very frustrated vent---what would you do?

yellowcason · Post by **yellowcason** » Fri Jul 11, 2008 9:57 pm

I was diagnosed with OSA at long last almost 4 years ago now. I have also used the cpap religiously since then. It has never really made much of a difference for me as far as me being tired and falling asleep durring the day. I have great sleep hygene so getting enough sleep is not the problem. About a year ago I broke my mask and couldnt afford one so I didnt use the CPAP at all during that time.
I was doing ok without the cpap and was really not all that tired during the day...I actually felt better than I had in a long time.

A few weeks ago I finally got a new mask. I wanted to get back on CPAP becasue of what apnea can do in the long term. But the funny thing is that since I started using the cpap again I am so tired...i cant stay away for anything during the day. I was better off of it than on it. How is this possible? I did some google searches and found a few people asking the same thing - they want to know why they got worse after starting cpap.

(I dont become eligable for my husbands work insurance till november so dr. and more tests are out till then)

Rebecca

ozij · Post by **ozij** » Fri Jul 11, 2008 10:15 pm

It must be dreadful not be able to afford a even a mask!

A sleep study is a snapshot of one night - and it might miss.

You may be feeling worse because your mask doesn't fit.

You may be feeling worse because the pressure recommended for your use after that one nights snapshot is either too high or too low - this happens to many people.

There are no two ways about it, you have to find a way of figuring out if your pressure is right, by using a date recording machine and software for at least 2 weeks.

I don't know if "I couldn't afford a mask" means "I would no have had food for my child if I bought a mask" or it means "well, actually I had other priorities...." but if it was the latter, try to remember that in the long run, the harm done to you by the low oxygenation will turn out to be far more expensive, even financially, than any money you spend on the therapy today.

I hope you do find a solution.

O.

O.

yellowcason · Post by **yellowcason** » Fri Jul 11, 2008 10:29 pm

Food for the kids was the problem. We hit a really rough patch for a while but its getting better. Insurance is coming in Novemeber.

Im sure my mask fits...I had it fitted professionaly this time around.
I think that there may be some things...i was on some medication when tested that I am not on now. Position....I now sleep on my back - which is supposed to make things worse right...but when I dont use cpap I sleep on my stomach. I belive that i was tested on my stomach to. If they had told me that once i was to use a mask I wouldnt be able to sleep on my stomach they probly would have gotten a better reading
I unfortuantly dont have software...I need to start over from scratch. My sleep study stated that it was not sufficient right in the transcript. ( but still had to pay full price for it!!!!!!)

ozij · Post by **ozij** » Fri Jul 11, 2008 10:47 pm

It does sound like your pressure isn't right.

Research has shown that people can adjust their own pressure properly even without software

Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?

This study demonstrates that patients with OSA are capable of effective self-titration of CPAP treatment at home. The optimal CPAPs, defined by self-titration and by manual in-laboratory titration, were similar. Improvements in both subjective and objective outcome measures were fairly consistent and were similar in magnitude between self-titration at home and manual in-laboratory CPAP titration during overnight polysomnography. There was no clinically significant difference in any measured outcome between the two CPAP treatment modalities, and compliance with CPAP treatment was highly satisfactory on both study limbs.

<snip>
There was a marked improvement in sleep continuity associated with reduction in the AHI and also a marked improvement in the nadir of the oxygen saturation during sleep with treatment

(my emphasis)

Should you want to try that, you have to use the "secret key combination" on the PB.

Setting the device
To restrict patient access to certain settings on the GoodKnight 420 Evolution, and allow complete access to the settings by the physician or home care provider, a hidden key has been provided on the device. It is located under the letters “Go” in the “GoodKnight” name and detectable to the touch as a hollow.

The parameter values may be changed using the ON/OFF (up) key and Ramp (down) key
<snip>
To access the settings, press simultaneously the hidden key and then the Information Access key for one second.

The information access key is the left most button on the 420E

To exit the parameter setting menu, press again the information access button.

I assume it is the same for the 420G.

Should you decide to change your pressure without consulting a doctor, use the smallest increments you can on your machine, and stick to a setting for a minimum of 3 nights before you make further changes.

I'm sorry you had such a rough time, and glad things are getting better now - I hope they'll be getting better with your therapy too!

