Dark Matter Wrote:Hi all. I'm new to this forum and have now been diagnosed with severe sleep apnea as of last month and been on c-pap for about two weeks now.
I don't know if this is a total success story, yet. I feel much better than before but I know I need tweaking which is frustrating but realistic. Right now I'm wanting to transistion from nasal pillows to a face mask. I want to do this because I'm a mouth breather and I can't seem to keep my mouth closed even when I'm using a chin strap. I wake up in the morning with my mask still on but chin strap off which means I am removing it in my sleep although I don't remember doing in it. I am using a resmed Mirage fx for her nasal pillow with a pressure of 9. I'm trying the Quattro? (spelling) face mask which is part of the resmed line but am getting a lot of leakage. If I tighten it up then it starts to hurt my face. Also it is a medium and I'm thinking I might need to use a small.
I'm having a terrific amount of bloating as well. Is this normal when you start c-pap therapy and will it go away as my body adjusts to therapy?It's rather annoying and my clothes don't fit as well.
And another thing that I'm noticing is that I want to sleep all the time. I know this sounds strange but I could easily sleep 12 hours a day. I'm better during the day and able to mostly get through my day without worry that I might have to take a nap but as soon as I can I want to get to bed. Maybe this is from having untreated apnea all these years? Has anyone else experienced this as well?
As I said before, I'm feeling better. If my dx hadn't come back as apnea then I don't know what I would of done. I was so tired all the time and getting so depressed about feeling this way. I haven't gotten to the point of feeling great yet, I'm thinking I'm really impatient with being so sick and just want to feel good again.
tinbanger Wrote:I started my cpap therapy just over a year ago, however only just over a week with an actual prescription.
A year and a half ago I began falling asleep everywhere, even in a loud bar after playing hockey. A few times I fell asleep at the wheel,
woke up once passing a 18 wheeler. Needless to say that scared the crap out of me.
At the time I did not have a family doctor so getting a referral to a sleep clinic was impossible. I started that process, but in the mean time
I decided to look on the internet for a machine. I found one locally for $150.00 from a guy that no longer used it, he only had 250 hours logged on it. It Took me a while to get used to the mask, it was about a month and a half before I could wear it all night. But this machine
changed my life. I no longer fell asleep everywhere, stopped getting up in the night to go to the bathroom (usually 4 to 5 times a night).
I would have vivid dreams, where I would actually act out at night, one night I got up out of bed to get a buddy a beer.
Twice I even urinated in bed. All this had completely stopped I felt alive again thanks to my cpap machine.
Before using it I did read up on it to see if it was dangerous for me to use this without the supervision of a doctor. After outweighing the
pros and cons, I felt it was better to take my chance with the cpap machine than falling asleep driving (My job requires me to sometimes got
to site visits). The pressure was set to 11 so I used that at the beginning but eventually upped it to 14 and that's where I left it.
I used this machine for a year and 2 months before I finally was diagnosed and issued a prescription. The pressure that was prescribed to me
was 12, so I was pretty close. It's been a week with the prescribed pressure and I have gotten up once to go the bathroom, and have felt
a bit tired compared to usual. Next Friday I return the trial machine and will purchase my own.
I have the software to check my data, I think I will change my pressure to 14 to see the difference in the stats. With my old machine I did
not have the means to check the data, it was a smart card and I did not want to purchase a card reader for it. I'm pretty happy that I can see
this data for myself. So far I like the Resmed S9 Elite that I am using, will probably buy the same unit.
When I finally saw the doctor I told him that I was using a cpap machine already and that the results where amazing. I was not sure at first
if I should actually tell the doctor I was using a machine "illegally" lol. But decided I should be honest about it, and to my surprise he was pretty impressed that I took that much of an interest in my own health. He told me he went to a conference and they discussed that the patient
should have more control over their therapy, and he agreed.
When I started on my own, giving up on the machine was not an option I forced myself to get used to it, I no longer wanted to feel the way I did. I have two kids, and I wanted to be alive to see them grow up. My decision was a no brainer. Perhaps I got lucky and never had any negative effects to using a cpap without medical observation. CPAP saved my life.
vegasj Wrote:New around here, posted some questions and history.
