My self-diagnosis and self-treatment story

[Gravydog]

I guess I have always had confidence in my own opinions and capabilities. I was always tinkering with electrical and mechanical things from a very early age, I even wired the downstairs rooms in my parents' new house without help when I was only 11! I have been a professional auto repair technician for 35 years now. I am a 57-year-old male, somewhat obese (6' about 230 pounds). Over the years my snoring has progressed to the point where my wife has a lot of difficulty rousing me even with rough pokes and prods and I have had enough waking episodes with certain feelings that for some time I have been convinced that I was suffering from sleep apnea. My concentration is not very good these days and sometimes I almost fall asleep sitting at a red light in the afternoon. Also have some morning headaches and ringing ears from snoring. I see my doctor on occasion for checkups, etc. but mostly I have always been one to go my own way and trust what I think the problem is and what, if anything, I should do about it. I have insurance but it is a spending-account type and I prefer to leave the money in there for some bigger, unanticipated need. (It rolls over if unused).

I know some here will want to lecture me about what I am doing. I appreciate your concern and opinions, but I am very stubborn and not easily dissuaded from my chosen course. I suggest you don't waste your breath on it (no pun intended!)

A couple of Saturdays ago I was out looking for garage sales as I often do. I like to find bargains on things I can use or sell on eBay. At one particular sale they had two CPAP machines for sale. I bought a year-old ResMed S8 Autoset Vantage with only about a hundred hours on it, Humidaire 3i and a Mirage Swift II all complete in the cases and clearly new for $45. My first thought was how much of a profit I could turn on it on Craigslist but soon I began to consider the idea of trying it out myself and that is what I am doing.

I started out doing a lot of reading on this forum and others to get grounded in the basics. I found out how to access the clinicians menu and changed the setting to auto since I obviously have not had a sleep study or titration done. The auto setting was from 4 to 12cm and I started out with that. I didn't have as much trouble sleeping as I expected although it was very strange, of course.

My readings after the first night were:

Pressure: 10.2, Leak: 0.12 L/s, AHI 10.9, AI 1.6, HI 9.3.

Second night:

Pressure: 10.0, Leak: 0.34, AHI: 9.1, AI: 0.6, HI: 8.5.

After the second night I had a slight headache and I have read here about the possibilty of too much re-breathing with a low setting of 4cm so last night I bumped the low end up to 6cm and this morning the numbers were:

Pressure: 9.6, Leak: 0.08, AHI: 9.2, AI: 1.4, HI: 7.8

I think tonight I will try a low setting of 8 and see how that goes. I turned off settling and didn't have a problem at starting at 6. It's funny that after a few minutes I don't even notice an increased effort in exhaling.

My s8 came with a card slot but no card and I have a laptop so I just wanted to be able to do a direct connect. I read on here that a S8 requires ResScan 3.4 or 3.5 but that you can't buy that from ResMed. I also read that some people had obtained the software from Australia so I gave that a try and today I ordered the USB adapter and cable #22203 from http://www.cpapaustralia.com.au for about $100 US shipped and they provide you with a link to download the version 3.5 software from ResMed Australia for no additional charge, which I have already done. It is installed and now I just have to wait for the adapter to arrive. They just emailed that it has shipped.

So far I am sleeping pretty well, feeling more alert and much less sleepy during the day. I will continue to try to dial in my best settings. I have not had much trouble with aerophagia or keeping my mouth shut. I am glad that it came with the nasal pillows setup as I have had a beard and moustache for my entire adult life (married 35 years and my wife has never seen me any other way). At this point I feel confident and competent to continue with my self-treatment. That's my story and I'm sticking to it!

Rob

[Snoredog]

if self-titrating you should go in 1 cm increments. If your AI=1.4 at 6 cm, going to 7 cm should pretty much eliminate it. No real need to limit your top pressure to 12, I'd move it up to 15 or so.

Also setting doesn't impact your therapy in a negative way, I would set it up if you don't use it by hitting the button it doesn't get used, but it can come in handy at 3AM after being awakened for whatever reason, hit that button and it drops pressure down back to the Minimum without having to power cycle the machine to get it back down.

You probably saved yourself a lot of money going the route you did, wished I would have gone that route, having a OSA diagnosis does nothing but drive up the price you have to pay for medical insurance and makes it nearly impossible to get life insurance.

Use your "AI" of the AHI to determine if pressure needs to go up, but in Auto mode that machine should keep you in the normal range. Be careful once he AI gets down to 1 or .6 or .8 that is about the best you can expect to get, then it will fluctuate up/down which is fine.

[SleepyNoMore]

WOW, impressive!
And, what a DEAL you got on the cpap & mask!!!
I wish you all the luck and with Snoredog's advice, you will prosper...
Take Care and Best of Luck towards your new self diagnosed therapy.

SleepyNoMore

[wlo2008]

My brother has done the same thing. Got a machine off craigs list and is messing with the pressure till he finds the best one for him self. He has no insurance and would not be able to do this any other way. But I still encourage him to get a sleep study done to look for any other sleep disorders. Till he gets insurance that is on the back burner.

[rested gal]

I know some here will want to lecture me about what I am doing.

You sure won't hear a lecture from me, Rob.

I think you've done (and are doing) a very smart thing for yourself.

But then, I may be a little biased:

viewtopic.php?p=5977#5977 My story.

http://www.apneasupport.org/viewtopic.php?p=7956 My eventual sleep study.

I've read that statistically a pressure of 10 cm H2O keeps most people's throat open fine. If I were going to guess at settings for the autopap you're using, I'd go with 9 - 20 or 10 - 20. You'll have a better idea what's going on after you get your software going, but the LCD data display on your machine is giving you plenty of useful info for tweaking purposes already.

