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My First Thirty Days - denton - 12-24-2014
Greetings all;
I’ve just competed my first thirty days of sleep therapy, and I wanted to check in.
I went about this a little bit backwards (I see I am not alone). I’ve known for some time, via my wife, that I had OSA. But I’ve hated the idea of going to a sleep lab, for a variety of reasons, none of them logical no doubt. I read in the NY Times about home sleep tests, so I prevailed upon my ENT doc to prescribe one. My AHI was 77.
I’m 60, a bit overweight, I do walk 5-10 miles a day in the course of my work (I live in Manhattan) and outside of allergies that I am getting shots for, my only health issue is hypertension. Over the years I’ve had to go from 80mg of Diovan to 160mg, and two years ago, to 320mg. Even then my bp was around 135/90.
I never really felt deathly tired, had issues driving, or had trouble doing my job. I was napping almost every afternoon for 20-30 mins though, on top of the 7.5 hours of sleep I get every night.
So now that we have the home test, the doc wants me to go to the sleep lab for sure to get all the titration info, and I still don’t want to go, and I know she’s not going to get me a scrip for a machine without it. Then there’s the issue with the DME and the insurance company 13 month rental thing, and the compliance issue. So after reading up here and elsewhere, I turn to that old standby of the free marketplace, Craigslist. I find a company who is selling a bunch of new APAP machines and masks from the inventory of a DME that closed down.
The machine is a BMC RESmart auto, a less expensive Chinese-made machine. Not popular here it seems. But it hits all the points, ramp, auto titration, heated humidifier, access to data via a website, etc etc. And best of all, it’s only $200 plus $25 for an Aspen full frame mask (which I need since I breathe thru my mouth when sleeping).
I’ve read somewhere that 30% of users can’t tolerate the mask and stuff, and I’m claustrophobic to some degree, so I’m not sure if I will be one of the 30%. I figure my co-pay to the doc is $30, so if I can’t tolerate therapy at all, I can probably re-sell the machine and come out ahead. If I can tolerate therapy, I can always sell it and get a better machine.
When I got my machine and mask, had no problem setting it up. I was only able to tolerate it for three hours the first couple of nights, but I improved as I went along. Of course I have nothing to compare it against, but the machine seems to do what it is supposed to do. It seems to have a couple of minor glitches; sometimes it throws the same code for a single day, which it shouldn’t. I found that rebooting the machine every day took care of that. I wish it had an actual power switch so I don’t have to pull the plug every day. My AHI has been running between 2 and 5, less lately.
I’ve attached the report the machine gives, if anyone has any comments.
A couple of weeks ago I decided the best upgrade I could do would be a better mask, so I bought the ResMed Quattro full face. Big difference. The double seal and more custom fit has solved the air leakage problems I was having with the other mask. I also went from a six foot hose to an eight, which was a world of difference. I spoon, and I sleep on both my left side and right side. The longer hose gives me the room to move around.
I’m not all the way there yet as I’m having trouble wearing the mask for a full night. I can’t get thru the night without having to urinate at least twice (always had this problem since I was a child). Some nights I will wear the mask the whole night thru, but my typical night is go to bed at 10, wake up 12-1AM and feel a compulsive need to get rid of the mask, which I do. Sometimes I won’t even remember doing it. Then I’ll get up again around 3-4 and put it back on, until the alarm goes off at 5:30. From the stats I posted I am on the mask about 5-1/2 hours a night. However my wife says I am not having that many breathing incidents even without the mask. Hopefully as time goes on I will feel less compelled to dump the mask in the middle of the night.
My sleep patterns tho have been somewhat disrupted. I guess this is a good thing. I no longer feel tired enough to nap in the afternoon, so that gives me back a half hour a day to do something useful. However 1-2 times a week, I’ve been unable to sleep past 3AM. I get up and read, and if I’m lucky, I can go back at 4:30 or so for a last bit of sleep. I guess over time I will be able to either go to bed later or wake up earlier.
My wife reports she is sleeping better, since she is not listening to me hold my breath while kicking me. Lol.
My dreaming has improved. Increasingly, I was having more and more nightmares. I’m having almost none of them now, while the dreams I have been experiencing are better.
Last but not least, my blood pressure has been sinking rapidly. While on 320mg of Diovan, it started to go below even 120/80, so a week ago I started cutting the pills in half (160mg). This morning, it was 125/67, so in a few more days I might try to reduce to the dose again to 80mg. That would be way cool. Be even cooler to get off it altogether.
Thanks everyone, it is a pleasure to be here with so many helpful people!
PS: I told my ENT doc about by bootlegging the machine, and thought she would be annoyed at me. But I brought my stats with me and she was quite happy. In fact she wrote me a scrip so that I could file a claim for machine and mask with my insurance company. Don’t know if they will pay, but we’ll see.
Denton
PPS: I'm having some trouble with the attachment so if that doesn't work here is a link to the image of the machine data.
pbase.com/dentontay/image/158622411
RE: My First Thirty Days - PollCat - 12-24-2014
How about completing your user profile, so the rest of us get a quick idea before we respond.
RE: My First Thirty Days - denton - 12-24-2014
(12-24-2014, 01:48 PM)PollCat Wrote: How about completing your user profile, so the rest of us get a quick idea before we respond.
Done, thanks.
RE: My First Thirty Days - DeepBreathing - 12-24-2014
G'day Denton, welcome to the forum.