Thought I'd come back and share my CPAP experience!
It was about 7 yrs or so ago. I'm a big guy, 6'-1 to 2", and was nearing 310lbs. I'd fall asleep during the day at my computer at work, I'd doze off when just sitting for a bit to watch TV, I was always.tired.
I went to the Dr. and asked for tests: thyroid, diabetes, liver issues, everything I could think of to find out what was going on. My sudden weight gain from 250 to over 300 had me scared something was seriously wrong. My ankles and lower parts of my legs were swollen. The Dr. tried "water pills" to see if I was just retaining water and having an issue with that. No.
Then he mentioned getting a sleep study done to test for Apnea. That was the start.
I did my study and thought it was strange... all those wires and monitoring equiptment. How was I supposed to sleep like this! I thought...
I remember during the study the tech came in and woke me around 1am. He said I haven't really been sleeping yet. I questioned this, I had... but under my rules. He said they were going to hook me up to a CPAP now and get some results from 1am to 6am.
The next thing I remember was him standing over me YELLING my name at 7am trying to get me to wake up. Unreal I thought... I've never slept that 'deep'.
The afternoon the medical supply company's tech showed up to setup my machine and show me how it would work was a Friday. He was a big guy himself, and even admitted he was using a CPAP too.
That 1st night I went to bed around 11pm. I didn't wake up 5-6 times as "normal", I actually didn't wake up until 11am that next day. And Saturday night into Sunday morning was no different... I slept another 12 hrs. straight through. Something I hadn't done in years.
The machine he setup was an old ResMed S6, which I still use. I've purchased another for traveling (ResMed S8 Elite) and have been using the same Mirage nasal mask since day 1.
After starting on the CPAP machine 7 yrs ago I lost 25lbs within the first few months simply because I had more energy during the day and was getting wayyyyy better sleep at night. No more falling asleep at work, no more smacking my head on the desk and waking in embarrassment, and mostly, no more 300+lbs on the scales!
Now, if I fall asleep for a nap or something and do not put on my mask I will wake up with headaches and feel so tired.
CPAP FOR LIFE!!! (well, now maybe BiPAP)
oscarfer30 Wrote:For several years i feel like somebody just suck my energy all the time. I´m starting to believe the "curses" and magic can be true .... just joke.
One time i just "black out" when i´m driving my car heading home, hopefully nobody is near my car and i just not hit the road barriers or something. Just move from first to third ramp on the highway ..... between ramps is just blackout in my mind.
I´ve worked on a place with low salary and never even think to go to see a Doctor because i just realize i had not enough money for this.
Recently i´ve changed my work and after a family member pass through 3 months of intestinal cancer all finally ends for me. I´ve decided to care a bit about myself.
When i decide to see the doctor ? , well , some times i work at night, so i´m sleeping this day ( literally) and a friend comes to see me, somehow he see me "sleeping" and later tell me that i just "jumping on the bed" y he had fell terrible for me.
Since this, and advised many many times by my wife, i decided to see a Doctor. Did the test with a resmed tinny blue device in my chest ( at home ) and after a week i came to see the doctor again.
He is very concern and tell me i have 76 Apnea episodes during a hour .... i just don´t get it ..... but Dr. hit the point .... that´s the reason ... poor sleep ..... snoring ....
I just feel like the answer is there, the answer for all my problems. Next week i have to try "The machine" ... at this point i just imagine ( doctor just explain me everything ) a device like a vacuum cleaner at my bed side.
When i went to the Clinic to do a "machine test" i just receive a notebook sized bag ?????? what happen to "the machine" ..... I was instructed how to used, how put the mask and later go home.
"the machine" looks so tinny, "but probably is loud as hell" was my first think .... just leaved there with none interest.
Later at night i´ve put the mask on, and start "the machine" for the first time .... at the beginning it feels a little bit "strange" but after some inspirations it feels way better.
