certainly. But when my respirologist sent me for a sleep study, the way I felt in the morning made me phone his office and demand a prescription -NOW! I had forgotten what a good night's sleep was and what it could do for me.

In 2007 I was taken to hospital with both toxaemia and a broken back. In the haste my CPAP wasn't put in the ambulance, and for a while I was too far out of it to notice or remember. In fact I got through eight weeks in hospital without it.

Then I came home and put it on again. I got a serious message very quickly. Whenever I go, whatever I am doing, my machine should go along too and be used. It is teh difference between survival and a full life.

[msla]

January 2003, I had the best sleep in years at the sleep study . I have used CPAP every night since with the exception of about 5 when I was traveling and stuck in an airport or on a plane in steerage. I average over 7 hours a night and cannot imagine not using it. I have had several masks and have settled on FP ophus 360 nasal pillows. I am working on the assumption that the smallest thing to seal will be the easiest. I am a side to back to side sleeper and have not had trouble with leaking. I am lucky and took to CPAP immediatly.

[Cindy Lou Who]

Vacation before/after A-pap: A Comparison.

Last year’s vacation: I slept 11 to 12 hours each night for the first ten days before I really felt like doing anything, felt irritated emotionally, and in a mental fog most of the time. I went through the motions in all the fun stuff my husband wanted to do; as if I ate expensive chocolate and it tastes like cardboard!

This year’s vacation after nearly four months of A-PAP: Slept 9 to 10 hours each night but had lots more energy after five days. Not panicked or obsessed about something going wrong. I forgot things but not as often and the mental fog was gone. Really enjoyed doing the same things we did last year: now the expensive chocolate tastes like chocolate!
I’m back to work and have more energy than I’ve had in the last five years. It feels like the ‘batteries’ are beginning to recharge, and the strain on the body, mind (and soul) dealing with untreated apnea feels like it’s beginning to heal.
Cindy

[sleepingbeauty-not!]

hi there,

as to success stories, i just realized how far i have come since going for my first sleep study in january 2008. a couple weeks ago my md and i were waiting for another md and were going through my old records together. during my first sleep study i had stopped breathing an average of 184 times PER HOUR. at my last sleep study a few moths ago it had decreassed to an average of ONE per hour. seeing these statistics and reading the quite freaked out write-up of the reading of my first study did a heck of a lot to realize that yes, cpap therapy is effective.
but i get your frustration. every time i settle down with a mask the dumb thing starts to leak. it is hard to deal with the fact that a loved one will never be able to kiss me awake. though you (and i) may not be noticing an abundance of energy or only needing seven or eight hours of sleep per night, i believe that by not being under siege all night by our constantly stopping breathing, internal "alarm bells" going off to get us to take a breath, and then waking up (though we may not remember) from the apneas, our bodies are recovering and are less at risk from stuff like strokes and...i prefer not to dwell on all that can happen when sleep apnea goes untreated.

one tip: my md recommended a light box. it sounded to me like something from a harry potter book i bought one with great reluctance. but by regulating my circadian rhythm with this gadget along with using the cpap has been a breakthrough. our sleep patterns have been messed up for so long that a cpap machine might not be the complete answer. THINK OUTSIDE THE BOX. and keep your md updated - it's his/her job, most likely they don't even mind and together you might be able to figure out what puzzle piece is still missing in you treatment.

all the best!!

[Stutz]

This will be a little long so bear with me. I have probably had sleep apnea for 30 years. I became so bad I would fall asleep at stop lights, or in important meetings. I kept telling Dr.s I was tired but no one caught on to what if could be. I was not grossly overweight and I exercised every day. Besides being tired my wife also complained constantly about snoring. I guess that should have been a signal. So while having a deviated septum fixed, the Dr. convinced me to have a my uvula removed to alleviate the snoring and said I probably would feel a lot better. Huge mistake (another post) and things did not improve. I was still tired and it reached the point it was affecting my work. Finally about 10 years ago I had a sleep study. Hallelujah, it showed I had about 123 events per hour. During the study they did not even let me get through the night. Stopped mid way and put on the CPAP. Said they were not going to take a chance and they knew immediately I had issues. No wonder I was tired. So I was given the "machine". My first machine was a fisher paykal which was set to 11 cfm's on straight CPAP. Me being naive did not do much except get used to it. While things did improve I still was not 100% but could not figure it out. At that point, I simply trusted every Dr. and thought they knew best. Fast forward 6 years, lost some weight, and had another sleep study. Well that one indicated I had two different settings that would be needed. That is a setting of 4 cfm and high of 13. With that diagnosis, the Dr. recommended a autopap, with settings of 4-13 cfm. The new machine on those settings seemed to make a little difference but still not great. Well, I started watching this forum and the first thing I did was to find out how to retrieve information from the autopap. I did that to see the level of AHI's, since I was curious. After watching them for a couple of months, I saw they were always at about 5 on average. That was different than what I saw people on this forum getting. However, still being a little naive, I used to take the data into the Dr. and he said I was doing great, good compliance etc. So again, I thought me being tired was simply me and I would have to live with it What never happened is anyone saying you could do better. I had to find that out myself. So at that time I took things into my own hands and scoured out the software for my machine and purchased a data reader. With that information, which I looked at nightly, I began to tinker. Lo and behold the numbers started to move down. With the downward movement I started feeling great. Still room to go since the AHI is about 2 on most nights, and I think I can still do better, but wow its like I am another person. Simply put, I lost many many years of being tired, moody, difficult, and generally listless. I am sure my health also suffered. So, here is my advice.

