Hello Reintroducing myself.

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Paulie +0 points · 10 months ago

Hello Folks,

I found this website a year ago not sure when but many of the information on here has been helpful. But I am hoping to find new information or reintroduce myself to this website and in the hopes to get some support.

I have been diagnosed with sleep apnea back in 2003 and have not had any success with the CPAP machines and mask. I have met with four different doctors and to no avail none of them have been very successful. Sadly many of them I had to give up on them because I feel they do not hear what I have to say. The first doctor I met three times and tried everything he suggested and to no avail nothing worked. But I used the CPAP Machine for two years and still no results so finally I gave up. I then saw another doctor around 2007 whom did a good job of doing testing and all it was his Respiratory specialist that messed things up whereas he didnt show up twice to help me get a new mask. So, I gave up on meeting with him. My Third test was done in 2011 by another doctor whom prescribed a new CPAP machine (Resmed) which has helped me stay asleep during the night but not giving me the good rest I need to feel good about myself physically. So, about a year or so I then visited another Doctor and all he did was read my old tests and then gave me a different mask which is the Nasal pillows type (my first one was a face mask) and that didnt work so I advised him and he says well lets try medication which I did not want to do first before we try different masks to see which one works or if the machine I have is effective as it should be. So, I dropped him. Yes it looks like I have no patience I do its the doctors that has no patience with me. Anyways, I am now meeting my fourth Doctor who's an ENT specialist and so far, nothing yet..I just finished my test so I will see him soon and see what we need to do. I hope he will find out what is the issue with my problems...all I want is a good night sleep and be able to function better during the day and not fall asleep anymore..sigh.

Well, thats my story and hopefully someday I will get better sleep.

thanks.

Paulie

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Dopey696 +0 points · 10 months ago

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.

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Paulie +0 points · 10 months ago

Hi Dopy696,

Thank you for your support and words of advice. I have a resmed machine got it back in 2003 which was a huge machine. It was a resmed machine with Nasel mask. I then tried a whole face mask and I used them for about six months and both did not help at all. Also, with my first machine the setting was automatic it will will go up or down depending on my breathing. Now I have a second machine which I gotten around 2011 and that machine is smaller and it has the same setting.(Sadly, I dont know if I am reaching rem) I now used a full face mask from Resmed as well. Again, the setting on my machine is auto setting meaning again depending on my breathing it will increase or decrease automatically. Once, I meet with my new ENT on Friday on November 10th I am hoping to find out what is going on and what is his prognosis..they tried to set up an appt with me with a medical supply company before I even met with the doctor I have advised them that did not want to do that yet until I speak with my ENT. I've had a good experience with one medical supply company and sadly, they are out of business and there is another one that I like but my insurance is not covering them so I have to go what my insurance are willing to pay a particular companies sigh...Anyways, I am hoping this doctor is not a quack like the rest of them..I am going to him the benefit of the doubt and hopefully he will stick with me and work with me to figure things out...I am trying to avoid taking medications to keep me awake...sigh anyways, thanks again and I will keep you posted.

by the way I live in Massachusetts, do you know of a good medical supply company that might be really good???

Thanks again

Paulie

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BrightLilacDove4332 +0 points · 10 months ago

Hej Paulie, I have had the best luck going to Corner Home Medical here in the Minneapolis. They have a variety of masks to try and skill in getting them adjusted properly. My latest nose mask is the best by far with very comfortable straps and nose piece. I am probably an easy patient to work with. I always sleep on one side or the other with the hose going up over the pillow. I do wake slightly to shift from one side to the other, but go back to sleep promptly. I have used a machine since March of 2005 and have missed 6 nights in that time. 3 were in the Boundary Water Canoe area with no electricity. 2 were after a house fire with all the electronics destroyed and one was due to a power outage. I am a serious user because of all the negative things it was causing for me, including needing a quadruple by-pass due to my clogged arteries from the adrenaline used to make me gasp and start breathing again all night long. That irritates the arteries and your body's response to that is to lay down cholesterol over the irritation. Once I understood how serious apnea is to your physical health in addition to your mental health and abilities, I was determined to succeed. My CPAP machine is a life saver. Currently using an AirSense10 that gives me a score each night that I faithfully record to see how I am doing and to note if an adjustment should be made.

Could you say a little more about what doesn't work for you since you have been trying for so long?

I did adjust to it quickly and now find when I put the mask on and pull the blankets up over my head to keep the light out, I am usually asleep within seconds--like a conditioned response. My good bladder means no night time bathroom disturbances either, so I usually get 7+ hours of uninterrupted sleep a night. Boy does that feel good!

I would wish the same outcomes for you. I have no understanding, though, of the types of problems other users have.

Good luck!

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Paulie +0 points · 9 months ago

Hi Bright lilac dove,

Thanks for your support and kind words. I've had one full face mask and a regular size face mask and a nasal mask. I also tried Nasel Pillows with a chin strap which was supposingly to keep my mouth closed and that didnt even work at all. So, I am hoping to see what my new ENT doctor says next week. I have some concerns and I just found out about a year ago that I have a heart murmur and well my old Primary doctor did not do a good job of referring me to a cardiologist...so I took action and have met a new primary care doctor who also is a Cardiologist so hopefully with my new soon to be cpap machine will take care of my heart and sleep. I do sometimes wake up around 3ish in the morning to go to the bathroom...but that is sometimes a once or twice a week thing but I do sleep through the night...

I will keep you posted on my meeting with my doctor next week..

Paulie

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