Try to sleep ... and suddenly i fellt slept ... 9:45 AM next day i´ve opened my eyes and feel like somebody just give my life back ( sorry for this but .... i have to type it ) IS JUST AMAZING !!!!!
I´ve write this for all of the "newcommers" as myself , who are worried about looking like Darth Vader at night .... my advice .... get your life back now ....
Thanks everybody for this forum, now, i´ll recover my life, with "the machine" at my side nothing can go wrong .....
Hope ... is the last thing you need to loose .... keep going ....
Sleepster Wrote:I started CPAP therapy for OSA 36 days ago. The two weeks prior to that were a nightmare for me. I was so anxious that I had no appetite. The idea that I had sleep apnea, the sleep studies, the waiting for the CPAP machine, the fear of the CPAP machine not working for me, the sleep-fragmented nights ... it was all too much for me.
I got the CPAP machine and hoped for a miracle cure to my sleeplessness, my chronic headaches, my bad mood, and every other thing that I could possibly blame on sleep apnea. Of course, it wasn't a miracle cure. I couldn't sleep any better than I had before. Sleep was different, better in some ways, worse in others. Some days I thought I was feeling better. I kept a journal and recorded these things. But, in the back of my mind I knew that any improvements I thought I might be experiencing were entirely subjective. I couldn't really be sure that there was an improvement.
But yesterday I was sure. I really did feel better. And today the feeling continued. I'm now sure that there's definitely significant improvement in the way I feel. I'm still experiencing fragmented sleep, and problems with the mask, but with the help of my provider, my doctor, and support from folks on these forums, I am confident that improvement will continue.
Of course, during this last month, I wasn't confident at all. Like I said, I couldn't be sure that I was improving. It was only a suspicion. But I was sure that there were problems. Definite problems. Painful gas in the stomach and intestines. Burping and flatulence. Waking up with my mouth wide open and air hissing out. I was persistent. I met my provider at a Home Depot parking lot on a Saturday to get a chin strap. I went back to my doctor and got my machine changed from a CPAP to a BiPAP. This didn't help with the gas, and the apneas went up. But then the gas problem got better. I sent the data back to my provider and the doctor lowered my pressure. On and on it went. I was told by my psychiatrist to be persistent and keep communicating with the doctor and the provider to get the problems worked out. I went to my PCP to get some sleeping pills, he told me to hang in there.
So, I'm still hanging in there. If you're new to CPAP therapy, I'm writing this post for you. It's stories like this, written by other forum members, that kept me going. They'll continue to keep me going. And I hope stories like this will help you, too.
Cutter Wrote:I had my first sleep study in 2002 after my wife said that one of us had to sleep in another room. I had the sleep study and the Dr's Associate told me that I had sleep apnea. She never really explained anything but said I needed to use a CPAP at night. I got a ResMed S6 with a humidifier in a box that the CPAP salt on. That seemed to work and about once a year I would get a new mask and the tech would check out my compliance with the machine. It must have been OK because he never complained. Soon my wife had a sleep study and discovered that she had sleep apnea as well. She got an S7 and now we were both happy but still knew nothing about sleep apnea or CPAP. In 2007 I got an new CPAP because I wanted one that was smaller. I got an S8. My wife liked it so much better than hers that we swapped. Her pressure setting was 7 cm and mine was 9 cm. We didn't know the difference and were fat , dumb and happy. A month ago I decided it was time for a new CPAP since the S8 was shooting craps. Since my insurance would cover the cost 100%, I became the designated patient. My "Wallet Dr." decided that I needed another sleep study. Insurance agreed to pay for another sleep study and a CPAP if it was warranted. All of a sudden I became interested in sleep apnea and CPAPs and AHI and everything. Then I found the Apnea Board and learned more about this disease process than I thought possible. I knew I had found the right place when I read that we had the right to change our pressures if we think that needs to be done. You all opened my eyes. I had been a hose head for almost 10 years and knew nothing. Oh, I forgot, the CPAP saved y life and my marriage. I had 2 heart attacks and bypass surgery before I started CPAP therapy. It can save your life. This is by far the best Sleep Apnea site on the Internet. I get paid on Friday. Expect a donation this weekend.
