New here, looking for advice!

Hello friends!
I'm coming to y'all for help, since my situation is unfortunate and messy. I might catch some flak for this but it's worth a shot. Here's the story. I'm a 26 year old male who has been having issues for the last year or possibly more sleeping, waking up multiple times (which could range from 5 to sometimes 15 times a night), and waking up like I was laying in the truck lane on i95. I would wake up in the morning, even after getting 8-10 hours of "sleep" just feeling like utter crap. It's progressively gotten worse as I put on some weight. I'm in a constant severe brain fog, and have horrid memory issues, come early afternoon, I'm drained and have to rely on energy drinks (I hate drinking them) to somewhat get through the next few hours. No motivation, weight gain, etc. It takes me hours to get out of bed in the morning, and I'm extremely irritable and cranky. When I try to wake up at 6am to go do cardio for a half hour, most days I can't get out of bed, I just fall back asleep. I used to get lost in my imagination, which no longer exists. I used to be in AP and talented and gifted programs, and now I feel like I have the intelligence level of a speck of sand, I feel like I get less intelligent as time goes on. Sometimes I have trouble putting sentences together now. I'm sure everyone is familiar with the way I'm feeling.

The worst part is it's affecting my career and my business. I finally decided I needed to do something about it. So this is where it get's interesting. I went for a physical and got blood work done, and other than my overweight situation (I'm 5'7 and 210lbs, I need to be in the 160s) my blood pressure, all blood tests, disease tests all came back really good. The doctor looked at the back of my throat and said that I had the structure of someone who is very apt to developing sleep apnea. He also said that my tongue is too big for the size of my throat, if that makes sense. He said everything I was telling him was "screaming sleep apnea" to him. So that's fine and dandy. Sleep apnea runs in my family, my mother and grandfather and uncle on my mother's side has it. Awesome.

So here's where it get's messy. Since I waited to finally do something about it and go to the doctor, I had two weeks of insurance left since I was still covered under my mother's insurance. My doctor wanted me to schedule a sleep test at the center, but I couldn't get an appt while I was still covered under my mother's insurance. So here I am, in a job where I don't get any benefits, and where getting insurance is too expensive, unless I take off 3000 from my yearly income, and then my insurance premiums and deductibles are SUBSTANTIALLY cheaper. Without continuing that rant, let's move on.

My mom doesn't use her CPAP machine anymore, so she offered it to me to try and see if I see any improvement in my quality of sleep so I could at least start to take my life back even if the pressures weren't optimally setup for me. She had given me the 900series RemRest Evo T2 or T3, not sure what tier it is, and the humidifier that goes with it. She also included a new ResMed Mirage Activa nasal mask. I attempted to use the system last night, but I'm normally a mouth breather even when my my nose is clear (I used to have terrible chronic allergies due to pets, and since moving down south where I have no pets, I've been surprisingly clear) and it was laborious trying to breathe and exhale through my nose with the mask on, since it doesn't feel like my nose moves enough volume even without the mask for me to be 100% comfortable. (I'm thinking I have some nasal passage issues that will need to wait until I can get insurance again.)

I know that I'll most likely need to get a full face mask (any reccs? I've got a big greek head!), but I also wanted to find out if there was any software and if anyone knew how to unlock this machine to adjust the settings. It has a serial port on the back but no card port. I'd like to just get the ball rolling and sleep, and upgrade to a newer machine in a few months. And I really would love to hear everyone's advice on my very crappy situation, I really just need to start waking up in a better place again so I can start to tackle my life and improve it to get back on top. Any advice would be very much appreciated!

Currently the machine is set to ramp up to 13 on the pressure scale.

Really again, thank you everyone.
-Johnny

Messy indeed!

