Frustrated but better....

[mflander]

Kind of a long story, but just thought I would share it...

5 years ago I was diagnosed with sleep apnea. Have had it my whole life. Tired all the time, never felt refreshed after sleeping long hours, depression side effects, etc. etc. Same story you have all heard a thousand times already.

So they send me a CPAP machine of which I tried for over a year off and on. I just learned recently after my research here that over a couple hundred nights I made it over 4 hours only once. My problem was that I would feel like I was suffocating and would rip the mask off my face. I complained to my doctor. I complained to the DME. A year this went on, finally I gave up and started looking at other options. I tried the mouth guard for a few weeks and no way that was going to work. So about 3 weeks ago I went and saw a doctor about finally getting the surgery. They said I was a good candidate and then told me that it would take 2 surgeries to get it all and that I would be down for the count for 6 weeks (2-3 weeks per surgery) and that the surgery is miserable. All that for a 60-70% chance of it working. When I asked the Doc to define "working" she said that she believed I may be apnea free but was confident that I would at the very minimum be able to use a cpap machine.

WHAT? All that surgery just to end up where I started? Ugh, WTF?... something was very wrong here and not sitting well with me at all.

So I started researching myself. I've read a total of about 20-30 hours in the last few weeks and am amazed at what I found. First I found out that my issue of feeling like I suffocating was caused by inadequate pressure. After looking into my machine they had the pressure set at 4. Uhhhh. I complained about this problem for a year and nobody thought to maybe try increasing my pressure?

So after researching and reading more here I decided to try CPAP one last time. Before I went and ordered a brand new machine I broke out my old machine and set the pressure to 7. I slept with it on for 6 hours the first night, 6 the second, and 8 the next. WOW!

Decided to go to an APAP machine with reporting so I could work on this myself because I am too angry at the docs and DME to even heed a single word of advice from either, I called up the DME and ordered a ResMed S9 autoset with the H5i and asked them to bring by a selection of full face masks to try. When they arrived the lady from the DME came in the a phillips resperonics unit and tried to sell me on that one. Finally she went to her trunk and got the S9. When she left, she had the machine set on CPAP with a setting of 5, no user access to EPR after I specifically asked for it, no user access to AHI info, etc. So of course I installed Resscan and set it to Auto 5-20 for a start with an EPR of 1. Went 8 hours the first night with an AHI of 15.3. I noticed in the graphs that most of the events were happening when the pressure was coming down to 5 throughout the night so I increased my min pressure to 6 the next night. I was hitting a pressure of 20 at least 4-5 times a night so this auto machine was the best money I ever spent. For the last 3 nights I have had AHI's of 4.2, 2.9, and 4.9 respectively and have slept for 8 hours each night no issues. I of course will continue to dial this thing in and will post reports here for more advice, but that was not the point of this post.

The point of all this rambling was to make sure if you are reading this that you RESEARCH it yourself. I was ready to go under the knife to get a 60% chance of having a cpap machine work when all I needed was a higher pressure settings and none of the 3-4 doctors nor the 5+ people I have talked too from the DME could tell me that. I can't believe how incompetent they are. Research it yourself, and listen too and read thoroughly the plentiful advice found right here and you will be fine.
I feel like they owe me 5 years worth of sleep. I could have been getting good, healthy sleep for the last 5 years if any one of the people I was trusting to give me advice on this subject had known HALF of the information available right here on this website. So incredibly frustrating....

Thanks for listening, had to get that out .

[Emilia]

OMGoodness... I am so sorry you have suffered for so long, and it is a travesty that your doctor or DME never offered any help. I swear, when I read stories like yours, I feel so fortunate to have found this forum before my study took place so I could be knowledgable and empowered.

So.... now you know you have a great machine; it is capable of providing you with detailed efficacy data with which you will be able to tweak your OWN therapy and make it work; and you can learn all the tricks to fix problems right here. We are open 24/7 and have many, many wonderful folks who are veteran cpapers with tons of good advice.

Your machine is a very popular one among our members, and while I do not use that machine, you will have many to support you and advise you on how to get the most from it. You can get the software download link from forum member, Uncle_Bob. Just find a post by him and you'll see the links under his avatar pic on the left side of any of his posts. He also has a link to the clinician's manual from where you will get the directions on how to operate your machine 'under the hood.'

Finally, a pressure of 4 is ridiculous... no wonder you were suffocating! You need to get a copy of your sleep study and your Rx. These are yours to have, by law....and you should have them for your own file. Using an autoset will allow you to set a pressure range to start off with, and using the software data, you'll be able to refine your pressure range to get the best therapy. You are using a FFM so I assume you are mouth breather? If not, you might want to experiment with some other masks as well. That is about 90% of getting this to work well.

Continue to read and ask questions.... Many with the S9 or your mask will be along soon to help. Best of luck!

[Mary Z]

I don't blame you for being frustrated, all that time and no one listened to you. If a new sleep doc and new sleep study are not an option (and I would recommend that after all this time, if you haven't already), perhaps you can learn enough on this forum to take charge of your own therapy. Many of us have done that either because the medical profession has failed us, or because we feel we can do a better job by taking control ourselves. Now that you have the latest and I believe best technology available to you I believe you'll be ok. Just remember- you may have to work up to it (and maybe already have), but we need to use our machines everytime we sleep. I wish you the best of luck and success. I'm glad you found this forum and hope you continue to post on your progress. Thanks for filling out the machine and mask info- if you have specific questions that will help forum members to zero in on your problems.

[mflander]

Yes I am a mouth breather and the Quattro FX has been wonderful. Hopefully it will stay that way. I accidentally posted before finishing the first post and you replied while I went back and finished it...

[Emilia]

Yes I am a mouth breather and the Quattro FX has been wonderful. Hopefully it will stay that way. I accidentally posted before finishing the first post and you replied while I went back and finished it...

Great news! You are to be commended for your tenacity and self motivation! I so happy you are working to get to your 'sweet spot.' An knowledgable patient is an empowered patient!

[Pugsy]

Congratulations on finally taking charge of your own life. I predict that you will do very well and it won't be long before you are an old pro at this cpap stuff. It is so sad that what you have described is still so very common and people get left to flounder around all by themselves. As you have found out, it isn't rocket science and with just a little common sense most problems can be worked out relatively easy if someone knows where to start.

Good job, it will get easier and better as you go along.