SandyBottom Wrote:New to this forum and so glad to be here.
I had my first sleep study in July 2004 and was diagnosed as severe w/82.5 episodes/hr. I always woke up with a sore throat, but did not realize what other issues I was having until I began treatment with a ResMed VPAP III. Once I started using the machine I realized how sick I had been. My pressures were 13/8 and the only issue I really ever had was finding a mask that worked for me.
My life totally changed. I was not falling asleep at traffic lights and sitting trying to read. What a difference it has made in my life. I cold never imagine being without my VPAP.
Just recently I was having trouble again and felt like I was breathing through a cocktail straw when on the VPAP. The Dr. put me through a new titration study a week ago and I now have a pressure of 17/12. I learned from this site how to adjust my pressures and life is beautiful again. The difference seems mild, but the results are amazing. One thing I need to do is go to a full face mask as I keep springing a leak. ;-)
I am still using my original VPAP which I got in Aug. 2004. I am so worried about it being on it's last legs yet Medicare will not replace it until it stops working and can't be repaired. After two days of fighting with Medicare I ended up finding a new one at an unbeatable price from one of the listed suppliers. I just gave up on Medicare! I will keep my old machine use and a backup. I will also continue to take the old VPAP camping with the Boy Scouts. My deep cycle battery and inverter will give me days of use.
I have to say getting used to a VPAP/BiPAP/CPAP takes a little getting used to, but the rewards are countless. I even put my machine on while watching TV or reading in bed just in case I fall asleep before I want to. (TV today is pretty boring.)
My advice to anyone is to keep using your machine, treat it like a baby and it will transform your life! (Even the dog was tired of my snoring.
queenofzen Wrote:here's the short (?) version of my story: after denying the possibility of sleep apnea for YEARS as the cause of my fatigue, i finally had a sleep study and had an AHI of 39. I was having essentially no REM sleep. with a medical background, I decided in advance that i didn't want CPAP and this stupid nurse gave me the number of a dentist who would make me a device. they wanted thousands of dollars for a crappy piece of plastic and wouldn't take my insurance. I got routed to a surgeon who sent me for x-rays to determine the location of the obstruction and it was clear that a device wouldn't help. of course, he wanted to do surgery. suddenly, CPAP didn't sound so bad.
that was back in July. I adopted a very positive attitude and despite the surgeon's warning that i wouldn't be able to tolerate the high pressures I needed (18/13) for long, I started using CPAP. the easiest way to describe the change is that i no longer wake up in the morning thinking about when i can go back to sleep. no more naps which, of course, don't leave you feeling any better.
that said, i have only been able to tolerate the CPAP for a few hours each night because of the high pressure. it makes me wonder how I might feel if i was able to have more quality sleep.
Snore Monster Wrote:I tried CPAP back in 2003 but gave up until a couple months ago. Reading this forum gave me the encouragement to try again and even though I only made it a couple hours the first two nights I stuck it out and have been using it all night since the third night. Wish that I had not waited all of those years. Wish I was one of those that felt like a new person but while not that great I must say I do feel better and at least my wife can once again share our bed. Just wanted to say thanks for being there and giving encouragement and for those just starting CPAP, don't give up. You really do and can get used to it.
kairosgrammy Wrote:I just turned 60. Yikes, how scary is that?! I have one daughter and two grandchildren who I adore. I've been so tired lately that my time with them has been limited. Hopefully that is straightened out. I'm a school based speech pathologist and love it.