I was able to chase down the manuals for that machine (I think). That machine is pretty much useless to you as it sits - you'd be about as well off flipping the motor around in your vacuum cleaner and hooking up a pressure gauge to it for the amount of data you'll get from that machine. Best as I can figure, the extent of the data you can get out of that machine is weekly (not even daily) compliance info - whether you used the machine for 28 hours in a 7-day period. No efficacy data whatsoever. (Be glad you at least have a tier 2+ - the tier 1 machine pressure has to be manually set using a manometer.) That might be a passable machine for someone who already knows what pressure to use, but without any form of sleep study or efficacy data, you're basically picking a setting and hoping it works. Everybody is different. Your pressure could be 6, or 20, or in between, or all of the above. You could try to wing it based on how you feel in the morning, but for some people it can take weeks or months to see positive effects of CPAP therapy, so how you're feeling on a given day may not be a good indicator of what your correct pressure should be.

You need one of two things (preferably both, but we're going for absolute need here) - a sleep study (so your doctor can prescribe you a pressure), or a data-capable machine (so you can look at the data and work toward a correct pressure yourself). The people on here can help you in both directions, but without some form of data you could conceivably do yourself more harm than good.

In any case, the manuals I found are here. That has the Dealer, Service, and User manuals for the machine. The dealer manual will instruct you on how to change pressures and whatnot, though again, I don't think it would do you much good right now.

Thanks for the reply Jeff. I think what's going to need to happen is for me to get a newer machine that I can actually analyze the data from, solely for the reason that a sleep study here is going to cost me anywhere from 1700-2200 dollars out of pocket, which is something I definitely won't be doing unfortunately for them to tell me I have it and prescribe me a pressure, then I would need to foot out the money for the machine on top of that.

So if a new machine is what it's going to take that has data analyzing capabilities, what are some of the best machines out right now? I want to make a purchase that will last me for a few years, so I'd rather spend the money up front. Also, do you have any full face mask recommendations?

Thank you Jeff!

JeffV wrote:Messy indeed!

I was able to chase down the manuals for that machine (I think). That machine is pretty much useless to you as it sits - you'd be about as well off flipping the motor around in your vacuum cleaner and hooking up a pressure gauge to it for the amount of data you'll get from that machine. Best as I can figure, the extent of the data you can get out of that machine is weekly (not even daily) compliance info - whether you used the machine for 28 hours in a 7-day period. No efficacy data whatsoever. (Be glad you at least have a tier 2+ - the tier 1 machine pressure has to be manually set using a manometer.) That might be a passable machine for someone who already knows what pressure to use, but without any form of sleep study or efficacy data, you're basically picking a setting and hoping it works. Everybody is different. Your pressure could be 6, or 20, or in between, or all of the above. You could try to wing it based on how you feel in the morning, but for some people it can take weeks or months to see positive effects of CPAP therapy, so how you're feeling on a given day may not be a good indicator of what your correct pressure should be.

You need one of two things (preferably both, but we're going for absolute need here) - a sleep study (so your doctor can prescribe you a pressure), or a data-capable machine (so you can look at the data and work toward a correct pressure yourself). The people on here can help you in both directions, but without some form of data you could conceivably do yourself more harm than good.

In any case, the manuals I found are here. That has the Dealer, Service, and User manuals for the machine. The dealer manual will instruct you on how to change pressures and whatnot, though again, I don't think it would do you much good right now.

Better auto cpap machines are frequently available on Craigslist and offered for sale on this forum at a significant discount. Several new Respironics System One DS560 Auto A-Flex are currently posted on the forum for $400. You might find something as low as $200 here. These are full data machines that will automatically titrate and deliver the therapy you need. That is your quickest and cheapest bet. Full face respirator masks like this Resmed Airfit F10 http://www.amazon.com/ResMed-AirFitTM-F ... +cpap+mask on Amazon will solve your FF needs. Beware of sellers selling components rather than a full system. Usually on Ebay or Amazon you will need to get the mask, frame and straps separately. You are much better off having a prescription and buying from CPAP.com unless you really know your way around these components. Anyway, the linked mask will probably work for you and not require a prescription.

If your primary doctor is willing to work with you, he can write a prescription based on his opinion you may have sleep apnea. He could specify an auto-titrating machine with humidifier and supplies, and you could buy from any low-cost supplier, avoiding the cost of a sleep study. Talk to his office and inquire about his willingness to write a CPAP prescription based on your needs determined from his exam.