Good luck,
O.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): 420G, Ramp

graygables · Post by **graygables** » Sat Jul 12, 2008 1:39 am

I feel your pain, both financially and physically! I just started CPAP about 5 weeks ago and I'm more tired, too. I'm wondering if it's just having this THING on my face that is keeping me from getting any sleep. It's exactly how I felt during my sleep study...WHAT sleep?!? It's 340am and I'm up b/c I couldn't stand the mask on my face anymore...

echo · Post by **echo** » Sat Jul 12, 2008 4:19 am

Have you checked that you're not mouth breathing/leaking as well? Even if you weren't before, it might be a problem now. Dry mouth? Feeling like animal crawled in there and died?

I woud venture to say that your pressure needs are higher on your back than on your stomach, but you'll have to determine that for sure.

Ozij's tip also works for the 420G - just use the hidden button under the Go and the Info access button at the same time. To cycle through the different possible settings that can be changed, press the information access button. You can change the ramp time, the ramp pressure, the set pressure, reset the total usage time, and I think that's it.

I'm sorry to hear about the financial difficulties, it's really sad that in this country our health has to take a back door, and "feeding the kids" is not something everyone can take for granted.

Good luck!!

echo · Post by **echo** » Sat Jul 12, 2008 4:20 am

yellowcason wrote:I unfortuantly dont have software...I need to start over from scratch. My sleep study stated that it was not sufficient right in the transcript. ( but still had to pay full price for it!!!!!!)

Do you mean that you didn't sleep long enough in the study for them to determine the right pressure? What was it that was not sufficient?

KansasRT · Post by **KansasRT** » Sat Jul 12, 2008 6:15 pm

You said that you had your sleep study 4 years ago. Have you had any weight gain or loss since then? Anything over 10 pounds is signifigant. I have alot of patients that are financially unable to get another sleep study. What we do is loan them an APAP for a few weeks to determine a pressure. You need a script from a Doctor, but there is no charge for the trial. This can tell you if your pressure is OK. You can then reset your cpap to the correct pressure.

kteague · Post by **kteague** » Sun Jul 13, 2008 7:05 am

Just a thought... Do you think you would do better on cpap if you could sleep on your stomach? If you are by habit a stomach sleeper but sleep on your back on cpap due to the mask, that could contribute to not sleeping well on cpap. I've read that apneas are fewer when stomach sleeping. Maybe a sleep tech who has seen a lot of these can speak to that. But if your pressure is wrong and you are sleeping in an unnatural position, that's a recipe for poor sleep.

I really wish those who give people masks would give more (any) attention to getting a patient a mask that is suitable to their sleep style instead of telling them to accomodate the mask. This can be hard enough to adjust to without having to change the position in which one has slept for a lifetime. There are masks and pillows that can make stomach sleeping possible. If you feel it would make any difference, it may be worth looking into.

myapapismadhot · Post by **myapapismadhot** » Sun Jul 13, 2008 8:59 am

Do you exercise? Has losing weight over the course of the last four years helped?

atruvirgo · Post by **atruvirgo** » Sun Jul 13, 2008 11:04 am

I sleep deeper on CPAP but wake up more tired. I don't know why this would be the case. Any buddy out there have an explanantion???

GumbyCT · Post by **GumbyCT** » Sun Jul 13, 2008 11:23 am

KansasRT wrote:You said that you had your sleep study 4 years ago. Have you had any weight gain or loss since then? Anything over 10 pounds is signifigant. I have alot of patients that are financially unable to get another sleep study. What we do is loan them an APAP for a few weeks to determine a pressure. You need a script from a Doctor, but there is no charge for the trial. This can tell you if your pressure is OK. You can then reset your cpap to the correct pressure.

I like this idea - the DME would also have the software & reader too. I think its the fastest way to get it right & much better than another sleep study. Then you could follow-up with Ozi's idea - which is also a good one. Just don't wait for yrs again.

Let us know how you make out.

Good Luck,
GumbyCT

gasp · Post by **gasp** » Sun Jul 13, 2008 3:50 pm

It took a bit of doing, but I learned to sleep on my side which results in my best numbers on XPAP.

I'm glad you're doing better and that you will have insurance in November. I'm sure you must have already looked into social services in your area that are designed to help feed families with children.

very frustrated vent---what would you do?

very frustrated vent---what would you do?

Mask choice

Tired too!

Mask

Additional Comments: AHI 23, oxygen desat. 78%, pressure 10, age 27

Mask	Humidifier

Additional Comments: Pursleep, Padacheek, Regenesis™ Pillow, Neti Pot, Travel Buddy hose hanger