My journey with sleep apnea doesn't actually begin with me. My brother was diagnosed in the late 90s with sleep apnea, severe, severe sleep apnea. He could no longer drive because he would fall asleep, he was having multiple health problems and he pretty much had all of us scared silly. His lips were even constantly blue from lack of oxygen. Finally, we had a family intervention of sorts and he went to the ER, found out he was in congestive heart failure and that the doctor suspected sleep apnea was part of the cause. They started him on bipap before he was even officially diagnosed. He died two years ago but I'm convinced that had he been diagnosed and treated much earlier, he might still be alive. Years of no sleep and oxygen deprivation just did too much damage. But because he was diagnosed, I think he lived a lot longer. Honestly, I don't think he'd have lived more than a few more months, if that when we had the family intervention. Those extra years were definitely a gift from God.
A few years later, my sister was also diagnosed with severe sleep apnea. I don't think any of us ever suspected her. She snored but more of a light snorer, nothing huge like my brother. About that that time, I was starting to have some symptoms, tired even after sleeping a full night, groggy and muddle-headed etc. My family said, Lynn, go ahead and take care of this and I did after awhile. I'm nothing if not stubborn, wouldn't even really admit to snoring, LOL. Found out that indeed I did have sleep apnea although mild. The doctor said that I did fine the first part of the night but as the night progressed, I became more and more apnic. Unfortunately, that was about all he told me. I have to laugh though when I remember it. He began the discussion by saying, "Well, you are right. You do snore." At any rate, I was started on CPAP and felt a lot better. Strangely though, when I thought I might have sleep apnea, I wasn't horribly bothered but when I found out I really was, I was terrified. I'm pretty sure that not breathing for periods of time is not really good for your health.
Well as the years have gone by, while I've been more or less ignorant about sleep apnea other than I had sleep apnea, my weight problems have gotten a lot worse. Two and 1/2 years ago, I was hit by a tornado in the middle of the night. I've always had insomnia off and on but after that, sleeping became very difficult. I guess I was afraid to sleep. After my brother died, sleeping became even more difficult and so I finally talked to my doctor. He felt that I had some mild ptsd and depression and started me on zoloft and ambien.
Still, I've felt run down and groggy, I'd sleep 8 and 9 hours and still felt groggy, y'all know the drill. So when I went for a check up this past October, he asked me how the sleeping was going (he knows this is a big problem with me) and I told him I was feeling run down and tired. He then says, well, how long has it been since you had a sleep study (strange how people's views change, when I asked for the first study, he was like sure, it can't hurt. Don't know why they don't sell them over the counter) and I think it was in the early 2000s. That's how ignorant I was. I really made no mental note of when I even started cpap. My setting on the cpap was 7 so not very high.
He said, let's do another and he sent me locally for a sleep study while also doing some blood work to rule out other problems like problems with my thryroid. The results were horrifying to be honest. This doctor actually sat down and explained in much more detail than my first study. My oxygen levels were dropping down to 80% on current settings and even when they got me up to 10, my oxygen levels would drop down to 80% again when I was on my back. On 10, on my back, I had 36 AHI events. On 10!!! No telling how many I had on 7. Of course, there were those moments of not breathing. He said I woke up enough that if he walked in the room, he could strike up a conversation with me. Weird that you don't remember most of that!
Well, long story short, I was given a new cpap (Respironics One) since my old one didn't have the sd card. He said that he was prescribing a level of s12 but that the sleep study was incomplete because they could never titrate high enough to insure that AHIs and oxygen levels dropping on my back were also good. Since then, I do sleep better, feel much more alert. I have also realized how little I really knew about my own health as far as sleep apnea. When I had a hysterectomy, I researched the surgery extensively. I joked that I could probably do the surgery myself. That was in 1998 before you tube or at least before I knew about you tube. When I developed arthritis in my neck and 4 herniated discs and needed surgery, again I researched the surgery, being put to sleep, what would be done with the surgery etc. I understood exactly what would happen, start to finish. I can't believe I just accepted a diagnosis of sleep apnea without informing myself.
Now I use sleephead to track my sleep etc. I want to know that what I'm doing is working. If it no longer works, I want to know what to do to make it work again. I want to be more proactive in my own therapy rather than just assuming because I do feel better that everything is as it should be. The first person in charge of my health isn't the doctor, or my dme or anyone else. It is me. I am my health manager so to speak and I need to do a better job of it.