1) You will feel better but to get optimum response, you have to become knowledgeable about your condition.
2) Demand the right equipment, and get what works and makes you feel good.
3) If things are right, I believe you will notice fairly quickly improvements. You have nothing to loose by using the treatment
3) Research all your options, no one else is going to for you.
4) The Dr.s' usually mean well but they only see you once in a while. It is up to you to decipher what they mean and hold them accountable.
5) DME's are in this to make money, and that is ok, just know that you have other options if they won't listen

So yes I am a success, but waited way to long for the results. I write this only to help people stay on the path. On the other side, I have three friends that were diagnosed but don't use the machine. They claim its uncomfortable, blah blah blah. None of them have said they feel better, like I do, so I will leave you and all who read this with the question, which path seems to be the right one given what I and the others on this forum have communicated?

[SleepytimeT]

I have not noticed a great deal of improvement with my CPAP therapy in terms of alertness and wakefulness. Initially, I felt GREAT but after a week that went away. I use my machine RELIGIOUSLY. I haven't been able to afford the software to review my numbers but I am going to do that with the next bit of free money I have. I catch myself wondering "Is this really for me" and I realize that I might not be feeling the effects of CPAP but your BODY is feeling the effects of CPAP and it is healing!
I talked to my doctor about the continuing fatigue and he put me on a medication called Nuvigil. Has anyone heard of this? Is anyone else being treated with Nuvigil and CPAP? What are you experiences? I've been doing perfect with the medication and CPAP. I am now wide awake and I buzz around like a busy little bee all day long! My neurosurgeon said that up to 40% of people that will use CPAP will still experience residual fatigue and need medication. I don't like putting medication in my body but I DO like feeling like a normal person. So for now, it is Nuvigil and CPAP for me. By the way, my blood pressure came down to normal and I am now off high blood pressure medications since I've started using my CPAP in mid August! That is an excellent milestone!

[Wedding payer]

I woke the first morning with 200% more short term memory, no fogged head, energy like I had just worked out, won the lottery, had 2 cups of strong coffee and a shower. I noticed desire to tackle conflict I had put off and sorted the 150 things I had on my desk and by 3:00 had my life in order and some new plans. I had thought the fog in my head and the sleepyness was normal when you get 50+. I was wrong.

The next days were similar but I forgot quickly how I had changed. All my professional contacts and family members remind me daily I am a new guy so it helps me remember.

I am still strugglling with nasal soreness (Swift FX), desire to sleep more than than 9 hours, and got a bill from my DME for $600 because Bluecross/Anthem in KY will only cover the rest. Best move I have made though. Sleep like I have never done in years!

[SleepfulInSanJose]

My experience is a bit like Weddingpayer's - I went for a sleep study (AHI 11.5, 22 on my back) and subsequent titration in August, and have been on a ResMed S9 with nasal pillows for about a month.

Within a couple of days I would wake up in the morning feeling like I'd already had 2 cups of coffee! Most days I feel as if I have energy to burn (really for the first time in my life!). Oddly, I seem to need only 6 hours of sleep per night (used to be difficult to wake up after only 6), but I may be adjusting still. I do notice that I'm more likely to mouth-breathe if I have any alcohol near bedtime, so I need to watch that. Hormonal changes too, but that's a different thread.

Despite the fact that mine is only mild-moderate apnea, I'm shocked by the degree to which it affected me, so while being a hosehead is not the most attractive thing in the world, I wouldn't go back!

[Arakis]

A little background to preface my comments. Just turned 50. I have been told I Snore Loudly, Daytime Sleepinees (around 11:00 am) General Fatigue, Bad Mood, No Energy to do ANYTHING! I could lay in bed for 12 Hours, get up, and feel as if I never went to sleep. Lately I had been waking up Choking or feeling like I was Drowning. Also No Dreaming.

I just want to share my experience with everyone. I went for a Sleep study on Friday September 10, 2010. Arrived at 8:30 and was told to get comfortable and the tech would prepare me for the study. After wiring me up I attempted to go to sleep at 10:45. I experienced my Standard Non-Sleep till about 1:00 am when the tech came in and put the mask on me. It took around 20 minutes for me to get used to the air flow and I fell into a Deep Sleep. I awoke at 4:00 am. It felt as if I Acually slept for a YEAR! The difference was Mind Blowing! The tech told me I had to sleep till at least 5:00, but I told him No Way was I able to get back to sleep. The entire day on Saturday, I was like a Wild Horse let loose from the stable for the first time!. I had 1000% more energy and could not believe the difference that 3.5 hours on the CPAP made in my life. I was up at 4:00 AM and went till 12:00 that night and was still not tired. No for the Hard Part. I was told that I would have to wait 7-10 days to get my CPAP. The Deep Sleep I got on Friday Night lasted till about Tuesday. It just shows how long I have been Sleep Deprived. I can guess that It has been more than 5 years. After calling the sleep center and pleading with them that I NEED THIS DEVICE, I was able to get it by the following Friday. I was like a kid on Christmas Morning. Yesterday I awoke a full hour and a half before my Normal time feeling Totally Refreshed. No more Morning Sleepiness. Please get yourself tested, I have become the Posterboy for CPAP as I have been Bugging ALL my friends to get tested. This device has made me feel 15 Years Younger!
I only wish I had done this eariler. Who knows where I would be in my Life.
Ben