It looks like you're off to a good start, with good AHI at a comfortable pressure and reasonable (and improving compliance). And it sounds like you're passing the most important test: How do you feel?
Pulling the mask off during the night is very common - we all do it. As you said, most people get more accustomed to the mask and that's a problem which largely goes away. I think mask leaks and too-tight headgear are likely the main causes for demasking, so pay some attention to that aspect. You'll probably find the need for toilet breaks will reduce as well - I wasn't aware of it, but the arousals due to apnea actually cause your bladder to work overtime. That was an unexpected and pleasant side effect of therapy - no toilet breaks.
I don't know what data files the BMC machine uses or whether they're readable by SleepyHead software. If you can get the data into SleepyHead it will give you a much more detailed account of what's happening on a breath-by-breath basis. This can be really helpful in tracking down problems and fine tuning your therapy. On the other hand, the BMC software gives you the bare basics which may well be enough if you pass the "How do you feel" test.
Keep up the good work, and have a very happy and safe Christmas and New Year.
RE: My First Thirty Days - denton - 12-24-2014
(12-24-2014, 05:47 PM)DeepBreathing Wrote: G'day Denton, welcome to the forum.
I don't know what data files the BMC machine uses or whether they're readable by SleepyHead software. If you can get the data into SleepyHead it will give you a much more detailed account of what's happening on a breath-by-breath basis. This can be really helpful in tracking down problems and fine tuning your therapy. On the other hand, the BMC software gives you the bare basics which may well be enough if you pass the "How do you feel" test.
Keep up the good work, and have a very happy and safe Christmas and New Year.
Thank you! I did download the sleepyhead software, and it doesn't read the data as far as I can tell. It's not a popular machine, it seems. But as I said, if I run up against the limits of what I can do, I'll sell it and get a better one.
RE: My First Thirty Days - trish6hundred - 12-24-2014
Hi denton,
Sounds like you are doing well for having just started with CPAP.
To help your body get used to the mask, mask up and use the machine during the evening as you read or watch tv.
Hang in there for more responses to your post, Mmuch success and keep up the good work.
RE: My First Thirty Days - vsheline - 12-27-2014
(12-24-2014, 06:16 PM)denton Wrote: I did download the sleepyhead software, and it doesn't read the data as far as I can tell. It's not a popular machine, it seems. But as I said, if I run up against the limits of what I can do, I'll sell it and get a better one.
Hi denton, welcome to Apnea Board!
You might want to save your insurance reimbursement for use on a machine which will provide more data, so you will be more able to optimize your treatment.
Here are recommendations for what to look for in a machine:
http://www.apneaboard.com/wiki/index.php?title=Archangle:Machine_Choices
Take care,
--- Vaughn
RE: My First Thirty Days - lab rat - 12-28-2014
Well done. It took me 6 MONTHS to wear a mask all night without pulling it off.
I went through EXACTLY what you have experienced. Pulling it off without realising it then later putting it back on until I woke up.
I'll say this though, that even using it 1/2 the time made SUCH a difference to my life that I was hooked. There was no going back to where I started, in fact I often lay there in the morning with tears running down my cheeks thinking how wonderful it was and longing for the day I didn't take it off. Thats why I recall that night so well, waking up with the mask on and just being so happy..
And about 2 years later I went to a seminar run by the local Sleep Clinic where they told us the average life expectancy of somebody with Obstructive Sleep Apnea is 7 years if untreated. The build up of sleep and oxygen deprivation as well as stress on the heart and lungs to gasp for air and keep breathing leads to degeneration of both as well as a 100% chance of stroke and/or heart attack.
So yeah... lol
RE: My First Thirty Days - BlueHorseshoe - 12-29-2014
(12-28-2014, 08:00 AM)lab rat Wrote: And about 2 years later I went to a seminar run by the local Sleep Clinic where they told us the average life expectancy of somebody with Obstructive Sleep Apnea is 7 years if untreated. The build up of sleep and oxygen deprivation as well as stress on the heart and lungs to gasp for air and keep breathing leads to degeneration of both as well as a 100% chance of stroke and/or heart attack.
This is very disturbing. I have read many studies of increased risks of untreated OSA but none that said avg 7 years life and 100% chance of stroke and/or heart attack. Can you site this study and source? Assuming this wasn't just a 'scare tactic' I would like to use this information to help other family and friends who I suspect have undiagnosed sleep apnea to seek medial testing. Wow, I am so thankful that I am treated now. Thank you very much. Dan
RE: My First Thirty Days - denton - 12-29-2014
(12-28-2014, 08:00 AM)lab rat Wrote: And about 2 years later I went to a seminar run by the local Sleep Clinic where they told us the average life expectancy of somebody with Obstructive Sleep Apnea is 7 years if untreated. The build up of sleep and oxygen deprivation as well as stress on the heart and lungs to gasp for air and keep breathing leads to degeneration of both as well as a 100% chance of stroke and/or heart attack.
So yeah... lol
Thank you LabRat (and everyone) for your comments and helpful tips. Now if I can just fix the bridge of my nose.... lol.
I think I've probably gone ten years before getting treatment and I'm still here and except for the hypertension (which is now going down) I'm in pretty good shape. I've had two echocardiograms and three EKGs in the last year or so (cuz doctors get paid now by ordering tests.) Having said all that, I should have taken care of it a long time ago. But better late than never.