Hopefully these options will help and are in reach for you financially. Good luck, and stick around.

Without data capability, and depending on home testing/titration, you'll be sunk, so definitely look into slightly used machines for now at least, but be very sure they give full tracking, not just compliance (helpful to insce. co's, but not you).

Also, what about trying an 02 oximeter - I have a feeling you'll need to know where you stand on that as apnea home tests don't usually cover it... here's a link to the least expensive one that'll do overnites (and the 'Plus" in the name matters).

http://www.coopermedical.com/overnight-pulse-ox

Julie wrote:Without data capability, and depending on home testing/titration, you'll be sunk, so definitely look into slightly used machines for now at least, but be very sure they give full tracking, not just compliance (helpful to insce. co's, but not you).

Also, what about trying an 02 oximeter - I have a feeling you'll need to know where you stand on that as apnea home tests don't usually cover it... here's a link to the least expensive one that'll do overnites (and the 'Plus" in the name matters).

http://www.coopermedical.com/overnight-pulse-ox

A little late to return here, life got in the way and I wound up moving back up to New York!

Anyways, Julie, I took your advice and wore purchased the CMS-50E, and wore it last night for the first time. My Sp02 range was between 88 and 98 the whole night with the average around 92-93 if I had to say. You can see a multitude of instances where my heart rate would jump up 30bpm for a second or two from 65ish to 95ish. My resting heart rate was around 65ish BPM. I can provide the log file if you wish to see it as I'm not really sure how to decipher the data and draw any conclusions. But does it seem time for a APAP machine? I woke up literally like 20 times last night, maybe more, and I feel like trash right now.

When I first put it on, I was up for about 10 mins then fell asleep.
https://www.dropbox.com/s/qoowpcg43a3sv ... 3.png?dl=0

https://www.dropbox.com/s/hf4dv1l2efybj ... 3.png?dl=0

https://www.dropbox.com/s/2hijngram8ywp ... 4.png?dl=0

https://www.dropbox.com/s/jmwa0alnd3rtb ... 0.png?dl=0

Sorry if the pictures are a pain. But they all work.

Thanks all,
John

You can get a slightly used APAP machine from one of the forum members here or if you knew your models really well there might be a good deal on your local craigslist but to use your local craigslist you really have to know which models will give you the data you need.

I think grayghost14 has a couple slightly used machines...and he and some other forum members also have some new machines but slightly used will be a little less costly.

Send me a private message if you want more information on obtaining a new or slightly used machine.

Lots of good ResMed S9 Autosets out there as they launched a new model recently. I got one fully loaded with <250 hrs for $500. This machine is fully data capable and will allow you to self titrate...

Your oxygen levels look pretty good.

The variability in your heart rate is something to watch. If I had to make a guess I would say that you tossed and turned a lot last night.

If you can record a few more nights you will begin to see some trends. This can give you more information than a single night does.

HoseCrusher wrote:Your oxygen levels look pretty good.

The variability in your heart rate is something to watch. If I had to make a guess I would say that you tossed and turned a lot last night.

If you can record a few more nights you will begin to see some trends. This can give you more information than a single night does.

Yeah, like I said I woke up at least 20 times last night. I'll set it up again tonight and see what happens. Anything I should be looking out for?

On your report pay attention to the % Artifacts. You want this to be as low as possible. 0 is great. This means that the fluctuations you see on the graph are not caused by loosing signal through finger movement.

Look at your data from a little before 5:30 to just before 6:00. That is a pattern that suggests that you are barely asleep. Since you are trying to restore your body with sleep, that is a pattern you want to avoid. At about 6:00 you finally drifted off.

Don't be afraid to zoom in on an area of interest. Sometimes looking at a 1 minute interval gives you a little different perspective on things. The rest of the time it's fine to look at a 10 minute interval.

The ideal set up is to record data from a night where when you wake up you are ready to jump out of bed feeling totally refreshed and ready to tackle anything that comes up. This would serve as a benchmark for a good nights sleep.