Hey Paulie. I'm sorry you're having such a hard time finding an answer. I hope something works out for you soon. You gotta be more patient though, switching doctors makes you have to start all over again each time. Stick with this ENT guy for a while if his answer doesnt work make hime find a second and third answer. Each one will be closer to the truth. Doctors just work with powers of deduction and dont always get it right the first time. They aren't miracle workers and the whole process takes a lot of time. It took me over a year to get a diagnosis and in that time they made me fist think I was dieing of congestive heart failure and I had to go through a battery of tests to prove I wasn't. Just keep going to see this one doctor and exhaust all answers he can come up with, dont give up. You mentioned that it wasn't working, what about the treatment wasnt working, what was your AHI with and without the machine? As for meeting with the doctor to try different masks, I don't think they do that I haven't heard of anyone having a mask fitting appointment, I'm surprised you even got them to schedule you for anything like that. You just gotta keep buying different ones until you find one that works. How many different masks have you tried? Also you say that you're sleeping but not feeling rested, are you able to reach REM sleep? Without my machine I was told I only reach REM states a couple times a night because I woke myself up with to many episodes to reach it, I always thought I just never remembered my dreams, its fun dreams now. Anyways, I'm sure he will be able to find an answer if you stick with him long enough, just don't give up and dont keep switching doctors, do be patient and do jump through all the hoops they ask. I had more than a dozen appointments before I got an answer. Without ruling certain things out they can't definitely tell you whats wrong. Good luck and hope you find an answer.
Hey George. Thanks for the info, most people seem to have much less force than we do. I was told I have to use a full face mask. Currently I've been using the large Resmed Airtouch F20 mask, with the memory foam, and it's really comfortable but needs to be reinforced in certain areas. I have been looking at the Amara mask but wasnt sure if it would work, I'll have to take another look at it.
Hello Athena. I hope your treatment is going good and that you're still seeking out your own success story. As wiredgeorge said, I think success stories aren't as easy to find because when people find success they tend to stop speaking out. The squeaky wheel gets the grease and stops making noise....lol. Anyways, I feel like I'm a success story. Seeing a video of myself sleeping was horrifying. I spent 2/3 of each night not breathing. Each episode would last about 20 seconds, and I had more than 2 episodes per minute. It starts with about six breaths each one more shallow than the last and then I stop breathing for about 20 seconds, then I would start flailing my arms as if I'm fighting someone off of me, and I would gasp for breath, then it would be about time for the next episode. Sometimes I would even wake myself up feeling like I was being smothered. I looked forward to every sleep study I had, that first one in a lab was still the best nights sleep I've ever had, and I'm so greatful to finally have a machine. For me it is a miracle device. I was given the Aircurve 10 ASV machine and use the Resmed Airtouch F20 mask, which was great until I had a blowout and the memory foam tore in half from the high pressure I have been prescribed. It was a super comfortable mask though. My case is unique so I was given on going care. Supposedly my sleep results are analyzed daily by my doctor. But for the most part it really is unfortunate that doctors leave us high and dry after handing us the machines and there isnt much after care, we're given the default mask and no options and finding a mask that works reminds me of the claw vending machine game, such a waste of money. But that just means we need to be that much better at advocating for ourselves and share as much information as we can. I hope you find as much success as I have, good luck.
Hello everyone. My name is Michael and I was dianosed with very severe central sleep apnea with obstructive events. My highest AHI was 72, average over all my tests was about 65. Im 37 years old and remember stories where my mom would have to blow in my face when I was a baby because I would randomly stop breathing, however I just went to my first sleep study about 6 months ago. I have never slept so well in my life as I have since being given a machine. It's a wonderful feeling to wake up actually feeling like I slept and dreamt. I was given an ASV machine from Resmed. My pressure range is usually around 7 on the low side and then up to the mid 20's on the high end. My breathing pattern is very similar to Chain Stokes Syndrome, but more rounded than elongated. I'm running into problems with air leaks due to such high pressures. I keep getting air blowing into my eyes and the loud fart sounds around my nose and strong gusts of wind in my eyes keeps waking me up. I am also sometimes waking up tired after sleeping for 8-10 hours. But overall it's been great, I no longer wake up feeling like I'm being suffocated and I can make it through the day without struggling to stay awake and I dont scare my girlfriend every time I fall asleep.