The people in this study did their tweaking without benefit of any data display or software or even an autopap. So, an effective treatment pressure sure can be "self-done" when it's plain vanilla OSA that's going on:

"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?" Link to a study that concluded, "yes."
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

Another interesting link:
"Not Every Patient Needs to Go to the Sleep Lab" Link to a Powerpoint presentation by Dr. Barbara Phillips at a meeting of the American Lung Association of the Central Coast - November 2004
http://www.alaccoast.org/pdf/Phillips_0830.pdf

Way to go, Rob!!

[bdp522]

Good for you Rob! Keep at it! I had a sleep study done, but then had to retitrate myself because the pressure set during titration was wrong. You're doing great. I also want to thank you for posting your story so others can see that it is possible to do it yourself. Keep up the good work!

Brenda

[Gravydog]

Thanks for everyone's support and comments. I bumped the low setting to 7 last night as suggested and the results were pretty consistent with my previous ones: Pressure 10.4, Leak 0.1, AHI 9.3, AI 0.7, HI 8.6. It looks like I am working up to a base of 9 or so. I did awaken a couple of times with my lips slightly parted and a little air leaking out but for the most part I seem to be doing ok.

Maybe someone knows the answer to this: EPR only appears on the CPAP menu but not on the AUTO menu but my impression is that it is functioning in some way in AUTO because if I purposely alter the rhythym of my breathing the next exhalation meets much more resistance but then becomes easy again with regular cadence.

I have the headgear straps pretty snug to prevent leaks but I fear I will end up with a permanent pig nose!

Rob

[marshaeb]

Hi, Gravydog.

Good for you, and welcome! I'll be very surprised if you hear any of us criticize what you've done -- maybe some mild whining that some of us didn't do the same thing, but that's all. I'm a fairly new "hosehead" myself.

Just a suggestion ... if you would add the various elements and settings of your equipment to your profile (via Control Panel, above), that information will automatically display at the bottom of anything you post. For example, mine's just below my name. That's the first thing people look at when we have questions. It would make considering any situation you're describing easier for them, and it would save you from having to repeat yourself. The very specific way you described your equipment was excellent, and it would be good for you to list it that specifically in your profile.

Keep up the good work!

Marsha

[freepostg]

Epr is not available on your machine when in auto mode. Only in cpap mode.

[cindymarie]

I am SO EXCITED to have found this site and your story Rob. I self diagnosed and self treated and know there have to be other people that have done the same, so far I just haven't talked to any in person. My husband was against me doing this and I keep telling him there must be others out there doing the same thing! Glad I found some!
I have had the whole litany of symptoms for about 2 years now, but recently started waking up gasping for breath with a furiously pounding heart. After speaking with a nurse at the hospital she suggested I have sleep apnea. I did research all over the internet, spoke with the director that ran the sleep study at our local sleep center, and was confident with my diagnosis. I do not have health insurance nor the extra money to have the sleep study. I too got on Craigslist and found a REMstar plus w/ c-flex machine and the mask with only 78 hours on it for $200.00. I was able to get the Home Care Provider instructions off of ebay for it and last night was my first night using it. I started at the lowest ramp setting, and set the air pressure at 7. Thought I would do the trial and error. It was awesome. I did wake up twice without the mask, but I put it right back on. My husband asked me this a.m. how I slept, and I said "you tell me-was I snoring like a freight train?". NO SNORING!!! I am so excited I can't wait to go to bed tonight! So can anyone tell me how long it takes to really feel the effects of the cpap? I've heard people once they've started on therapy have more energy, can think clearly, are not so irritable, etc. I just can't wait!!! Is it true?
Does anyone have any advice for me? I've done loads of research, but what actual users have to say is always more inspiring and helpful.
Thank you so much for letting me tell you my story. I am so excited!!!

[roster]

My brother has done the same thing. Got a machine off craigs list and is messing with the pressure till he finds the best one for him self. He has no insurance and would not be able to do this any other way. ........

In my experience that "messing" is pretty much what the sleep labs do. They do often stop short of "finding the best pressure" because their shift ends. Just write down a guess and go home.

[rested gal]

Thank you so much for letting me tell you my story. I am so excited!!!

You have good reason to be excited, Cindy!

You're on the road to improving your health. Might take awhile, but you've done the right thing for yourself, imho, if a sleep study was completely out of reach.

Just keep digging in with your research, and ask questions any time you want to. It would be a good idea to register (free) on this message board, so that you can send and receive Private Messages.

Welcome!

[Bookbear]

Gravydog, good on ya!! You've take a giant step towards better health.

One point. When making changes in your treatment, change one thing, and give it some time, say a week, before deciding to make more changes. One or two nights just isn't a long enough time to get a good view of what's happening. There are so many things that affect our sleep. Things like congestion or emotional states or sleep position could skew data for a night; so letting a change run for a week helps give a more accurate picture of how you are responding to the change you made.

Good luck!

[roster]

....... When making changes in your treatment, change one thing, and give it some time, say a week, before deciding to make more changes. ........

That seems to be the majority view here. However, in my case, I was able to self-titrate very quickly using straight cpap. One night at 7.0 cm and I thought the AI was too high. I bumped it over the next three nights, first to 7.5 followed by 8.0 and 8.5. That fourth night at 8.5 got my AHI under 1.0 and I have happily stayed at 8.5 and consistently maintained AHI < 1.0.

I need to add that I force sidesleeping every night. Pressure needs on my back are 19.0 cm so I totally avoid the back.

[Guest]

I'll be very surprised if you hear any of us criticize what you've done -- maybe some mild whining that some of us didn't do the same thing, but that's all.
Marsha

My thoughts exactly.

I had no idea I had OSA, before my doc suggested a sleep study.

Gravydog, good for you. Go for it.....all the best.